Susan reinhard c tac meeting

Title text here

Consumer Research Symposium (C-TAC)

Susan C. Reinhard, RN, PhD, FAANSenior Vice President, AARP Public Policy Institute

June 27, 2013

New Research

Home Alone: Family Caregivers Providing Complex Chronic Care

• Partnership between the AARP Public Policy Institute and the United Hospital Fund

• Funded by The John A. Hartford Foundation

Find at AARP.org/homealone

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Background of Survey and Report• AARP Public Policy Institute and United Hospital Fund

collaborated on first in-depth national survey of family caregivers

This report documents:– What medical/nursing tasks family caregivers do;– What they find difficult;– Who trains them; and – Impact on their quality of life.

Background of Survey and Report• Grew out of concern that training and support for

family caregivers based on outmoded assumptions and measures– ADLs developed in 1950s to assess elderly patients’ recovery from hip

fracture– IADLs added in 1960s to assess independence at home

• Those assumptions and measures were not intended to describe or assess family caregivers

• Aging population with multiple chronic conditions and disabilities plus increased use of medications have changed caregiving responsibilities

Background of Survey and Report• Online survey questions based on studies of

specific populations of family caregivers, literature review, and authors’ experiences

• Fielded by Knowledge Networks, survey research firm in December 2011; hardware and Internet access provided if needed

• Screener asked broad question about providing assistance of various kinds in previous 12 months

• Exclusion: caregivers of people permanently residing in nursing homes

• Full panel of 1,677 respondents

Report Findings

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• 46% of the caregivers in the panel (n=1,677) performed medical/nursing (M/N) tasks

• Almost all of medical/nursing caregivers (> 96 %) also provided ADL or IADL assistance.

Medical/Nursing Tasks

Characteristics of Family Caregivers Performing Medical Nursing Tasks

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• Majority were females (62 percent) but 4 out of 10 were men

• Across ages, from 18 to 80+. Mean age was 54.

• Almost half (46%) were working, and more than half (58%) had attended or graduated from college

• Household income distribution was broad, but not skewed toward the high end, with just 19% over $100K

• The largest group of caregivers were adult children caring for their parents (37%)

Characteristics of Care Recipients of Medical/Nursing Tasks• Majority of the care recipients were female (59%), but 4 out of 10

were men

• 89% were over age 50; mean age was 71

• 52% lived with their family caregiver; so almost half of family caregivers lived apart from the person receiving the medical/nursing care

• 9 out of 10 had chronic physical health conditions; 1 out of 3 had cognitive conditions

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Health Service Use by Care Recipients Receiving Medical Nursing Tasks

Within the past 12 months:

•7 out of 10 (68%) went to an Emergency Department at least once; 43% were in the ER 2 or more times

•6 out of 10 had at least one overnight hospital stay; 37% had 2 or more overnight stays

•1 0ut of 3 (34%) of care recipients used an ambulatory care surgery setting

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Care Coordinators(percent) All

M/N Tasks

ADL/IADL

Caregiver 37 53 24

Care Recipient or Other Family Member of the Caregiver or the Care Recipient

23 16 29

Primary Care Doctor 23 16 29

Specialist Physician 5 5 5

Care Manager (geriatric, or from private insurance or government program)

3 3 4

Physician’s Assistant, Nurse, or Assistant in Doctor’s Office

3 3 2

Care Recipient + Caregiver/Other Family Member 1 2 1

Other 2 1 3

No Response 2 2 2

Family Caregivers Find Some Tasks More Difficult than Others

Medical/Nursing Task

#Performing

Task

#Reported Hard Task

% Reported Hard Task

Use incontinence equipment, supplies, administer enemas

194 130 67

Do wound care (bandages, ointments, prescription drugs for skin care, or to treat pressure sores or post-surgical wounds) and ostomy care

275 181 66

Manage medications, including IV and injections 607 373 61Prepare food for special diets 319 170 53Operate medical equipment (mechanical ventilators, oxygen, tube feeding equipment, home dialysis equipment, suctioning equipment)

111 54 49

Help with assistive devices for mobility like canes or walkers

333 129 39

Use meters/monitors (thermometer, glucometer, stethoscope, weight scales, blood pressure monitors, oxygen saturation monitors), administer test kits, use telehealth equipment

275 100 36

Operate durable medical equipment (hospital beds, lifts, wheelchairs, scooters, toilet or bath chairs, geri-chairs, for example)

162 58 36

Other 7 5 71

So Many Meds, So Little Training • 3 out of 4 were managing medications, including

administering intravenous fluids and injections– Almost half administered 5 to 9 prescription

medications a day; – 1 in 5 helped with 10 or more prescription

medications a day; – 75% administered over-the-counter drugs.

• 31% actively monitored for side effects

• Most learned how to manage at least some of the medications on their own.

• Many found this work difficult because it was time-consuming and inconvenient, they were afraid of making a mistake, and/or the care recipient would not cooperate.

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“I constantly monitor drugs”-Family Caregiver

Training for Medication Management

Wound Care is Very Challenging and Training is Needed

• More than a third (35%) of family caregivers who provided medical/nursing tasks reported doing wound care.

• 2 out of 3 identified it as difficult; many found this task to be time-consuming and emotionally difficult.

• 4 out of 10 learned on their own and would like more training.

• Of these caregivers, close to half (47%) were afraid of making a mistake and/or harming their family member.

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Family Caregivers Feel Pressured

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Home Visits

• Home visits and additional help at home are not common

AllM/N

TasksADL/IADL

Received a Home Visit 31 36 26

No Home Visits 69 64 73

No Response <1 <1 <1

Home Visits

• Home visits and additional help at home are not common– 3 out of 10 caregivers had no additional help at home

Additional Help at Home AllM/N

TasksADL/IADL

Additional Family Member 54 49 58Home Care Aide 19 23 16Friend 12 11 13Other 1 1 1No Additional Assistance 27 30 25No Response 20 21 19

The More tasks, the Greater the Consequences for Family Caregiver Well Being

• Family caregivers who performed five or more medical/nursing tasks were most likely to believe they are making an important contribution.

• More than half reported feeling down, depressed or hopeless in the last two weeks

• More than a third reported fair or poor health.

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“In the last year and a half I have developed high blood pressure, diabetes, and weight gain so now I have sleep apnea” -Family Caregiver

These Caregivers Help Avoid Institutionalization

• The more medical/nursing tasks family caregivers perform, the more likely they reported helping the care recipient avoid nursing home placement.

• Those who had some training were more likely to say they were able to help avoid nursing home placement.

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Family Caregiver Help with Medical/Nursing Tasks and Effect on Care Recipients’ Quality of Life

Home Alone Recommendations

• Consensus-building body (IOM) should revisit ADLs and IADLs and develop new measure to include medical/nursing tasks.

• Health care professionals must fundamentally change the way they interact with caregivers in daily practice.

• Health care provider organizations must support professionals in their efforts to change.

• Educators need new curricula to strengthen focus on family caregivers.

Home Alone Recommendations (con’t)• Accrediting and standard-setting organizations

must take seriously their evaluation of how well institutions incorporate family caregiver needs.

• Federal and State policymakers should proactively consider family caregivers in developing new models of care that focus on care coordination and quality improvement.

Questions?

Susan [email protected]

Follow: @AARPPolicy 202-434-3840

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