NNENNAYA NJOKU CHAP1-5Clean Copy ORIGINAL

A PHENOMENOLOGICAL STUDY OF NIGERIAN PRIMARY CAREGIVERS’

EXPERIENCES IN ACCESSING SUPPORT FOR FAMILY MEMBERS WITH

ALZHEIMER’S DISEASE OR RELATED DEMENTIA

by

Nnennaya Njoku

KATHLEEN F. JOHNSON, Ph.D., Faculty Mentor and Chair

HEATHER MILLER, Ph. D., Committee Member

LINDA SAMUEL, Ph.D., Committee Member

Suzanne C. Holmes, DPA, Dean, School of Public ServiceLeadership

A Dissertation Presented in Partial Fulfillment

Of the Requirements for the Degree

Doctor of Philosophy

Capella University

March 2015

© Nnennaya Njoku, 2015

Abstract

Alzheimer’s disease or related dementia is a long-lasting,

devastating disease that currently affects approximately 44

million people worldwide. The majority of these people are

being cared for at home by family caregivers who are known

to encounter several challenges. Primary caregivers from

undeveloped countries, including Nigeria, in particular

experience more barriers than do other groups of caregivers

in developed countries. This study explored the lived

experience of Nigerian primary caregivers caring for someone

with mental deterioration from demented related disease. The

purpose of the study was to close the knowledge surrounding

this topic, while also providing additional research on the

caretaking experiential information that could later be used

to design tailored support and resource programs for

Nigerian primary caregivers. The researcher used a

qualitative, phenomenological design to answer three

research questions and seven interview questions. Ten

participants aged 50-74 from two Presbyterian Churches in

Umuahia, Abia State, Nigeria were selected by purposive

sampling to share their deepest descriptions of experience

during semistructured interviews, which were audiotaped and

then transcribed, analyzed, and coded. The data analysis

was conducted by using Moustakas’s modified van Kaam method.

From the data analysis, eight major themes emerged: (a)

something is wrong, (b) lack of resources, (c) health issues

and financial difficulties, (d) obligation and resignation,

(e) insufficient medical professionals, (f) loss, (g) lack

of resources, and (h) getting support from family members,

friends, and church members. An unforeseen finding was that

all of the participants who were caring for family members

with Alzheimer’s disease or related dementia were in similar

conditions found that walking to the market place and going

to prayer meeting or bible studies was a therapeutic way to

reduce tension. The findings also led to recommendations for

the need for healthcare planning early in the disease

process. Policy implications included the need for public,

churches, the State Ministry of Health, nurses, and other

health care professionals to raise educational awareness on

Alzheimer’s disease or related dementia. Therefore it is

vital to underline the need for some educational awareness

on ADRD within communities. Further studies can explore the

experience of caregiving during the early diagnosis period

and the morals and patterns of health care decision-making.

Table of Contents

List of Tables iv

CHAPTER 1. INTRODUCTION TO THE STUDY 1

Introduction to the Problem 1

Background of the Study 4

Statement of the Problem 7

Purpose of the Study 9

Nature of Research Design 10

Research Questions 12

Rationale for the Study 13

Significance of the Study 15

Definition of Terms 16

Assumptions 19

Limitations 20

Expected Findings and InvestiGRACEtor’s Perspective 22

Chapter Summary 24

OrGRACEnization of the Study 25

CHAPTER 2. REVIEW OF THE LITERATURE 26

Introduction 26

i

Alzheimer’s Disease or Related Dementia 27

Stages of Alzheimer’s Disease 31

The Nature of Caregiving 32

Caretakers of Those with ADRD 36

Brief History and Culture of Nigeria 43

Role of Culture in Mental Health 44

Stigma 47

Theoretical Framework 51

Chapter Review Summary 60

CHAPTER 3. METHODOLOGY 62

Purpose of the Study 62

Research Design 63

Target Population: Selection and Sampling Procedures 67

Setting 70

Instruments/Measures 71

Data Collection 74

Data Analysis 79

Ethical Considerations 82

Limitation of the Methodology 85

ii

Chapter Summary 86

CHAPTER 4. DATA ANALYSIS AND RESULT 88

Introduction 88

Researcher’s Interest in the Phenomenon 90

Description of the Sample 91

Data Analysis 113

Summary 128

CHAPTER 5. RESULTS, CONCLUSIONS, AND RECOMMENDATIONSS 131

Introduction 131

Summary of Results 131

Discussion of the Results 133

Discussion of the Conclusion as Related to the

Literature 139

Limitations of the Study 151

Implications for Practice, Education, Policy, and

Research 152

Recommendations for Future Research 158

Conclusion 160

REFERENCES 163

iii

iv

List of Tables

Table 1. Demographics of Study Sample 93

Table 2. Age, Marital Status, and Health Issues of the Participants 94

Table 3. Care Recipient Age, Relationship of Participant to Care Recipient, and Care Recipient 96

Table 4. List of Significant Statements of the Experiences of Nigerian Primary Caregivers for Loved One with ADRD 116

Table 5. Identified Themes 117

Table 6. Themes and Descriptions of the Lived Experience Of Nigerian Primary Caregivers 121

v

CHAPTER 1. INTRODUCTION TO THE STUDY

Introduction to the Problem

Caring for someone with Alzheimer’s disease or related

dementia (ADRD) involves continuous supervision of the

individual, coordination of numerous medical and social

service disciplines to monitor mental and physical health,

and use of several respite and financial resources

(Alzheimer’s Association, 2013). To meet these needs,

multiple home health services, community agencies, respite

care, and adult care facilities have been created all over

the world. And while those services are in place, informal

caregiving is the primary source of care for 70% of people

with ADRD because most of those patients live at home under

the care of relatives or friends (Alzheimer’s Association,

2010). Moreover, available services are dependent on where

one lives, and these services are often not accessed either

because caregivers lack of awareness of their existence or

1

they are unwilling to seek additional care services (Padilla

& Villalobos, 2007). The fact that the type of care one

receives is directly related to the location and the economy

of the country in which one lives is profound and it should

come as no surprise that there are differences in caretaking

between developed and developing countries. The purpose of

this study was to explore the lived experience of how

Nigerian primary caregivers access support for their loved

ones with ADRD.

Research pertaining to ADRD is not exempt from being

examined in a way that highlights the differences in

addressing these diseases and accessing adequate support on

a global scale (Hess-Wiktor & Opoczyńska, 2012). For

instance, in developed countries, most ADRD cases are

generally expected to receive medical diagnosis and regular

care by a physician. In many cases, these individuals are

referred to specialists like neurologists, geriatricians, or

psychiatrists. The options are more limited in developing

countries like those in Sub-Saharan Africa because the

2

people there do not have physicians specializing in the care

of ADRD patients. Also, many developing countries do not

have home health services or specialized facilities in place

to care for ADRD patients because their governments do not

have provisions for the medical care of older people. The

responsibility for the care of elders rests solely with the

family.

This problem is further complicated when there is a

heightened level of fear and social stigma associated with

mental illness in the developing world. Such fear and stigma

are due to lack of education which prevents family members

from consulting with a physician in rerds to the failing

memory, deteriorating speech, or increasingly bizarre

behavior of their elderly family member suffering from ADRD

(Antigoni, Stavros, Aggeliki, Dimitrios, & Dimitrios, 2012;

Graham, 2009). However, regardless of whether one lives in

a developed or developing country, a diagnosis of ADRD

affects the lives of the loved one who receives the

diagnosis and dramatically impacts the lives of family

3

members who would ultimately live with and care for their

loved ones with ADRD and how they can get outside support

(Heber & Shulz, 2006). There is a need in developing

countries to explore and understand the experiences of these

caretakers so that they can have readily available

information and support to provide the best care for those

with ADRD.

Dementia, like other illnesses associated with

psychological impairment, is viewed as a serious stigma. In

the developing countries, ADRD as well as other mental

conditions are not conceptualized as medical conditions

(Pescosolido, Tait, Medina, Martin, & Long, 2013; Sayegh,

2013). Because the symptoms observed are viewed as a normal

part of aging or even a “spiritual attack” on the affected

individuals, those suffering from dementia rarely seek

medical attention. Treatment of those with ADRD in

developing countries is lacking for several reasons. First,

there is little to no organized training on dementia

recognition and management at any level of the health

4

service. Also, there is no constituency to place pressure on

the government or policy makers to provide more

responsiveness to ADRD services. Finally, families acting as

the main caregivers for their elders do so with no support

or understanding from government or healthcare providers

(World Alzheimer’s Report, 2012).

As a developing country with an emerging economy,

Nigeria is bound to be affected by this demographic shift.

The existing state of services provided to older adults with

ADRD in Nigeria is inadequate (Ogunniyi et al., 2005). Older

people in Nigeria with ADRD often do not receive the care

that they need from either the government or their family

because dementia due to Alzheimer’s disease is a term

unknown to many Nigerians. Memory loss is considered part of

the normal aging process, so taking extra steps to seek out

the root cause of the memory loss is of limited concern for

most Nigerian caregivers. Accessing appropriate help from

health care professionals may be hindered if primary

caregivers are unaware of available services, if they feel

5

as if the specialized care for ADRD is not appropriate for

them, or if the service-givers continue to be unaware of the

needs of ADRD patients in their communities (Alzheimer’s

disease International, 2014). Thus far, the Nigerian

government has provided minimal support for those with ADRD

because culturally speaking, the care of the elderly has

always been the sole responsibility of the family.

Currently, no research has been conducted in connection with

Nigerian primary caregivers’ experience in accessing support

for family members with ADRD, which adds to an already heavy

burden of having little governmental or community support.

This paucity of research presents a substantial gap in

knowledge needed for ADRD patients’/caregivers’ help seeking

in Nigeria. Addressing this issue can result in the

increased understanding of ADRD in the Nigerian community.

Background of the Study

Alzheimer’s disease is the most common form of

dementia, accounting for projected 60% to 80% of all

dementia cases (Alzheimer’s Association, 2010). Symptoms

6

must include a decline in memory and at least one of the

following cognitive abilities: ability to generate coherent

speech or understand spoken or written language; ability to

recognize or identify objects, assuming intact sensory

function; ability to execute motor activities and

comprehension of required tasks; ability to think

abstractly, make sound judgments, and plan and carry out

complex tasks (Alzheimer’s Association, 2010). Alzheimer’s

disease has a pattern of deterioration that can last as long

as ten years. It develops from a stage of mild cognitive

impairment and memory loss to a progressive deterioration in

ability to perform activities of daily living (Alzheimer’s

Association, 2010). As the disease progresses, the

individual may also have personality and behavioral changes.

According to Uwakwe et al. (2009), 8% of the world’s

elderly population lives in Sub-Saharan Africa, which

translates to 55 million adults aged 60 and over in 2010,

projected to rise to 213 million in 2050. McCabe (2008)

7

reported that all three surfaces of life are psychological,

biomedical, and social are affected by Alzheimer’s disease.

Alzheimer’s disease is an upsetting illness for patient and

their families. This terminal illness increases the

emotional, physical, and financial burden related with care

for the individual with this disease (Patterson et al.,

2008). Research continues to specify that caring for someone

with ADRD has adverse health outcomes for the caregiver, and

has been associated with high levels of depression (Braun,

Mura, Peter-Wight, Hornung, & Scholz, 2010; Stone & Clemens,

2009). As people continue to age and need more medical care,

the impact of caregiver burden becomes more relevant (Stone

& Clemens, 2009).

Caring for individuals with ADRD is universally a

formidable problem that is both demanding and the causing

much distress. Public policies on the care of the elderly

are poorly developed in Nigeria as in many Africa countries

in the Sub-Saharan region. There is lack of Alzheimer’s

disease awareness; therefore, the social stigma associated

8

with mental illness and cultural belief system can be a

challenge and a barrier for caregivers in accessing medical

help for a loved one with ADRD. In the United States alone,

the Alzheimer’s Association (2013) estimated about 5 million

people living with the disease; however, there are more than

15 million caregivers, 15% of them who are providing care

from a long distance. In 2012, caregivers spent over 17

billion hours of uncompensated care that was valued to be

$216 billion.

In Nigeria, Okoye and Asa (2011) studied the physical

and emotional toll on caregivers of people who often have

ADRD. They found significant relationships to stress of

factors including age of caregiver, and education level for

both elderly and caregiver. Regardless of age, few

caregivers were prepared for the level of commitment

involved in caring for family members with ADRD. So much

time had to be devoted to caregiving that the caregivers had

to neglect their own physical and mental health and had

little time for personal needs. According to Kirschner and

9

Cram (2006), the obligation of caregiving for a loved one

with ADRD is on the rise. Researchers believe that this rise

is because of people living longer, the increase in medical

care, and the increasing number of individuals diagnosed

with ADRD (Hebert & Shulz, 2006; Johnson, 2006; Keenan,

Culter, & Chernew, 2006). In the United States, it is

predicted that the number of people that will live to the

age of 85 will rise to 20 million by 2050, and the number of

people registered in Medicare will also rise by 36 million

people will join between 2000 and 2030 (Center of Medicare

and Medicaid Services, 2010).

ADRDs are chronic and devastating and negatively impact

the lives of about 35.6 million patients and their families

worldwide with a projected increase to 65.7 million by 2030

and 115.4 million by 2050 (World Health Organization [WHO],

2012). Much of this increase will be in the developing

countries due to their aging population. More than half of

this population (58%) lives in developing or middle-income

countries. The geographic projection for 2050 is over 70%.

10

Treating ADRC is at $604 billion globally and includes both

social and health care and loss of income for both patients

and caregivers (WHO, 2012).

In Nigeria, medical costs are high in relation to

income, with a national minimum wage of only 18,000 Naira or

$125 USD per month. With no health insurance system in

place, these treatment costs mainly come out of a family

member’s pocket. Uwakwe et al. (2009) stated that the

government-run primary healthcare services in Nigeria are

free but are only utilized by 2% of the population. The

government healthcare hospitals are of poor quality.

Further, because there is no form of healthcare insurance,

traditional health services like understaffed clinics are

widely used. The unemployment rates, high illiteracy rate,

and low government pension coverage make it difficult for

individuals to pay for their treatment. National policies on

aging and mental health have had little recognition in the

country (Uwakwe et al., 2009). Therefore, it is difficult

for caretakers of those with ADRD to access proper care for

11

their loved ones or get enough outside support in the

current situation in Nigeria.

Statement of the Problem

There is a direct correlation between aging populations

and ADRD in that the percentage of the people who suffer

from these diseases will increase as the elderly population

increases (Berk, 2010; National Institute on Aging, 2011-

2012). WHO (2012) reported that there are presently about

35.6 million people affected with Alzheimer’s disease

worldwide. By 2030, this figure will be three times as high,

and much of this increase will be in the developing

countries due to the aging population (WHO, 2012). Because

Nigeria is a developing country, it is bound to be affected

by this demographic shift. Based on available literature,

dementia, like other illness associated with psychological

impairment, is viewed with a serious stigma in developing

countries. Therefore, much research has to be done, not only

on those affected by ADRD but also the caregivers who

experience many challenges associated with this growing

12

phenomenon. The purpose of the present qualitative study

was explore the experiences of those who care for loved ones

with ADRD to understand their successful strategies and what

barriers they face every day (Bohman, van Wyk, & Ekman,

2009; Hays & Wood, 2011, Wertz, 2014).

In an African model of disease causation, negative

forces in the form of witchcraft are given a prominent role.

Mental illness, in particular, is believed to be caused by

“evil spirits” that are not amenable to the usual

therapeutic tools employed in Western medical practices.

Different cultures have various belief systems about

witchcraft, but all are agreed that witchcraft is a potent

force that is capable of negatively impacting one’s

emotional or psychological wellbeing. Ogunniyi et al. (2005)

conducted a study comparing the care patterns in developing

countries (Yoruba ethnic group in Nigeria) and in developed

(African-Americans in Indianapolis) countries for

individuals with dementia. In the Nigerian experience,

family members whose loved ones are experiencing mental

13

deterioration or related dementia do not normally take their

loved ones to hospitals or health facilities because they

want to avoid family embarrassment. They also do not believe

that the hallucinations and delusions their loved ones are

experiencing can be treated with drugs. Others in the

community may refer to this possession as witchcraft, and

such individuals may instead be referred to “spiritual

healers” to be exorcised of their “evil spirits” (Ogunniyi

et al., 2005).

In Nigeria, the health care system is very poor, and

there are no general health insurance systems. Traditional

health services are widely used such as spiritual healing

and herbal medicine. National policies on aging and mental

health have little practical effect (Uwakwe et. al, 2009).

Because there are such limited data about the Nigerian

experience, it is not known how Nigerian primary caregivers

access support for their family members with ADRD. This lack

of research presents a serious gap in the knowledge needed

for assessing support for individuals with ADRD and their

14

caregivers in this culture. Addressing this issue in Abia,

one Nigerian state in the southeast of the country resulted

in increasing understanding of ADRD for the Nigerian

community.

Purpose of the Study

The purpose of this phenomenological study was to

explore the lived experience of how Nigerian primary

caregivers access support for their loved ones with ADRD.

This study was important in understanding both primary

caregivers’ successful strategies and their roadblocks in

getting care for their loved one(s) with ADRD. By

investigating the lived experience in this way, the shared

experience of multiple occurrences that bring about

transferability with people with the same problems and

relationships in the phenomenon could be identified

(McGloin, 2008; Stake, 2006). According to Duggleby,

Williams, Wright, and Bollinger (2009), caring for someone

with ADRD is allied with physical, psychosocial, and

spiritual stress. This stress frequently results in

15

increased risk for depression disorders, sleep disturbances,

and cardiovascular disease.

Professional literature has reported that the number of

individuals with ADRD is low in Africa because some

physicians misdiagnose Alzheimer’s disease by referring to

the condition as senility. Others refer to socioeconomic

realities and the lack of awareness of ADRD in the

population studied. Uwakwe (2000) found early on that there

were no studies that focused on the experiences that

Nigerian primary caregivers face in access support for

family members with ADRD; moreover, no more than a handful

of related studies have been conducted up to the present.

This paucity of research presents a serious gap in the

knowledge needed for assessing support for individuals with

ADRD patients and caregivers in this culture. An in-depth

qualitative study with rich details provided by those who

have life experiences of caring for loved ones with ADRDs

should have laid a solid foundation for creating awareness

of the social stigma and the challenges. These issues would

16

include the fear of seeking support caused by the

traditional cultural practices used to address mental

illness in Nigerian communities as well as addressing the

lack of knowledge concerning ADRD in Nigerian folklore.

Nature of Research Design

The purpose of this qualitative study was to “establish

unambiguous links between a researcher’s abstract ideas and

empirical data” (Neuman, 2011, p. 207). In choosing a

suitable research method, Creswell (2009) posited the

importance of the purpose of the study, the target

population, the research problem, and the research question.

To gain an understanding of the individual knowledge that

Nigerian primary caregivers face in accessing support for

their loved one with ADRD, a qualitative study was the best

methodological choice (Gergen, 2014). Such a study focused

on exploring and understanding the phenomenon of the lived

experience that Nigerian primary caregivers face (Baré,

2010; BMC, 2011; Lasch et al., 2012; Leedy & Ormond, 2013;

Mertens, 2010). This study used a qualitative,

17

phenomenological approach to explore the lived experiences

of Nigerian primary caregivers on how they access support

for their loved ones with Alzheimer’s disease. Using

semistructured interviews and open-ended questions, I

explored the subject meaning of such support for their loved

ones.

Creswell (2009) defined qualitative research as a

procedure in which researchers depend on the viewpoint of

participants to collect, analyze, and classify data to form

themes and to conduct subjective inquiry. The purpose of a

qualitative study is to interpret and make sense of the

experiences of individuals subjectively instead of

describing or explaining the relationship between the

variables surrounding the event, as in a quantitative

approach (Creswell, 2009). The thrust of the qualitative

method is to trace a nonlinear research pathway to highlight

the details of the social experiences of a particular group

(Chen, 2012; Neuman, 2011) with the emphasis being more on

quality of data and less on quantity of data (Flood, 2010;

18

Gagliardi & Dobrow, 2011). Using a quantitative research

method would have offered information of the behavior

instead of the actions that surround the phenomenon.

The use of a qualitative method offers research designs

that allow a researcher to explore and understand a

phenomenon. According to Merriam (2009), the four

qualitative designs are phenomenology, case study,

ethnography, and grounded theory (Marshall & Rossman, 2011;

Starks & Trinidad, 2007). After developing the purpose of

this study, the research problem, and the primary research

question, the research design believed to be most suitable

for this study was the phenomenology approach. Phenomenology

is defined as a type of research study that develops an

understanding of what it is like to live an experience

(McConnell-Henry, Chapman, & Francis, 2011). Moustakas

(1994) stated that a phenomenological design involves

finding the lived experiences of individuals to explore the

environmental, cultural, and situational factors that may

impact the phenomenon.

19

The purpose of this research was to comprehend the

essence of how Nigerian primary caregivers experience access

support for a loved one with ADRD. In-depth interviews using

semistructured questions were used in gathering detailed

information from 10 participants from two Presbyterian

churches in Nigeria. The semistructured interviews were the

primary source of data collection in qualitative research

because this format allowed for a myriad of responses and a

true understanding/generation of the phenomenon as

experienced by the group (Flood, 2010).

Research Questions

The theories that supported this phenomenological study

were cultural theory (Arevalo-Flechas, 2008; Neary &

Mahoney, 2005) and social learning theory (Bandura, 1977).

Together, the theories and research questions helped to

understand better how Nigerian primary caregivers access

support for their loved one with ADRD. The theories are

further examined in Chapter 2.

20

The primary research question for this study was “How

do Nigerian primary caregivers in Abia State, in Nigeria

experience a family member’s mental deterioration from

dementia related disease?” The corollary questions were:

“What are perceptions of resources available for Nigerian

primary caregivers who have a family member with ADRD?” and

“What roadblocks do caretakers experience in trying to get

care for their family member with ADRD?” Some of the probing

interview questions for this study included:

1. What is your daily life like caring for your loved one

with ADRD?

2. How do Nigerian primary caregivers explain their

understanding of ADRD?

3. What are some of the caretaking resources that are

available to you in this situation?

4. How do family members support your care of the loved

one with ADRD?

5. What do you experience as the biggest roadblocks in

getting care for your loved one with ADRD?

21

6. How does the Nigerian culture view ADRD?

7. What caretaking practices for a family member with ADRD

are culturally influenced?

Rationale for the Study

The study focused on the goal of highlighting the

subjectivity of the phenomenon while discovering the

essences of those experiences. A phenomenological approach

was used to pull up the participants’ experiences with the

phenomenon in a way that led the researcher to discover this

experiential essence. Phenomenology requires that the

researcher be in the environment to get a great

interpretation of the participants’ experiences with the

phenomenon, and to create and describe the essence of those

experiences of all participants; and this is what this

researcher sought to do (Moustakas, 1994). By researching

the experience of all participants in the study, I gained an

understanding of how Nigerian primary caregivers access

support for their loved ones with ADRD.

22

Most of the studies conducted by Ogunniyi et al. (2005)

have focused their attention mainly on comparison of care

patterns of individuals with dementia in developing and

developed countries. The authors reported that due to lack

of resources to provide comprehensive care in institutions,

the home care method used for caring for demented

individuals in developing countries is perfect in the

current economic condition. Another study focuses on the

knowledge of religious organizations on dementia and their

role in care (Uwakwe, 2000). The study explores the issues

that are in Nigeria, where mental health services have not

been fully developed and accepted by the general population.

Because of that, a great number of patients with dementia

and related disorders patronize alternative services, mainly

religious and native healing (Uwakwe, 2000). Religion is

used as a support system for Nigerians due to limited

resources and lack of adequate medical provisions for

families.

23

I wanted to answer the primary research question: “How

do Nigerian primary caregivers in Abia State, in Nigeria

experience a family member’s mental deterioration from

dementia related disease?” Qualitative research was most

appropriate for this study because the purpose of the study

was to explore and understand the perceptions of a small

group of people in Nigeria who were giving care to relatives

with ADRCs rather than measuring the responses of many via

surveys or document analysis. I desired to gain

understanding of the lived experiences of the caretakers on

their involvement with support systems for their loved ones.

The best possible way to address this question was through

the use of semistructured interviews using probing questions

with a phenomenological framework. The selection of a

qualitative phenomenological study over any other type of

study including grounded theory was made because this method

best captures the unknown experiences of a distinctive

population. Moore (2010) posited that a qualitative study is

a post-modern viewpoint that seeks to determine the truth as

24

it relates to a particular population. Semistructured

interviews and quality data analysis based on the

environment and responses of the participants are some of

the ways in which new awareness is achieved (McConnell-Henry

et al., 2011).

This research may provide valuable information so that

educational activities may be developed to address this

issue in the Nigerian community. Nigerians may benefit from

additional education about the illness and services

available to patients and their families. Likewise, the

study may likely help various mental health professionals

who also engaged in treating mental disorders and providing

support for their family members. This study has the

potential to provide a theoretical framework for the study

of ADRD awareness for various cultural practices and

population segments. Understanding how Nigerian culture

affects caregivers is crucial. Culture is commonly used to

describe peoples’ behaviors and this study expanded the

application of the theory when studying the data. For this

25

reason, few theories have been studied and used to caring

for loved ones with ADRD.

Significance of the Study

This present study was conducted to explore Nigerian

primary caregivers’ experiences about how they access

support for their loved ones with ADRD. Alzheimer’s disease

is not curable and is considered a terminal disease. There

is evidence to suggest strategies that can improve the

quality of life for both the caregiver and care recipient by

providing awareness to caregivers on the disease, safety

measures, environmental modification, problem solving, and

stress reduction (Ortigara & Scher McLean, 2013;

Savundranayam & Brintnall-Peterson, 2010; Semiatin &

O’Connor, 2012).

Mental illness in Sub-Saharan Africa is traditionally

considered to be a form of witchcraft, a negative spiritual

power so attuned to nature that it can control and

manipulate the future. The sacred and traditional belief

systems are so rich and strong that it is difficult for

26

outsiders to comprehend and appreciate. Thus, these

traditional belief systems in Sub-Saharan Africa, especially

Nigeria, play an important role in the explanation of health

behavior. These in-built cultural belief systems can be a

challenge and a barrier for Nigerian primary caregivers in

accessing medical support for their loved ones with ADRD.

Due to a lack of resources in Nigeria, primary caregivers

use what is available. Palmer (2010) reported that witches

are a present, consistent part of the culture and can be

called upon as an obtainable and culturally recognized

treatment method. The phenomenological research adds to the

minimal research in the field of human services exploring

the experiences of families dealing with ADRD. The outcome

of this research may encourage researchers to explore the

impact of psychosocial effects on primary caregivers.

Definition of Terms

Terms that may have different meanings are operationally

defined for the purpose of this study, so that they are not

used in a context that may be misinterpreted.

27

Abia: Abia is one of Nigerian five Eastern states of

Igbo origin. It was founded in 1991 out of the Imo State and

is one of nine states in the Niger Delta (Abia State

Government, 2012).

Activities of daily living (ADLs): ADLs comprise toileting, eating,

hygiene, walking, and dressing (Cavanaugh & Blanchard-

Fields, 2010).

Alzheimer’s disease and Related Dementias (ADRD): The Alzheimer’s

Association defines the disease as a progressive brain

disorder that slowly destroys a person’s memory and ability

to acquire new information, think, make decisions, connect

and carry out everyday activities (Alzheimer’s Association,

2010). In addition, the individual with Alzheimer’s disease

may experience changes in behavior and personality, such as

distress, nervousness, or delusion (Alzheimer’s Association,

2010; Gross, 2012). Alzheimer’s disease is the common form

of dementia, and WHO (2012) defined dementia as a condition

in which many intellectual components cease to function. It

is noted that the most common form of dementia is

28

Alzheimer’s disease, which accounts for 70% of all dementias

worldwide (WHO, 2012). In this study, the acronym ADRD is

used to describe dementias from all causes.

Barriers: Events and conditions that directly or

indirectly influence an individual’s progress by influencing

self-efficacy beliefs and outcome expectations (Metz, Fouad,

& Ihle-Helledy, 2009).

Care Recipient: An individual diagnosed with ADRD by a

licensed healthcare professional.

Caregiver: Caregiver is defined as an individual who

offers at least 50% of care to the person with dementia.

The level of care differs based on care recipient

requirement and phase of disease (Alzheimer’s Association,

2013). Caregivers aided with instrumental activities of

daily living including preparation of meals, grocery

shopping, and assisting with medications and

transportation.

Family Members with ADRD: Theoretically, a person

experiencing ADRD has a condition that results in memory

29

loss and other cognitive functions. Their ability to cope

with the needs of daily living declines and their behavior

and personality change. They need to increase use of outside

resources, and they eventually die from the disorder (Desai

& Grossberg, 2005).

Igbo: One of the three largest ethnic groups in Nigeria

and 95% of the population of Abia (Abia State Government,

2012).

Mental health stigma: Imprecise and undesirable perspective

of mental disability are identified as a stigma (Cook, 2006;

Goldberg & Killen, 2005, PR Newswire, 2012). Stigma includes

using labels and stereotypes frequently linked to

individuals who suffer from mental health problems. Shared

labels used towards people with mental deterioration are

that they are supposedly vicious, dangerous, volatile, and

feeble. Mental health stigma is a severe reality for

individuals with mental illness, since it affects these

individuals from accessing the help they need and it also

30

prevents them from living their live quietly (Goldberg et

al., 2008).

Mental illness: Mental illness is a sickness frequently

triggered by an imbalance in the brain’s chemicals that

regulates how a person reasons and senses. Severe mental

illnesses comprise schizophrenia, major depression,

schizoaffective disorder, bipolar disorder, and further

illnesses as defined by the American with Disability Act

(Goldberg & Killeen, 2005

Perception: The extent to which an illness is understood

by individuals within their cultural belief system.

Primary Caregivers: Family guardian and family member are

used identically to refer to primary caregivers who spend

the most time caring for person with disabilities (Robinson

et al., 2005). A primary caregiver is the term normally used

to refer to relatives, unpaid relatives, or friends who

support people with disabilities (Caregiver Hints, 2008).

Caregivers can be biological parents, adoptive parents,

grandparents, extended family members, and foster parents.

31

To be eligible as a primary caregiver, one has to assist the

family member with at least one personal or ADL (e.g.,

bathing, meal preparation, feeding) or to provide

supervision,

Shame: A feeling of disgrace. A primary caregiver, for

example, may believe that ADRDs were caused by “witchcraft”

or “evil spirit” because of what he/she did at an earlier

age or they are at fault for their loved one’s condition;

feeling humiliated about having a psychiatric illness in the

family is common (Papolos & Papolos, 2006).

Stereotypes: Usually held optimistic or negative beliefs

about different types of people or collective groups

(Goldberg & Killen, 2005; Harvey & Allard, 2005).

Stigma: The prejudice and discrimination those with

mental illness encounter from others (Okoye & Asa, 2011).

Sub-Saharan African. A region in Africa that lies to the

south of the Saharan desert.

32

Assumptions

The Nigerian primary caregivers’ ideals and their

attitudes toward ADRD are the outcome of the culture in

which they live. The participants’ insights are both

independently and informally established and influenced by

the environment that imposes and guides the cultural values

of the environment. My interest was to collect data that

support the understanding of the experiences that Nigerian

primary caregivers face in accessing support for family

members with ADRD. My main concern was to understand the

roadblocks that the primary caregivers face in accessing

supports for their loved ones with ADRD. I was the key

instrument in collecting data from multiple sources through

interviews and observations of caregivers. I was very

careful in maintaining my role in the study which was to

concentrate on the experience of the participant and not to

provide solutions. Each participant’s insights are both

independently and informally established and influenced by

33

the environment that imposes and guides the cultural values

of the environment.

Limitations

ADRD is nondiscriminatory, and affects populations of

diverse ethnic and socioeconomic status. A variety of

cultural populations such as African Americans, Asian

Americans, Latino Americans, Native Americans, Pacific

Islanders, Scandinavians, and Sub-Saharan Africans find it

difficult to participate in any outreach programs because of

greater levels of extended relative support and enhanced

sense of secrecy, shame, cultural differences, and absence

of understanding that support exists (Daire & Mitcham-Smith,

2006; Hebert & Schulz, 2006; Jones-Cannon & Davis, 2005;

Martorell, Reverol, Montes Muñoz, Jiménez Herrera, &

Burjalés Martí, 2010; Välimäki, Vehviläinen-Julkunen,

Pietilä, & Koivisto, 2012). As a result, the participants in

the study were not consistently seeking outside resources

for support and information about ADRD and may have been

34

experiencing feelings of stigma and isolation

(Ingvarsdotter, Johnsdotter, & Östman, 2012).

The definition and application of the theory provides

personal challenges that need to be clearly explained in the

study. The cultural experience associated with social stigma

and lack of openness on issues affecting a loved one with

ADRD does not allow Nigerian primary caregivers to discuss

disease in an open area because they are likely ashamed, but

they can discuss it when they are in their homes or behind

closed doors where outsiders cannot see or hear them.

Obtaining permission occasionally posed a challenge in this

study due to the necessity of setting up multiple locations

for the interviews. The qualitative nature of this study

involved face to face interviews and permission obtained to

protect all the interview sites. When conducting a

phenomenological study, precisely understanding the lived

experience and not inserting one’s individual insights and

judgment of the phenomenon being studied is important

35

(Creswell, 2009). Recognizing and watching the researcher’s

bias was very important in the study.

Participant selection was based on purposeful sampling;

the study used a small size appropriate to the criteria for

phenomenological studies (Creswell, 2009). The study could

not be generalized to all Nigerian primary caregivers but

this is not a goal of qualitative methodology. Creswell

(2009) posited that in qualitative studies, the focus is

transferability and not generalizability. Participants may

occasionally have had difficulty recalling their experiences

of accessing support for their loved one with ADRD. Few

studies that focus specifically on Nigerian caregivers and

families who care for their loved ones with dementia have

been completed. The lack of representation of Nigerians

within the samples studied in this literature review was

also insignificant. The study was conducted in a brief

period of five weeks that was intense, starting from

recruitment of participants to the collection of data during

a trip to Nigeria. A longer trip helped to study the

36

caregivers’ lived experiences more extensively and gather

more information. Limitations took place in finding primary

caregivers willing to provide information in one-on-one,

face-to-face interviews and who were available for follow up

interviews. The research was limited by the honesty with

which the participants answered questions during face-to-

face semistructured interview sessions. The research was

limited to only Presbyterian Church members of Abia State

and did not include a similar population from other states.

Therefore, the findings may not be generalizable to other

churches or geographic areas. However, these general

conditions that involve culture and attitudes are similar

throughout the sub-Saharan African region (Palmer, 2010;

Salawu, 2011).

Expected Findings and Investigator’s Perspective

The theoretical framework for this study specified that

caregiving is a process, which includes background and

contextual variables, roadblocks, stressors, cultural

beliefs, resources, appraisals, and outcomes (Sun, 2013). It

37

was expected that data collected from the interview process

would answer the research questions, while providing a rich

description of the lived experiences of these Nigerian

primary caregivers.

I have strong professional and personal reasons for

researching how Nigerian primary caregivers access support

for a loved one with ADRD, especially as a social worker who

has worked with caretakers as a case manager and a caretaker

both in nursing homes and in their homes. I have assisted

family members who live in Nigeria to cope with the

declining health of loved ones and has heard family members

confide that their loved ones have been attacked by an “evil

spirit” due to what their great grandparents did when they

were alive. My own family members have even locked their

loved ones in solitary rooms because they did not want

outsiders to see them. Following the cultural emphasis on

saving face and bringing honor to the family, it is believed

that having a family member with cognitive impairment

negatively reflects on the family lineage and brings

38

dishonor and shame to the family name. Even after doing the

best to support these caregivers, I came to the realization

that there is not enough research and information available

for health care professionals to offer quality

recommendations that are practical and useful. This issue

has not only been personally frustrating but also for the

primary caregivers. Based on the stories family members have

related, some insight has been given to me into how

challenging it can be when people do not understand what is

happening to their family members.

My focus on ADRD comes from more personal reasons. My

brother in-law and sister in-law had Alzheimer’s disease,

the latter of whom used to live in America. The family knew

what was wrong with her because it started in the United

States and when the family was not able to care for her, her

son decided to send her home because family members wanted

to take the responsibility. Regarding my brother in-law, my

sister being the primary caregiver did not know what was

going on and pastors were coming to the house to pray for

39

him because they thought that it was a spiritual attack. The

family has struggled to provide adequate care for them and

the family felt helpless and unsure of how to best help the

care recipients. This situation led to negative consequences

for my brother in-law’s side of the family. Not being aware

of Alzheimer’s disease and the social stigma associated with

mental illness prevented them from seeking help. A wide

range of emotions and guilt have resulted for me not being

beside them to make them aware of the disease, which

includes feelings of helplessness for not being able to see

them and check on them due to the long distance. I felt sad

that my brother in-law, the first care recipient who made

me the person that I am today was locked in a room because

of cultural beliefs that prevented the caregivers from

accessing support for the care recipient.

The struggles I have seen patients and my family

members experience have made me passionate and excited to

research and learn about the experiences of accessing

support of those providing care to a loved one with ADRD. I

40

hope my research will help me better understand the lived

experiences of how Nigerian primary caregivers access

support for people with ADRD and what suggestions can be

made to meet their needs better.

Chapter Summary

This chapter introduced the problem and provided the

background of this study on the caretakers of loved ones

with ADRD. The problems, purpose, nature of the study, the

research questions, as well as a detailed rationale for the

study were then discussed. Finally, the researcher presented

the significance of this study on caretaking in Nigeria and

its assumption, limitations, and expected findings. The

polarizing differences between developed and developing

countries that have permeated into ADRD research calls for a

truly qualitative examination of how such diseases affect

people all over the world. When one makes a connection

between the increasingly aging population of the world and

the increase of ADRD cases, it would be remiss not to

41

examine the impact these diseases have on primary

caregivers.

Furthermore, acknowledging the increasing aging

population in Africa and the continued misdiagnosis or lack

of awareness surrounding Alzheimer’s disease, it is

important to examine the impact it can have on patients and

caregivers in the developing world. When equipped with the

background, cost, diagnosis, care, and stages of Alzheimer’s

disease, further study concerning the impact of this disease

in the developing world is needed. Nigeria proved to be a

good country in which to conduct a qualitative

phenomenological study on the accessibility of services for

caregivers, especially when considering the societal stigma

and lack of services available in the country.

Organization of the Study

The remainder of the dissertation is organized into four

additional chapters, which consist of a literature review

(Chapter 2), methodology (Chapter 3), data collection and

results derived from data analysis (Chapter 4), and finally

42

a conclusion of how the study results suggest directions for

future research (Chapter 5). A reference list consisting of

all the research and resources used in the study is

included. There are also a number of appendices that offer

more detailed information for further support of this study.

43

CHAPTER 2. REVIEW OF THE LITERATURE

Introduction

A literature review was conducted to search for studies

focused on accessing support and services targeted towards

Alzheimer’s disease and related dementia. Based on this

review, it was determined that there have been many studies

focused on caregiving, burdens, impact of culture, and

caring for individual with dementia; and very little data

examining the Nigerian experience. There is indeed a gap in

knowledge related to how Nigerian primary caregivers access

support for a loved one with ADRD. Databases such as Ebsco,

Medline 1980-2012; ERIC 1970-2012; and CINAHL 1982-2012 were

systematically searched to find literature that would serve

as a foundation for this research. A manual search of

information available on the web, in current library

journals, and reference lists of selected studies was also

conducted to retrieve the most up to date materials. The

44

search articles were selected based on their ability to

provide new and different information with a focus on more

current research. By taking time to complete an overview of

the cultural climate in Nigeria and making parallels among

previous studies on primary caregivers of ADRD patients in

other countries, this literature review provides the

theoretical framework that guided the research of this study

on how Nigerian primary caregivers access services when

addressing the needs of family members suffering from ADRD

in Nigeria.

Alzheimer’s Disease or Related Dementia

Alzheimer’s disease is the most common cause of dementia

in adults and the risk of developing the disease increases

with age. Alzheimer’s is a disease that is misunderstood in

Nigeria because of the nature and time of onset of the

condition because memory loss associated with the disease is

assumed to be a normal part of aging. In Africa,

particularly in Sub-Saharan Africa, the population is ageing

at a slower rate than in other parts of the world. A

45

traditional definition of being elderly is around 50 to 55

(WHO, 2014). According to World Health Rankings by LeDuc

Media (n.d.) whose statistics come from WHO, UNESCO, and

CIA, the present life expectancy in Nigeria is 53.2 and that

figure ranks the nation as 179th in the world. In Sub-Sahara

African countries like Nigeria, caring for the increasingly

aging population is not a main concern because problems like

malnutrition, poverty, high infant mortality, famine, wars,

and political instability are at the forefront of issues.

Infectious diseases therefore constitute a more threatening

problem than is research on ADRD (Ogunniyi et al., 2000).

There is also the impression that dementia, particularly

Alzheimer’s disease, is more of a Western disease, which is

seldom diagnosed in the developing countries of which

Nigeria is included (Henderson, 1986).

The state of service provided to older adults with ADRD

in Nigeria is still insufficient because older adults

Nigerians with ADRD do not receive the same level of care

that they would get if the government had better

46

programs/awareness campaigns or if their family members had

more knowledge of ADRD (ADRD is a relatively unknown

diagnosis to many Nigerians). Memory loss as a result of

ADRD is considered a normal part of aging by most Nigerians,

and their care by their family members is initially limited.

Family members begin to show concern only when their loved

one’s memory becomes so pervasive that it affects their

work, social activities, and family relationships. Because

of the lack of awareness surrounding Alzheimer’s, family

members are not able to detect the signs or adequately care

for their older relatives. Consequently, the various stages

of Alzheimer’s disease are characterized as being a

“spiritual attack” on the affected individual, thereby

causing the family to seek religious help or alternative

medical treatments through native doctors. In African

cultures, the care of the elderly has always been the

responsibility of the family; and the Nigerian government in

particular has provided minimal support to demented patients

47

because of this belief that the well-being of the aging

population is a family matter.

Bahrer-Kohler (2009) reported that in Nigeria, although

ADRD is low in the country compared to the United States,

individuals are often not diagnosed because their symptoms

are considered a normal part of ageing. Furthermore, there

are cultural barriers against using outside resources like

nursing homes and pharmaceutical drugs. Therefore, elderly

patients with dementia do not benefit from the current

pharmacological, mental, and social developments in patient

care preparations. In Nigeria, for instance, mental health

services have not been fully established and recognized by

the general population. Services are also unaffordable, so

it is estimated that only 10% of the ADRD population receive

mental health services (Bahrer-Kohler, 2009).

VanderJagt et al. (2006) claimed that there are not good

laboratory tests for dementia. To diagnose dementia, a

combination of cognitive tests, neurological examinations,

and brain scans, such as MRI are utilized. The most

48

frequently used screening instrument for determining

cognitive function is the Mini-Mental State Examination

(MMSE) (VanderJagt et al., 2006). Although this oral test

had been assessed for being culturally insensitive and

socioeconomically and educationally biased, it may not be

appropriate for use in a developing country such as Nigeria.

Even the modified laboratory screenings conducted by

Ogunniyi and his coworkers were still found to be

ineffective in diagnosing dementia according to VanderJagt

et al. (2006).

Hodge and Sun (2012) conducted a study on the growing

Alzheimer’s population among Latino/Hispanic adults affected

by the disease. Also, the National Institute on Aging (2011-

2012) in the United States found that Latinos (especially

Puerto Rican immigrants) and African Americans had higher

rates of ADRD than had Whites with earlier onset and more

severe symptoms. They also tended to have lower education

levels and socioeconomic status than did non-Hispanic

Whites.

49

Until recently, there was no single test used to

diagnose Alzheimer’s disease; it was diagnosed by

eliminating other illnesses (McCabe, 2008) and involved six

steps in diagnosis that involve patient history, talking to

a family member or other close caregiver, doing a physical

checkup, tests for cognition, laboratory work, and

structural imaging (Feldman et al., 2008). The phases to

diagnose Alzheimer’s disease are mainly significant and can

be difficult depending on the modernity of the diagnosis and

treatment because there are curable diseases that imitate

symptoms of Alzheimer’s including urinary tract infections

(UTI), depression, and B12 deficiencies (Feldman et al.,

2008; McCabe, 2008). Additionally, Alzheimer’s disease is

one of the various forms of dementia (McCabe, 2008). Lewy

bodies, vascular dementia, Parkinson’s disease, and

traumatic brain injuries are common types of dementia

necessitating separate treatment procedures that vary from

Alzheimer’s disease treatment procedure (Chertkow et al.,

50

2009; Feldman et al., 2008; McCabe, 2008; Patterson et al.,

2008).

Because the early signs of Alzheimer’s disease may be

slow and understated, the first symptoms can be confused

with signs of normal aging, depression, stroke, or

Parkinson’s disease, and medical help may not be sought

right away. The aim of the first diagnosis should be to

determine if the symptoms may be related to a condition

other than dementia. Recently, neurobiological testing has

improved the diagnosis of Alzheimer’s disease (Rabin et al.,

2012). Diagnosis includes behavioral inquiries, neurological

exams, and neuropsychological testing. In one study, the

Manual of Mental Disorders was used at case conferences as

well as a model involving proportional hazards using age as

a time scale and adjusting for education, depression, and

gender (Rabin et al., 2012).

In developing countries such as Nigeria, culture plays

an important role in determining individual health beliefs

and attitudes, including how members of a given culture

51

posit a disease, identify its symptoms, and decide care-

seeking behaviors (Dilworth-Anderson & Gibson, 2012).

Studies have shown that cultural or ethnic background

intensely influences individuals’ knowledge of ADRD and

attitudes toward service use (Jones-Cannon & Davis, 2005).

Cultural misunderstandings and stigma involving ADRD may be

the main reason for delay in diagnosis and treatment

(Dilworth-Anderson & Gibson, 2012). For individuals to go to

a hospital for treatment, the person must have cash up front

for payment, and out of pocket funding is an inefficient

means of financing chronic disease care in developing

countries. Family caregivers often provide the majority of

the care for persons with ADRD (Hepburn, Tornature, Center,

& Ostwald, 2010) as approximately 70% of those Americans

affected live at home (Kantrowitz & Springen, 2007).

Stages of Alzheimer’s Disease

In the primary stage of ADRD, the illness is

categorized by slight recollection loss, understated problem

with attention, experiencing problems with structure, and

52

slight difficulties with orientation to time and surrounding

(Feldman et al., 2008). During the mild stages of

Alzheimer’s disease, the individual can still complete his

or her activities of daily living (ADL) such as hygiene,

using the bathroom, walking, dressing, and little help is

essential (Alzheimer Association 2010; Backman, 2008;

Herrmanann & Gauthier, 2008; McCabe, 2008); However, those

same individuals may have difficulty with driving, managing

medication, finances, cooking, shopping, telephoning and

housekeeping, resulting in need for assistance from primary

caregivers (Herrmann & Gauthier, 2008).

As the sickness advances to moderate stages of

Alzheimer’s disease, the family member with this disease

tends to need complete assistance with activity of daily

living (Alzheimer Association 2010; Backman, 2008; Herrmann

& Gauthier, 2008; McCabe, 2008). For instance, the

Alzheimer’s patient may not be able to bathe and dress

him/herself without assistance but may still be able to

occasionally feed him/herself. In this stage, the individual

53

with Alzheimer’s disease also has problems identifying

familiar faces, recognizing previously familiar

environments, and is unaware of present events or is not

living in the present (Feldman, et al., 2008). According to

Herrmann and Gauthier (2008), behaviorally, the person may

start to wander about, become nervous more often, seem

agitated, may begin indicating signs of violence, or become

sluggish and uninterested in environments and activities.

In the final and advanced stage of Alzheimer’s disease,

an individual is totally dependent on his/her primary

caregiver for all ADLs (Alzheimer Association 2010; Backman,

3008; Herrmanann & Gauthier, 2008; McCabe, 2008). In this

stage, Alzheimer’s disease patients experience incontinence

and no longer can even recognize loved ones or have any

personal memories for themselves. Intellectual activities

are totally compromised, causing difficulties with

communication as well as recognition of family members or

others, themselves, time, and place. This emotional

54

suffering affects caregivers as well as those with the

disease (Feldman, et al., 2008; Herrmann & Gauthier, 2008).

The united issue in all the three stages of Alzheimer’s

disease is that all signs are progressive which causes the

individual’s inability to care for him/herself (McCabe,

2008). Still, the individual can live for many years in each

of the stages before emerging into the next stage, resulting

in an extended and devastating life with Alzheimer’s disease

(Alzheimer Association 2010; Backman, 3008; Herrmanann &

Gauthier, 2008; McCabe, 2008); therefore, countless years of

caregiving are involved.

The Nature of Caregiving

It is not possible to discuss aging issues without

considering the high involvement of caretakers, whether in

institutions or in the family. The task of caring for the

elderly is not an easy one. A recent quantitative study of

330 respondents in Enugu State in Nigeria involved stress

levels of caregivers and the emotional and physical toll

stress has on these individuals (Okoye & Asa, 2011). Because

55

of the enormous pressures involved, few people found

themselves prepared for the predicament in which they found

themselves. Because caregivers are using almost all of their

time taking care of another individual, and the little time

they spend on the quality of their own lives, their health

is put at great risk. For example, among the emotional

consequences including guilt and depression, caregivers may

compensate by engaging in health risks such as eating

excessively, smoking tobacco products, and neglecting

exercise and personal needs or their family needs or their

social needs including leisure time and worship time. As a

result, not only are mortality rates hard for the elderly

but for their caregivers as well.

On the other hand, the satisfaction of taking care of a

loved one can also be a positive experience, a concept they

the younger family members are paying back the older ones

for the carte that former received long ago as children

(Okoye & Asa, 2011). The researchers also found that the age

of the caregivers were important factors. Younger caregivers

56

with children found their tasks much harder than did older

ones whose children had become adults. The age of the care

receivers was an important factor as well, for those who

were younger and still active were more demanding of their

caregivers than those over 90 who were in a more vulnerable

state than previously (Okoye & Asa, 2011). Okoye and Asa

(2011) concluded that raising awareness in caregivers was

most important for a future that promises more elderly

individuals who need care in the form of public awareness

campaigns to educate and provide better strategies for

caregiving. For the elderly themselves, the researchers

recommended counseling and educational programs that help

the elderly appreciate and support their caregivers (Okoye &

Asa, 2011).

Familism responsibility is a reoccurring phenomenon in

the literature (Daire & Mitcham-Smith, 2006; Hebert & Shulz,

2006; Jones-Cannon & Davis, 2005; McCarty, 1996; Sanders &

Corley, 2003; Wuest, Ericson, Stern, & Irwin, 2001). McCarty

(1996) conducted a grounded theory study of 17 daughter

57

caregivers, the sensation of accountability to care for a

family member with ADRD was primarily accredited to a sense

of “paying back” care recipient for the care they provided

for their family members. Wuest et al. (2001). A convenience

sample of 15 family caregivers permitted Wuest et al. (2001)

to realize that one of the developing themes of caregivers

was the obligatory nature of care. Several of these

caregivers specified that the obligatory responsibility they

felt in caring for a family member with Alzheimer’s disease

frequently led any other responsibilities (Wuest et al.,

2001). This theme in caregiver obligation to a family member

with ADRD suggests that the caregiver relationship exceeds

any other relationship duties a caregiver may have including

those relationship duties to a spouse, significant other,

sister, child, or grandchild.

Vellone et al. (2002) posited that few studies had been

conducted in Italy concerning the experience of caring for a

person with ADRD, notwithstanding having the second largest

population of elders with dementia. In their hermeneutic

58

phenomenological study of 26 caregivers, Vellone et al.

established most caretakers’ stated little knowledge about

the disease, and even less support from governmental

programs. The six themes identified in the Vellone et al.’s

study included (a) changes in relationships, (b) changes in

lifestyle, (c) difficulties in caring, (d) hopes and fears

for the future, (e) family duty, and (f) respectful

treatment. . In addition, these caretakers conveyed that in

spite of difficulties and problems, they had an obligation

to offer care to the loved one with Alzheimer’s disease

(Vellone et al., 2002).

In a somewhat similar study on caregiving in South

Africa though focused on caregivers of individuals with

schizophrenia, Molefi and Swartz (2011) conducted

qualitative research in which ten families who had relatives

being treated as outpatients by psychiatric hospitals in the

Southern Cape area were interviewed via a semistructured

questionnaire. I found that both patients and caregivers

suffered social stigma and also had negative relationships

59

with the mental health professionals. As in other nations,

deinstitutionalization has had a strong impact on families.

Molefi and Swartz suggested from the experiences of these

families that as in other countries, there is a need to

involve the families more closely with the treatment being

offered.

Stigma and the persistence of old negative attitudes

regarding dementia and other forms of mental illness are

prevalent themes throughout all studies that involve

caretakers and care receivers with high needs. Pescosolido

et al. (2013) found that “ironically, public acceptance of

modern medical and public health views of mental illness

appears to be coupled with a stubborn persistence of

negative opinions, attitudes, and intentions” toward mental

illness (p. e1). These attitudes persist everywhere in the

world and are discussed throughout the literature, and the

researchers examined data from 16 nations, finding similar

issues. Pescosolido et al. concluded that because the public

is more open to seeing mental illness as a true medical

60

problem yet deny full respect to individuals with mental

illness, then more than ever, campaigns to educate the

caregivers and the general public on social inclusion are a

salient need. Many studies that have been done on ADRD

involve those who care for loved ones with these challenges,

for no individuals with ADRD can live without such care.

Caretakers of Those with ADRD

Caretakers of those with ADRD encounter a variety of

daily challenges including the constant need to supervise

individuals, coordinating professional medical and social

service needs, and having to personally monitor the

patients’ health, often with limited financial resources. As

a result, services have been established including home

health care, respite care, day care for adults, and

community agencies. However, these services are not being

used to the fullest extent either because of caregivers’

lack of awareness or their possible unwillingness to seek

support care services for their loved ones (Padilla &

Villalobos, 2007). Informal caregiving is the primary source

61

of care as over half of people with Alzheimer’s disease and

other dementias live at home (Braun et al., 2010; Hodge &

Sun, 2012). The effect of caring for a loved one with ADRD

on the family and society is phenomenal. Clinically

described by the ongoing loss of intellectual capabilities

affecting reasoning, function, and behavior, individuals

diagnosed with ADRD become dependent, eventually demanding

continuous supportive care (Carpentier & Grendier, 2012).

Primary caregivers are parents, adult children,

immediate family members, guardians, and/or extended family

who spend the most time caring for disabled individuals

according to Robinson et al. (2005). These caregivers could

also be relatives, unpaid relatives, or friends who support

individuals with mental impairments (Carpentier & Grendier,

2012). The primary caregiver’s activities include meeting

the psychological, social, and physical needs of the

individual needing care (Brodarty & Donkin, 2009). However,

some caregivers may not have the resources, training, or

information as professionals in the mental health field to

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provide the affected family member with the adequate care

required. Furthermore, the primary caregivers may not be

aware of support systems in place that can assist them with

the caregiving process because the disease also affects the

families of the disabled individuals (Carpentier & Grendier

2012). Caregiving is a full-time commitment, and family

caregivers often get no respite from their duties (Okoye &

Asa, 2011).).

Irrespective of race or ethnicity, the opportunity for

a person with Alzheimer’s disease ADRD, 70% live at home,

being cared for by relatives and friends (Alzheimer’s

Association, 2013). Regardless of the availability of home

health services, community agencies, respite care, and

formal settings such as Alzheimer’s disease daycares,

informal caregivers remain, by far, the primary providers of

physical and emotional support. Approximately 10 million

Americans are caring for a person with Alzheimer’s disease

or another dementia; one out of three of these caregivers is

60 years or older (Alzheimer’s Association, 2013).

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Providing primary care for a relative with Alzheimer’s

disease demands an exceptional amount of energy, time, and

resources. As the disease progresses, the Alzheimer’s

disease caregiver is frequently exposed to a series of

stressors that lead to physiological and psychological

responses that could impact the quality of care for their

loved one. The Alzheimer’s disease caregiver deals with

stress that can have numerous causes, including the need to

be continually available to offer close supervision to the

person with the disease, the perceived lack of family and

social support, the seeking and getting of resources, and

the behavior and communication difficulties of the person

with Alzheimer’s disease (Brodaty & Donkin, 2009).

The lives of those who care for individuals with ADRD

are so restrictive that the former are sometimes referred to

as second patients (Brodaty & Donkin, 2009). The care they

give is absolutely critical to the lives of those who

receive care. Sometimes giving care is positive, but it is

generally a mostly negative experience and includes such

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burdens as ill health, social isolation, and financial

constraints, among others. Interventions that are

psychological and social can reduce the burdens and

depression that caregivers experience. When those with ADRD

are managed comprehensively and there is open communication

between the caregivers in the family and health

professionals, life quality becomes more positive (Brodaty &

Donkin, 2009).

In a seminal study on grieving that was rereleased

online in 2008, Sanders and Corley (2003) studied the grief

process that family caregivers go through at the loss of the

people the care receivers once were before they went through

all of the stages of dementia. Seventy one male participants

were surveyed and only 23 of them stated that they were not

grieving. The others were in a grief process. For the female

participants, only 41 were not and 123 were having grief

reactions. Almost twice as many people of the 113 who were

giving care at home were experiencing grief contrasted to

those who were not personally providing care. Additionally,

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those involved in providing care in nursing homes mostly

reported grief reactions (61 versus 13). The grief reactions

included physical, spiritual, emotional, and psychological

grieving. For those who reported no grief reactions, they

still felt a sense of loss including not being able to

reconcile relationship issues of the past. Finally, many

individuals who were not grieving had good coping mechanisms

including strong spiritual beliefs.

Self-efficacy is an important quality to have in the

caregiving process. Such a trait may act as a buffer from

many of the negative experiences of giving care to

individuals with ADRD. Semiatina and O’Connor (2012)

conducted a study on how self-efficacy was related to

positive caregiving aspects for those caring for loved ones

with ADRD. Individuals were interviewed as part of a

randomized trial of caregiver intervention. The researchers

found that after controlling for neuropsychiatric symptoms

in care receivers and depression in caregivers, self-

efficacy had a significant variance percentage in positive

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caregiving. Semiatina and O’Connor concluded that high self-

efficacy brings positive perceptions to caregivers.

Savundranayam and Brintnall-Peterson (2010) also tested

self-efficacy as a support for family caregivers regarding a

psychoeducational intervention for family care.

Savundranayam and Brintnall-Peterson were studying how self-

efficacy changes health risk and self-care behaviors via

multiple regression and multivariate analysis of variance.

It was a mixed study with written accounts of the impact of

the intervention (qualitative) to expand the quantitative

findings. The researchers found that the psychoeducational

intervention reduced family caregivers’ health risk

behaviors and improved levels of stress management and

relaxation. When self-efficacy improved, health risks

decreased. The way interventions can help family caregivers

must be understood to support family centered care

(Semiatina & O’Connor, 2012). The emphasis in creating

awareness for family caregivers should generally be on the

self-neglect that caregivers have toward their own health

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and how detrimental it is. If caregivers are supported well

in the psychoeducational programs they can carry on their

roles without neglecting their own health (Semiatina &

O’Connor, 2012).

ADRD is rising all over the world as are the people who

care for individuals who have the condition. ADRD is going

to rise dramatically along with the need for supportive

services for patients and caregivers alike that can take a

strong infrastructure and government support. Gallagher et

al. (2012) conducted research on databases throughout the

world including China, India, Central America, and the

United Kingdom with the purpose of analyzing existing

programs and the barriers that delayed or prevented care

access and made recommendations for helping productivity and

growth in this health field.

Several researchers have conducted studies on ADRD in

different places in the world or within ethnic groups who

have immigrated to other countries (e.g., Ferreira & Kowal,

2006; Lee-Fay et al., 2010; Sun, Mutlu, & Coon, 2014). Lee-

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Fay et al. (2010) investigated the attitudes toward and

recognition of dementia in Greek, Chinese, and Italian

Australians, comparing first and second generation

immigrants to third generation Australians in a cross-

sectional telephone survey. There were 414 Greek, 437

Chinese, and 350 Italian immigrants as well as 500 third

generation Australians. They were randomly selected from a

telephone directory. Lee-Fay et al. found that 85% of the

third generation Australians, 61% of the Italian, 58% of the

Greek, and 72% of the Chinese respondents could recognize

symptoms of dementia in a hypothetical situation. The more

recent immigrants also tended to hold negative attitudes

toward individuals with dementia. Lee-Fay et al. concluded

that the ethnic minority groups had a need for targeted

education regarding dementia to lessen negative aging

stereotypes and increasing ability to seek help and

diagnoses for ADRD.

Sun et al. (2014) studied the barriers to service that

Chinese American caregivers and those with family members

69

with ADRD experience. Little research has been conducted on

issues faced by Chinese communities. Sun et al.’s

qualitative approach involved focus groups that were used to

gather information on perceptions on barriers to service and

how they can be overcome. Using content analysis, Sun et al.

found service barriers consisting of limited caregiver

knowledge, shortage of services having cultural competence,

and low motivation in seeking professional help. Regarding

professionals, there was low understanding of Chinese

culture and language, minimization of issues involving

treatment of ADRD, and mismatched expectations between

professionals and patients and their families. Sun et al.

suggested better education of family members, especially the

young ones, and expansion of Chinese community resources for

those experiencing ADRD in order to face service barriers.

Sun et al. also discussed a framework involving practice for

gerontology. The study is particularly relevant in areas of

significant Chinese populations in places such as California

and Arizona.

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Gelman (2014) explored the discrepancy between the

stereotype of Latinos’ close association with the extended

family and low perceptions of caregiving being a burden as

well as the reality that there is little social support and

the same high levels of distress as in other groups. Gelman

conducted a qualitative study of the experience of

caregivers of those with ADRD, focusing particularly on

familism in caregiving. Gelman found “a more nuanced

understanding of familismo, one at odds with the simple,

comforting version of all Latino families fully desirous and

capable of caring for older adults without complaint or

struggle” (p. 59). The fact that many professionals view

Latinos as those who do not require formal services may be

denying families the support they need. Instead, it can be

learned from this study that diversity and individuality

must always be considered. Hodge and Sun (2012), on the

other hand, studied 209 Latino caregivers with structural

equation modeling regarding how spirituality affects

positive aspects of caregiving for relatives with

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Alzheimer’s disease and found that spirituality is

positively related to the positive caregiving aspects and

may mediate subjective stress positively so that better care

can result. Hodge and Sun concluded that practitioners

should make sure that spiritual strengths are emphasized in

care.

In sub-Saharan Africa, Ferreira and Kowal (2006)

conducted a study to fill a gap in the research that has

been done on older people in the region. They called for

accessible and reliable demographic data and statistics for

good policy making. WHO initiated the project and it was

conducted in South Africa, Zimbabwe, Tanzania, and Ghana.

The researchers had much difficulty in accessing data

including certain gaps and constraints in accessing quality

data.

In Iran, Navab, Negarandeh, and Peyrovi (2012) studied

Iranian family caregivers of those with Alzheimer’s disease

to understand their experiences. ADRD is increasing in Iran

as elsewhere, especially due to the aging population, which

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has made the health challenges urgent for the public.

Noninstitutionalisation has been encouraged; thus, families

who care for loved ones with Alzheimer’s disease are

increasing. Navab et al. found in their qualitative

Heideggerian hermeneutic phenomenological study of eight

Iranian caregivers that the caregivers felt they were caught

in reminiscences of the past and fear of the future. They

often remembered interacting with their care receivers in

the past and compared that with their current condition

resulting in feelings of regret and loss. Because of the

unpredictability of the disease, they often feared the

deteriorating condition of their loved ones and how they

would suffer. Navab et al. noted that nurses in the front

lines should help support and inform caregivers of those

with Alzheimer’s disease.

Brief History and Culture of Nigeria

An examination of the history and culture of Nigeria is

necessary to provide an overview of the research

environment. Nigeria was a British colony for over 57 years,

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finally gaining independence on October 1, 1960. Covering

356,668 square miles, Nigeria is approximately twice the

size of California and three times the size of the United

Kingdom (Falola & Heaton, 2008). Nigeria, located in West

Africa, is the most well-known, populous country in the

Continent of Africa with a population of about 174 million

people (CIA World Factbook, 2013). While there are 36 states

in Nigeria, this study was conducted in Umuahia, which is

the capital city of Abia State. Umuahia proves to be a

reflection of the incredibly diverse nation of Nigeria

because it is comprised of individuals from various ethnic

groups which include Igbo, Yoruba, Hausa, Efike, Urhobo, and

Itsekiri speaking people (CIA World Factbook, 2013).

Nigerian life expectancy in 2012 stood at 51.6 years and the

elderly make up the poorest group in Nigerian society

(Central Intelligence Agency world Factbook, 2012). However,

while some developed countries may start to create various

programs and health care facilities to care for the

projected increase in the aging population, there is a

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cultural notion in developing countries like Nigeria that

the family is responsible for the care and well-being of the

elderly.

In Sub-Saharan African societies, there are set roles

for the elderly and it is commonly acknowledged that their

children have sole accountability for their welfare (Bahrer-

Kohler, 2009). Nigerian cultures nurture dependency and

there is multigenerational conversation coupled with the

transference of dependency over time as children are

dependent on their parents and elderly parents or elders in

the community become dependent on their adult children.

There is a sense of respect that is accumulated as one gets

older in Nigerian society, creating a cultural environment

where older people are in higher social positions than are

those in younger generations. Rural-urban migration has led

many young family members to leave their older adults in the

rural areas in search of better opportunities in urban

areas. With current day economic opportunities, young men

and women have been leaving their homes to find better jobs

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and the older people are left behind without caregivers.

However, after moving away, they still support older adults

who yet live alone.

Role of Culture in Mental Health

Culture can be defined as a set communal symbols,

customs, and beliefs that can shape individual and group

behavior (Goodenough, 1999). The meaning of culture, such as

the beliefs and values about caregiving, can direct an

individual’s caregiving behavior and determine the amount of

care that would be provided to older dependent relatives.

Kroeber and Kluckhohn (1952) described culture in terms of

patterns and symbols and how the distinctive achievement of

human groups include embodiment in artifacts. Many people

use culture to legitimize attitude, and rationalization of

morality of groups. Others use it to explain norms, mythical

beliefs, institutions, and policies. Dilworth-Anderson and

Gibson (2012) wrote about issues of ethnicity and culture as

related to Alzheimer’s disease. The authors highlighted ways

in which culture can influence caregiving to people with

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dementia across different ethnic groups in the United

States. Particular attention was given to the impact of

cultural values, norms, beliefs, and ability to determine

definitions of disease and illness. It was concluded that

caregiver decision making and help-seeking are influenced by

the meaning(s) they assign to AD. In Low et al.’s (2010),

study, ethnic minorities were more likely than third

generation Australians to view ADRD as a normal part of

aging for which little could be done and that care receivers

should be treated like children.

One’s cultural rules and values offer meanings of

illness for diseases such as Alzheimer’s disease (Dilworth-

Anderson & Gibson, 2012). Cultural norms, values, and

beliefs help create shared collective knowledge about a

disease within a group. African-Americans may assign meaning

of “worration,” “falling out,” or “high blood” to behaviors

symptomatic of dementia (Gaines, 1989). Henderson and

Gutierrex-Mayka (1992) found that some Hispanics viewed

elders with dementia as being “crazy” or having “bad blood,”

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a label that may be shared by the entire family. This stigma

linked with ADRD with the African community can impact on

the level of accessing medical support for their loved ones

with this disease (Quinn, 2007).

There is a much debate about how Alzheimer’s disease is

understood and defined through diverse cultures and

ethnicities and how this may influence a societal response

in seeking help for their loved ones (Quinn, 2007). In Sub-

Saharan African cultures, there are two systems for

explaining Alzheimer’s disease. The biomedical explanation

has an emphasis on the diagnosis of symptoms treated

primarily through medical interventions. The second is the

traditional system, which attributes Alzheimer’s disease to

causes such as witchcraft, curses, or evil spirits, and is

subsequently treated by herbal medicine or spiritual means

of prayers and fasting (Dilworth-Anderson & Gibson, 2012;

Hinton & Levkoff, 1999; Levkoff, Levy, & Weitzman, 1999;

Quinn, 2007).

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Quinn (2007) directed a study in Ghana, West Africa, to

discuss the influence of cultural beliefs on the society’s

reaction to mental illness and Alzheimer’s disease. The

authors compared beliefs and family response to mental

illness/Alzheimer’s disease in four Ghanaian cities. Using a

qualitative approach, 80 participants from various ethnic

groups (both in cities and rural areas) were interviewed.

Participants in urban areas had a greater belief in the

biomedical causes of mental illness/Alzheimer’s disease;

whereas, people in the rural areas were more likely to

believe that spiritual issues were responsible. The range of

beliefs about Alzheimer’s disease suggests that there are

limitations to the universal approach, and it is important

to take account of various cultural differences in beliefs,

knowledge, and perception of Alzheimer’s disease, even

within a single country (Quinn, 2007). In Nigeria, some

close relatives may sometimes disregard the symptoms of a

family member with ADRD as being ones that should be handled

with caution, even with a good understanding of medical

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care. Uwakwe (2000) also reported that many people within

Nigerian communities attribute the symptoms of ADRD to

supernatural causes, such as evil spirits and witchcraft.

Ilechukwu (1988) stated that beliefs concerning mental

illness causation also differ with mental illness diagnoses.

For example, in Nigeria more “neurotics “adduce supernatural

explanations for their illness than do “psychotics”

(Ilechukwu, 1988, pp. 203-204). In sum, animistic and

magical etiologies are very prominent in African

communities. Nevertheless, other contributing factors range

from biomedical triggers to social problems.

In Sub-Saharan African countries, which include Nigeria,

cultural beliefs tend to attribute the symptoms of ADRD to

spiritualism and witchcraft. However, with the increasing

understanding of disease and medical care around the world,

it is now time to engage in the proper research required to

gain a better understanding of the disease and put to rest

the superstitions and myths that are unfortunately

preventing quality care and access support for people with

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ADRD and for those primary caregivers of those with ADRD

diseases. Additionally, because there is still obvious

discourse between the developed and developing world, it is

becoming increasingly important to gain a better

understanding of the impact cultural perceptions of those

suffering from ADRD have on the ability and willingness to

access support for loved ones with ADRD diseases. Promoting

an understanding of the disease behavior and creating

awareness into educational material for general public can

help both the healthcare and spiritual leaders find more

effective solutions towards providing adequate care for ADRD

patients.

Stigma

Probably the most important negative association with

ADRD is stigma. The World Alzheimer’s Report (2012)

discussed the need for public awareness of the prevalence of

the disease and its connection with stigma for patients and

families coping with ADRD. Almost one in four people

attempted to hide their conditions due to the fear of

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others’ reactions. They believed that concealing their

condition or the family not revealing that a family member

was in the early stages of the disease would get people to

treat them better. When they do associate with others, it is

often people in similar circumstances. To face the problem

of stigma, the World Alzheimer’s Report suggested more

public education, a conclusion to which most researchers

have come.

African people with mental illness may be stigmatized

by community members; it is not necessarily the case that

their families reject them (Nyati & Sebit, 2002; Whyte,

1991a). For example, in Zimbabwe, caregivers (usually family

members) of individuals with mental illness face multiple

problems, but they are more tolerant of their care

recipient’s behavior than is the general community (Nyati &

Sebit, 2002). But in a Tanzanian study, nearly three

quarters of the families interviewed did not feel that their

relative with mental illness was feared by the community

(Whyte, 1991a). However, about 62% of those with

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intellectual disabilities and 51% of people with mental

illness reported that people laughed at them. This finding

was qualified with remarks like “but only children laugh at

him” or “only a few people do [laugh at the mentally ill],

others feel pity” (Whyte, 1991b, p. 106).

These illustrations paint a picture of a sympathetic

support for people with ADRD. Nevertheless, African cultures

cannot be idealized as “all tolerant.” There is evidence

that relationships requiring high levels of intimacy are

avoided (Adewuya & Makanjuola, 2005) and behavioral

disorders that threaten lives are recognized, feared, and

stigmatized (Coker, 2005; Kabir et al., 2004; Whyte, 1991a).

Numerous African stigma studies have examined

sociodemographic characteristics and diagnostic labels.

Prejudice and stigma differ according to demographic in

Africa. Illiteracy has been associated with negative

feelings towards individual with mental deterioration (Alem

et al., 1999; Kabir et al., 2004).

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Many caregivers, usually the children of those with

ADRD, experience stigma. Werner, Goldstein, and Buchbinder

(2010) explored families’ subjective experience of family

stigma according to the children of those with Alzheimer’s

disease. They found three dimensions of stigma: caregiver,

lay public, and structural stigmas. The process through

which the families go has three core elements including

cognitive attributions, emotional reactions, and behavioral

responses. The research suggests adult children taking care

of their parents with Alzheimer’s disease live with

stigmatic beliefs. One specific observation was the feelings

of shame when parents with Alzheimer’s disease acted

inappropriately and embarrassed the families who were less

likely to seek help. Another significant negative emotion

was disgust with the condition of the parent that can result

in lower involvement of the adult children. This finding was

concerning to the researchers because of the possible effect

of low engagement.

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As far as the lay public, the adult children found the

only positive emotion from them was pity. Sometimes adult

children distanced themselves from the parents with

Alzheimer’s disease because of the offspring’s fear of

getting the disease themselves, even catching it.

Structurally, availability and affordability of services was

a significant barrier. The main conclusion is that really

fair and equal health care services are a large part of

putting structural discrimination to an end (Werner et al.,

2010). Werner et al. (2010) also suggested much more

research be done than is being currently being conducted on

Alzheimer’s disease in particular due to its unique

challenges.

Stigma is an issue everywhere that ADRD exists.

Pescosolido et al. (2013) used data from 16 countries to

study “the backbone of stigma” (p. e1), measuring prejudice

and knowledge in an exploratory data analysis on the

response of the public to 43 items. They found that although

acceptance of ADRD was high, prejudice was also high for

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many mental illnesses, especially for schizophrenia.

Pescosolido et al. felt that inclusion, integration, and

competence to reduce cultural barriers to response,

recognition, and recovery were necessary.

In a seminal work, Blum (1991) studied the collusion in

which ADRD individuals engage in the early stages of the

disease to avoid detection by the public or by family

members. Blum found two stages of collusion: the first is

with the Alzheimer’s disease person and the second is

collusion and realignment with “an expanding circle of

others” (p. 263). The caregivers gradually go from control

of information to control of challenging situations. Due to

the unpredictability of Alzheimer’s disease behavior,

caregivers are always monitoring and anticipating the worst

outcome.

Montoro-Rodriguez, Kosloski, Kercher, and Montgomery

(2009) gauged how social embarrassment affected caregivers.

They used data from the Alzheimer’s Disease Demonstration

Grants to States (a total of 1183 data) on caregivers’

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perceptions on embarrassment, which adds to their distress

and may lead to depression. Such results are universal:

there were no major differences across cultural groups.

Other factors that affect depression are caregiver health,

certainty of Alzheimer’s disease diagnosis, and perceived

duty to give care.

In another seminal study, MacRae (1999) conducted

qualitative research on courtesy stigma (stigma by

association) among family members of individuals with

Alzheimer’s disease and found that both the latter and

caregivers experienced stigma; however, many family members

claimed the opposite. They simply did not project stigma

onto themselves no matter how stigmatized was the person for

whom they were caring. Werner and Heinik (2008) also studied

courtesy stigma in Alzheimer’s disease and found four

dimensions including concealment, interpersonal interaction,

access to social roles, and structural discrimination.

Although the participants did not feel much stigma directed

toward them in general, structurally, much stigma was

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directed toward both them and the people for whom they

cared.

Werner, Mittelman, Goldstein, and Heinik (2012)

conducted a qualitative study on the burdens and stigma

experienced by families of those with AD. As in Werner and

Heinik’s (2008) study, dimensions of caregiver, lay public,

and structural stigmas were defined. They found for mental

illnesses that the perceptions of caregivers of stigma

increased or decreased their burden. Still, these effects

have not undergone testing, either empirically or

theoretically. Werner et al. conducted 185 interviews with

adult children who cared for those with Alzheimer’s disease

who had stigma variables of shame and decreased involvement

taking care of their loved ones, which were major

contributing factors in caregiver stigma. All of the studies

regarding stigma involved the caregiver/care receiver

relationship, mostly of families taking care of individuals

with ADRD. Most caregivers felt stigmatized, but those who

did not internalize the stigma that their loved ones

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encountered felt less stigmatization. However, from the

outside, there were many more encounters.

Theoretical Framework

Creswell (2011) suggested that research without theory

is lacking because there would be no framework to assist as

a guiding lens through which issues are analyzed and

interpreted. They also determined the recommendations and

intervention policies that can be enacted to resolve or

improve upon a particular issue (Greenstein, 2006). To

understand the way Nigerian primary caregivers access

support for a loved one with mental illness such as ADRD,

knowledge about the theoretical frameworks for this

qualitative study was cultural theory (Dilworth-Anderson et

al., 2012) and social learning theory (Bandura, 1977, 1997),

which explored relationships to attitudes and perception of

accessing support for their loved ones with ADRD. The

contact between me and the participants created numerous

truths and a fusion pertaining to this phenomenon in Nigeria

(Leedy & Ormrod, 2005).

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Cultural Theory

Culture is also thought of as a collection of social

traditions that can be transferred by one generation to

another. Dressler and Carns (1973) reported that individuals

obtain and share culture as a member of a group. The result

of a shared culture is that people in the group are involved

in human interactions that typically promote the general

welfare of their society. Human societies are made up of

systems of social relationships; and in those relationships,

culture is socially constructed. As culture is learned over

time, individuals in a given society do what is expected of

them. Cultural expectations then impact all aspects of lives

for people within the community, such as determining health

beliefs and attitudes, the conceptualization of diseases,

recognizing symptoms, and coming to a consensus on care-

seeking behaviors (Dilworth-Anderson & Gibson, 2012).

Studies have shown that one’s cultural or ethnic background

powerfully impacts individual knowledge of ADRD and

attitudes towards services used (Jones-Cannon & Davis,

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2005). Medical anthropologists have conducted many studies

in recent years on the need to understand the cultural

relationship between diseases and the environment. Purnell

and Paulanka (2008) and Smith, McCollough, and Poll (2003)

created awareness of the need for understanding the

relationships between behavior, culture, and HIV in the Igbo

community of Nigeria. DeLellis (2006), in discussing

cultural influence in healthcare, explored the impact

culture and subcultures have on healthcare treatments and

services.

Cultural theory is a division of anthropology and other

related social science disciplines that seek to define the

heuristic idea of culture in operational terms. The theory

was developed to provide a frame of reference for

understanding the functions and impact of cultural norms and

values that provide definitions of illness for diseases such

as ADRD in culturally significant ways (Dilworth-Anderson et

al., 2012). Cultural theory in relation to primary

caregivers focuses on understanding the culture of the

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caregivers and how that culture shapes the responses to care

responsibilities towards their older family members

(Arevalo-Flechas, 2008). Assessment of the theory explains

the influence culture has on a society, especially among

Nigerians. Families in Nigeria do not believe in

institutional care because culturally an elderly relative is

not allowed to live alone and away from their family. It is

considered a taboo to take elderly relatives to institutions

when they become ill. Culturally, mental deterioration is

considered to be a very shameful illness to family members

who then try and hide the illness by engaging in negative

activities like not seeking out help when needed.

Iroegbu (2005) suggested that Igbo cultural healthcare

provisions establish ritual healing rather than methodical

body of expert knowledge or a quasi-science (p. 80).

Treatment of illness and disease in Igbo culture through

alternative means such as native doctors (healers) is

similar to the Western world understanding and diagnosis of

illness and disease. Patients are advised to be faithful to

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the healers as they perform their nonscientific treatment

and healing processes. Iroegbu clarified that the Igbo

people depend on native professional healers and folk

medicines for their health needs, particularly in cases of

lengthy illnesses such as mental illness and dementia. The

culture attributes most bad luck and ill health to some

one’s chi (ones divine spirit). As a result, most Igbo

medicine is originated from what Iroegbu called “theory of

symbolic release” (p. 85). This concept is used to explain

the cultural understanding of diseases and illnesses from

the view of cultural immorality. This theory supports the

idea that a treatment is not mainly a matter of medical root

and herbs, but that which begins with important ceremonies,

which are intended to be therapeutic by relieving the

condition of the patient (p. 85).

In China, for example, care of family members with

dementia at home occurs commonly and is a reflection of

Chinese culture. Chinese people live in a society strongly

influenced by the traditions of filial piety and familialism

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(Lou, 2007; Purnell & Paulanka, 2008). Filial piety is the

responsibility of an adult child to care for his/her parent

and to meet the needs of the parent (Lou, 2007; Park &

Chesla, 2007).

According to Ogunniyi et al. (2005), the Indianapolis-

Ibadan Dementia Research Project (I-IDRP) carried out a

study in 1992 to examine the Idikan community in Ibadan,

Nigeria. Results of the study showed that only 15% of

elderly adults lived alone while the rest were with

relatives. Most of the relatives preferred home care. One of

the reasons they gave was to avoid being stigmatized by

others and they therefore concealed their older relatives

with the families. They do not want to cope with the

embarrassment resulting from hallucinations and delusional

behaviors that were typical in later stage ADRD. Also, they

believed that others in the community may think that these

behaviors were an act of possession by witchcraft, which

they think could lead to their being disliked and or dealt

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with through more severe punishments like death by stoning

by community members (Ogunniyi et al., 2005).

For the number of growing Nigerian ADRD primary

caregivers, multiple cultural practices and beliefs

exclusively influence their experience of caregiving

including how they access support for their loved ones with

this disease and consequently the service they provide. Some

are ashamed of asking for help even when they are pressured

by other members of the family; they still not seek help due

to cultural influences. Ogunniyi et al. (2005) surveyed 10

religious ministers who believed dementia was caused by evil

spirits and only 10-20% of the ministers interviewed said

that dementia could be treated by drugs.

The religious ministers were the aim of the survey

because family caregivers visit them for prayers and counsel

when they noticed that the symptoms of the disease were

becoming more severe or noticeable. Nigerian primary

caregivers with loved ones with ADRD seek alternative help

instead of taking their loved ones to health care centers or

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general hospitals. The religious leaders make home visits

and pray for the family including the patients with

dementia. Serious mental illness is integrated as part of

the person’s overall health and a general diminutive term

such as estan malitos which translates to “are unwell” is used

to describe symptoms and in the case of dementia, cognitive

decline is viewed as resulting from the normal process of

aging (Padilla & Villalobos, 2007).

Valle and Lee (2004) conducted a quantitative study

which compared help-seeking behaviors in 39 Latino and 50

European American caregivers of family members with

dementia. Multiple regression analysis was used and

discovered that ethnicity considerably accounts for the

inconsistency in help seeking behaviors (Valle & Lee, 2004).

According to Valle and Lee, social networks outside of the

instant environment are less prevalent for Latino

caregivers, and Latinos are far less probably to access

supportive professional’s services. Valle and Lee stated

that Latino participants indicated that familialism and

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close family relations not only initiate the caretaker to

take on the role of caring for a parent with Alzheimer’s

disease, but they also preclude the caregiver from seeking

professional services for care and from engaging in helpful

coping strategies for herself.

Cultural beliefs about illness greatly impact what and

how symptoms are reported and how healing practices are

employed alongside accessing medical treatment. Because of

the value placed on elder respect and dignity, illnesses

considered shameful to the family may isolate the family

from its established support network or they may not access

support for their loved one with ADRD.

Understanding ADRD is especially important to the

wellbeing of the patient with ADRD as well as the primary

caregiver. In some instance, the primary caregivers stand by

their right to provide care solely for their loved one out

of fear that healthcare professionals would not comprehend

the needs of their loved ones and would consequently offer

insufficient care (Pot, Zarit, Twisk, & Townsend, 2005).

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Cultural beliefs and values infuse every aspect of an

individual’s functioning providing the sieve through which

difficulties, solutions, and selections are viewed, which

then profile perception of a given condition even when

provided with evidence to the contrary.

ADRD patients require medical care all over the world.

But in Nigeria, medical care is not easily obtainable

because Nigerian government offers only three levels of

health care system, primary, secondary and tertiary that the

local, state and federal governments are responsible to

manage. The primary health centers only offer preventive,

remedial, and health promoting and rehabilitative services

for the patients. The health centers are normally where

primary caregivers take their loved ones first when they

notice that something is wrong with their family members.

But the health centers have become extremely unsuccessful

and have depreciated due to lack of investment in personnel,

facilities, and medications to treat the patients. There is

inadequate delivery of health services which has led to a

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lack of confidence and faith by the public in these services

resulting from the poor state of the facilities and low

standards of delivery.

Ogunniyi et al. (2005) stated that few older patients

with ADRD visit the hospital for treatment. The only reason

is when the family caregiver is well-informed about the

disease procedures that they seek medical help and can

finance the treatment. In the case that there are families

who want to take their loved one suffering from ADRD

diseases to a health care center, there is a shortage of

doctors or facilities available to provide care. Nigeria has

an estimated 0.2 physicians per 1,000 populations, 1.7

hospital beds per 1,000 population, and 142 nurses per

100,000 populations (p. 516). Additionally, Ogunniyi et al.

noted that the medications used to treat the symptoms of

ADRD such as cholinesterase inhibitors that help in treating

the early stage symptoms are not even available in Nigeria.

The other medications such as Vitamin E, which is used to

treat behavioral symptoms during the onset of the disease,

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are expensive. Antipsychotic medications like Clozapine and

Resperidol are available but expensive for the caregivers to

buy.

Older adults with ADRD who retired from active services

or government jobs cannot even receive their pension due to

administrative problems. Because of these problems, primary

caregivers find it hard to even seek help or take their

loved ones to the hospital. The Nigerian government

established the Income Act of 1993 and the National Social

Insurance Trust Fund (INSTTF) providing for a mandatory

contributory social security program for private sector

employees and employees under the NSTTF Act 1993. These

policies have demonstrated unsuccessful outcomes and the

challenges of governmental problem have hindered their

implementation. The pension programs are poorly implemented

and government executives misuse the retiree pension fund,

making disbursement to retirees difficult. Retirees with

ADRD cannot even care for themselves due to lack of

finances.

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A great number of patients with dementia and related

disorders utilize alternative services, mainly religious

practices and native medicine for healing. Some of the

recommended self-management exercises like aerobics or

cycling are rarely used by elderly Nigerians and skiing is

never used for exercise in that country (Bahrer-Kohler,

2009). It would first take education of healthcare workers

to educate those who care for their loved ones at home in

self-management of the disease (Bahrer-Kohler, 2009).

Social Learning Theory

Social learning theory clarifies human behavior in

terms of incessant mutual interaction between environmental

influences, cognitive and behavioral (Bandura, 1977). This

theory implies that human behavior is learned or acquired

over time and it is not inherent. Because the purpose of

this study was to understand the experience of Nigerian

primary caregivers face in accessing support for family

members with ADRD, social learning theory offered an

explanation of the attitudes to this phenomenon and how

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one’s environment/culture is displayed in the attitudes of

individuals, namely primary caregivers. The theory has been

applied extensively to the understanding of violence and

mental disorders mainly in the context of behavior change

(Bandura, 1997). Social learning theory focuses on acquiring

socially good behavioral patterns society expects from

members (Khan & Cangemi, 2001). These good behaviors vary

from one culture to another, different age groups and are

determined by situation (Khan & Cangemi, 2001).

Social learning theory suggests that human behavior is

learned; and to continually acquire knowledge or to

deconstruct one’s learned behavior, a new learning procedure

needs to happen (Anderson & Kras, 2005). There is an

underlying assumption that new behaviors can be formed

because the learning process is constant. In relation to

understanding how Nigerian primary caregivers access

support, the assumption is that attitudes and opinion formed

about this phenomenon are based on the Nigerian societal

norms, actions and beliefs that have been sustained and

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passed on through many generations on mental illness.

Because of that, different regions could have different

opinions about the same phenomenon. Furthermore, it could be

said that the learned attitudes and responses towards coping

with their demented family members could be changed, and new

behavior that could actually help ADRD patients and the

support acquired for primary caregivers can be learned.

Culture determines attitudes towards how family

member’s access support for their loved ones with mental

deterioration due to the social stigma associated with

mental illness. A family’s beliefs regarding illness and how

they access support suggest that families change their

pattern and set of illness beliefs based on the interaction

between the psychosocial type of illness and the family

itself. There is always a belief that some families

associate mental illness with punishment from past misdeeds

(Uwakwe, 2000) which results in others blaming the family

member with dementia for the mental illness. Other families

see themselves as victims, asking “why are we being punished

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if we have not done anything to anybody?” The learned

behavior from generations has a great impact on the way

family members adapt when coping with a mental illness and

how they hide the patient from the public or seek help.

Chapter Review Summary

Gaining a better understanding of the cultural climate

in Nigeria has provided some insight on the environment in

which the study took place. By taking time to complete an

overview of the cultural climate in Nigeria and then making

parallels between previous researches on primary caregivers

of ADRD patients in other countries, this literature review

has provided a frame of reference for which the research

took place. The review summarized several studies, many

qualitative, primarily of the caregivers’ daily experiences

of addressing the needs of family members. The latter had

mostly had ADRD and a few lived with other mental illnesses.

These caregivers experienced stress, depression, and stigma

every day. It was concluded in most studies that more needs

to be done regarding public education about ADRD and how to

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help caregivers and care receivers cope better on a daily

basis.

Likewise, applying theories concerning culture to the

Nigerian experience was the most effective way to examine

qualitatively the experiences of primary caregivers in this

study. Moreover, these theories proved to be the most

applicable ones needed to provide the theoretical framework

that guided the study. The next section, Chapter 3, includes

an in-depth discussion of the methodology that was used to

conduct this phenomenological study. The discussion in this

chapter comprises the research method, design

appropriateness, population, sampling, data collection

procedures, internal and external validity, and data

analysis process that were used in the research.

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CHAPTER 3. METHODOLOGY

Purpose of the Study

This chapter defines the methodology chosen to answer

the research problem concerning how Nigerian primary

caregivers access support for their loved ones with

Alzheimer’s disease or related dementia. Because the intent

was to analyze and understand the lived experiences of a

specific group, the research methodology was qualitative. A

qualitative method is one in which the researcher depends on

the thoughts of participants by asking general questions,

collecting data consisting of texts, and describing and

analyzing interview response (Creswell, 2011). A qualitative

phenomenological method was to answer the research

questions. One-on-one interviews of Nigerian primary

caregivers age 45 and over caring for loved ones with ADRD

were used to gain insight of this experience from a

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caregiver’s viewpoint. This study also looked at how

individuals are influenced by occurrences in their lives.

The method used for a study is determined by the

purpose of the research and the research questions

(Creswell, 2011). The purpose of quantitative research is to

describe a cause-effect relationship of the variable under

study (Merriam, 2009) and this method was not suitable for

the current study. The purpose of qualitative research is to

explore people’s attitudes, behaviors, value system,

concerns, aspirations, motivation, cultures, and lifestyles

(QSR International, 2011). The purpose of this qualitative

phenomenological study was to explore the lived experiences

of how Nigerian caregivers access support for their loved

ones with ADRD. The study included 10 participants who were

each involved in one interview conducted over a period of

six weeks. After interviewing, overall themes were developed

based on all of the participants’ interviews. Although the

goal of the study was to capture the lived experience of

these caregivers, it was also hoped that the findings might

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suggest which type of awareness programs and content were

needed for the caregivers in the community. The data may

also help to create awareness of seeking medical help

instead of turning to native healing. The current study used

cultural and social learning theory as a theoretical

framework to explain how this experience consists of social

stigma, background, contextual variables, stressors,

resources, assessments, and outcomes.

According to Janesick (2000), the researcher’s role is

to conduct the study. I guaranteed that ethical and legal

practices were upheld during the course of the research. In

addition, I made sure that the study was bound to the

practices, measures, and the ethical rules accepted by the

Capella University’s institutional review board (IRB). I

also served as the person who developed the questions

grounded upon theories towards culture and environment

behavior. All of the interview questions were approved by

Capella University’s IRB prior to the study being conducted.

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No amendments were made to the question following this

approval.

Research Design

I used a phenomenological approach. Phenomenology in

research originated from the German philosopher Edmund

Husserl, and is the study of an experience from the

participant’s own point of view. Phenomenologists’ emphasis

on describing what all participants have in common when they

experience a phenomenon. Other qualitative methods were

examined and rejected for various reasons. Smith (2008)

stated that researchers who use case study design “explore a

single phenomenon that occurs during a defined time or

activity and collect data” (p. 3). The case study design was

not chosen for the study due to lack of time, focus of the

study, and limited use in a study of caregiving.

According to Newman (2011), grounded theory design lets

a researcher construct a theory from the data. The main

reason for using approach would be to create a theory

because one is not available (Creswell, 2009). However,

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grounded theory was not suitable for the study because the

concentration was not to generate a theory on how the

participants access support but rather to understand the

experiences on how primary caregivers access support for

someone with ADRD.

Smith (2008) posited that social researchers who study

a particular cultural group in a national location for a

specific period use an ethnographical research design.

Moustakas 1994) stated that ethnography was comprised of

participant observations and informal and informal

interviews. Because of the intensive fieldwork, population,

sampling, and data collection procedures, ethnography would

not have been appropriate for the study. Even though an

ethnographical design produces in-depth understanding of a

problem, the data collection and analysis would not have

been possible. This study involved exploration of the

perception of the participants aligned with a

phenomenological approach.

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Given the objective of the three main qualitative

designs, phenomenology was found to be the best method for

this study. According to Creswell (2011), the main goal of

this approach was to capture one essence of a phenomenon

from the participants’ perspective. The central structure of

an experience is its intentionality; it is an experience

about something. In using this approach, participants are

often interviewed, asked open-ended semistructured

questions, or are directly observed or involved in

discussion by the researcher to explore their lived

experiences. According to Moustakas (1994), phenomenology is

the first person report of a lived experience as described

by an individual. When the researcher’s own assumptions are

not allowed in the data, the researcher’s meaning and

interpretation or theoretical concepts cannot bond with the

information/participant (Moustakas, 1994). Data collected

are then analyzed and used to provide a report of the core

of this experience for all participants (Creswell, 2009).

This explanation contains patterns or significance of what

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participants experienced and the manner participants

experienced it (Creswell, 2011).

I sought to comprehend the experience of Nigerian

primary caregivers caring for loved ones with ADRD. The

design was chosen because it enabled me to seek a

caregiver’s perception of the phenomenon of accessing

support, his or her roadblocks, the impact of social stigma

associated with mental illness, culture, and how these

perceptions were integrated into the individual’s lived-

world. I considered the research problem, scope of the

study, and the nature of data required in the selection of

the design.

By using a phenomenological approach, I was allowed to

talk about the research problem, which was the need to

comprehend the caregiving experience of these Nigerian

primary caregivers. Once again, these factors coincided with

a phenomenological approach. Finally, the nature of the data

required was contemplated. To achieve the individual

experience of Nigerian primary caregivers on how they

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accessed support for someone with ADRD, I conducted indepth

interviews using semistructured questions (Walls et al.,

2010). Creswell (2009) reported that researchers may

encounter challenges when conducting phenomenological

studies such as having trouble totally bracketing and

separating their personal reactions and beliefs from those

of the participants, finding suitable subjects who have

experienced the phenomenon under investigation, and having a

strong understanding of the philosophical standpoints of

phenomenological research.

The phenomenological approach frequently included my

engaging in epoche, which is referred to as bracketing. To

accomplish epoche, researchers are required to set aside

their personal biases and presumptions and emphasize the

information and data being collected by participants

(Creswell, 2009). This approach allows the researcher to

have a “fresh” viewpoint and outlook on the phenomenon being

studied, leading to the term phenomenological approach

(Creswell, 2009). Textural and structural descriptions were

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developed after data analysis. Textural description refers

to what participants experienced, and structural

descriptions refer to how they experience the phenomenon

(e.g., conditions, situations, contexts; Creswell, 2011).

The combination of textual and structural descriptions

contributed to capturing the core of the phenomenon,

including its distinct and shared qualities (Lee & Smith,

2012).

In the completed study, the phenomenological approach

worked best to research the lived experiences of how

Nigerian primary caregivers accessed support for people with

ADRD (the phenomenon being studied). The approach allowed

the researcher to hear what experiences Nigerian caregiver

have gone through, including the struggles they have had and

the support they have obtained. This type of information may

give health care providers a good awareness into what

caregivers’ lives are like and allow them to offer

caregivers excellent support and information. A researcher

using a phenomenological approach can use a small group of

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participants to discover the meaning of an experience

(Connelly, 2010; Moustakas, 1994). According to Lester

(1999), the use of a small sample size may be questionable

in phenomenological studies because critics may question the

validity of such studies. To combat their concerns, the duty

of a researcher using phenomenology is to make certain that

the correct research methods are followed and the sample

technique aligns with the research design selected (Lester,

1999).

Target Population: Selection and Sampling Procedures

A nonrandom, purposeful sample of Nigerian primary

caregivers from two Presbyterian Churches in Umuahia, Abia

State in Nigeria was obtained. Purposeful sampling was used

in the selection of the participants based on their ability

to contribute an understanding of the research problem and

central phenomenon of the study. Selecting the sample method

came with advantages and disadvantages. Some of the

advantages to this sampling approach were that it permitted

me to collect in-depth data about Nigerian caregivers in a

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suitable, reasonable, and timely manner. Additionally, I

became well-informed about the basic data, tendencies, and

relationships that existed in this specific group of

caregivers. This information may be valuable for further

studies that can additionally explore whether these

relationships relate to a larger segment of the Nigerian

primary caregiver population. Though advantageous from these

perspectives, there were numerous limitations associated

with this sampling method.

Data collected by a purposeful sampling method cannot

be generalized outside of this group of Nigerian primary

caregivers from two Presbyterian Churches in Nigeria. Thus,

it is likely that data, trends, or relationships apply

exactly to this group of caregivers and not the general

population. The disadvantage of this situation is that using

this information in the formulation of educational or

support program in designed programs may not be congruent

with the needs of Nigerian primary caregivers in general.

This next drawback is credibility. The lived experience of

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participants is a mixture of numerous issues reaching beyond

their gender and the church in which they are members. This

lived experience could possibly be swayed by the perception

of the care recipient, accessibility of support devices,

education of caregiver, relationship to the care recipient,

and so on.

Though the objective of the current study was to

explain a phenomenon, the explanation of this phenomenon

could have possibly been affected by the sampling method.

The final restriction was related to the participants.

Participants willingly decided to participate in the current

study, yet the reasons behind this decision were indistinct.

The essential decision procedure could have had significance

on their lived experience. I don’t not know why some

participants agreed to participate while others did not. Did

the ones who chose to participate do so because their

experience had been a hopeful one? One on other hand, did

others refuse to participate because they were feeling

devastated, or even awkward talking about their present

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challenges with a female researcher? A larger and broader

number of participants would be the only way to ease these

disadvantages.

Creswell (2011) posited that population is a group of

individuals who have similar characteristics. Moustakas

(1994) suggested that to secure an appropriate sample, a

phenomenological researcher should search for participants

who experienced this phenomenon, were eager to participate

in a long interview, approved of giving consent to tape-

record or videotape interviews, and were willing to provide

permission to publish the study results. The criteria of the

selection of the participants for the study also included

caregiver participants who were over the age of 45 who must

have been providing care to the individual with ADRD for at

least one year or more and for at least 8 hours a day and 5

days a week, who were willing to be interviews for at least

60 minutes, and who were able to read and understand basic

English. The sample was limited to men and women from the

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two Presbyterian Churches who were the primary caregivers of

individuals living at home with ADRD.

I sought out 10 participants from 18 who volunteered

from two Presbyterian Churches. I wrote to the respective

churches and obtained consent for recruiting candidates for

this current study. Upon receiving approval from both

churches, I traveled to Nigeria and made the announcements

during church services for both churches and provided each

church with informational flyers, which included contact

information. Both of these churches were selected because

primary caregivers trust their pastors and tend to seek

spiritual help for their loved ones, for they may believe

that the care recipients were suffering from a spiritual

attack or were tormented by evil spirits. None of the sites

had any process of review. Rather, I obtained permission

from the pastors of the respective churches. Upon receipt of

specific study details with the congregation after service,

a meeting was set, during which I provided the members with

informational flyers to present at a small meeting after

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service. I also went to the other church the following

Sunday and announced the research topic during the service.

After discussing the current study in detail after the

service, several members agreed to participate after meeting

inclusion criteria. Therefore, I was able to recruit at both

churches.

According to Creswell (2009), sampling is a subcategory

of the target population that the researcher plans to study

for discussing the target population. Neuman (2011)

suggested that sampling in qualitative research study

emphasized discovery cases that would help the researcher’s

understanding of the events of social life in an exact

setting. In this phenomenological study, the sampling used

was purposive. Creswell (2009) stated that purposive

sampling increases research understanding of the selected

individuals’ experiences. The final goal was to get cases

rich in information for the purpose of the study (Creswell,

2011). For purposive sampling, Creswell suggested that the

researcher should think through (a) the research question,

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(b) analytical framework, and (c) the account being

developed in the framework before choosing the sample.

Setting

I intended to interview people in their homes, offices,

enclosed private rooms at my home, or any other secluded

locations of their choice. The locations were jointly

determined by the researcher and the caregivers with

expectation that the caregivers would feel more relaxed in

familiar places than in unfamiliar ones. Interactions with

the caregivers were discussed based upon suitable times for

the researcher and the caregivers.

All of the participants indicated that they wanted to

be interviewed in their own homes so that I could see the

care recipient. This decision seemed to increase the

participants’ level of ease to engage in an interview

(Josselson, 2007). Six participants were from one

Presbyterian Church and four participants were from the

other Presbyterian Church, Umuahia in Abia State, Nigeria.

The homes were customary comparable to those of lower-class,

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residential neighborhoods in the United States. The

interviews were conducted in the room of choice as selected

by the participants. Eight participants chose to be

interviewed inside their bedroom area so that nobody would

hear the interviews, and two participants chose the living

room area so that the care recipient would be watched for

during the interview. In other cases, they were engaged in

other rooms with family members.

Instruments/Measures

The researcher’s interview protocol, created by me,

served as the primary instrument for this phenomenological

study (Moustakas, 1994). Semistructured questions were used

to motivate the participants to express their views of

caring for someone with ADRD. The interviews integrated

probing questions to obtain thorough responses from a number

of the participants (Greenstein, 2003; Sprenkle & Piercy,

2005). Before being involved in this study, I conducted a

field test and interviewed three professionals in the

geriatric field to determine the efficacy of the interview

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questions and their alignment with the research questions. I

also used tape recorders to audiotape the interviews, a

locked file cabinet to store the information, and private

locations to conduct the interviews.

I was the instrument who collected the data and

analyzed them. Appendix B contains a list of the demographic

data that were collected. The interview questions were

constructed by me to address questions connected to the

theoretical approaches to culture mentioned in Chapter 1. It

is indicated next to each interview question and shows which

research question and theoretical perspective were being

used. I generated the following interview questions to guide

the semistructured interviewed process. The primary research

question was used to guide the present study, “How do

Nigerian primary caregivers in Abia State, in Nigeria

experience a family member’s mental deterioration from

dementia related disease?”

The primary question was supplemented by two corollary

questions to add depth to the study. The two corollary

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questions focused on how caregivers perceive the resources

or lack thereof to them and the roadblocks if any in

accessing resources. The two corollary questions were as

follows: “What are perceptions of resources available for

Nigerian primary caretakers who have a family member with

ADRD?” and “What roadblocks do caretakers experience in

trying to get care for their family members with ADRD?” The

two corollary questions of the study aligned with the

objective of the primary research question by providing

supporting evidence through the lived experiences of the

participants on accessing support. The objective of the

corollary questions was to provide an outlet to explore the

lived experiences of the participants and to understand the

intimate connection of the participant with the phenomenon

under study. The probing interview questions for this study

included the following:

1. What is your daily life like caring for your loved one

with ADRD?

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2. How do Nigerian primary caregivers explain their

understanding of ADRD?

3. What are some of the caretaking resources that are

available to you in this situation?

4. How do family members support your care of the loved

one with ADRD?

5. What do you experience as the biggest roadblock in

getting care for your loved one with ADRD?

6. How does the Nigerian culture view ADRD?

7. What caretaking practices for a family member with ADRD

are culturally influenced?

These semistructured interview questions were enhanced

by probing questions that fortified more in-depth responses

from the participants. Probing question can be used as

guidance to gather more information in a phenomenological

study. The conceptual framework provided a basis for the

research questions. I asked each participant the same

interview questions. I asked them in the same sequential

order to ensure reliability and validity (Creswell, 2011).

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The questions and conceptual framework were suitable methods

for understanding the lived experiences of Nigerian primary

caregivers accessing support for someone with ADRD

Wade (2006) posited that .qualitative research has

exceptional value for investigating difficult matters

through in-depth interviews. Wade indicated that qualitative

research does not allow for generalization because of the

small numbers in the sample. Sprenkle and Piercy (2005)

noted that phenomenological researchers were more interested

in transferability and accurately reflecting a given

participant’s experience than in generalizing the

experiences of all of the participants.

Another drawback was that the interview questions for

the caregivers would not be adequate to summarize their

experiences and develop an approach that brings about

understanding for the general community. Leedy and Ormrod

(2013) affirmed that qualitative research is usually to

answer questions about the difficult nature of a phenomenon,

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often with the purpose of telling and understanding the

phenomenon from the participant’s point of view.

In addition, the researcher presumed that the

participants would be forthcoming with their responses

during the interview process. Still, Fowler (2002) stated

that a great disadvantage was the increasing trend that

people might not respond and answer delicate questions,

though that issue did not come up during the interviews in

the present study. Still, I kept these issues in mind as

themes emerged during the interviews.

Data Collection

Before engaging in this study, the researcher

interviewed three professionals in the geriatric health

field. Field testing was vital to this study because it

permitted me to test the interview questions for

appropriateness and to evaluate whether participants would

be able to involve themselves in an in-depth discussion

about their lived experience of how they access support for

someone with ADRD (McConnell-Henry et al., 2011). The

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recommendation for three participants was based on a

triangulation practice in which multiple viewpoints were

achieved and perhaps some form of agreement was reached

between at least two of those selected (Creswell, 2009). The

researcher asked for feedback from the participants that

addressed any identified ambiguity.

Qualitative research is distinguished from quantitative

research in its use of interviews or observations so that

the viewpoints of the participants are not limited

(Creswell, 2011). According to Giorgi (1997), the data

collection in a phenomenological research study consists of

six basic steps: (a) collecting of verbal data, (b) reading

the data, (c) breaking the data into parts, and (d)

organizing the data. The final two steps are (e) expressing

the data from a disciplinary perspective and (f)

synthesizing the data for the objective of reporting. Data

collected came from open-ended interviews with the objective

of exploring the lived experiences of participants. The

interviews averaged approximately 60 minutes and were

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audiotaped and later transcribed by me. All interviews were

conducted on different locations selected by the

participants.

The procedure involving approvals to conduct the study

was originated by sending a letter to the selected

Presbyterian Church pastors and requesting permission to

conduct research through the churches (see Appendix A). The

letter included the purpose of the study and target

population. After receiving the pastors’ agreement to

participate in the research, Capella University approval was

obtained, and the IRB review was approved. I traveled to

Nigeria and went to each church and announced the study to

the congregation during worship services. After services,

the flyers were given to members and posted on the church

bulletin board. The congregation members who were interested

contacted me by telephone and scheduled a meeting. The

researcher explained the purpose of the study and provided

additional details pertaining to the data collection,

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analysis of data, privacy, confidentiality, and publishing

of the results.

The study was completed using 10 participants who were

recruited from two Presbyterian Churches in Umuahia, in Abia

State, Nigeria. No more participants were recruited due to

clashing schedules and reluctance of some church members to

participate in the study. Nevertheless, data saturation was

reached after six participants were interviewed. No new

information was added to the themes from the seventh,

eighth, ninth, and tenth participants.

Participants were contacted the day preceding to the

scheduled interview to confirm their appointments. I

identified herself when she arrived and again reminded

participants that their participation was voluntary and that

the interviews would be audiotaped. Once informed consent

forms were reviewed and signed in a private location

selected by the participants, I visited each participant’s

desired interview location the same day and began the

interview procedure. At the end of the interview process,

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the participants were given the chance to ask any questions

they may have had.

In this study, participant responses to interview

questions were audiotaped regarding their caregiving

experience and how they accessed support. Interviews were

achieved in a private location of the participant’s choice

that provided privacy and confidentiality. Caregivers were

informed that their participation was voluntary and that the

interviews could be ended at any time they desired.

There were no questions asked relating to the study,

but questions related to the sickness were asked.

Participants were then counselled that I could contact them

in the near future should I need explanation on any

inaudible statements caught on audiotape. Participants were

informed that a written report of the research would be

produced at the end of the study and that they would be

called to review the data and provide feedback on the

findings. They would be offered a copy of the summary.

Participants were showed appreciation for their

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participation, and then the researcher left the interview

place.

Data for the main study were collected by establishing

a friendly and objective environment with the participants

throughout the interview process. The interview data was

audiotaped and transcribed by the researcher to capture

fully the caregivers’ emotional gestures (e.g., screaming,

crying, etc.) in recalling their experiences. The

transcriptions were stored on a password protected computer.

The interview recordings were kept on a password access

device.

Because the study was a phenomenological one, the main

method of data collection was through in-depth interviews

involving the use of open-ended questions and follow-up

probes (Wall et al., (2010). This qualitative research was

driven by the theoretical framework of Dilworth-Anderson et

al.’s (2012) cultural theory and Bandura’s (1977, 1997)

social learning theory. These frameworks were used to

develop the research questions. The theoretical framework

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also demanded the thematic data analytic system used.

According to Bless and Higson-Smith (2000), participants

were the primary unit of analysis with their informed

consent.

I anticipated that the interviews would generate

excellent and complicated data that were analyzed from the

viewpoints of the participant’s narratives and symbolic

interactions. The performance and analysis of the outcomes

provided numerous viewpoints of the caregivers’ lives as

they made sense of the behavior of their loved ones with

ADRD and how they access support. I maintained a journal of

field notes to understand better how caregivers care for and

access support for those with ADRD. The field note journals

contained a detailed account of experiences told from the

view point of the caregiver including impressions of the

emotional state of the participants when they were relating

their experiences. The journals were significant because

they recorded subtle emotional signs that could easily have

been forgotten. During the interview process the researcher

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obtained the (a) names of participants, (b) addresses, (c)

duration of the interview sessions, (d) researcher’s

responsiveness to caregivers’ questions, and (e) coverage of

important questions and information.

Methods to interpret and organize the data comprised

the development of research questions. This work was

finalized in consultation with geriatric and neurological

professionals, research on caregivers, and shared input and

feedback from the researcher’s dissertation committee.

Nevertheless, at the beginning of the study, the processes

and instruments were assessed for validity and reliability

based on the theories of Dilworth-Anderson et al. and

Bandura, the researcher’s understanding of the field, and

the caregivers’ lived experiences. Maiers, McKenzie, Evans,

and McKenzie (2009) described the four aspects of data

collection: (a) caregiver’s demographics and interview

questionnaires; (b) follow-up with caregivers, if necessary;

(c) integration of the data applicable to ADRS; and (d)

commitment of resources to the study. The outcome measures

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consisted of the data collection, burden on caregivers, and

their roadblocks and services that might be helpful for

other caregivers to know in receiving support and treatment.

The level of my participation in qualitative studies

entails that I disclose their values, biases, expectations,

or assumptions at the inception of their study (Creswell,

2009; Creswell, 2011; Glicken, 2003). The author of the

present study is a middle aged, Nigerian immigrant woman.

She has been a social worker and has worked with Alzheimer’s

patients in nursing homes in the past five years and worked

with home health agencies in Michigan, Indiana, and Kentucky

for more than 10 years. During this time, she experienced

the challenges associated with caregiving both

professionally and personally. Approximately 60% of her home

health patient population suffered from some sort of

dementia. As a result, she understood the effects this

disease has on the patient, caregivers, healthcare

providers, and society. I had no affiliation with the

participating churches or participants of this study. The

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data were audiotaped and transcribed verbatim, eliminating

the opportunity for bias or misinterpretation at the data-

gathering phase of the study. Nevertheless, my professional

and personal experiences could have possibly affected her

interpretation and following classification of caregiver

responses. I made a second home visit to each participant

and made available the transcribed interviews for final

review and revisions as necessary before conducting the

analysis and coding. No changes were made to the interview

transcripts.

Data Analysis

Analyzing qualitative data consisted of a range of

analytical strategies that were comprised of sorting,

organizing, and reducing the data to a less wieldy state to

later bring together and interpret (Schwandt, 2001).

Qualitative research produces significant data that can be

analyzed by deductive analysis though inductive analysis

(Smebye & Kirkevold, 2013). The analysis of the qualitative

data comprises an emerging sense of the data, coding

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descriptions, and themes of the phenomenon, making the

qualitative method appropriate to explore the meaning of the

lived experiences of individuals (Creswell, 2009).

The manual analysis and coding of data were finalized

using the modified van Kaam method (Moustakas, 1994). For

example, all codes were entered into an Excel sheet to allow

for manageability. All transcribed interviews were kept in a

binder to help with organizing and managing the data. If an

important statement was used and written in excel sheet, a

code, which also indicated the code of the participant, was

given to locate the origin of the important statement

easily. The van Kaam method was used to analyze the

transcribed interviews of the participants. The following

steps were followed; (a) listing and preliminary grouping

(horizontalization), (b) reduction and elimination, (c)

clustering and thematizing the invariant constituents, and

(d) final identification of the invariant constituents and

themes by application. The final steps were validated

invariant constituents and themes: (f) individual textual

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and structural description of the experience and (g)

textural structural description of the meanings (Moustakas,

1994). The van Kaam method permits a researcher to analyze

the individual experiences of participants to generalize the

experiences of a specific group. The analysis conducted in

the present study provided for an understanding of the

meaning of the experiences of the Nigerian primary

caregivers.

I read each transcript numerous times and analyzed the

information in diverse ways to understand the themes,

viewpoints, and other hints given by each participants

better to emphasize different aspects of the interviews. I

examined the data for themes, emotional gestures, societal

relations, and opinions triggered by stress based upon

supports in the participants’ personal systems and

acceptance. If the caregivers were unable to verbalize their

emotions, the researcher prepared different emotion words to

help the caregivers in the process of nonverbal cues. For

instance, Shaver, Schwartz, Kirson, and O’Conner (1987)

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developed a list of 135 emotion words to classify emotions

into six categories of anger, love, job, sadness, fear, and

surprise. Therefore, I encouraged caregivers to discuss at

length the burden and emotions that have affected them. Data

derived from the interviews were analyzed by a form of

coding. I did not encounter any difficulties managing data

or sorting out themes; therefore, ATLAS, qualitative

software was not used. In addition, the interview settings

were as free as possible from background noise and

interruptions.

The analysis also included notes written to capture any

observations and reactions by the participants and the

researcher. The method of analysis allowed differentiating

the levels of the experiences of the participants. First,

equivalent value was given to the responses of the

participants. Second, the responses to the interview

questions were categorized according by the themes

identified during the interview. Third, the themes selected

during the process of reduction were built to capture the

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center of the accessing support experience. The in-depth

analysis of the answers of the participants helped the

researcher to discover the meaning and theme of the

experience being explored (Polkinghorne, 2005).

Validity

An instrument is considered valid when it measures what

it is intended to measure to address through the honesty,

depth, richness, and scope of the data collected, the

participants approached, researcher bias (Taylor et al.,

2012). In a phenomenological study, the notion of validity

becomes a question of credibility (Laverty, 2003). For this

study, the credibility focused on the explanation of the

findings. External validity reflects the degree to which the

results can be generalized to other cases (Taylor et al.,

2012). The idea of credibility signifies the internal

validity of the study, “assessed in terms of the

researcher’s reflection on the research procedure and the

participants’ ability to [recognize] experience in the

research account” (Ryan-Nicholls & Will, 2009, p. 79).

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In this phenomenological study, the threats of external

validity were connected with the settings of the two

Presbyterian Churches and individuals who offered to

participate in the study. The external validity of a

research study can be classified as transferability (i.e.,

findings provide information to other individuals who want

to apply the study to their personal experiences; Ryan-

Nicholls & Will, 2009).

Member Checking/Bracketing

To reinforce the validity of the current study, the

researcher used the following methods: member checking and

bracketing (Laverty, 2003). Member checking was conducted

during the field testing with the three professionals in

geriatrics and neurology, discussing each one of the

questions with the participants to determine the efficacy of

the questions. Member checking was also used after the

interview process was finished by conversing about the

answers to each question with the participants. Bracketing

in this study was completed by disregarding what my believed

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as well as my personal experience from the phenomenon under

study. This process included ignoring my personal experience

and evading, agreeing, or disregarding with the

participants’ responses during the interviews.

Ethical Considerations

Researchers have resisted with ethical issues inherent

in the research interview process because of the question of

possession of the caregiver’s stories, power, equality, and

culture (Scheper-Hughes, 2001). I reflected upon the power

disparity that may have existed throughout the interview

process. I also was conscious of the factors that could

potentially enforce power and impact on the caregivers’

responses and participation. More essentially, I did not

complete the investigation without the caregivers’

willingness to share experiences voluntarily from their

lives, which was difficult for some of them to discuss. The

next possible ethical issue to consider was whether I would

become too involved (Behar, 1999) with the caregivers. Behar

(1999) stated that a susceptible observer identifies his or

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her own responses and feelings to the material being

offered. I was aware of possible ethical issues that could

have arisen throughout the study and took steps to address

them ahead of time.

Informed Consent

Researchers linking human beings requires that I inform

the participants of the facts of the study by using informed

consent (Lee, 2010). The informed consent form was approved

by Capella University’s IRB and it was introduced to the

researcher as a doctoral candidate in the School of Public

Service Leadership at Capella University. An informed

consent form is an ethical obligation of research involving

human participants (Health, Charles, Crow, & Wiles, 2007).

McNamee (2001) defined informed consent “as the standard

procedure to protect subject or participants” (p. 310). The

informed consent form used in this present study included

information regarding (a) my identification, (b) sampling

methods, (c) purpose of study, (d) benefits for

participating, (e) level and type of participants

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involvement, (f) potential participant risks, (j)

confidentiality statement, (h) participants’ right to

withdraw at any time, and (g) contact information for

questions (see Appendix C).

The form elucidated that the information provided would

be kept confidential and names of the participants and the

church’s name would not be used. A copy of the informed

consent form was provided to all participants for their

records. After the forms were signed, participants were

interviewed on a one-on-one basis. In agreement with Capella

University’s human participant protocol (Capella, 2010),

informed consent and other processes had been reviewed and

approved by the IRB prior to conducting the phenomenological

study.

I did not collect any HIPPAA protection information

during her study. Even though I knew the participants’

names, their names were not shared during the interview

process, nor were they revealed in any study document. I

removed the caregivers’ personal names from all the

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documents and used their initials including initial name of

each month of the year, which was used in the transcription

of their interviews and upcoming references in the study

report. I guaranteed that ethical standards were maintained

from the beginning to the end of the present study.

Privacy/Confidentially

Privacy and confidentiality issues were discussed with

the caregivers in the informed consent form. I was aware

that caregivers’ readiness to participate in the interview

depended on how well the participants understood what the

study was about, what was projected them if they decided to

participate, and how their privacy would esteemed (Marshall,

2003). I carefully studied privacy and confidentiality

issues before collecting any data and enforced strategies to

protect the confidentiality of the data and caregivers’

responses (Pope & Mays, 2000). The signed consent form

should be the only piece of recognizable information that

proved that a caregiver participated in this study (Nkwi et

al., 2001).

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All participants were assigned fake names to protect

their identity. The participants were identified by using a

code such as GRACE or KALU. The names of the participants do

not appear on the interview transcripts; only their fake

names. The names of the participants were only left on the

demographic data sheet and informed consent (see Appendices

A and C). All other information that included the names of

the participants was kept in a locked file cabinet and was

only obtainable to me. Information maintained on a personal

laptop computer was also password protected. Seven years

after the completion of the dissertation, all written

documents, computer records, and audio tapes are to be

shredded, destroyed, and permanently erased.

Limitation of the Methodology

Because of transferability and not generalizability was

the focus of qualitative research, according to Creswell

(2009), the results from the small sample size of 10 primary

caregivers from the two Presbyterian Churches in Umuahia in

Abia State, Nigeria can be transferable to a broader

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population. There would, nevertheless, be a need for further

study to increase greater understanding of this perceptions

gained may be used to explore the issues of how caregivers

care for those with ADRD across other cultures,

socioeconomic backgrounds, and through international

dialogue. This study was specific to the Nigerian primary

caregivers at the selected two Presbyterian Churches, and

the sampling was purposive and restrictive.

On the other hand, the study provided insight and

possible solutions for each caregiver’s behavior and

experience. Another limitation of the methodology was based

on the concerns of self-reporting and the uncertainty in the

phenomenological process (Moustakas, 1994). Despite this,

the phenomenological approach remains a convenient way of

obtaining participant experiences (Mertens, 2009). Creswell

(2009) noted that internal and external validity measures

are to be employed to insure that findings from qualitative

research are viable.

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Chapter Summary

The purpose of this qualitative phenomenological study

was to explore the lived experiences of how Nigerian primary

caregivers access support for those with ADRD. A qualitative

method was carefully chosen to permit the researcher with an

opportunity to become personal with the participants and

study the meaning of the phenomenon of caregiving. A

phenomenological method was suitable for the current study

because the method provided me with the opportunity to gain

perceptive information about the phenomenon from the points

of view of individual participants. For the present study,

the criteria of participant selection were age, providing

support care for one year or more, willingness to be

interviewed for at least 60 minutes, providing care 8 hours

a day and 5 days a week, and ability to read basic English.

The target population of study included male and female

members of two Presbyterian Churches in Umuahia, Abia State,

Nigeria who was currently caring for people with ADRD. The

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sample of the study was determined by using the purposive

sample technique.

Following the ethical and guidelines of social

research, the informed consent was obtained from the

participants before the research began. The confidentiality

of the participants and the churches was protected

throughout the research process following established

guidelines. After the study was completed, the materials

used are to be kept in a locked cabinet under my custody for

a period of 7 years, at which point the data are to be

destroyed.

The data collection was performed by using one-on one

interviews with the participants. The use of indepth

interviews provided valuable information on the lived

experiences of the participants and the phenomenon under

study. The van Kaam method of data analysis helped to define

the themes gained in the process of data collection,

establishing the significance of the experience and the

occurrence of the phenomenon.

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CHAPTER 4. DATA ANALYSIS AND RESULT

Introduction

The main objective of this phenomenological study was

to provide additional research on the caretaking experiences

of Nigerian family members who were responsible for a

relative with mental deterioration from a dementia related

disease. How caregivers experienced their family member’s

mental deterioration was investigated to gain greater

understanding of the caregiving experience. The primary

research question that guided this study was, “How do

Nigerian primary caregivers experience a family member’s

mental deterioration from dementia related disease”? The

corollary questions included:

1. What are perceptions of resources available for

Nigerian primary caretakers who have a family

member with ADRD?

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2. What roadblocks do caretakers experience in trying

to get care for their family member with

ADRD?

To explore this experience, the study asked the

following interview questions were asked:

1. What resources are available for Nigerian primary

caregivers who have a family member with ADRD?

2. What is your daily life like caring for your loved

one with ADRD?

3. How do Nigerian primary caregivers explain their

understanding of ADRD?

4. What are some of the caretaking resources that are

available to you in this situation?

5. How do family members support your care of the loved

one with ADRD?

6. What do you experience as the biggest roadblocks in

getting care for love one with ADRD?

7. How does Nigerian culture view ADRD?

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8. What caretaking practices for a family member with

ADRD are culturally influenced?

Chapter 4 contains the results of this study. The

chapter is organized based on the following topics: (a)

Introduction and Researcher’s Interest in the Phenomenon;

(b) Description of the Sample and demographic data and

participant profile; (c) Research Methodology Applied to

Data Analysis; (d) Presentation of Data, Data Analysis

Results, and Presentation of the Findings, and (e) Summary.

Data were collected using audiotaped recordings that

were transcribed by the researcher, coded, horizonalized

into meaning units, and separated into meaningful themes

that captured the essence of the caregivers’ experiences,

textual-structural descriptions, and composite textural-

structural descriptions. I also executed member checking

(Janesick, 2000) by providing each caregiver with a copy of

his or her transcript to confirm that the transcripts echoed

what the caregiver had expressed in words. Prompts were used

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to keep the discussion rolling and to guide the caregivers

to elaborate freely about their experiences.

Researcher’s Interest in the Phenomenon

I became interested in the phenomenon after having two

family members die of ADRD and being told that their deaths

were related to spiritual attacks. I discovered that most of

the literature on ADRD focused primarily on the developed

countries and that there was very little documentation on

ADRD in Africa. Realizing the growing international debate

on this important phenomenon and lack of documentation of

the African experience, I sensed that this was an area that

required attention. To this end, the researcher explored

this phenomenon using participants from her country,

Nigeria, with the hope that the findings of the study would

show certain experiences subjective to the Nigerian

situation that may not have been captured in the general

literature. I am a Nigerian teacher presently living in the

United States with my family. I traveled to Nigeria and

collected my data. The creative rationale for using a

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semistructured approach focused on letting participants

express their experiences freely.

Qualitative research was selected because the study was

conducted in a natural setting. This study topic focused on

everyday activity as participants went about their normal

routines. I utilized this approach because it focused on the

insights and viewpoints of the participants who were

studied. Wall et al. (2010) posited that the aim of

qualitative research is to understand phenomena as

experienced by specific groups of people. I was exclusively

accountable for all data collection and analysis. Even

though I had finite experience with phenomenology, over 14

years of social work, case management, and investigative

experience were helpful in conducting this qualitative

study.

I collected, transcribed, coded, and analyzed the data

with little bias or judgment throughout this study. The

findings offer a meaningful effect that Nigerians may

benefit from additional education about the illness and

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services available to patients with ADRD and their families.

Likewise, the study could possibly benefit other mental

health professionals who are involved with treating mental

disorders and providing support for their family members

Tent et al (2009) posited that clarifying the confusion

through the use of probes and answering the participant’s

questions were vital elements in qualitative research,

guaranteeing that information collected was accurately

reflective of the participant experience. The nature of this

study required the researcher to put aside any known biases

about the Nigerian primary caregiver’s experience concerning

inactive support to achieve the very essential of phenomena

as lived by the participants (Flood, 2010; Leedy & Ormond,

2013; Mertens, 2010).

Description of the Sample

Ten caregivers who were currently caring for their

loved ones with ADRD were chosen through purposeful

sampling. Leedy and Ormrod (2013) posited that the sample

size for phenomenological research can range between 5 and

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25 participants. The researcher based her selection on the

assumption that the point of saturation would be reached

with 10 participants. Out of the 10 caregivers, six were

spouses caring for their husband or wife with ADRD. One

caregiver was caring for her sister who was diagnosed with

dementia (old age sickness). Another caregiver was divorced

and one was a widow. One of the caregivers’ husbands died

during the data collection.

All the 10 caregivers were members of the two

Presbyterian Churches. To participate in the study, they had

to be members of the two Presbyterian Churches that give

consent for the study. All the 10 participants are

identified by the initials of their name and the initials of

the month of the year, as follows: Participant 1, JANE,

Participant 2-PAUL, Participant 3- JAMES; Participant 4-

GRACE; Participant 5, -STELLA; Participant 6-GLORIA;

Participant 7- PETER; Participant 8-CHIDIMA; Participant 9-

PATIENCE; and Participant 10-CLARA.

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A number of caregivers stated that they experienced

psychological problems similar to those reported in other

studies (Okoye & Asa, 2011). One caregiver reported having

cataracts, and she was not able to seek medical help because

nobody would watch her husband. Subsequently, she became

blind. Four stated that they were diagnosed with high blood

pressure. Three reported having constant headaches and they

were told it was from stress and two were diagnosed with

back pain. All 10 caregivers reported having physical

issues. Additionally, two participants were diagnosed with

back pain. All of the caregivers were between the ages of 54

to 74 and resided in Umuahia, Abia State in Nigeria. The

mean age of the participants was 63. The length of time

being the primary caregiving role varied between 2 and 7

years. The ages of their care recipients ranged from 62 to

86 years, with a mean of 75 years.

One care recipient died after his caregiver responded

to the invitation to participate in the study. The research

participant indicated that she would still be able to

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participate because she had valuable experience to offer

regarding how she accessed support for her husband. She was

able to share her experience about the very beginning and

end of her caregiving period, so she was kept in the study.

Prior to the interview, participants were given a

written consent form explaining the purpose, duration,

benefits and risks, rights and responsibilities along with a

confidentiality agreement and their right to pull out from

the research at any time without preconception (Creswell,

2009; Leedy & Ormrod, 2013). For this present study, the

consent form also specified that there would be no direct

benefit to the participant but that their participation

might contribute to the professional literature.

Participants were required to sign the consent form only

after reading, understanding, and indicating they were

willing to participate. Table 1 indicates the demographics

of the study sample.

Table 1Demographics of Study Sample

Participant Gender Age Years in Church

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Caregiving

JANE F 64 3 Presbyterian Church#1

PAUL M 61 2 Presbyterian Church#1

JAMES M 70 4 Presbyterian Church#2

GRACE F 64 3 Presbyterian Church#2

STELLA F 70 5 Presbyterian Church#2

GLORIA F 72 7 Presbyterian Church#1

PETER M 54 5 Presbyterian Church#2

CHIDIMA F 74 3 Presbyterian Church#1

PATIENCE F 50 2 Presbyterian Church#1

CLARA F 54 4 Presbyterian Church#1

Note. For gender, M = male, F = female

The caregivers’ ages, marital status, and personal

mental health problems are outlined in Table 2. The

caregivers ranged in age from 50 to 74 with the majority in

their 70s. Eight were married, one was a widow, and one was

separated. All 10 reported having some form of health

issues. Most health issues that caretakers were experiencing

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were related to being the primary caregiver. 3 provide

background information about the caregivers’ relationship

with each care recipient of interest, the care recipient’s

age, and whether the care recipient was on medication.

Table 2Age, Marital Status, and Health Issues of the Participants

Caregiver No. and Name

Age MaritalStatus

Health Problems

1. JANE 64 Widowed Back pain and stress

2. PAUL 61 Married Stress and high blood pressure

3. JAMES 70 Married High blood pressure and back pain

4. GRACE 64 Married Back pain and stress

5. STELLA 70 Married Severe headaches and back pain

6. GLORIA 72 Married Glaucoma and stress

7. PETER 54 Separated

High blood pressure

8. CHIDIMA 74 Married High blood pressure and back pain

9. PATIENCE 50 Married Severe headaches and stress

10. CLARA 54 Married Stress and back pain

The two common illnesses were stress (n= 6) and back

pain (n= 6). Other relatively commonly cited health problems

included hypertension and/or severe headaches and/or

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glaucoma (all at n= 5). Caregiver 8, CHIDMIA, explained how

having a husband with Alzheimer’s disease has affected her

physical health:

Yes, I have been diagnosed with hypertension and back pain. I predicts from all the stress that I go through daily with my husband. I lift her up every morning fromthe bed or he will stay there and not eat. I have high blood pressure. To tell you the truth, I have never hadthis until my husband became sick and started having lots of behaviors. I feel like my blood pressure will rise anytime my husband wanders out of the house. I barely eat. I never know what to do when I am alone andmy husband is on the floor.

Another example of health problem due to having a

family member with Alzheimer’ disease or related dementia

was provided by Caregiver 4, GRACE:

I am always lifting my husband up from the floor because he cannot walk straight and I don’t know if that is from the sickness. He is a big man and I am tired of asking people for help sometime. He cannot stay one place. I cannot sleep because he wanders at night. I have stress just by taking care of him alone. The doctor told me that my back pain is from lifting him. I am not on medicine because of not having money.

Caregiver 6, GLORIA, indicated that she lost her sight

for taking care of her husband with ADRD:

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I have been taking care of my husband for seven years. I am stressed out day in day out. I don’t eat and worried too much about my husband. I don’t have time togo to the doctor for check-up because nobody will watchmy husband. I was to have eye operation because of my cataract. Now I have glaucoma. I cannot see.

Caregiver 3, JAMES, discussed how he suffered

hypertension and back from taking care of his wife with

dementia:

With my age, I am bending all the time lifting things that my wife pulled out from out bedroom. It is frustrating. My wife will not let anybody give her bathbut me. I am too old to be doing all these but she is my wife. She wanders away three times a day whenever noone is watching. I developed hypertension with her wandering and fighting most of the time. I do not know what to do. My in-laws don’t care or help take care of her.

A final example was provided by caregiver 9, PATIENCE:

Yes, my senior sister is very violent and she hits people. It is very depressing and people don’t understand. She wanders out of the house without me knowing even when the gate is not open….she opens it and leave. I am always looking for her. She hit me lastyear with a cane on my head. I have been having headache from time to time. I went to the doctor because it was severe. I take headache medicine. I don’t want her to go back to the village because she doesn’t have children of her own.

Table 3 provides background information about the

caregivers’ relationship with each care recipient of

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interest, the care recipient’s age, and whether the care

recipient was on medication. At the time of the study, the

care-recipients ranged in age from 62 to 86, with two age

76, one age 68, one age 66, another age 62, one age 74, two

age 82, deceased age 86, and another age 78. One care-

recipient was a wife, and there were five husbands, one

sister, and two mothers. One care recipient was on diazepam

and the rest were not on medication at the time of the

study.

Table 3Care Recipient Age, Relationship of Participant to Care Recipient, and Care Recipient

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Caregiver Name

Care RecipientAge

Relationship of Participant

CaregiverMedication

Status

JANE 86 Mother NoPAUL 82 Mother NoJAMES 62 Wife NoGRACE 66 Husband NoSTELLA 76 Husband NoGLORIA 74 Husband YesPETER 78 Mother NoCHIDIMA 86 Husband YesPATIENCE 82 Sister NoCLARA 76 husband No

Research Methodology Applied to Data Collection and Analysis

The next segment further describes the research

methodology, data collection methods, and method analysis

used in this study.

Data Collection Procedures

Prior to traveling to Nigeria, two pastors gave me

permission to recruit research participants at their

churches. Announcements were made during church services and

during this time, the congregation was briefed on the

purpose of the study. Flyers were distributed and the people

who were interested contacted me by telephone. Before the

day of the interview, I called each participant back to

confirm the appointment. I arrived at the location selected

by each participant, greeted the participant, and reviewed

the informed consent process. Each participant read and

signed his or her signature on the form. Each participant

was advised that the interview consisted of eight questions.

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During the time of the study, all the caregivers, wives,

husbands, sister and son were living with their loved ones

who had ADRD.

The caregivers were informed that they had the right to

stop or take a break at any time during the interview

(Kelly, 2008). I also demonstrated a hand signal for

participants to use if they needed to stop the interview or

take a recess. Ultimately, none of the caregivers used the

hand gesture to stop the interviews or to take a recess.

All interviews were performed in English and audiotaped

by two different devices to assure no information was lost

due to lack of constant electricity that can result in

technical faults. Semistructured questions were used

throughout the interviews to guide the conversation between

the caregivers and the researcher. I used verbal and

nonverbal probes (Kim et al., 2006) during the interviews to

motivate the caregivers to expand on their experience of

caring for loved one with ADRD. The one-time interview

lasted approximately 60 minutes: four interviews lasted 70

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minutes and six interviews lasted 60 minutes. However, none

of the interviews was ended earlier than expected. Each

interview was recorded on a separate 90-minute micro-

cassette. A total of 10 micro-cassettes were used for the

data collection. Each tape was coded with each participant’s

initials and each initial of the month of the year (see

Table 1). Other mechanisms such as notetaking and personal

observations were used to enhance the data collection.

At the end of the interviews, the participant was given

a chance to make statement or provide any further

information he/she believed might be significant to the

study, and I expressed gratitude to each of the caregivers

for their participation. I also shared with the caregivers

how their participation in the interview added to my

understanding on their experience of caring for loved one

with ADRD. The transcripts of the interviews became one of

the most important parts as the researcher explored the

contents of the modified van Kaam method by Moustakas (1994)

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for data analysis. I found this eight step approach

effective in organizing and analyzing the data.

I transcribed the audiotape interview responses by

typing them into a Microsoft Word (2008) document. Once I

transcribed all the interview responses, I read all the

interviews carefully. The next step included rereading each

response to the interview questions and identifying the

important words (Kvale, 1969). The selected responses for

each question were then coded by detecting common responses

categorizing them into meaning units. I made notes for each

interview question on a different sheet of paper and the

early codes were reviewed for additional refining. After the

coding process was completed for each interview question,

themes became known and were presented in tabular form.

Lastly, descriptions with supporting quotes were provided.

The transcription of the tapes, which began directly after

each interview and transcribed manually by m, took her 8

days to complete. I listened to the audio tapes and compared

them with the transcribed texts to validate the authenticity

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of the transcripts. The following are the textural and

structural descriptions of all participants according to

their experience with the phenomenon.

JANE

Caregiver 1, JANE, is a Nigerian 64 year old mother of

a four children and a member of a Presbyterian Church. She

is a widow and caring for her 86-year-old mother who was

diagnosed with dementia 2 years ago at a hospital in

Calabar, Nigeria. JANE indicated having back pain and

stressed out from caring for her mother but was not

diagnosed by any doctor and not on prescribed medication.

Jane seemed apprehensive about sharing her experience. She

talked openly and put adequate effort to discuss her views

and feelings. When JANE was asked what resources that are

available for her, she turned and looked at the researcher

with a smile and responded:

There is nothing here that will help us when the government don’t even care about their people. It’s embarrassing, my sister. Nobody cares about us but for themselves. Well…..if there is one, I don’t know and have not heard. What makes you think they will have something for me when they don’t have anything that

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will help my mother? It is a daily struggle not having any thing or something that tells me know to care for my mother. I am doing everything based on what my mother taught me as a child.

PAUL

Caregiver 2- PAUL is a Nigerian and 61 year old father

of three grown children, married, and a member of a

Presbyterian Church. He is caring for his 82-year-old mother

who was diagnosed with dementia. His children that visit and

helped him take care of his mother. His developed stress and

blood pressure since he started caring for his mother. He

has been caring for his mother for 2 years. PAUL appeared

edgy sharing his experience but later started talking about

it. He stated,

It has been very hard for me and my family even though doctor told me that there was no cure. The doctor told me that I should be very careful and take care of myself because there is no medicine for me or my mother. I get so frustrated because there is nothing orservices for my mother and myself. I have high blood pressure and stressed since I mother moved in with us. Nobody check my blood pressure if I don’t go to the doctor.

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JAMES

Caregiver 3, JAMES is a 70 year old married and living

with his 62-year-old wife who was diagnosed with Alzheimer’s

disease at a hospital in Calabar, Nigeria 4 years ago. He

has five grown children that help him care for his wife.

James has complained of having high blood pressure and back

pain. He is a member of the Presbyterian Church. He was very

pleased that someone came to his house without being afraid

of his wife to interview him. He was eager to discuss his

experience without any hesitation. He stated,

This is the worst sickness that I have ever seen. WhenI used to go to the village, I used to hear old age sickness but did not think it will happen to my wife because she has been caring for herself until this sickness started. There is nothing available for me that will help me care for my wife. When I asked the doctor that told me it was dementia, he did not tell mewhat I should be doing or any services available for mywife. It is very frustrating and makes me sick sometimes. I am stressed all the time and don’t know how to control it. It is very tough when you don’t haveanything that will help you go through this journey.

GRACE

Caregiver 4, GRACE is a 64 year old mother of four

married ladies with children. She is a member of the 170

Presbyterian Church, caring for her 66-year-old husband for

3 years. At first, GRACE was unable to open up during the

interview. She was ashamed that her husband was acting like

a mad man. Grace stated that she has been sick for the past

year with back pain from lifting her husband. She is not on

doctor’s care. I told her that it was okay for her to feel

that way and she became relaxed and talked openly. She

stated,

It is frustrated when you don’t get any kind of resources that will help you care for your loved one with this type of sickness. This is my first time of seeing something like this. I went and ask my neighbor who happened to be a nurse if there is anything available that will help me or teach me how to care or what to expect and she said no that she know of. It is very stressful and my family too. I cannot abandon my husband because I don’t have any resources. I was not brought up that way.

STELLA

Caregiver 5, STELLA is a 70 year old female with five

grown up children that lives close by her. She is a member

of the Presbyterian Church. STELLA has been caring for her

76-year-old husband for the past 5 years. Stella has been

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having severe headache and back pain for the past two years.

He was diagnosed with dementia or “old age sickness”:

It is very awful. Very stressful caring for someone like my husband and at my age. There is nothing available that will help or teach me how to care for someone like my husband. Our government don’t care about other people just themselves so they cannot show us anything to will help us care for people like my husband. I do what I know how to do without their resource.

GLORIA

Caregiver 6, GLORIA is a 72 year old retired teacher.

She has grown three children with one having special needs.

She is a member of the Presbyterian Church and has been

caring for her 74-year-old retired husband for the past 7

years since he was diagnosed with Alzheimer’s disease when

they went to see a psychiatrist in Lagos, Nigeria. Gloria

has glaucoma, blind, and stressed out but is under doctor’s

care. They lived with their two kids that helps caring for

their father. GLORIA was very happy to discuss her

experience and wanted to learn more about the disease from

the researcher. She reported the following:

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This is the worst type of sickness that I have ever seen where someone will act like a baby and cannot evenknow who his wife is. There is nothing in this country that I know of will help me as a caregiver or my husband. I have asked when I used to see well and was told there was nothing for me nor my husband. I don’t look for anything anymore and just do what I can to stay alive so that I continue to care for my husband.

PETER

Caregiver 7- PETER is a 54 year old separated from his

wife and taking care of his 76-year-old mother who was

diagnosed with Alzheimer’s disease when he took her to

Calabar hospital 5 years ago. He is a member of the

Presbyterian Church with three teenage children. The

children lives with their mother but visits to relieve their

dad. PETER appeared to be spirited and ready to begin the

interview. He was very talkative and eager to discuss his

experience. He remarked,

This sickness is terrible and sad for anybody to handlewithout training or resource to help care for loved one. Sometime, I don’t know what I am doing because I have never heard about this sickness before. The doctortold me to just take care of myself because it will getworst as the disease progresses. There is no book that I have seen or given that I can read to help me know what I am doing. The government don’t care about their people and I am not ready to go and start looking for

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resources. If you have anything that will help me, please help me and I am ready to read because I am an educated person.

CHIDIMA

Caregiver 8, CHIDIMA, is a74 year old with six children

and a member of the Presbyterian Church. Her husband died

during the data collection after she accepted to be

interviewed. He husband died three day that I visited them.

Chidima has been taking care of her 86-year-old husband for

three years who died during the data collection process. He

was diagnosed with Alzheimer’s disease 3 years ago. He was

on medication but was not doing well. Chidima also developed

back pain and blood pressure during the three years she was

caring for her husband. She was not nervous and was ready to

tell her experience. She commented,

Well, it is very hard to do when you don’t have anything that educate you what you are doing right or wrong or about the disease. But I did it without any resources because I looked everywhere and asked my doctor’s friend but did not get anything. When you stayin this country, you know that there is nothing when itcomes to sickness. Anyway, I did not make it my priority to check because I know my system very well and will be a waste of my time.

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PATIENCE

Caregiver 9, PATIENCE is a 50 year old married with

children. She is caring for her 82-year-old sister who was

diagnosed early stages of dementia 2 years ago. Her sister

did not have any children to care for her. PATIENCE is a

member of the Presbyterian Church. She is a school teacher

that complained of having severe headache and stress due to

lack of rest. She sat gently and was soft spoken during the

introduction. She became talkative when asked to describe

the resources available for her. She responded,

I don’t know if you are dreaming for asking me such a question as if you are not from this country. Nobody will give you or help you when it comes with something like mental illness. I am a teacher so anything I get is by reading about dementia and on my own. Some doctors don’t even know what they are doing not to talkof helping you locate resource for yourself or someone else. I am doing what I learnt from my mother and family members. My sister, there is no resources available for me in this country.

CLARA

Caregiver 10, CLARA is a 54 year old married with

children and a member of the Presbyterian Church. She has

been caring for her 76-year-old husband who was diagnosed 175

with dementia 4 years ago. She is healthy only experience

stress and back pain that comes with caring for a family

member with mental deterioration. CLARA was so happy and

willing to share her experience. She stated,

It has been a living hell. I am very serious. I have never seen such a sickness in my life. There is no resources for people like me that will help me in this situation. I have been everywhere and looking for help.The doctor that diagnosed him first told me that I should get ready because there is no cure or anything that will help me or him. I have never seen or hear anybody suffering from this that I can ask the family how they are doing it. Because it is like mental illness, nobody is ready to talk about it outside theirhome. Federal Medical Center don’t have anything that will help people like me, the caregiver or my husband. It is very frustrating and I get emotional or stressed out whenever I think about this. I am using what my mother taught me on how to care for people and what my culture entail.

Question 2. What is your daily life like caring for

your loved one with ADRD?

JANE: Participant 1

Taking care of a loved one with this type of sickness can be a challenge. Not knowing what to expect every day you wake up is a problem to plan anything. Em….I don’t have life again or time for myself. I focus my attention on my mother to make sure she is okay for the

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day. I am changing her all the time because she cannot control her bladder. I…don’t go to bible study again because nobody will look after my mother (crying). I have back pain and stressed out for lifting my mother because my husband died and don’t have anybody to help me. Em…am mentally and physically tired before the end of the day but she is my mother.

PAUL: Participant 2

Did you ask about my daily life? My sister…. no such thing again since my mother moved in with in with us. Idon’t have life for my wife and my children because I make sure she is fine. I have been staying home becausemy brothers and sisters told me that they can help me. My wife is a school teacher and I am a shoemaker. We take turns going to church because we cannot leave her alone. It is embarrassing seeing my mother like this. Em….I have B/P and cannot afford medicine due to not making any money right now.

JAMES: Participant 3

Ever since my wife got sick, I have not been myself again. I have to care for her than myself. I am older than her and don’t have daily life again. My sister will give her a bath in the morning and I help feed herbecause she fight them. I don’t go to meetings anymore.Makes the decision that she use to make. I have blood pressure but don’t go to doctor since my wife always like to go out with me. It is shameful to take her out and don’t go because of that (shakes his head and stands up).

GRACE: Participant 4

It has been very frustrating and depressed not able to do what I used to do due to my husband being sick. I cannot take him anywhere because of his behavior and

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what people will say about him. I am ashamed to go anywhere because some people will ask me about him. I stay home every day and wash his clothes, cook and clean because I don’t want anybody to see him act like mad man. I cannot go to women’s’ guide, prayer meeting and any church function because people will not watch him. I give my neighbor money to go to the market for me since I am not able to go.

STELLA: Participant 5

I have never seen such a thing in my life. Em….we have been married 50 years and always go out and traveled tosee our children. Since he became sick…..I have never go anywhere or visit our children. They visit. I am an elder in my church and the head of prayer group. I havenot been doing my job and I told them to make someone our prayer group head because I cannot leave my husbandalone. Well, life is not the way it used to be (crying). Every morning I get up before him if he is not wandering in the house, I get his food ready because he would not let me do anything. I give him a bath and dress him for the day. We go from there. E….I do things when he is resting or my sister stop by to check on us.

GLORIA: Participant 6

Have you ever seen mad people wanders along the street?That is how my husband is. I have to sit down and hold his shirt so that he will not go anywhere. I have not left my husband since I became partially blind due to glaucoma. I am chasing him and calling him all the time. People don’t like to watch him because he is intothings. This is just to tell you what my daily life is like….I cannot go out to collect our pensions at the end of each month. I have to send a friend. I don’t cook like I used to because of him being sick. …not strong I used to be. I was not able to do surgery or

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see the doctor for my eye and that is how I am partially blind now. I am busy day in day out with him and don’t have life. I have not been enjoying my retirement like others. It is very frustrating.

PETER: Participant 7

So depressing. Emotionally disturbed. Don’t know what to do anymore. I don’t have life anymore. My wife left because I was giving all my attention to my mother. Every morning, I help my sister get our mother up if she is not up yet. I watch her while food is being prepared. I am home most of the time since my sister cannot care for our mother by herself. I don’t have job. I cannot travel to the village anymore. I am not in any church organizations like before. I have blood pressure just from caring for my mother. I lost lots offriends and relationships because I don’t have time. Mydaily life depends on my mother’s now.

CHIDIMA: Participant 8

When you have someone being sick like my husband, there is no life for me the caregiver. I used to wake up early in the morning and start my day. I will take my own shower after praying. Them prepare something for my husband then give him a bath with the help of my son before he goes to work. I concentrated on him instead of my business. I am an elder in our church but was not performing my duty only to go to church ifI have someone looking after him. Em…..not able to travel, sleep, or have friends over. I did not want them to see my husband. ….difficult to plan my daily activities.

PATIENCE: Participant 9

Get up early morning and take out all the wet sheets. My sister cannot control her bladder due to the

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sickness. ….wash everything. Give her bath and get her ready for the day. E….I do this every morning unless I am sick. I don’t have life for myself. I have severe headache and I don’t go to doctor. I don’t have money. My daily life is affecting my marriage even though my husband don’t talk but I know.

CLARA: Participant 10

My daily life depend on if my husband had a good night or not. After prayer every morning. I clean and remove things that he puts on the floor or off the shelves. I give him bath. We eat and if there is medicine for him I give him. I keep him in the room closed the door and have my bath. I wash clothes while he sits beside me. We do this every daily and it is our daily routine.

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Question 3. How do Nigerian primary caregivers explain

their understanding of ADRD?

JANE: Participant 1

I don’t really understand what Alzheimer’s is. I have never heard about this disease in my life. I know what dementia is. When someone is not able to function. Unable to follow direction. …..wanders without direction. When a person experience memory loss. Some experience mental deterioration just like my mother.

PAUL: Participant 2

My understanding is when a person experience memory loss. I was told it is just like dementia. Unusual changes in the brain. When a person start to depend on another person for their daily life just like my mother. Problem remembering familiar people or name.

JAMES: Participant 3

I believe when a person start to forget familiar things.em….my wife experienced this and that was why I took her to the hospital. When a person wanders and don’t know how to get home. Doctor told me that it is acommon form of dementia and you cannot cure it. My wifeused to sleep a lot and not able to do her daily activity. Suffering from spiritual attack. Madness...

STELLA: Participant 5

Mm….. well, I don’t know about Alzheimer. But my husband cannot make decision when counting his money, not able to make decision about his business. Will weartrouser and shirt dirty. He used to dress up clean whenhe go out. I explain dementia based on what the doctor

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told me, he said that is dementia. Dementia is when a person start to lose things cannot remember where it is. Wanders around. Don’t remember how to come back home.

GLORIA: Participant 6

My understanding of Alzheimer or dementia is having memory loss the doctor told me. Cannot do normal job that he used to do. Well…. Forgetting important things…..like my husband cannot remember our children’s’ names even mine. Asking the same information all the time is part of my understanding ofAlzheimer or dementia.

CHIDIMA: Participant 8

Alzheimer or dementia is when a person loses his/her memory. Forget children’s names. Unable to sit one place. Wanders around and unable to remember how to getback home. Ask the same question all the time. When a person cannot manage their money. Hold conversation.

PATIENCE: Participant 9

My understanding of Alzheimer or dementia is a person having memory loss. Forgetting new things that just happened. Wanders everywhere. Not knowing how to get back to the house. Cannot hold conversation.

CLARA: Participant 10

Person has mental decline. Depend on other people for day to day activity. Forgetfulness. Unable to make decision. Loss thing complain of someone taking their things like my husband. Ask the same question more thanten times.

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Question 4: What are some of the caretaking resources

that are available to you in this situation?

JANE: Participant 1

I have no idea if there have any resource for me. I have not looked because I don’t have time to go out andlook for one

JAMES: Participant 3

I don’t think they know much about this disease so there is nothing that will help me that I know off. I asked a friend that happened to be a nurse and she saidnothing.

STELLA: Participant 5

Please let me know if you have anything because I am frustrated and sick that I have no money and nothing that will help me.

GLORIA: Participant 6

Some doctors don’t know about Alzheimer. Em….they cannot help you. Our country is not like in the 60s anymore. There is nothing for me that I can tell you.

PETER: Participant 7

My sister…..you make me laugh. Do you think we are in America? This is Nigeria and nobody care. I have not seen or hear any resource for me… (laughs).

CHIDIMA: Participant 8

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They have not paid our pension…what makes you think this government will help you or show you how to take care of someone having mental illness. We are not developed yet for that. I don’t know resources.

PATIENCE: Participant 9

My sister….you have started again. Nigeria don’t care about their people. It shameful to talk about people with mental problem like my husband…..so there is nothing for people like me. If there is something…it will help me know what I’m doing. Even books will help me.

CLARA: Participant 10

If I have resources that will help me deal with this problem….my stress will go away. I am always crying because I don’t know what to do with his behavior. The doctor we saw last said that I will be suffering too….Iprepared myself. My sister….there is nothing because they don’t know Alzheimer but dementia.

Question 5. How do family members support your care of

your loved one with ADRD?

JANE: Participant 1

I have four children and they take turns to come and stay with my mother so that I can go to the market to buy foodstuff. My church members sometimes visit to help me clean or cook food because sometimes I just cry. My mother’s brothers and sisters don’t come…. theyare ashamed to see our mother behave like mad people.

JAMES: Participant 3

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Thank God I have my children. Em…my in-laws help me take care of my wife. Our daughter come to see us everyFridays….help me throughout the weekend. She cook for us and wash our clothes. I am blessed. My wife’s prayergroup visits every Wednesday……bring food and fruits forus.

GRACE: Participant 4

Thank God I get help from my children. They take turns to come let me sleep and go to the market. I still go to bible studies on Wednesday because of them coming towatch their father. My church members are the biggest support for me because someone they are always visitingand bring in food and other things for us since they know I cannot go out the way I used to.

STELLA: Participant 5

My children send money and help me take him to chemist to buy medicine or take him to private doctor that check on him because he has high blood pressure. Our friends from our community come to relieve me or watch him while I go to the market. My prayer group members visits and bring fruits and cooked soup for us. I have been blessed with people offering help because we are good people.

GLORIA: Participant 6

Thank God that I have children who are always there forus. My youngest son moved in with us since my eyes got bad. Some of the things that I cannot do now like making sure my husband has clean diaper, going to the market to buy foodstuff, watching our clothes and giving him sleeping medicine when he is not able to sleep at night….my youngest one does that now. My

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church members visit and bring fruits, cook food and come stay with me sometime for the night.

PETER: Participant 7

Well, my brothers do come sometime and help out. My only sister died in a motor accident so her children cannot stand my mother’s behavior. My brother’s wife come and take my mother to their house for few days just for me to rest and sleep. My neighbors … help me out like go to the market for me or cook good meal and bring it to us. I cannot complain how great some peopleare feeling sorry for me and helping me out.

CHIDIMA: Participant 8

My children used to come and relieve me. I had a familymember that used to come stay on weekend so that I can sleep and go out before he became worst during the time. I will go to the village on weekends by myself just to rest and sleep. It was very helpful. When I go back on Sunday. Em…. they cooked food…… washed clothes and cleaned the house.

PATIENCE: Participant 9

My children are grown but visit on weekends to relieve me. I have neighbors that check on my sister while I amat work just to make sure she is doing well. Members ofmy church visit on Wednesday for prayers and they bringfruits and cooked food for us. My children sometimes send us money for food or buy medicine.

Question 6. What do you experience as the biggest

roadblocks in getting care for your loved one with ADRD?

PAUL: Participant 2

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Not knowing anything about the disease. Some doctors cannot tell you what is wrong. No money to buy medicine. Ashamed of taking my mother outside. Nobody is ready to help you.

GRACE: Participant 4

Cannot afford to take my husband to doctor. Too embarrassed to take him out. No medicine and me having back pain all the time. Nobody is teaching me how to care for my husband.

STELLA: Participant 5

My biggest roadblock are not having money to do anything. Waiting to see the doctor at Federal Medical Center is too long…..do not have time for that when youhave someone sick like my husband. I am too old and have health problems too… I am worried about what people will say about my husband.

PETER: Participant 7

Not able to afford some of the doctor’s visits. It frustrates me how they link this sickness with madness stop me not to get help for my mother. Sometime, my mother will be very sick but I am ashamed to take her out because of how some people view madness with this old age disease.

CHIDIMA: Participant 8

My biggest roadblock was not able to take him out to the doctor because of the way people were acting towards him. It was embarrassment for me and my family,madness doesn’t have a place in this society. I would not let some family member into my home because of whatthey say. Too many red tapes just for me to take him to

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hospital. I have to wait for hours to get registered…… get a card for a doctor to attend to him….. was a wasteof my time.

PATIENCE: Participant 9

No medicine for this sickness….. nobody is willing to tell you what is wrong with my sister even the doctors.My sister’s behavior is unpredictable…..I am ashamed totake her anywhere. The way the society view madness or people behaving like my sister is very bad. Not having enough money to care for my sister is my biggest roadblock. Talk to people about my sister.

CLARA: Participant 10

Lack of awareness about this disease. The government hardly pay us any money. It is difficult to do anythingwhen you don’t have money. Doctors charge too much. I don’t have that kind of money. I have health problem that prevent me from taking my husband to the doctor all the time. Going hospital is all day thing.

Question 7. How does the Nigerian culture view Alzheimer or related dementia?

STELLA: Participant

It is madness. There is no medicine for it. Someone didsomething to this person just like my husband. Maybe his family used him through native healers to make money. Spiritual attack or evil spirit is pursuing him.

PETER: Participant 7

You cannot even say that your family member is having mental problem or wanders about. There is stigma linkedto mental illness in our culture or someone suffering

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with dementia. People will be cursing you if they see the person outside wandering. Before our culture allow us to kill the person. It used to be bad. People hid them and lock the person inside the house.

CHIDIMA: Participant 8

Not too good because having mental problem doesn’t havea place in our society. Even Alzheimer’s disease or related dementia is in the same classes. The culture views this sickness as caused by evil spirit. The person is tormented by spiritual attack.

CLARA: Participant 10

Nobody will want to have anything to do with you. Mental illness have no place in our culture. Some people will reject you including some of your family member. They will believe that you did something bad for other people. It cannot just happen for no reason.

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Question 8. What caretaking practice for a family

members with Alzheimer’s or a related dementia are

culturally influenced?

JANE: Participant 1

You don’t have to go to school or training to know how to take care of your own parents. What I am doing is what my mother taught me or watching my mother care formy father.

PAUL: Participant

As far as I know, there is no caretaking practice. I amculturally obligated to take care of my mother. I watched my family take care of our grandparents. You don’t go to school to learn how to take care of someone.

STELLA: Participant 5

It is our culture that you take care of your parents when they get old or if they are sick including your husband or wife. It is part of our cultural upbringing…… we don’t have to go to school for that. Asa wife or husband, you are obligated culturally to takecare of each other when something happen.

GLORIA: Participant 6

The caretaking practices that I am using is what I learned from my mother and grandmother when I was growing up. Em…..I don’t think about any caretaking practice. As long as my husband is sick, I am stuck with caring for him based on my upbringing. I lived with my grandmother when I was in teachers training college. I observed how she took care of her own motheruntil she died and I am doing the same thing with my

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husband. Because of the way society take mental illness, I am culturally obligated to care for him. It is very hard to take him anywhere and nobody pays attention to me when I talk. My culture states that it is the family that takes care of their own family member when the person is growing old not the government.

PETER: Participant 7

The way I’m caring for my mother is the way she took care of her mother, husband and senior sisters. It is believe that culturally, children are obligated to takecare of their parents when they get old not the government. It is what is required in our society that we have to do. Whether we like it or not, we are stuck with it.

CHIDIMA: Participant 8

My caretaking practice that culturally influence was based with my upbringing that it is my culturally obligated to care for others in the family the way thatmy mother taught me. I am not doing anything new. It ispart of culture and there is no going back. Part of ourculture is keep the person in the house and take care of him/her no matter the situation.

CLARA: Participant 10

I think the way we take care of the people we love is our cultural nurture. I remembered my mother teaching me when I was young how to care for my siblings and have carried that with me since. We were taught that itis our responsibility that we take care of our parents

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when they get old not our government. In this country, if you depend on the government, you will die.

The data collected were transcribed, structured, and

then analyzed using phenomenological approach, which

included a modified van Kaam Moustakas (1994) method. Next

is the data analysis.

Data Analysis

From the verbatim transcripts, several substantial

statements were taken out. The table below shows some of

these important statements. Emerging from the substantial

statements were eight core themes that summarized the

textural and structural description of the participants’

experiences with the phenomenon. The methods used to explore

the information were developed by Moustakas’s (1994) eight

steps of the phenomenological process were used for data

analysis as a guideline throughout the data analysis

process. This modified method was used to explain the themes

resulting from the raw data provided by the caregivers.

Throughout the interview process, the interviewer set aside

any biased thoughts, bracketed them, and parted data to

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identify the core of the phenomenon (Gay & Airasian, 2003).

According to Merriam (1998), a phenomenon must be bracketed

so that the meaning of the phenomenon can be explored and

interpreted without finding or bias. The researcher followed

the eight steps developed by Moustakas to analyze the

collected data:

1. Listing and preliminary grouping (Horizonalization):

Horizonalization was used to recognize every

response, speech, concept, or textural perception

that resulted from a transcribed interview or

conservation that was significant to the experience

being studied. In this study, verbatim answers were

measured and equal value and weight were allocated

to each horizon and textural description. I treated

every piece of information in the same way and with

the same level of significance. The 10 participants’

languages were coded without any preconception of

this importance. This idea of setting aside

preconception in a research is what Moustakas (1994)

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called the epoche process, which permitted each

datum to be treated individually and without any

bias. Moustakas (1994) fortified the use of

horizonalization because it allows the researcher to

comprehend the textural concepts and experiences.

The process of reading the transcripts and

reflecting on them helped me to organize the data

and become familiar with every statement.

2. Reduction and Elimination: Related interview

statements were identified and reviewed and kept.

All the statements that were not related to the

questions or redundant were eliminated (Moustakas,

1994). Those expressions that remained formed the

invariant constituents, which were then grouped

together and generated into core themes. In applying

these steps for this study, the list of 20

significant statements regarding the expressions of

Nigerian primary caregivers towards mental

deterioration is noted in Table 4.

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3. Data Grouping Clustering and Thematizing: During

this step of data analysis the related expressions

were clustered together. Those horizontal were also

clustered and labeled. The one labeled shaped the

invariant constituent that symbolized the themes of

the research study.

4. Final Identification of the Invariant Constituents

and Themes by Application: Validation. I checked the

invariant constituents and the themes against each

participant’s complete record from the transcripts.

I also checked each kind of meaning to make sure

that each theme and invariant constituent was

expressed in the data or compatible with the data.

Any statements not considered or well-matched with

the data were removed, which meant that the themes

were supported by the meaning units. According to

Moustakas (1994), the themes represented the core

elements of the experience.

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Table 4List of Significant Statements of the Experiences of Nigerian Primary Caregivers for Loved One with ADRD

No. Statement of Caregiver1 Getting lost in familiar places. Forgetting names of family

members and Friends. Say something that doesn’t make sense. Confused at all time.

2 Nothing available to help me care for my loved family member.I have to move on. It is a struggle every day because I don’tknow what to expect each day.

3 No resources available for me or my care recipient in this country. It has been a living hell. I get emotional whenever I cannot help my care recipient.

4 I cannot express how stressful it has been when I cannot go anywhere because I cannot leave him home alone.

5 I have abandoned my relationships such as kids, spouse and friend.

6 I have to make decisions that she used to make. It is very frustrating and I am getting sick myself.

7 I have health problems and don’t have time to go to the doctor or take care of myself. I think about the person I am taking care of before myself.

8 I don’t sleep sometimes because she wanders most of the night. It is difficult for me to function and I get severe headache when I cannot get rest.

9 People with mental illness don’t have a place in this societyand government don’t care.

10 Our government is into themselves not the people that get them in. Medicine is very expensive to buy.

11 Lack of money stopped me from seeking help. Too much waiting period just to buy ticket to see a doctor so I don’t have that kind of time to waste.

12 Some hospitals don’t have the equipment to diagnose Alzheimer’s unless we travel out of the state to see trained doctors which I did.

13 I don’t think we have trained doctors here to care for person

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like my husband.14 I am culturally obligated to care for my husband and I am

stuck with him in the house. It is our culture that we care for our elderly parents not the government. As the oldest son, I have to do what I have to do

15 I did not have any training on how to take care of my family member with Alzheimer or related dementia. What I am doing iswhat I was taught or watch my family take care of one of my family member so it influenced on how I do things.

16 Thank God that my family visits and relieve me sometime. My pastor and church members visits and bring food and fruits for us.

17 It seems it’s a kind of sickness that cannot be helped when families cannot afford treatment.

18 Sometimes drugs are not available or are too expensive. 19 It is caused by evil spirit. Ashamed and frustrated with the

whole sickness. All I know about this disease is that your mind slows down and forgets where you are. You forget what you are doing.

20 She is having dementia. Just forgetting. It’s the age.

The themes were labeled and listed in Table 5.

Table 5Identified Themes

Theme 1: Something is Wrong

Theme 2: Lack of Resources

Theme 3: Health Issues and Financial Difficulty

Theme 4: Obligation and Resignation

Theme 5: Insufficient Skills Medical Professional

Theme 6: Loss

Theme 7: Lack of awareness

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Theme 8: Getting Support from Family, Friends, and Church

5. Thematic Textural-Structural Description: The

transcripts were reviewed individually to obtain the

meanings and importance of the experiences by

integrating the meaning units into identified

themes. Textural descriptions of the experience were

generated. I described what the caregivers

experienced and verbatim examples were incorporated.

I built textural and structural descriptions by

explaining the themes in a narrative format, which

helped me to understand exactly “what “each

caregiver experienced.

6. Construction of Individual Structure: Using the

individual textural description and imaginative

variation, individual structural descriptions were

generated. For each participant, I integrated into

textural description a structure clarifying how the

experience happened. As I wrote the textural

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description, she echoed the condition that triggered

what the caregivers experienced. This helped me to

understand “how” the experience happened.

7. Construction of a Textural-Structural Description:

In constructing a textual-structural description of

the experience, the researcher combined constituents

of such a description. After a thorough imaginative

and thoughtful study, I clarified the experience

according to how she understood the experience from

her viewpoint.

8. Composite Description Textural-Structural: After the

individual textural-structural description was

created for each participant, a composite

description was developed represented the meanings

and the essences of the experiences of all

participants. It is the best expression of the

findings related with the study. I did not include

themes that were not common to all participants.

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Using a modified van Kaam method (Moustakas, 1994) to

this phenomenological study, I read the transcription for

each caregiver numerous times. I made several copies of the

transcripts. The first copy was chosen as the main

transcript; then I used the second copy as the working

manuscript; I read over the transcript and listed all

statements that were important to the experience being

studied. The meaning units were known from the responses to

the guiding questions. This process guided the analysis and

have structure to each caregiver’s experience. I developed a

third copy by cutting and pasting the meaning units and then

clustering them according to each question. This process

helped the researcher to understand clearly the lived

experience of the Nigerian primary caregivers as they cared

for loved ones with ADRD. Initial data were listed in groups

and separated into meaningful units, clustered into themes,

and read again for accuracy. I removed all overlapping,

repetitive, and vague expressions. The data were combined

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into statements that captured the essence of the caregiver’s

lived experience.

A multistage process was used to collect the data and

develop them for analysis based on comparable research

procedures (MacQueen, McLellan, Kay, & Milstein, 1998).

After the data were collected originally, they were

evaluated for possible errors. I examined the data a second

time to confirm their wholeness and suitability for analysis

(Sprenkle & Piercy, 2005; Yin, 2009). The transcription then

took place, and the documents that were produced were read

by the researcher. Member checking with the participants was

then conducted to correct any error of interpretations

(Lincoln & Guba, 2007). The responses were then grouped,

color coded, and recorded. No missing parts to the research

questions were found.

After coding and analyzing the 21 categories from the

transcribe interviews, I engaged in further interpretation

and coding, which allowed eight common themes to emerge from

the data to describe the phenomenon as expressed by the

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research participants. These eight themes became the central

phenomenon of the study.

Analysis of the caregivers transcripts revealed themes

of something is wrong, lack of resources, loss, obligation

and resignation, health issues and financial difficulty,

insufficiently skilled medical professional, lack of

awareness, and getting support from family, friends and

church members.

Each theme is presented with examples in the form of

straight quotation and summarized text. Field notes are also

combined into the text as well as demographic data stated by

the participants.

Theme 1: Something is Wrong

The interviews began with the question: How do

Nigerian primary caregivers explain their understanding of

ADRD? All of the caregivers began with a recall of events

that led to the actual diagnosis. For the 10 participants

little events began to merge, signaling that something other

than old age or simple forgetfulness was responsible for

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these events; seven took their care recipients out of town

to be examined. Participants described incidents which in

and of themselves were not an issue, but over time began to

cause them concern. These events varied among the care

recipients, and comprised memory lapses, inability to

complete routine tasks, disorientation to time and place,

incidents that reflected impaired judgment, difficulty with

communication, and being unable to retain new information.

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Table 6Themes and Descriptions of the Lived Experience Of Nigerian Primary Caregivers

Theme DefinitionSomething is Wrong Unable to perform normal duties

Getting lost in familiar places, misplacing things

Lack of Resources There are no formal or informal resources

Loss Unable to have freedom. He/she cannot attend bible studies anymore. Loss of relationships, travels, and visits with friends.

Obligation and Resignation

Have no choice. I am the spouse. It is myresponsibility to do that. As an oldest son, I have to do what I have to do. Leave it up to God. Tired and no hope.

Health Issues and Financial Difficulties

Stressed out, diagnosed hypertension, back pain

No money to buy medicine or pay doctor.

Blind and diagnosed depression

Insufficiently Skilled Medical Professional

Not enough medical equipment due to lack of trained professionals to use and diagnosed patient

Lack of Awareness

Getting Support fromFamily, Friends, andChurch members

Never heard about Alzheimer’s disease until care recipient was diagnosed with the disease.Family visits to relieve me sometime. I have children that visits and provide food, money, anything that we need. Our church members bring food, fruits, and watch him while him while I go to the market.

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Common among the caregivers was the fact that these

uncharacteristic behaviors evolved over a period of time, in

some cases years. One of the most noticeable characteristics

in the early pre-diagnosis stage was fear. Seven of the

caregivers who took their loved ones to be checked out

stated that once the dementia was diagnosed, the meaning of

the incident became more important to the caregivers. The

other three caregivers continued to have the fear because

they did not know why their care recipient was acting

strangely. One participant stated,

When a person is not able to care for him/herself anymore, getting lost in familiar place where he/she isliving, it is obvious that something out of ordinary iswrong in the head. I remembered signs which indicated that something out of the ordinary was happening to my mother including what her next door neighbors told me, especially as I compared my mother’s behavior in the past with the present behavior. Em… I noticed my mothersaying something that doesn’t make sense in a conversation, talking to herself and confused not recognizing her own house. I noticed the clothes placedthroughout the rooms and her inability to learn new tasks. I told the doctor and he said they are signs of dementia.

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Theme 2: Lack of Resources

The theme of lack of resources emerged as the

caregivers described their perception of resources available

for them. All participants indicated that they have

certainly not received any formal or informal support from

the government or healthcare professionals. All 10

participants indicated their perceptions of resources

available for them does not exist because the governments

are into themselves and do not care about their people

especially when they are sick. One participant reported, “I

don’t have faith in these doctors because everything is

caused by typhoid, malaria or high blood pressure and they

will not tell you if there is any resource.” Others stated

that “it is the responsibility of your children or family to

take care of the elderly person in the family who is sick.”

Another participant reported, “There is nothing available

that I know off in this country. If there is anything out

there, I don’t know. I don’t take her anywhere or go out

myself.”

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Theme 3: Loss

The theme of Loss emerged when the caregivers where

asked what their daily life was like. Some of the spouse’s

defined loss in term of companionship and communication

formerly shared with their spouses (Blahak, 2010;

Siriopoulos et al., 1999). Other caregivers related this

loss to death, or described it as the loss of the previous

affiliation they shared with their spouses or family members

(Blahak, 2010). While some caregivers have labeled the loss

of freedom, travel, going to market, visiting friends, or

the care recipient on whom they have once depended (Harris &

Long, 1999), one caregiver described “loss as the loss of

love, caring, relationship, and communication she had once

shared with her husband.” Another caregiver stated,

Me….I don’t have time for anything including my children. My wife is upset….I give all my life to my mother. I don’t take care of myself anymore. My children are complaining that I’m neglecting them and do not have time with them. I lose relationships.

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Theme 4: Obligations and Resignation

When I asked the participants what caretaker practices

for a family member with ADRD are culturally influenced, one

male participant who happened to be the only child said, “I

am culturally obligated to take care of my mother and I

don’t have to have any type of practice to know how to care

for my own mother.” Another caregiver stated,

Em…it was not a matter of having caretaker practice that would help me be a better caregiver; it is a matter of being my husband and culture required me to do it. You know one of the greatest thing about this kind of problem, at least for me, is that you know you have to come to hold with the fact that I’ve to go through these changes, which for the most part are not getting any better…it is going to be worse said the doctor, “I am going to be prepared by the grace of God to deal with it.”

Theme 5: Health Issues and Financial Difficulty

The theme of Health Issues, difficult emotions,

finances, helplessness, shame, and guilt emerged as they

described the roadblocks experienced in trying to get care

for their loved ones. Caregivers may also experience solid

emotions while trying to meet their loved ones’ needs.

Emotions may include health issues, grief, frustration, 208

helplessness, guilt, and worry. PATIENCE said, “It is

extremely stressful when nobody tell you what is wrong with

my family.” CHIDIMA related, “To feel that depression, and

that weight, and that stress has just been – it’s huge – it

is like you can’t take breaths.” Caregivers may sense that

the caregiving stress is additional, and a little relief of

stress would help (GRACE). All the participants reported

that the way people view mental illness prevented them from

seeking help because they were embarrassed, ashamed to take

their loved ones anywhere. Participants indicated that they

do not believe that doctors know what is happening to their

loved ones and all they are there for is make money from

them. GRACE-3: said,

My roadblocks are not having money to buy medicine, doctor don’t know what is wrong. Every sickness is caused by malaria or B/P in this country. I am ashamed to see my husband behave like a madman and outsiders tosee him... Madness behavior don’t have a place in this country.

Theme 6: Insufficient Skilled Medical Professionals

One of the problems is some caregivers do not take

their loved ones to hospital because there are not enough 209

trained skilled medical professionals and this contributed

to reasons caregivers do not trust some doctors. CLARA

reported that “due to lack of medical equipment, hospitals

don’t have people trained to use the equipment in diagnosing

patients.” The reason is sometimes it takes long waiting for

trained personnel to arrive to use the equipment and it can

take hours or all day. GRACE stated that “Federal Medical

Center have high doctor patient ratio, about 1 to 1000,

getting a good treatment is less.” According to JAMES, “We

have a great lack of diagnostic centers, we don’t have home

for people like my husband. We have what we called nurse

Eliza (nursing assistants) that will attend to you, give you

injections and tell you what is wrong with you.” I don’t

want them to care for my husband. Similarly, JANE noted that

“sometime it’s a matter of money and where the doctors are;

we don’t have sufficient trained doctors and nurses to

diagnose dementia.”

In Nigeria, the quality of care is very poor due to

shortage of trained doctors and government involvement. It

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is very hard to see a doctor publish anything or attend

conferences outside the country. Some do not even know what

Alzheimer’s disease is and because of that, they don’t

understand when a patient has it, the complexity of the

disease, or the impact on family members.

Theme 7: Lack of Awareness

This theme emerged when caregivers were asked about

their understanding of ADRD. Only three caregivers knew

about Alzheimer’s disease, and all of the other caregivers

stated that they don’t have any information about

Alzheimer’s disease but they have heard about old people’s

disease (dementia). When asked about their understanding of

Alzheimer’s disease, caregivers’ communicated lack of

awareness about ADRD is conveyed by the following:

….. (CHIDIMA) yes….I heard about it. Em….like I say, I didn’t know anything about it. I’ve read a lot and heard my doctor mentioned it when I took my husband to doctor in Calabar hospital in Nigeria. Also, I heard iton the news about it but had no idea that’s what was wrong with my husband.

I read about dementia first when my husband was diagnosed with the illness. Before then, I did not knowabout it, I mean I heard that word because I am a

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retired teacher so I used to read a lot; I never did understand the symptoms or how it affected people untilit happened to my husband (GLORIA).

The majority of caregivers reported that they have not

been aware of Alzheimer’s disease before their loved one

became sick. They conveyed that they were familiar with

dementia (old age sickness) but beyond a general label of

the disease, they did not really know what Alzheimer’s

disease was. The reason caretakers did not know about ADRD

was that infectious diseases in Nigeria such as malaria and

typhoid constitute a more threatening problem than research

on ADRD (Ogunniyi et al., 2005). There is the impression

that dementia, particularly Alzheimer’s disease is more of a

Western disease. Because of that, family members are not

able to detect the signs (Henderson, 1986).

Theme 8: Getting Support from Family, Friends and Church

All 10 caregivers described how family, friends,

neighbors, and church members including those of their faith

help caregivers in caring for their loved ones. All the

caregivers voiced how family and friends, who were

tolerating their spouse’s, mothers, and sister’s mental 212

deterioration illnesses, eagerly offered their help. GLORIA

stated, “We have a really close family. Besides, our friends

and church members including our pastor are totally

wonderful with my husband.” PETER similarly, felt support by

his family members even though he was the only child: “I

acknowledge the way my wife, children, and extended family

respond, and they are very understanding. When I’m with them

they are very much in tune with the need, and appreciate

what I am doing.” PATIENCE stated, “The support from family

and friends helped me overcome some of the stress that I

experienced.

Support was felt from family friends through our churchcongressional members, as (CHIDIMA) stated:

….I have a wonderful support network of friends throughmy church and other family friends through my prayer warrior group that I belong to, and any of them would come and stay with my husband for a weekend, a day, if I needed them to.

Findings of the study showed that faith in God,

religious beliefs, and prayer were significant aspects of

the caregiver’s coping approaches, particularly with the

female participants from the study. International religious 213

activities were also identified in the literature as

assisting caregivers in coping with the caregiving

experience (Stolley, Buckwalter, & Koenig, 1999).

Some of the caregivers believed that their loved ones

were suffering from “spiritual attacks,” and they specified

their faith was vital for supporting them through their

caregiving experience. Several considered themselves as

religious people, and while some of them indicated their use

of prayer as a support, others found participating in church

activities were effective ways for them to cope with their

caregiving role and would heal their loved ones. All 10

caregivers believed that seeking strength and healing from a

higher power, a religious or spiritual one, can cure disease

or remove any evil spirit from tormenting anybody.

GRACE expressed similar views, of having been placed onearth to care for others:

I think maybe the Almighty God put me on this earth to take care of unthinkable disease that my family membersmay be experiencing because of my faith in Him. Although I don’t have any training ... When you think about it, who would you rather care for your loved one…an outsider that don’t know what is going on or someone

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that lived with the person, I know I’m going to do the best I can that outsider might not ( PAUL).

Three caregivers indicated that they did not view their

spouses’ dementia or what one could call Alzheimer’s disease

as given to their spouses by God, nor did they believe they

were being penalized by having to undergo the experience of

caregiving: “I don’t think that the good Lord we serve gave

this sickness to my husband. I surely don’t criticize the

Lord for anything (CHIDIMA).” CHIDIMA related,

First of all, I don’t regard this as punishment as somepeople have been saying to us, or I don’t even question“why did you do this?” It happened, and my feeling is that if you believe in God completely no matter what happens, everything will be well (STELLA).

Several of the caregivers use their support system of a

higher power, feeling of the significance linking to a God,

or having a spiritual nature, were important ways of

surviving with caregiving stress. For other caregivers,

their higher power served to reinforce and support them, as

they took on the obligations and responsibilities of caring

for family members with spiritual attacks. For some, the

very act of praying itself brought relief of healing and

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feelings of peacefulness. None of the 10 caregivers blamed

their God for bringing the disease to their loved ones. All

caregivers utilized both home prayer and church or spiritual

experiences for support and strength (Berg-Weger, Rubio, &

Tebb, 2001).

Summary

This chapter discussed the introduction of the chapter,

research interest in the phenomenon, description of the

sample, introduction to participants, procedure for data

collection and data analysis. By using the in-depth

interviews, this present study sought to answer the primary

research question: “How do Nigerian primary caregivers in

Abia State in Nigeria experience a family member’s mental

deterioration?” The participants were delighted to discuss

their lived experiences with the researcher. The

participants were vulnerable in telling their experience of

their daily lives, their biggest roadblocks, available

resources, family support, cultural views on ADRD, and their

caretaking practices.

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Because of their family members’ hallucinating

behaviors, confusion, inappropriate and severs memory loss,

these caregivers suffered physical and emotional health

problems (Chappell & Reid, 2002). The caregivers lived

nonstop being ashamed of their loved ones’ illness.

Furthermore, they frequently worried about their family

members’ behavior and safety, as well as the well-being of

the family in overall because of the social stigma

associated with mental illness. Due to their family members’

behaviors, they were stressed and emotionally tired, and

they suffered from illness such as hypertension, back pain,

stress, and severe headaches. All caregivers blamed their

family member’s illness for their broken family relations;

employment problems; and negative association with neighbors

and friends.

The caregivers tried to use prayer to cope with all the

negative feelings and experiences. Some going to the market

for few hours was therapeutic for them. In some cases, the

caregivers were able to travel to the village for the

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weekend alone and leave their loved ones with family members

or close friends, and were able to find assistance through

church members. Phenomenological reduction and data analysis

were performed with data collected through indepth

interviews with ten caregivers. Eight themes were revealed

including themes of Something is Wrong, Lack of Resources,

Health Issues and Financial Difficulties, Obligation and

Resignation, Insufficient Skills of Medical Professionals,

Loss, Lack of Awareness, and Getting Support from Family,

Friends, and Church from the informants’ descriptions and

interpretations of their lived experiences. Their

descriptions permitted an understanding of how they access

support, manage roadblocks, and understand ADRD. Chapter 5

expands on these findings in this study and discusses the

limitations of the outcomes.

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CHAPTER 5. RESULTS, CONCLUSIONS, AND RECOMMENDATIONSS

Introduction

Previous chapters provided an introduction to the lived

experiences of Nigerian primary caregivers who were

responsible for a relative with mental deterioration from a

dementia related disease. The literature review presented

previous studies exploring this topic, after which was a

discussion the methodology of the study and finally a

presentation of the data and an analysis of the emergent

themes. The purpose of this chapter is to present a

discussion of the results, conclusions, and recommendations

for future research of this exploratory, phenomenological

enhanced study. The remainder of this chapter contains the

following: summary of the results, discussion of the

results, discussion of the conclusions in relation to the

literature, limitations, recommendations, and conclusion.

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Summary of Results

The primary goal of this phenomenological study was to

provide additional research on the caretaking experiences of

Nigerian family members who were responsible for a relative

with mental deterioration from a dementia related disease. I

chose phenomenology as the best method for this study

because it captured the essence of the phenomenon of being a

caretaker for family members with ADRDs from the

participant’s perspective (Creswell, 2011). Phenomenology

permits a researcher to understand and interpret data in

manner that is reflective of the essence of the lived

experiences of the participants (Tan et al., 2009). In line

with qualitative research, the main methods of data

collection were open-ended questions, observations, and

journaling (Bordens & Abbott, 2008; McConnell-Henry, 2011;

Walls et al., 2010).

I used indepth semistructured face-to-face interviews

to collect information from these 10 participants. The

results indicated that all the participants accredited

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various meanings in their experience of caring for their

relatives with mental deterioration from dementia related

disease. The analysis of this phenomenological study

portrayed shared themes among the participants: something is

wrong, lack of resources, obligation and resignation, health

issues and financial difficulty, loss, insufficient skilled

medical professionals, lack of awareness and most of all,

getting support from family, friends, and church members.

Additionally, the researcher discovered that seven

participants shared the themes jointly of lack of awareness

of ADRD. 10 participants shared the theme of something was

wrong with their family member. However, findings from this

study supported the information that participants

experienced overall health issues and financial difficulty,

loss, lack of resources, insufficient skilled medical

professionals, and obligation and resignation.

This study showed that caregivers experience many

roadblocks because of caring for their family member with

mental deterioration. The caregivers developed health issues

221

themselves, possibly due to unexpected conditions that led

to their often unforeseen caretaking role. Despite this

unanticipated obligation, the Nigerian primary caregivers in

this study were eager to readjust their lives for the

wellbeing of their husbands, wives, mothers, or sisters with

mental deterioration (Brodaty & Donkin, 2009; Carpentier &

Grendier 2012; Okoye & Asa, 2011; Pescosolido, Medina,

Martin, & Long, 2013; Padilla & Villalobos, 2007; Semiatina

& O’Connor, 2012; Werner, Goldstein, and Buchbinder, 2010).

To date there is limited research that discusses caregiving

of ADRD in Nigeria.

Although it is essential to understand the everyday

barriers Nigerian primary caregivers have to face, it is

also vital to understand the other facets associated with

this role of being the primary caretaker. Learning about

individual lived experiences created a greater understanding

of the impact of the Nigerian primary caregiver role, as

well as the ramifications and obligations involved in caring

222

for a relative with mental deterioration from dementia

related disease.

Discussion of the Results

I manually analyzed the data, and the study findings

are presented according to themes. The primary research

question was, how do Nigerian primary caregivers in Abia

State, in Nigeria experience a family member’s mental

deterioration from dementia related disease? Corollary

questions were: What are perceptions of resources available

for Nigerian primary caregivers who have a family member

with Alzheimer’s or dementia? And what roadblocks do

caretakers experience in trying to get care for their family

member with Alzheimer dementia or other forms of dementia?

The aforementioned eight emergent themes were

identified and coded. The main objective of this

phenomenological study was to provide additional research on

the caretaking experiences of Nigerian family members who

were responsible for a relative with mental deterioration

from dementia related disease. This chapter addresses all of

223

the emergent themes as participant reflections highlight

them.

Theme 1: Something is Wrong

Several of the caregivers in this study stated an

extensive journey to a diagnosis for their family member.

Throughout the pre-diagnosis phase, caregivers were aware of

behaviors, and incidents signified that something was wrong

with their family member. They identified feelings of

helplessness or being “clueless.” (CHIDIMA): “All I did was

to lock him inside the room to prevent him from wandering

outside the house.”

JANE, Participant 1, shared, “My mother had lots of

doctors and different medications from different chemists.

They did not know what was wrong.

GRACE, participant 4, expressed:

At the beginning, I did not know what was wrong with myhusband. I was very frightened because I have never seen this type of behavior from my husband before. I thought he opened the bag that I put all his medicines and drank some at the same time because he could not wait for me and affected his brain. I took him to Federal Medical Center and the doctor at first thought it was his blood pressure being too high. But just gave

224

him blood pressure medicine, but when I took him to outof state hospital to see foreign doctors, he was admitted to the hospital, and mental health psychiatrist finally told me he had Alzheimer’s disease.

Theme 2: Lack of Awareness

Secondly, participants shared the sense of lack of

awareness about ADRD, which was the main topic of this

study. They revealed that inadequate understanding and

cultural beliefs about mental illness prevented them from

accessing support for their loved ones with mental

deterioration. Participants attributed symptoms of ADRD to

“evil or a spiritual attack,” witchcraft, family curses, a

retribution from God to the individual and his/her family,

or unidentified reasons. Research with Sub-Saharan Africans

on disease understanding emphasizes the decision process in

seeking care for an illness for older adults (Blazer &

Houpt, 1979; Levkoff et al., 1987, 1988).

Theme 3: Loss

The sense of loss was a very critical theme because the

participants expressed difficulty in not being able to have

225

communication, or the love and relationship that they shared

with their spouse, mother, and sister before the diagnosis.

One of the participants revealed that there was no more

mother and son relationship that he used to have, and he

mentioned how his mother used to cook for him when he

visited the village. One other participant indicated that

she was not able to have the sister who used to protect her

due to this illness, and she lost her only job that gave her

joy because nobody would watch her sister for her. All 10

participants voiced their loss of freedom and spouse they

loved resulting from being primary caregivers.

The participants answered research question 2 by

expressing their perceptions of resources available for

them.

Theme 4: Lack of Resources

All participants revealed that they were not aware of

any resources available for them. They described how

difficult it was for them to get services because the

government did not appear to care about their people’s

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health; participants stated that some doctors did not even

know what to offer dementia patients or how to talk to the

caregivers. All participants reported that because of lack

of resources for their loved ones, the experience of caring

for family members with mental deterioration seemed to cause

stress not only for the caregivers but for the entire family

(Spurlock, 2005).

The participants answered research question 3 by

expressing the roadblocks that they faced when trying to

seek help for their loved ones with ADRD. Three of the

participants reported that because of the way society viewed

mental illness, they felt ashamed to even ask for help or

look for any resources that would help them care for their

family members. They described how difficult it was for them

to even talk about their loved ones’ behaviors to other

people such as healthcare providers because of how mental

illness is viewed in their society. Some of the participants

reported how caring for their loved ones kept them busy and

stopped them from being involved in church, visiting

227

friends, and being with their age grades members in the

community because they did not want to talk about their

family members’ health issues.

Theme 5: Insufficient Skills of mental Professionals

In Sub-Saharan African countries, including Nigeria,

people with certain cultural beliefs tend to attribute the

symptoms of ADRD to spiritualism and witchcraft and family

members are ashamed to see services (Quinn, 2007; Uwakwe,

2000). This researcher found a lack of sufficiently skilled

medical professionals, which was important because

participants found the absence of good medical professionals

as one of the crucial problems for diagnosis. All

participants made many references to lack of insufficient

skills medical professionals such as “you go to Federal

Medical Center and they will tell you that we don’t have

anybody right now that will work with the equipment and you

should come back in 2 weeks after waiting for more than 3

hours,” eight out of 10 reported on the shortage of doctors.

They related that some of the doctors whom they see are not

228

qualified to examine their loved ones, or do not even know

what is wrong and still prescribe medications that do not

work. STELLA (participant 5) stated:

One of our family doctors told me that …….”we don’t have enough trained doctors to attend to people with mental deterioration/dementia at the hospital”……. “We all have our own clinic, good equipment, and we refer patients there instead of the hospital and if you come there, you will be treated very well…….at the hospital,people have to wait for a long time because some doctors are not yet at the hospital because they are attheir clinic seeing patients instead of hospital.”

All 10 participants complained about the red tape

involved just trying to see a doctor. The participants

described how difficult it was to see the doctor such as

waiting for hours to get registration cards and the amount

of money necessary involved before seeing a physician. Five

of the participants reported that the way society viewed

mental illness prevented them from seeking help.

Participants 4 and 8 are examples of individuals directly

expressing how they view the roadblocks in trying to get

care for their loved ones with ADRD:

When you have a family member that hallucinates or has combative behavior, it is difficult for me to be in a

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waiting room for long time with other people because ofmy family member’s volatile behaviors which is embarrassing and frustrating for me. It is difficult tocommunicate with any doctors about my husband’s behavior because they don’t believe and will not give him medications since they don’t live with him and don’t know what I am going through or see his behavior face to face (Participant 4)

Caregiver 3, JAMES responded:

My wife is very aggressive, destroyed everything in the house, hits people for no reason. She left home on several occasions and so I don’t want to take her to a place that we stay for hours before you see a doctor because she gets restless when she is in an unfamiliar place.

Caregiver 6, GLORIA, shared:

This is the worst sickness that I have ever seen in my life. I am very ashamed to take him outside because he talks constantly and would not keep quiet. He urinates anywhere he sees and that would be embarrassing for me if we are at the hospital or doctor’s office waiting for hours just to see the doctors.

Theme 6: Health Issues and Financial Difficulty

Generally, it is vital to recollect that each

participant shared his or her own story, which may have

different from other primary caregivers’ stories. Each

participant had varying degrees of worries, stressors, and

230

relieved moments, which were obvious in their personal

stories:

I have been diagnosed with depression and back pain. I am always stressed. I worry too much about my husband’shealth and behavior. His memory is not intact and he act like a mad man. I am not on medicine because I cannot afford to buy any. I just wants to make sure have food in the house. I try to stay focused and strong to take care of my husband, but it is very difficult especially when he wanders and hallucinates all the time. I am too old to care for him, but I will not let anybody, especially my children to care for him. I wish God will just take him home because his life is worse than being alive. STELLA (Participant 5)

Again, not having money at hand prevented me from seeking help because no one will give me medications oncredit in this country I am retired and often I don’t get my pension every month as I am supposed to. CHIDIMA(Participant 8)

Theme 7: Getting Help from Family, Friends, and Church

Members

The one common theme that emerged was the relief the

participants felt based on their interactions and getting

support from family, friends and church members, which

resulted in the participants having time to rest while

others were caring for their loved ones. All talked about

their relief and appreciation to family and friends, who

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tolerated their spouses, mothers, and sisters hallucinating

behavior without judging them and still helped out when

there was no other way out.

Theme 8: Obligation and Resignation

In addition, the participants conversed about their

obligation and resignation to care for their spouses,

mothers, and sisters despite the roadblocks to provide

structure and consistency.

CHIDIMA (participant 8), the spouse, specified no

rewards what she is doing, and described becoming a

caregiver not a decision but rather a duty based on her

being the spouse. Although the sense of duty has surfaced in

prior studies, this spouse failed to mention any positive

aspects associated with her being the primary caregiver

throughout the entire interview. The responsibility of

caring for the older adult in Nigeria lies on the family and

is voluntary with the family member not expecting any form

of compensation or reward (Ajomale, 2007).

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Studies have shown that culture does shape caregivers

responses to how they view the care responsibilities toward

their older family members (Arevalo, 2008; Neary & Mahoney,

2005; Okay & Asa, 2011; Uwakwe et al, 2009). Caregiving is

seen as a family obligation. The morals of service and duty

to family and helping are part of the cultural framework

that Nigerians practice. Sacrifices that Nigerian families

make in the care provision are part of the obligation and

bring a sense of pride (Okoye &Asa, 2011; Uwakwe et al,

2009; Ogunniyi et al 2005).

Discussion of the Conclusion as Related to the Literature

The results of this present study support the previous

studies in Chapter 2, which clarified the motives of the

experiences of caregivers who are the primary caregivers for

their family members with dementia related disease. The

findings were consistent with studies that focused on many

problems Nigerian primary caregivers face because of their

decision to be in the caretaking role. Many are adult

children, immediate family members, guardians, or extended

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family who spent most of the time caring for disabled

individuals (Alzheimer’s Association, 2013; Braun et al.,

2010; Caregiver Hints, 2008; Carpentier & Grendier, 2012;

Hodge & Sun, 2012; Negarandeh & Peyrovi, 2012; Okoye & Asa,

2011; Robinson et al., 2005). All of the participants

specified similar challenges with assuming the primary tasks

of caring for a relative based on the conditions that led to

their caregiver responsibilities.

As indicated in the literature, the studies related to

the challenges faced by Nigerian primary caregivers’

cultural beliefs which tended to attribute the symptoms of

ADRD to spiritualism and witchcraft. In this present study,

all participants knew that something was wrong with their

family members, but because of their cultural beliefs, they

attributed the symptom of ADRD to “evil or unclean sprits,

witchcraft, family curses, punishment from God to the

individual and his/her family, insanity, or unknown” as they

reported during the interviews (Dilworth-Anderson & Gibson,

2012; Palmer, 2010; Uwakwe et al., 2009). All of these

234

perceptions prevented the primary caregivers from seeking

medical help, and they prolonged the receiving of

information about the correct diagnosis. Some of the

participants disregarded or minimized their family members’

symptoms of ADRD because they believed that it was part of

aging, even when they had good understanding of medical

care. But as Uwakwe (2000) stated, although they knew that

something was wrong with their relatives, they attributed

the symptoms to supernatural causes such as evil spirits and

witchcraft and that prevented them from seeking medical

help.

Likewise, in Ogunniyi et al.’s (2005) study, care

patterns were compared in developing countries (Yoruba

ethnic group in Nigeria) and in developed countries

(African-Americans in Indianapolis) caring for individuals

with dementia. The results indicated that Nigerian

caregivers knew that something was wrong but did not take

their relatives who were experiencing mental deterioration

or related dementia to hospitals or health facilities

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because they wanted to avoid family embarrassment and did

not believe that the delusions and hallucinations their

loved ones were experiencing could be treated with drugs.

According to Ogunniyi et al. (2005), others in the community

referred to this possession as witchcraft, and maybe

referred then to “spiritual healers” to be exorcised of

their “evil spirits.”

National policies on aging and mental health have had

little recognition in the country (Uwakwe et al., 2009).

Therefore, it has been difficult for caretakers of those

with ADRD to access proper care for their loved ones or get

enough outside support in the current situation in Nigeria.

In the present study, 10 participants expressed similar

concerns about the lack of resources. The caregivers

indicated that they did not have any resources, training, or

information about the disease that could help them or their

relatives. Five participants who took their relatives to the

hospital stated that some of the healthcare professionals

did not know anything about the disease, and the

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participants were not in positions to provide their

relatives with the adequate care required. One of the

participants stated:

After several months not getting any help on what to dowith my wife’s mental sickness, I decided to take my wife to see a doctor. I explained to him all the problems that she has been having. The doctor told me that she might be having malaria because it will make you hallucinate and be confused sometimes. He made me go buy malaria medicine, which did not help. I asked him if there was anything that will help her or tell mewhat to do because I can read. He said nothing at this time.

Despite strong views against nursing homes in Nigerian

culture, all 10 participants agreed that they would like to

have the resources available to them and keep their loved

ones in the hands of trained professionals who knew more

about how to take care of people like their loved ones.

However, because of their cultural beliefs, this option was

not available, so they had no choice but to care for them.

Bahrer-Kohler (2009) reported that there are cultural

barriers against using outside resources like nursing homes

and pharmaceutical drugs in developing countries like

Nigeria. Because of these circumstances, elderly patients

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with dementia have not benefited from all of these

resources. In Nigeria, mental health services have not been

fully established and recognized by the general population.

Services are unaffordable, and only 10% of the ADRD

population receive such services (Bahrer-Kohler, 2009).

In this study, all the participants posited that

serious lack of awareness of ADRD prevented them from

seeking help when they initially experienced family members’

mental deterioration. Participants credited symptoms of ADRD

to “evil or tainted spirit, witchcraft, family expletives, a

rebuke from God to the individual and his/her family,

insanity, or unknown.” Participants had varied opinions

about ADRD from the common culture, which may have been due

to absence of understanding of the presenting symptoms and

the source of the disease. There were some misperceptions

among participants about awareness and understanding of

dementia or related disease. The dissimilarity between

awareness and understanding is that one related to the

acceptance of the biomedical, while knowledge was more

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connected to the fact that the source was unknown. The main

concern in this study was lack of awareness of ADRD,

triggering participants to characterize symptoms to other

cultural beliefs as mentioned previously (Pescosolido et

al., 2013; Sayegh, 2013).

Seven of the participants stated that they did not have

any knowledge about ADRD. Three indicated that it was their

doctors that told them about Alzheimer’s and that it was not

curable and no medication was available for it. Although

memory loss was part of the symptoms of ADRD, Nigeria

primary caregivers believed that it is part of aging and

that the Nigerian government in particular provided little

support to patients with dementia because of this belief

that the well-being of the aging population was a family

matter rather than a government responsibility.

Ogunniyi et al. (2000) reported that there was lack of

awareness of ADRD because in Nigeria, infectious diseases

such as malaria and typhoid constitute a more threatening

problem than ADRD. Due to lack of awareness surrounding

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ADRD, family members were not able to detect the signs or

adequate care for their relatives with mental deterioration.

Henderson (1986) posited that developing countries were not

aware of ADRD because of the impression that dementia,

especially Alzheimer’s disease, was more of a Western

disease, which was seldom diagnosed in developing countries,

including Nigeria.

Sun et al. (2014) used a qualitative approach

comprising focus groups to gather information on perceptions

on barriers to service and how they could be overcome. Using

content analysis, Sun et al. found service barriers

regarding limited caregiver knowledge, shortage of services

with cultural capability, and low motivation in seeking

professional help. Through the responses of the

participants, it was evident that lack of awareness as well

as resources were the most significant determinant of the

perceptions and experience pertaining to ADRD. In this

study, all 10 participants specified that they would like to

have information so that they would be able to know how to

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take care of their loved ones. Another caregiver described

how she was not able to take her husband to the local

hospital due to lack of equipment and not having specialized

doctors to care for him.

In Nigeria, the healthcare system is very poor, and

there is no general health insurance system. There is

significant growth in elderly people suffering from medical

and mental disorders, and there are not enough psychiatrists

to serve 110 million people (Federal Ministry of Health,

1991). Due to insufficient skilled professionals in Nigeria,

there are no special geriatric or psychogeriatric services

provided for the mentally or physical ill elderly Nigerians.

Because of that, the load of attention for the patient with

dementia falls on internists, surgeons and gynecologists who

may be not qualified to detect the early stages of ADRD.

Those doctors can only provide sensible care in elderly

patients (Uwakwe, 2000).

In this study, all 10 participants refused to take

their loved ones to the hospital at the early stages of ADRD

241

because they did not trust or have faith in the doctors and

complained that some of them did not know what they were

doing. GRACE (Participant 4) stated that the “Federal

Medical Centers have high doctor ratio, about 1 to 1000,

getting a good treatment is less.” Likely GLORIA

(Participant 6) reported,

We don’t have trained doctors to diagnose anything in that hospital. What they do is trial and error. When gothere to see a specialist, they will tell you he/she did not come today but come back next week or in two days. How can you wait that long when you have someone dying?

VanderJagt et al. (2006) stated that there are no good

laboratory tests for dementia. To diagnose dementia, a

combination of cognitive tests, neurological examinations,

and brain scans, such as MRIs, are utilized. According to

VanderJagt et al. (2006), the greatest commonly used

screening instrument for finding out cognitive function is

the Mini-Mental State Examination (MMSE). In Nigeria, the

modified laboratory screenings conducted by Ogunniyi and his

coworkers were still found to be ineffective in diagnosing

dementia (VanderJagt et al., 2006). Likewise, the findings

242

were comparable to those in this study. Because of

ineffectiveness in diagnosing dementia in Abia State

hospitals, all participants took their family members with

mental deterioration to another state to a hospital that has

specialized equipment and foreign doctors to diagnose their

loved ones.

Okoye and Asa (2011) conducted a quantitative study of

330 caregivers in Enugu State in Nigeria and tested their

stress levels and the emotional and physical toll stress has

on them. Some of the caregivers found themselves under

pressure and developed health problems such as guilt and

depression, excessive eating, smoking of tobacco products,

and neglect of exercise and personal needs or their family

needs or their social needs. Social needs included leisure

time like attending a house of worship. As a result, the

caregivers experienced care recipient high mortality rates

including the caregivers. These findings coincided with the

present study, for all 10 caregivers indicated having health

issues since they started their caretaking roles. Four out

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of 10 indicated that they became hypertensive due to

depression, not knowing what to make out of the situation in

which they found themselves.

Brodaty and Donkin (2009) reported that ADRD caregivers

coped with stress that can lead to several issues, including

the need to be constantly available to offer close

supervision to people with ADRD, the perceived lack of

family and social support, the difficulty in finding and

getting resources, and the behavior and communication

difficulties of the individual with ADRD, which created a

variety of health issues for the caregiver. Relating these

issues to this study, some caregivers developed back pain

from the constant lifting of their loved ones after they

later fell down. Others indicated feeling stress because

there is no medication for that type of sickness (Duggleby

et al., 2009) along with no formal training and no help from

government.

Caregivers in the study reported that for an individual

to go to hospital for treatment, the individual must have

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cash up front for payment which they do not have. All

caregivers echoed that the Nigerian pension plans are poorly

implemented, and some Nigerian government executives misuse

retiree pension funds, which makes disbursement to retirees

difficult. Retirees with ADRD cannot even care for

themselves due to lack of finances. As indicated in the

literature, Dilworth-Anderson and Gibson (2012) reported

that out of pocket funding is an insufficient means of

financing chronic disease care in developing countries like

Nigeria, and this may delay diagnosis and treatment of

family members with mental deterioration.

In Nigeria, any family member who is sick is the

responsibility of the family. The government lends little

support to patients with dementia because of the belief that

the well-being of aging is a family matter. In this study,

all 10 participants stated that it was their obligation to

take care of their family members and indicated rewards

associated with their current role. As indicated in the

literature, the satisfaction of taking care of a loved one

245

can be a positive experience, a concept in which the young

family members were paying back the older ones for the care

that they received long ago as children (Okoye & Asa, 2011).

Therefore, the findings from the current study were

consistent with prior literature. The participants in this

study currently expressed a sense of obligation and payback

as the main reason for becoming caregivers. PATIENCE

(Participant 9) is taking care of her sister because she

lived with her as a child and her sister sent her to

college. Consequently, she was paying her sister back by

letting her move in with her while she takes care of her.

PATIENCE said,

I cannot pay her back enough for what she did for me when our parents were not able to send me to school. This my sister was always there for me. I cannot let her suffer while I am still alive. She made me the person I am and will never forget that as long as I live.

CHIDIMA (participant 8) stated, “I had no choice

because he is my husband.” She went on to say:

It was not a problem of having a choice. You are married and you know what I mean, this is something that I am trapped with. My sister, one of the greatest

246

things about this situation, at least for me, is that Ihave to come to holds with the fact that I have to go through changes because it is not going to get better according to the doctors but worst as the disease progresses so I have to do this until it is time for him to go.

Family obligation is a reoccurring phenomenon in the

literature (Daire & Mitcham-Smith, 2006; Hebert & Shulz,

2006; Jones-Cannon & Davis, 2005; McCarty, 1996; Sanders &

Corley, 2003; Wuest et al., 2001). It is also the greatest

ranking finding linked to Nigerian primary caregivers in

this study. It was known in all 10 primary caregivers,

regardless of the care-recipient relationship and/or the

support of or disaffection from the family. All the

caregivers’ highest finding from this phenomenological study

related to the concept of family responsibility, meaning “a

sense of involvement, family unity, and compassion cultured

through religion, familism, and or culture, inspire the

caregiver to unite the care of family member with ADRD into

their family”. McCarty’s (1996) ground theory study stated

that the feeling of duty of care for a family member with

ADRD was primarily credited to a sense of “paying back”

247

parents, sisters, and spouses for the care they gave to

them. The sense of repaying the care is a strong sentiment

amongst participant’s caregivers in this study. Three of the

10 primary caregivers indicated high rated responses of the

feeling of returning the care they received as children to

their parents/sisters.

Some of the caregivers have explained loss in terms of

communication previously shared with their spouse and others

related it to death. CHIDIMA (Participant 8) lost her

husband from Alzheimer’s disease after she decided to

participate in the study. She stated, “It was a big loss for

me because we had been married for 46 years. It was hard

when he was not able to make decisions or tell stories that

he used to.” Other caregivers explained loss as the loss of

caring, relationship, communication they have shared with

their spouse, mothers, and a sister (Blahak, 2010;

Siriopoulos et al., 1999). In prior literature, Carpentier

and Grendier (2012) clinically described the ongoing loss of

intellectual capabilities affecting reasoning, function, and

248

behavior. Individuals diagnosed with ADRD became reliant on

caregivers, finally demanding constant supportive care. The

participants in this current study reported the loss of the

husband, wife, sister, and mothers they used to have

preceding the diagnosis, their personal space they used to

have, their freedom, and the loss of going to market freely

without pressure related to their caregiving role. Three

participants expressed opinions about the loss of freedom

because the mothers and sister they love made the

participants primary caregivers.

Family support, faith, prayers, and church membership

were all indicated in the prior study as therapeutic for

family members who were caring for loved ones with mental

deterioration (Buckwalter & Koenig, 1999; Hodge & Sun,

2012). Similarly, the participants in this present study

also stated the significance of faith, family support,

prayer, and belonging to a church as valuable therapeutic

mechanisms in handling a family member experiencing mental

deterioration.

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Family support, their faith in God, and attitude

towards other church members and neighbors were the most

important aspects of encouragement participants could impart

to empower other primary caregivers. Two of the caregivers

reported that they had not been going to their church

regularly before their loved ones became sick, but feel a

sense of connection with their faith, which has helped them

address challenging issues. Eight participants mentioned

God, their pastors, and church members several times. They

stated that their faith in God had kept them going and given

them strength to move on with their caretaking roles.

Religion, spirituality, faith, and prayer were shown in

previous studies as a coping mechanism in reducing stress

for caregivers. Hodge and Sun (2012) conducted a study on

209 Latino caregivers with structural equation modeling

concerning how spirituality affects positive aspects of

caregiving for relatives with ADRD. The findings indicated

that spirituality was definitely related to the positive

caregiving aspects and reduced the caregivers’ stress very

250

well. Hodge and Sun concluded that physicians should make

sure that spiritual strengths are highlighted during care

planning.

All 10 participants stated that they had some type of

support from family members, friends, neighbors, and church

members, whether they requested or used the help. Based on

all the participants’ responses, most if not all, did not

want to depend too much on family, friends, neighbors, and

church members unless it was essential. Support from family

members, neighbors, friends, and church members was very

vital because such support would allow primary caregivers to

have time for themselves. They could then do other

activities that may not be possible due to their caregiving

responsibilities, as well as help curtail social isolation,

a situation that concurs with the previous literature

(Stolley, Buckwalter, & Koenig, 1999; Uwakwe, 2000).

In summary, ADRDs are advanced, incapacitating diseases

that affect not only the suffering individuals but also

their family caregivers. The rich data provided several

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themes. The participants in this present study were

enthusiastic about sharing their stories, which helped to

bring out the emergent eight themes. The study addressed

several common issues as presented in previous research on

the topic, such as health issues and financial difficulty,

issues associated with loss, problems regarding lack of

awareness, something being wrong, issues with insufficiently

skilled medical professionals, problem with lack of

resources, obligation and resignation, and benefit of a

support system. The findings in this present study provided

an in-depth view into the lives of 10 Nigerian primary

caregivers, who are mostly stunned about their caregiving

responsibilities, but because of sincere love for their

family members, they decided to change their lives and

continue to adapt to their new caretaking roles.

The findings in this current study add substantial

contributions to the existing research on the Nigerian

primary caregiver phenomenon, specifically related to the

awareness of ADRD, the something was wrong issue and martial

252

and family relationships as a result of the caregiver role,

as well as the important aspects of being caretakers. This

study may serve substantially for developing additional

viewpoints on the nature of this specific caregiving role.

The participants in this qualitative study were not trying

to find a solution to their position but were simply were

grateful to have a chance to have someone listen to their

side of the story including their good and bad experiences

with the expectation that people would comprehend the

roadblocks and rewards of their roles as the primary

caregivers to their relatives with mental deterioration.

Based on the findings of this current study, there are still

several unreciprocated questions that sustained research

could help untangle.

Limitations of the Study

There were numerous limitations in the present study.

The method of phenomenological research explores the

subjective experiences of research participants (Mertens,

2010). Once observations of research participants were not

253

practical, interviews were utilized to collect research data

(Creswell, 2011). Still, the presence of the researcher can

create bias regarding participant responses (Creswell,

2009).

Qualitative studies have allowed researchers to explore

the complexities of the phenomenon in question. Analysis of

data results in good explanations of the phenomenon being

explored. Qualitative studies do not create generalizations;

the aptitude to generalize results is frequently limited,

for research is focused on a particular phenomenon in the

context of the lived experience (Creswell, 2009). While the

research methodology in this study could likely be repeated,

given the nature of phenomenological research, individual

experiences would influence research results. Even though I

sought people of different genders to participate in the

study, only 3 out of 10 were men. Therefore, there were

limited male viewpoints in the study. Regrettably, findings

from qualitative studies cannot be generalized to other

women and men outside the room of those interviewed.

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Another limitation was the point that none of the care

recipients was in the early stages of the ADRD. This

situation is significant for the reason that male spouses’

experiences have been established to differ based on the

severity of their wives’ disease (Siriopoulos et al., 1999).

After all, not a single soul among the participant

caregivers was caring for someone with early stage ADRD;

therefore, the researcher could not pinpoint themes that

might have been precise to that caregiver population.

The next limitation was the naiveté of the researcher

in doing qualitative research. Participant selection was

based on purposeful sampling, which was a characteristic

qualitative method. It identified, nevertheless, that the

individuals who participated in this study were not

representative of the larger population of caregivers of

people with ADRD. A fourth limitation was that all

participants were from two Presbyterian churches and living

in the same rural community. They might not be

characteristic of other individuals in Nigeria, which may

255

have generated prejudice in terms of reasons of the

caregiver and their perceptions of the disease.

Implications for Practice, Education, Policy, and Research

It is suitable in this section to discuss the

implications for practice, education, policy, and research

for caregivers who were responsible for a relative with

mental deterioration from a dementia related disease. Uwakwe

(2000), Okoye and Asa (2011), and Brodaty and Donkin (2009)

affirmed that caregivers struggle with the inadequacies of

the insufficient skilled medical professionals, lack of

awareness, obligation and resignation, lack of resources,

something was wrong, health issues and financial difficulty,

loss, and getting support from family, friends, neighbors,

and church members. It is obvious that a need exists for the

implementation of changes supporting the growth of access to

treatment for caregivers of family member with mental

deterioration. Awareness must be provided that may improve

their quality of caregiving, granting them the breaks to

advocate their concerns to health care policy government

256

officials, participate in the decision-making process of

mental health organizations, and be given the opportunity to

advocate their concerns to health care policy makers.

Implications for Practice

Based on the findings, it is important that health care

professionals provide much adequate intervention to those

with ADRD. Based on data from the participants, health care

professionals might want to provide time to work with family

members of individuals with ADRD. There is need for the

State Ministry of Health to provide regulations to

healthcare professionals who assign a diagnosis of ADRD to

care recipients and take into consideration the brunt of

ADRD on the family unit. Family members can offer valuable

information about care recipients to health care

professionals, including relative behaviors and details

about their pasts. Such information can better help

healthcare professionals understand the needs of someone

with ADRD.

257

An important implication for healthcare professional,

which was supported by this study is the need to attend to

the problem of stigma that lingers to be present when one is

diagnosed with ADRD. The stigma that goes along with mental

deterioration has damaging significances and frequently

prevents an individual from seeking the treatment they need.

Healthcare professional and other mental health

professionals can play an influential role in extinguishing

stigma, by increasing their own understanding, staying

informed concerning new research and probing their own

preconceptions and beliefs about ADRD and seek help to

overcome them. Health care professionals and other mental

health professionals who are providing care in the mental

health profession do themselves, their patients, and their

families an injustice by concealing inner prejudices and

biases and being uninformed regarding mental health.

Guidance is needed to ensure practical interventions

for management of individuals with mental

deterioration/Alzheimer’s disease or related dementia are

258

provided not only to care recipients but also to the family

members involved. Attention should be directed toward

encouraging healthcare professionals to increase their

understanding of what resources are beneficial to caregivers

and public for resources within their communities. For

example, a support group within churches is an appropriate

intervention for caregivers. Caregiver 8, CHIDIMA,

expressed:

When my husband was still alive, I wish I could have find a program for myself because I know went through. I am in this study because I want to talk to other people. I want to share my experience. I just want to know how other people are dealing with their family member’s delusion behavior. I want to know what they are doing to help their family member with the disease.In this country, it is hard to care for a family memberwith mental deterioration. I don’t know anybody that isgoing through this. But I know there are families suffering and thinking they are alone. I wish I could meet them to let them know they are not alone and wish we can meet one day to share information.

Caregiver 6, GLORIA, also stated:

I have been trying to find family who has a family member with the disease. I will like to talk to them about my experience. By talking with other family mighthelp me feel better to know that I am not alone. I am ashamed. I am falling apart. I am stressed out. I want

259

to release my tension by talking about this deadly disease. I want to educate others.

Participants also needed to make sure healthcare

professionals respect the loved ones with ADRD and treat

them as human beings. Healthcare professionals need to do

whatever they can to help persons with ADRD and their family

members. Interacting with other primary caregivers can

decrease isolation; such support groups can assist to offer

information about the disease along with resources and

education about successful caretaking strategies. For this

reason, healthcare professionals can use the assets of

information gained from this study to advance their

practices and to advocate for nationwide support groups and

other resources for caregivers who are caring for a relative

with mental deterioration.

Implications for Education

Education involves providing information and training

skills to others. Decision makers of systems often are not

acquainted with every aspect of a situation. Thus, making

them aware can produce the desired results (Kirst-Ashman &

260

Hull, 2006). For example, a policymaker who does not admit

there is a problem may not think it is essential to educate

society about ADRD. Surely, it is vital to train

professionals within the system about how severe ADRD is.

There is a need for healthcare professionals as well as

pastors from different churches, communities, and

organizations to increase their understanding of family

members with mental deterioration and understand the

challenges that caregivers of family members with mental

deterioration face every day.

Some of the healthcare professionals receive their

initial experience regarding mental health illness disorders

in the classroom, with little to no real-life contact with

individuals who have mental illness (Alzheimer Association,

2013; Guberman, Keefe, Fancey, & Barylak, 2007).

Consequently, many healthcare professionals have no idea of

the challenges that an individual with ADRD can present to

their caregivers or their families. There is a need for

healthcare professions, organizations, communities, and the

261

entire country to increase their understanding of the

intricacy of ADRD and identify ways in which the system can

benefit individuals with ADRD and their caregivers.

One of the issues that participants indicated was lack

of understanding of ADRD, triggering participants to

attribute symptoms to other cultural beliefs, as mentioned

during the interviews. The importance of recognition of the

symptoms of ADRD within the community is significant and

severe for early diagnosis. Similarly, understanding ADRD is

vital for a health caring environment and for seeking

medical help (Adamson, 2001; Blum, 1991). Enhanced

educational mediations can give rise to a better

understanding of ADRD. Educational programs to increase both

knowledge and understanding of ADRD among Nigerian primary

caregiver populations can be more effective if these aspects

are considered as part of the program design. Caregivers in

this study articulated a desire to learn further about ADRD

because they did not receive sufficient information about

the disease after their family members’ diagnoses.

262

This study highlighted the need for basic information

about ADRD to assist better understanding within the

community. It should also stress educational awareness

within Nigeria as an educational initiative. One way would

be to go to the churches to get them to understand ADRD from

a medical standpoint. As reported by participants in the

study, churches are significant places of support where ADRD

patients are taken for prayers and healing. There is a

crucial need for everyone in the country to improve their

knowledge of ADRD at the state and local levels. As a

result, national attention is needed to guarantee that

systems develop a capability level of ADRD. Future studies

also should emphasize the importance of ADRD awareness and

stress the importance of providing clear information

concerning ADRD for healthcare professionals within the

community.

Continuing education, seminars, conferences, and real-

life disclosures are viable sources for participants in the

system to enhance their understanding of ADRD, the

263

challenges faced by caregivers and others, and access and

roadblocks in the present system (Adewuya & Makanjuola,

2005; Nyati & Sebit, 2002; Whyte, 1991a, 1991b). There is a

vital need for all systems to heighten their knowledge of

ADRD at the local and state levels. Thus, national attention

is needed to guarantee that systems develop a capability

level for ADRD.

Implications for Policy

As the numbers of people affected by ADRD increase, the

social inferences are devastating. As these participants

spoke about their experiences, it became obvious that early

support was important. Without a sufficient support network,

caregivers are incapable of coping with the care of their

relatives with ADRD in the home. The prices connected with

caring for individuals with ADRD create a financial burden

for the family, particularly in the area of healthcare.

Financial tension is a reality for all the caregivers who

have relatives with ADRD. The public must be aware of how to

identify the warning signs of cognitive impairment, to know

264

that early treatment may postpone progression of the

disease, and to allay the myth that ADRD is an abnormal sign

of aging. Bahrer-Kohler (2009) has reported that in Nigeria,

even though the number of individuals ADRD is low in the

country compared to United States, people are often not

diagnosed because their symptoms are considered a normal

part of aging.

The federal government’s involvement in care of the

older adult in Nigeria has been minimal. The budgetary

distribution to the health sector has been inadequate.

Without the support of the Nigerian federal government, any

program can be hard to implement. Programs of awareness or

educational programs require an adequate share of both human

and financial resources as well as a commitment and

dedication to improve the communication skills of individual

with ADRD. The government needs to increase the budgetary

allocation given to the health care sector r to carry out

the programs for older adults with ADRD. The government’s

involvement in the care of the older adult with ADRD at the

265

local government areas can successively enhance

participation and involvement at the federal and state

levels.

Implications for Research

To empower caregivers, they should be aware of the

disease and have resources freely available to them and

their relatives who have ADRD. Research should be adopted

toward recognizing ways to heighten the quality of life for

caregivers who are taking caring of family members with

ADRD. State Ministry of Health administrators, policymakers,

governing committee members, and church pastors could start

an assessment to decide the extent of demand of services and

programs for awareness for the caregivers. For example,

Caregiver 6, GLORIA, expressed, “It is hard when it seems

that nothing works. Even after praying daily. I feel like

doctors and the government don’t care or want to help me. To

me, I have been isolated from the community. I don’t have

anything to rely on including in-laws.”

266

Research is needed to develop ways to develop awareness

of ADRD, create resources available for caregivers, and

provide awareness modules for professionals within the

system. Research also is essential to detect a suitable

treatment method that can help individuals learn to

understand ADRD, a result that may help to decrease negative

aspects of the caregiving experience.

Recommendations for Future Research

Even though this study may enhance understanding about

the lived experiences of Nigerian primary caregivers caring

for a family member with mental deterioration, there are

many other areas where the research can be extended. The

results of this study indicated lack of awareness of ADRD

with Nigerian primary caregivers and the need for

educational activities, such as educating the churches on

basic information on ADRD for good understanding. The

results of this study have also raised new concerns about

what it would require to get Nigerian communities to

understand and the importance of seeking medical help

267

without embarrassment. For example, more studies could

explore the experiences of wives caring for husbands with

ADRD and also could enhance the understanding base of the

lived experiences of caregivers who are sons who care for

parents with ADRD.

Though research has indicated that family members with

mental illness/mental deterioration influence the entire

family, so further research on how family members with

mental deterioration affect precise roles in the family

would also provide valuable data. Financial burdens were

found to be an experience of family members, yet there were

few studies to explore this issue. With changes in The

Income Act of 1993 and the National Social Insurance Trust

Fund (NSITF) created by Nigerian government, insurance

coverage and increasing costs of drugs for mental health

problems, additional knowledge gained through additional

research could potentially be useful for advocates to

present in the political arena.

268

Because Alzheimer’s disease is a progressive brain

disorder that slowly destroys a person’s memory and ability

to acquire new information, think, make decisions, and

connect and carry out everyday activities (Alzheimer’s

Association, 2010), it would be interesting to compare the

experiences of caregivers whose care recipients are in

institutions, such as nursing home to those at home. The

interesting part after the completion of this

phenomenological study is that many other caregivers from

different Presbyterian churches expressed their readiness to

share their experience of caring for a family member with

mental deterioration. More than 15 caregivers would be

sufficiently high to conduct another study that could

produce enhanced treatment methodologies, incorporated

approaches, and concrete guidelines.

Health information can be too much to absorb for even

for a person with advanced literacy skills. Therefore it is

vital to underline the need for some educational awareness

on ADRD within community. Further research should embrace

269

pre- and posttest efficacy of culturally specific

educational programs to enlighten participants about ADRD.

Conclusion

The purpose of this study was to provide additional

research on the caretaking experiences of Nigerian family

members who were responsible for relatives with mental

deterioration from a dementia related disease. All 10

participants in this study had experienced caregiving for

loved ones with ADRD and had many detailed and similar

stories to tell. The findings were consistent with the

literature that caregivers who were caring for a family

member with ADRD experienced many roadblocks and had

problems implementing therapeutic mechanisms. Research

participants regularly identified how hard it was to be a

caregiver for a family member with mental deterioration. All

of the caregivers expressed high level of health issues such

as hypertension, back pain, stress, and depression every

day. Five of the caregivers stated that their care

recipients were diagnosed with hypertension but were not on

270

medications before receiving a diagnosis of ADRD. Due to

lack of medication, caregivers indicated that it contributed

to unpleasant caregiving experiences and delays in seeking

help for family members. All caregivers were able to share

their lives, from the time they embarked on their caregiving

role to their current concerns and worries. They were very

open to sharing their stories.

The in-depth interviews presented an understanding of

the meaning that caregivers credited to the experience. All

the participants freely shared their thoughts and emotions

and thanked the researcher for letting them tell their

stories. The caregivers felt ashamed to have a family member

with mental illness. African response differs when it comes

with mental illness. It is common for people with mental

illness to socialize with family members who closely monitor

their situation (Nyati & Sebit, 2002; Whyte, 1991a, 1991b).

Nonetheless, community members avoid intimate relations with

individuals living with mental illness (Adewuya &

Makanjuola, 2005).Although some of the caregivers did not

271

want to take their family members to doctors because they

were ashamed, they were relieved finally to know what was

wrong with their loved ones. One of the struggles that the

caregivers were having was fully accepting their care

recipients as they were without connecting ADRD to a “curse

or spiritual attack.”

Results were discussed and summarized and limitations

were highlighted along with implications for policy and

recommendations for further research. The themes of

Something is Wrong, Lack of Resources, Health Issues and

Financial Difficulties, Obligation and Resignation,

Insufficient Skills of Medical Professionals, Loss, Lack of

Awareness, and Getting Support from Family, Friends, and

Church members. Findings from spouse, son, and sister

caregivers of this study were congruent with prior studies.

The participants in this study talked continuously about the

importance of awareness and resources. These study findings

provide healthcare professionals with awareness to apply to

practice and educate families on how to care for their

272

family member with mental deterioration. As healthcare

professionals, they have the convenience to improve the

quality of life for those with ADRD and the families who

care for them.

273

274

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