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published online 7 November 2011DementiaLorraine Venturato, Wendy Moyle and Andrea Steel

practice documents help bridge the great divide?Exploring the gap between rhetoric and reality in dementia care in Australia: Could

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Article

Exploring the gap betweenrhetoric and reality indementia care in Australia:Could practice documentshelp bridge the great divide?

Lorraine VenturatoGriffith University, Australia

Wendy MoyleGriffith University, Australia

Andrea SteelRSL Care, Queensland, Australia

Abstract

Quality of care, and indeed, quality of life, for people living with dementia in long-term care is often

underpinned by philosophies of care, such as person-centred care and relationship-centred care.

The translation of these philosophies into practice is influenced by a range of individual and

organizational features, including the context in which such care occurs. Within modern care

organizations, the context of care is evidenced through organizational documents.

This study sought to identify the key documents guiding dementia care within one large

Australian long-term care organization and to explore points of consistency and tension within

the documented system of care. Results highlight a lack of consistency and clarity in the philosophy

of dementia care and a disconnection between the key documents guiding practice. This

disconnection creates tension for clinicians and carers, and may contribute to the gap between

rhetoric and reality in dementia care.

This study suggests that a congruent documented dementia system can help bridge the gap

between espoused philosophies of care and everyday care practices.

Keywords

care documents, dementia, documentation analysis, hermeneutics, person-centred care

Corresponding author:

Dr Lorraine Venturato, Research Centre for Clinical and Community Practice Innovation, Griffith Health Institute, Griffith

University, Kessels Road, Nathan, QLD 4111, Australia

Email: [email protected]

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Introduction

People are living longer than at any other time in the past. As a result, the incidence of chronicconditions associated with ageing and longevity is rising rapidly. This is especially truefor dementia, which is widely touted to be approaching epidemic proportions (AccessEconomics Pty. Limited, 2009; Nepal, Ranmuthugala, Brown, & Budge, 2008). Globalburden of disease estimates suggest that the disability weight or burden for dementia is high(World Health Organization, 2003). In Australia, dementia is estimated to be the leadingcause of burden of disease among people aged 75 years and over and it creates the fifthhighest burden across all ages (Australia Institute of Health and Welfare (AIHW), 2010).In part, this is because people with dementia tend to be heavy consumers of health services,particularly community and long-term care services (Ferri et al., 2005). Indeed, approximately60 per cent of people living in long-term care in Australia have a recorded diagnosis ofdementia (AIHW, 2010) and this figure is estimated to be much higher if those without aformal diagnosis are considered. Furthermore, cognitive impairment is frequently a cause ofadmission to long-term care (Andel, Hyer, & Slack, 2007; Bharucha, Pandav, Shen, Dodge, &Ganguli, 2004).

Although we can do little as yet to stop the onset or progressive decline associated withdementia, healthcare professionals in community and long-term care are well placed to affectquality of care and, by extension, quality of life (Courtney, O’Reilly, Edwards, & Hassall,2009). Since the late 1990s, notions of quality in dementia care have been associated withthe philosophies of person-centred care (based on the work of Kitwood, 1997) and, morerecently, relationship-centred care (based on the work of Nolan, Davies, Brown, Keady, &Nolan, 2004), and their tenets have become foundational to considerations of qualitydementia care. Some of these tenets include the recognition of the ethical aspects ofpersonhood, including interdependence and respect (Kitwood, 1997); recognition ofthe subjective experience of the person, regardless of cognitive ability (McCormack, 2004);the use of biographical knowledge (Kellett, Moyle, McAllister, King, & Gallagher, 2010); afocus on the person over tasks (Edvardsson, Fetherstonhaugh, & Nay, 2010); and arecognition of the importance of the relationship between the person with dementia, theirfamily and care staff (Nolan et al., 2008).

Rhetoric and reality

These tenets have spawned a number of models and frameworks for practice includingthe Senses Framework (Nolan et al., 2004), the VIPS Framework (Brooker, 2007) and theperson-centred care framework (McCormack & McCance, 2006). While there is debatesurrounding the theoretical and empirical rigour of such frameworks (Edvardsson et al.,2010), it is widely accepted that, despite the best intentions of these models andframeworks, practice remains largely rooted in traditional, task-focused care, bound by thethree Rs – routines, rules and regulations (Robinson & Gallagher, 2008). As a result, it isincreasingly obvious that there is a gap between the rhetoric surrounding accepted bestpractice and the realities of everyday practice in dementia care (Draper, Low, Withall,Vickland, & Ward, 2009; Hill, 2008; Moyle, 2010).

Consequently, researchers and service providers are increasingly focusing on ways tooperationalize person- and relationship-centred care in an attempt to bridge this gapbetween rhetoric and reality. One of the approaches to achieving this is through education.

2 Dementia 0(0)




This approach focuses on developing the knowledge and skills of individual care providersto enhance their understanding and uptake of philosophical tenets into practice. However,despite some benefits, it is increasingly recognized that education on its own is not sufficientto change practice (Edvardsson et al., 2010; Nolan et al., 2008; Vollmar, Butzlaff, Lefering, &Reiger, 2007).

Other attempts at bridging the gap have focused on the link between social and physicalenvironments, with space and design principles in the built environment increasingly beingconsidered from a person- and relationship-centred viewpoint (Alzheimer’s Australia, 2004;Davis, Byers, Nay, & Koch, 2009; Fleming & Purandare, 2010). Such approaches supportdementia-friendly built environments that encourage active participation and anunderstanding of the experience of life through a social model rather than an institutionalor medical model (Davis et al., 2009). Despite more aesthetic and dementia-friendlyenvironments, there is little evidence of widespread alteration in everyday practice andquality of care for people with dementia (Edvardsson et al., 2010).

Finally, an emerging area in bridging the gap between rhetoric and reality in dementia careincorporates insights from the field of knowledge transfer, knowledge translation andknowledge utilization (Moyle, 2010). These focus around processes to facilitate thedissemination and application of research findings and the subsequent use of thisknowledge in changing practice, and embedding ‘best’ practice in a systematic andconsistent manner (Greenhalgh, Robert, Macfarlane, Bate, & Kyriakidou, 2004; Quinlan,2009). Although this approach offers the promise of actual change and alignment ofprinciples and practice, it is also limited by the requirement for specialist staff,organizational commitment and appropriate resources (Moyle, 2010).

What is evident, despite this body of work, is that, while there are some examples ofquality dementia care in practice, in general, everyday dementia care remains deeply rootedin traditional, task-focused care. A number of reasons have been proposed for this includingthe transient nature and often limited education of the long-term care workforce, the volumeof research and speed of knowledge generation in dementia care (Draper et al., 2009),the historically slow integration of research into practice (Dearing & Kreuter, 2010), andsubtle differences between knowledge dissemination (which researchers may be experiencedat), knowledge diffusion and knowledge utilisation (making changes in practice based onnew knowledge) (Dearing & Kreuter, 2010). Such challenges in the linkage of knowledge,evidence and practice are not, however, specific to dementia care or to aged care ingeneral. Indeed, such gaps lie at the very core of the evidence-based practice movement(Dopson, FitzGerald, Ferlie, Gabbay, & Locock, 2010).

In dementia care, this gap is, in part, a reflection of the fact that quality of care and qualityof life are complex and multidimensional concepts (Brod, Stewart, Sands, & Walton, 1999)at both an individual and a social level. Such complexity is compounded in the context ofbroader organizational systems, competing demands and the regulatory nature ofcontemporary long-term care provision. Together these individual, organizational andsocial factors form the context of care for people with dementia living in long-term care.

Context of care: documentation

Within modern health and social care organizations, the context of care is manifested inorganizational documents (Prior, 2003). Modern organizations and social institutionsproduce massive volumes of documented material that are wide-ranging in scope and form.

Venturato et al. 3




They may be hard copy or electronic, text or image or both, and relate to policy, educationor practice, including written policies, processes, guidelines, educational and trainingmaterials, forms and audits, as well as assessment and care plans, progress notes,medication administration forms, and behaviour charts. Most importantly, for thepurposes of this study, documents may be organized into themes or systems associated withorganizational endeavour (Smith, 2005) or aspects of clinical practice. Thus, it is possible toidentify an organization’s system of dementia care through its documentation and to explorethe context of dementia care through document analysis.

This paper explores an organizational care environment for people with dementia (thecontext of dementia care) evident in a documented dementia care system. This documentedsystem analysis (based on Smith, 1988, 2005) was undertaken as part of a larger study onquality of life and moral worth of people with dementia living in long-term care (Moyle, Hsu,Lieff, & Vernooij-Dassen, 2010). Specifically, this documented system analysis sought to:

(1) identify the organizational documents that guide the care of people with dementia withinone care organization;

(2) consider the context of care identified through these documents; and(3) identify consistencies and tensions within the documented system of care for people with

dementia.

Research method

The analysis method presented in this paper is based on hermeneutics and institutionalethnography. In its broadest sense, hermeneutics refers to the interpretation of texts andthe study of meaning, while institutional ethnography is concerned with the ‘textualarchitecture of routine organisational action’ (Campbell & Gregor, 2004, p. 4). The methodused is underpinned by considerations of language and tensions (Gadamer, 2004; Smith, 1988;Townsend, Langille, & Ripley, 2003). Such tensions reflect discord between the ‘truth’ ofan experience and the dominant ideology (Habermas, 1972). Identifying these tensionsis an important mediator of understanding and the essence of the hermeneutic task. Suchan approach also recognizes the broader sociocultural context of dementia and the experienceof dementia care through a focus on organizational culture, defined here as the ‘material andideational’ aspects of an organization represented through its documented systems (O’Connoret al., 2007, p. 132).

Two analytical movements are used within this study to identify tensions anduncover points of dissonance within the documented system of dementia care. First, aquestion-and-answer dialectic is used, in which questions are posed and answers soughtfrom within documents, and secondly, a process of critical reflection, moving betweenthe whole and the parts at various levels within the process of analysis is used. Thus, eachdocument is analysed as both an individual document and as part of the broader documentedsystem of dementia care.

The innovative research design used the following three-step approach:

(1) Gathering and sorting of relevant documents into a document matrix;(2) Analysis within a single document category (across-level analysis); and(3) Analysis across all document categories (drill-down analysis).

4 Dementia 0(0)




The documentation matrix and analytical framework (see Table 1) were developed in linewith the aims of this study and are innovative in identifying new ways to manage and analysedocumented data.

The study

The setting

The study was conducted in one not-for-profit care organization operating a range of careservices across New South Wales and Queensland, Australia. As well, as community care and

Table 1. Documentation matrix and analytical framework

Venturato et al. 5




retirement living services, the organization also operates 25 long-term care facilities, ranging insize from 60 to 160 beds. The documents involved in this study were those used across the 25long-term care facilities. Like many aged care organizations in Australia, this organization isundergoing a period of rapid growth, as smaller providers are subsumed within largerorganizations in search of ‘economies of scale’.

Ethical considerations

The study received approval from the human research ethics committee of Griffith Universityand had the support of the not-for-profit organization.While the organization was supportiveof this research, there was some concern over confidentiality and commercial sensitivitiesin relation to the reporting of organizational material. Thus, for ethical and commercialreasons the reporting of source material in this paper is limited.

Data collection

Data collection entailed an iterative and exploratory process to identify and review relevantdocuments within the organization. Documents were drawn from electronic and hard-copysources and identified:

(1) through a process of electronic searching of the organization’s document managementsystem using the terms ‘dementia’ and ‘behaviour’;

(2) through manual searches; and(3) through the organization’s dementia specialists and facility staff.

This process was aided somewhat by the organization’s document management system,which linked relevant documents, both internal and external to the organization, viahyperlinks or notation. As a result, a range of relevant documents were identified, includingbrochures, forms, policy and procedure documents, the mission statement, philosophy of caredocuments, dementia care educational resources for staff, assessment forms and care plans.

Documents underwent initial screening to ensure relevancy to the study and Table 2identifies the questions posed of each document during the initial screening. At this stage, itwas determined that documents assigned to category 1 (higher-order documents that seekto guide care) would, by necessity, include general organizational documents, that is, they didnot need to relate specifically to dementia care. This is because most care organizationsonly have one set of guiding documents; one philosophy of care document, one missionstatement and one set of organizational values. These would, therefore, be common driversfor any documented system within the organization. Category 2 (mid-range documents thatseek to operationalize aspects of care within a documented system of care, e.g. guidelines,practice models) and category 3 documents (documents used in practice at the client/staffinterface, e.g. care plans, assessment forms), however, are more specific and, in this study,dementia-specific documents were sought. Thus, documents were excluded if they related togeneral care (relevant to all clients with or without dementia). Due to the specific aims of thelarger study, it was determined that category 4 documents (those that reflect outcomes of care,e.g. interviews, observations, satisfaction surveys) would be dealt with solely from a researchfocus. Results of the category 4 analysis are published separately (Moyle et al., 2011a; Moyleet al., 2011b).

6 Dementia 0(0)




The above process resulted in a final set of organizational documents that were dementia-focused and covered policy, care, education, practice and regulation/standards. Thesedocuments were then catalogued into one of the three levels of the documentation matrixaccording to their category (see Table 1). Following this, the analysis occurred, first acrosseach of levels 1–3 followed by a drill-down analysis through each level within the matrix.Analysis considered language, context, history and culture, as well as temporal changesevident within the documents (Gadamer, 2004). This level of analysis aimed to develop anunderstanding of the key elements of each category, including congruent or shared featuresand those that reflect a disconnection or that created dissonance and, therefore, tension withinthe documented system. The final stage of analysis involved a drill-down analysis to considerdocuments across all four categories in order to consider congruency, disconnections andtensions between the categories.

Results

Two main themes emerged from the analysis of each category and of the system as a whole.The first of these themes is titled ‘Aspiring, delivering, doing’ in response to the purpose andfocus of each document category. The second theme is titled ‘The great divide’ in response tothe findings from the drill-down analysis. Each theme contains a number of sub-themes.

Aspiring, delivering, doing

Aspiring . . . What we want to do!. Category 1 documents are aspirational in nature, in thatthey identify the values and goals of the organization. Documents in this category serve as thephilosophical and theoretical drivers for the provision of care within the organization, andincluded the philosophy of care, mission, vision and value statements. Analysis of thiscategory, as a whole, reveals a focus on the individual and on responsiveness to individualneeds (both client and staff). The philosophy of care is referred to as the ‘lifestyle approach’and this reflects a focus on supporting the maintenance of individualized choice and lifelonggrowth and participation as key outcomes for clients. Values identified within thesedocuments included concepts such as honesty, integrity, trust, caring, respect and openness.In general, these documents identify with concerns about the individual’s health, well-being,choice, decision-making and complex relationships.

Despite a general consistency in the focus of most of these documents, there are alsosome inconsistencies within this category, and a point of dissonance. Inconsistencies areparticularly evident in the philosophy of care documents whereby a number of versions ofthese documents were evident and rather than old versions being archived as the documents

Table 2. General questions posed at the initial screening of each document

1. What is the key focus of the document?

2. Who is the intended audience? Who is the document aimed at?

3. What concepts and terms are used?

4. What values (if any) are outlined in the document?

5. What purpose does the document serve?

6. Is there anything you would expect to see in this type of document and don’t?

Venturato et al. 7




were revised, they remained active in the system. While this led to some inconsistency andconfusion, it did facilitate understanding of the development and evolution of this keydocument over time. For example, the addition of terminology associated with ‘evidence-based practice’ emerged in the most recent versions of the document, but was not evident inthe original versions.

The organization’s mission statement was also identified as a point of dissonance as thisstatement took a completely different focus to other documents in this category, by identifyingthe organization’s mission in business terms (‘industry leader’; ‘first choice provider’), ratherthan in service terms, such as care. This dissonance creates a subtle tension in organizationalidentity and focus within the documents and this tension between business and care ishighlighted further by the organization’s listing as a not-for-profit setting.

Delivering . . . How we are going to achieve this!. Category 2 documents specifically serveto guide and direct the care of the person with dementia. Documents in this category includethe organization’s Dementia Approach (care model), dementia system views, brochuresand process documents relating to the care of people with dementia and staff training andeducational materials associated with dementia care. These documents draw heavily on thework of Kitwood (1997) and are based, to a greater or lesser degree, on a person-centred carephilosophy that recognizes the uniqueness of each individual. The key document in thiscategory is the Dementia Approach (referred to as the Dementia Management Model),which is aligned to the National Framework for Action on Dementia (2006–2010)(Australian Health Ministers’ Conference (AHMC), 2006) and includes value statementsassociated with inclusion, respect, personhood, sustaining and flexibility.

There are two sub-themes evident in the documents in this category. Firstly, the personwith dementia is recognized as an individual whose personhood is to be valued and respected,and secondly, staff knowledge, skill and specialist support is considered to be a vitalcomponent of dementia care. Documents across this category display a high degreeof congruency and indeed, most of them were authored by the same small group ofspecialist staff.

Doing . . . What we do when staff and residents come together!. Category 3 documentsare those used in the practice domain, where staff and clients come together in the processof assessing, planning and documenting care of the person with dementia. Across-levelanalysis suggests that this category of documents is also reasonably consistent in its focus.While there are no stated values inherent in these documents, they do reflect a fairlytraditional, biomedical focus, with an emphasis on physical care and identifying clientdeficits and limitations, with relatively less emphasis on psychosocial care and capacity.

Documents within this category frequently paid homage to category 1 documents(particularly in their title), without necessarily embracing the values and concepts espousedin category 1 documents. For example, the ‘Lifestyle support needs’ document includesmedication and pain management without mentioning client choice or holistic care, whilethe ‘Lifestyle issues’ document covers skin integrity, eating and drinking, toileting, mobilityand safety management.

While there were some exceptions, these documents largely reflected a biomedicalapproach to assessment and care planning, although there was some limited evidence ofpsychosocial data capture (primarily around terminal care beliefs, funeral arrangements,alcohol and smoking preferences, and aspects of life which are important to the individual).

8 Dementia 0(0)




While well-being and communication needs were identified within the documents, they wereagain largely conceptualized from a biomedical perspective. For example, well-being for theperson with dementia was measured using a combination of the Psychogeriatric AssessmentScale (PAS) and Cognitive Impairment Scale (CIS), as well as various behaviour anddepression scales. While the organizational documentation includes a form titled ‘Myprofile’, which aims to assist staff in ‘identifying and rekindling past pleasurable activitiesthat might be still within the resident’s capabilities’ and ‘to get to know the residents better’,there is little evidence that this form, which is used by the diversional therapists in planningactivities, is actually linked to individual activity plans. Thus, even where assessmentdocuments do offer some support for individualized care, this is rarely carried through inaction-oriented (planning) documentation.

Table 3 highlights the findings from the analysis of each document category.

The great divide

Not surprisingly, given the above results, the drill-down analysis of the document system as awhole highlighted a significant tension. This tension occurred between category 1 and 2documents, which were reasonably compatible, and those in category 3. In many ways, thisis a reflection of the broader tension between rhetoric and reality discussed earlier in thispaper.

This tension sees a marked shift in purpose, function and focus of documents withincategory 3 and breaks the focus on the individual. This shift to a biomedical structure andfocus is evident in the assessment documents in particular, and includes a shift tomeasurementand losses/limitations, as opposed to capacity and holistic considerations. By applying abiomedical view, category 3 documents promote a standardized view of people withdementia, and residents in general, with little capacity for individualization. Category 3documents are found at the interface between clients and staff and are essentially action-oriented documents, that is, they have effects (Prior, 2003), and this change in focus servesto redirect practice and action away from the individual needs. As Smith (1988) suggests,everyday experience is regulated by organizational practices and policies (throughdocumented systems), and these shape both the experience of care (for clients) and thepractice of care (for staff).

One possible explanation for this disconnection between category 1/2 and category 3documents is the document drivers. In this study, two principal sources or drivers areidentified:

(1) Professional discourses and evidence-based literature; and(2) Legislation and regulation-based documents (see Table 4).

Professional and research-based literature reflects the professional knowledge base andprofessional standards for practice. These are reflected in professional guidelines, research,evidence-based practice information and professional discussions. The key conceptsembedded in contemporary, professional literature related to dementia care include notionsof personhood, person and relationship-centred care, and quality of life (Venturato, 2010).These are evident in, and consistent with, the key themes identified in category 1 and 2documents.

Venturato et al. 9




Tab

le3.

Docu

menta

tion

mat

rix

and

acro

ss-lev

elan

alys

is

Docu

mentc

atego

ryD

ocu

ment

types

Docu

ment

purp

ose

Exam

ple

sfr

om

this

rese

arch

Acr

oss

-leve

lan

alys

is

Cate

go

ry

1:

Hig

her-

ord

er

docu

ments

Philo

sophy

ofth

e

org

aniz

atio

n;m

issi

on

stat

em

ent;

goal

s;va

lues

These

docu

ments

identify

the

org

aniz

atio

nal

philo

sophy;

aim

san

d

mis

sion;va

lues

and

goal

s

for

clie

nt

care

.T

hese

are

theore

tica

lly,ab

stra

ctan

d

philo

sophic

ally

ori

ente

ddocu

ments

.

Philo

sophy

ofca

re;m

issi

on

stat

em

ent;

pro

duct

know

ledge

guid

e;vi

sion;

valu

es

Pu

rpo

se:A

spir

atio

nal

docu

ments

;bas

ed

on

the

resp

onsi

veness

toin

div

idual

needs

Co

reele

men

ts:In

div

idual

atth

ece

ntr

e

Valu

es:

Honest

y,in

tegr

ity,

trust

,ca

ring,

resp

ect

and

openness

Mess

age:R

elat

ionsh

ips,

care

,etc

.are

des

igned

toenhan

cech

oic

e,h

ealth,w

ellb

ein

g,par

tici

pat

ion

and

life-

long

grow

th.

Cate

go

ry

2:

Mid

-ran

ge

docu

ments

Org

aniz

atio

nal

models

;

polic

ies;

pro

cedure

s

These

docu

ments

identify

how

the

visi

on,va

lues

and

goal

sw

ill

be

enac

ted/a

chie

ved

inpra

ctic

e.

These

are

applic

atio

n-f

ocu

sed

docu

ments

.T

hey

guid

eac

tion

and

should

alig

nac

tions

(lev

el3)

togo

als

(lev

el1).

Dem

entia

care

model;

Par

tners

hip

sin

dem

entia

care

;C

arin

gtips

bro

chure

;

Dem

entia

syst

em

svi

ew

;D

em

entia

educa

tion

and

trai

nin

gm

ateri

als

Pu

rpo

se:To

guid

eth

eca

reofth

ePW

D;st

aff

educa

tion

and

trai

nin

g

Co

reele

men

ts:B

ased

on

pers

on-c

entr

ed

care

;

uniq

ueness

ofeac

hin

div

idual

.A

ligned

toth

e

Nat

ional

Fram

ework

for

Act

ion

on

Dem

entia

(2006–2010)

Valu

es:

Incl

usi

on,re

spect

,pers

onhood,

sust

ainin

g,fle

xib

ility

Mess

age:

1.T

he

PW

Dis

anin

div

idual

whose

per

sonhood

is

tobe

valu

edan

dre

spec

ted.

2.S

taff

know

ledge

,ski

llsan

dsp

ecia

listsu

pport

isa

vita

lco

mponen

tofdem

entia

care

.

Cate

go

ry

3:

Car

edocu

ments

Car

eD

ocu

ments

These

docu

ments

exis

tat

the

inte

rfac

e

betw

een

the

staf

fofan

org

aniz

atio

n

and

the

clie

nts

.T

hese

are

action-

ori

ente

ddocu

ments

.

Car

epla

ns;

asse

ssm

ent

char

ts/form

s;pro

gress

note

s;ac

tivi

typla

ns

Pu

rpo

se:A

ssess

ing,

pla

nnin

gan

ddocu

menting

care

;au

ditin

gan

dac

creditat

ion

Co

reele

men

ts:B

io-p

sych

o-s

oci

aldat

a

Valu

es:

(Im

plie

d)

bio

medic

alin

nat

ure

,

pre

scri

ptive

.

Mess

age:St

rong

em

phas

ison

phy

sica

l

care

and

limitat

ions;

less

em

phas

ison

psy

choso

cial

care

and

capac

ity.

Cate

go

ry

4:

Experi

ential

docu

ments

a

Resi

dent

satisf

action

surv

eys;

com

pla

ints

;

rese

arch

docu

ments

These

docu

ments

refle

ctth

e

experi

ence

ofca

re.T

hese

are

outc

om

e-o

riente

ddocu

ments

.

Report

ed

els

ewhere

Report

ed

els

ew

here

PW

D:pers

on

with

dem

entia.

aD

ocu

ments

inth

isca

tego

ryin

clude

rese

arch

(inte

rvie

wtr

ansc

ripts

;surv

eys;

obse

rvat

ions;

and

field

note

s)an

dorg

aniz

atio

nal

docu

ments

(resi

dent

satisf

action

surv

eyre

port

s;re

sident

and

fam

ilyco

mpla

ints

,etc

.).T

hese

docu

ments

are

not

incl

uded

inth

isdocu

ment

anal

ysis

.T

he

grey

shad

ing

denote

sth

eorg

aniz

atio

nal

docu

ments

incl

uded

inth

isdocu

ment

anal

ysis

.

10 Dementia 0(0)




The second source or drivers identified in this study are legislative and regulatory in nature.In Australia, these include the Aged Care Act 1997 and documents related to accreditationand regulation of the long-term care industry. These documents are developed by governmentin order to establish standards for aged care regulation. Key concepts within these documentsinclude the identification of indicators of quality of care and its link to accreditation andfunding. In particular, the Aged Care Funding Instrument (ACFI) serves to classifyresident need according to diagnostic information and the level of care required across 12care needs. While not designed to guide assessment and care planning, its interpretation, ormisinterpretation, drives assessment documents and processes within the industry asorganizations seek to maximize their funding and revenue through assessment, careplanning and associated documentation.

Thus, an explanation for the tension point and break in conceptual congruency, i.e. a focuson individual care versus a biomedical focus, might be that category 1 and 2 documents tendto reflect research and professional narratives associated with best practice in dementia care.However, analysis of category 3 documents suggests that the practice focus is driven bygovernment standards and regulation requirements. This, together with nursing’straditional, biomedical focus, may afford an explanation for the disconnection and tensionsidentified between categories.

Table 4. Documentation drivers

Category Document types Document purpose

Examples from this

research Source/driver

Category 1:

Higher-order

documents

The

organization’s

mission

statement:

goals; values

These documents

identify the

organizational aims

and mission; values

and goals for client care

Philosophy of care;

mission statement;

vision; values

Evidence-based

literature:

Research; grey

literature; professional

standards

Category 2:

Mid-range

documents

Organizational

models; policies;

procedures

These documents

identify how the vision,

values and goals will be

enacted/achieved in

practice. They guide

action and should align

actions (level 3) to

goals (level 1).

Dementia care

model; Caring tips

brochure;

Dementia systems

view

Category 3:

Care documents

Care documents These documents

exist at the interface

between the staff of

the organization and

the clients.

Care plans;

assessment charts/

forms; progress

notes; activity plans

Legislation and

funding:

Biomedical and

funding-driven

Category 4:

Experiential

documents

Interview

transcripts; field

notes

These documents

reflect the experience

of care.

Drivers for Levels 1 and 2 documents: Evidence-based literature Drivers for Level 3 documents: Legislation and funding.

Venturato et al. 11




Implications and discussion

Two issues associated with the delivery of quality care for people with dementia havebecome apparent in recent times. The first of these is the challenge of operationalizingperson-centred care and relationship-centred care concepts in everyday practice. Thischallenge is evident in the recognition of a gap between practice and theory commonlybeing referred to as the gap between rhetoric and reality in dementia care (Moyle, 2010).This gap is generally considered in one of two ways: as an individual practitioner issue,usually related to knowledge or attitude (Moyle et al., 2010); or as a function of the workenvironment, associated with workload and time constraints, which are seen to limitopportunities for individualized care and interaction (Edvardsson, Sandman, Nay, &Karlsson, 2009).

This study suggests a third possibility: that documented systems of care withinorganizations serve to maintain this gap through directing action (and interaction) towardsstandardized, biomedical and task-focused practices. This may be because ‘people routinelyconduct their work through texts, forms and reports’ (Campbell & Gregor, 2004, p. 33).Indeed, it is recognized that organizational culture (including values and beliefs, resourceallocation, textual systems and even architecture) contributes to ‘shaping the nature ofservices and the manner in which they are delivered’ (O’Connor et al., 2007, p. 132).

This has a number of implications for people with dementia, the staff caring for themand the organizations providing care services. For people with dementia, the implicationsinclude a sense of being devalued (Moyle et al., 2010), limitations to the quality ofindividualized care, and ultimately, limitations to their quality of life. For staff, the tensionbetween aspiring/delivering (what they should do) and doing (what they actually do) can leadto role strain and burnout (Edvardsson et al., 2009). For organizations, the developmentof effective systems and efficient processes is essential to the delivery of quality care, as wellas their sustainability in themarketplace. Tensions within documented systemsmay impact onstaff engagement and retention (Venturato, Kellett, & Windsor, 2007), as well as theirability to deliver quality care. It also limits the efficiency and effectiveness of organizationalprocesses.

This study suggests that organizations, and in particular those within organizationswho write policy, procedure and practice documents should consider their documentedsystems as a whole, rather than focusing on individual documents as single entities. Suchconsideration would seek to align practice documents with aspirational documents in orderto minimize tensions within the system. Furthermore, a congruent documented dementiacare system may help bridge the gap between espoused philosophies of care and everydaycare practices.

The second issue associated with the delivery of quality care for people with dementiacentres on processes for changing practice. This has become particularly evident inconsideration of knowledge transfer and utilization and the evidence-based practice (EBP)movement (Moyle, 2010; Masso & McCarthy, 2009). While EBP has largely focused onchange at the individual level, quality improvement processes have often focused onsystems and processes (Masso & McCarthy, 2009). While it is not the intent of this paper toengage in a lengthy discussion relating to developing EBP processes, this study does suggeststhat consideration of documented systems of care may offer an approach to bridge this gapbetween EBP and quality improvement processes and link individual action and practice withsystem and process issues.

12 Dementia 0(0)




For example, current literature suggests that care planning in long-term care shouldincorporate resident involvement and procedures for ongoing consent (Butterworth, 2005;Worden & Challis, 2008), as well as narrative approaches (Heliker, 1999). It is also recognizedthat biographical, as well as biological data needs to be captured, particularly in care planningin chronic conditions (Kellett et al., 2010). Traditional EBP approaches focused on theindividual practitioner would support education and skill development to reframe careplanning processes. However, findings from this study suggests that changing care planningpractices within the organization also requires changes to the documented system – in bothclinical documents (assessments and care plans) and policy and process documents. Given thattexts shape actions (Prior, 2003), changing practice needs to consider both the individualpractitioner and the systemic issues that shape their practice.

A third issue associated with the delivery of quality care for people with dementia hasbecome apparent in this study: the issue of different drivers that shape organizationalsystems. Within aged care in Australia, organizational systems are shaped by researchand profession discourses, as well as by legislative and regulatory structures. While researchand professional discourse focus on best practice and quality of care issues, in general,regulatory and legislative structures focus on industry control and the policing of minimumstandards, and quality is conceptualized as a measure of economic efficiency. Thus, thesedrivers serve very different purposes.

O’Connor et al. (2007, p. 132) suggest that:

‘. . . at any given time, there are multiple and competing discourses, or storylines, available through

which one can make sense of the world . . . [and] to develop a contextualized account ofpersonhood in dementia, it is necessary to identify and interrogate the different storylines thatare being used to construct the dementia experience in relation to their social, historical and

political contexts’.

They also note that research that considers these varied contexts is only just beginningto emerge.

This study supports the need for further research and ‘interrogation’ of the politicalcontext as a contributor to the broader social discourse and as a shaper of organizationalstructures and systems. In this respect, this study supports that of Downs (2000) who called fora comprehensive and multidimensional vision of care for people with dementia that includesthe personal (subjective), the organizational and the broader social and political storylines.

Limitations of the study

It should be noted that the findings are drawn from one research study and one long-termcare organization. Other organizations may have a different structure in their documentsystems, for example, a three-level document system. There may also be a place within thisapproach for broader policy and external document review as drivers and as a source ofanalysis. A comprehensive system analysis, incorporating category 4 documents (outcomesof care) may also be useful, particularly if considering broader documented systems of care(e.g. beyond one organization). It is also outside the scope of this study to establish howpractice (category 3) documents may be modified to incorporate philosophical concepts ofcare and whether this would indeed enhance quality of care and quality of life for people livingwith dementia in long-term care.

Venturato et al. 13




Conclusions

This study of a documented system of dementia care offers further insights into both thecontext of care for people with dementia living in long-term care and the tensions inherentwithin such systems. These tensions within the system go some way towards explainingthe complex web of issues associated with grounding philosophical notions of bestpractice, such as person-centred care, in everyday practice. In this way, this study adds afurther dimension to understanding the gap between rhetoric and reality in dementia care andmoves such understanding beyond the individual practitioner to include broader system andcontextual challenges. Furthermore, the findings from this study suggest that documentedsystem analysis is a useful methodological approach to understanding organizational andcontextual issues associated with quality of care within long-term care organizations.

Funding

This study was funded by the Australian Research Council (LPO775127; Moyle, W., McAllister, M.,

Venturato, L., & Oxlade, D.) under the Linkage Project Scheme for 2007–2010 and collaborating

industry partner RSL Care, Queensland, Australia.

Acknowledgments

We would like to acknowledge the management, staff and residents who participated in this research.

Notes

1. The VIPS definition of person-centred care, as defined by Brooker (2007), encompasses four majorelements:

V: Valuing people with dementia and those who care for them.I: Individualized care.P: The perspective of the person.

S: Supportive social psychology.

References

Access Economics Pty. Limited (2009) Keeping dementia front of mind: incidence and prevalence 2009–2050. Final report for Alzheimer’s Australia. Canberra: from http://www.alzheimers.org.au/research-

publications/access-economics-reports.aspx.Alzheimer’s Australia (2004) Dementia Care and the Built Environment. Position Paper Number 3 (June

2004). Canberra: Alzheimer’s Australia. Retrieved August 24, 2011, from http://www

.alzheimers.org.au/research-publications/alzheimers-australia-numbered-publications.aspx.Andel, R., Hyer, K., & Slack, A. (2007). Risk factors for nursing home placement in older adults with

and without dementia. Journal of Aging and Health, 19(2), 213–228.Australian Health Ministers’ Conference (AHMC) (2006) National Framework for Action on Dementia

2006–2010 (pp. 2–7). Sydney: New South Wales Department of Health. Retrieved August 24, 2011,from http://www.alz.co.uk/sites/default/files/australia_plan.pdf.

Australian Institute of Health and Welfare (AIHW) (2010) Australia’s Health 2010. Canberra: AIHW.

Retrieved August 24, 2011, from http://www.aihw.gov.au/publication-detail/?id¼6442468376&tab¼2.

Bharucha, A. J., Pandav, R., Shen, C., Dodge, H.H., &Ganguli,M. (2004). Predictors of nursing facility

admission: a 12-year epidemiological study in the United States. Journal of the American GeriatricsSociety, 52(3), 434–439.

14 Dementia 0(0)




Brod, M., Stewart, A. L., Sands, L., & Walton, P. (1999). Conceptualization and measurement of

quality of life in dementia: the dementia quality of life instrument (DQoL). Gerontologist, 39(1),25–35.

Brooker, D. (2007). Person-centred dementia care. Making services better (Bradford Dementia Group

Good Practice Guides). London: Jessica Kingsley Publishers.Butterworth, C. (2005). Ongoing consent to care for older people in care homes. Nursing Standard,

19(20), 40–45.Campbell, M., & Gregor, F. (2004).Mapping social relations: a primer in doing institutional ethnography.

Walnut Creek, CA: AltaMira Press.Courtney, M., O’Reilly, M., Edwards, H., & Hassall, S. (2009). The relationship between clinical

outcomes and quality of life for residents of aged care facilities. The Australian Journal of

Advanced Nursing, Vol. 26(4), 49–57 (Retrieved August 24, 2011, from http://www.ajan.com.au/Vol26/26-4_O’Reilly.pdf.

Davis, S., Byers, S., Nay, R., & Koch, S. (2009). Guiding design of dementia friendly environments

in residential care settings: Considering the living experiences. Dementia, 8(2), 185–203.Dearing, J. W., & Kreuter, M. W. (2010). Designing for diffusion: how can we increase uptake of

cancer communication innovations. Patient Education and Counseling, 81(Suppl), S100–S110.Dopson, S., FitzGerald, L., Ferlie, E., Gabbay, J., & Locock, L. (2010). No magic targets!

Changing clinical practice to become more evidence based. Health Care Management Review,35(1), 2–12.

Downs, M. (2000). Dementia in a socio-cultural context: An idea whose time has come. Ageing and

Society, 20(3), 369–375.Draper, B., Low, L. F.,Withall, A., Vickland, V., &Ward, T. (2009). Translating dementia research into

practice. International Psychogeriatrics / IPA, 21(Suppl 1), S72–S80.

Edvardsson, D., Fetherstonhaugh, D., & Nay, R. (2010). Promoting a continuation of self andnormality: person-centred care as described by people with dementia, their family members andaged care staff. Journal of Clinical Nursing, 19(17–18), 2611–2618.

Edvardsson, D., Sandman, P. O., Nay, R., & Karlsson, S. (2009). Predictors of job strain in residentialdementia care nursing staff. Journal of Nursing Management, 17(1), 59–65.

Ferri, C. P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., et al. (2005). Globalprevalence of dementia: a Delphi consensus study. Lancet, 366(9503), 2112–2117.

Fleming, R., & Purandare, N. (2010). Long-term care for people with dementia: environmental designguidelines. International Psychogeriatrics / IPA, 22(7), 1084–1096.

Gadamer, H. G. (2004). Truth and method (2nd Rev. ed.). Translation revised by Weinsheimer, J. &

Marshall, D. G. New York: The Continuum International Publishing Group.Greenhalgh, T., Robert, G., Macfarlane, F., Bate, P., &Kyriakidou, O. (2004). Diffusion of innovations

in service organizations: systematic review and recommendations. The Milbank Quarterly, 82(4),

581–629.Habermas, J. (1972). Knowledge and human interests. Translated by Shapiro, J. Boston, MA: Beacon

Press.

Heliker, D. (1999). Transformation of story to practice: an innovative approach to long-term care. Issuesin Mental Health Nursing, 20(6), 513–525.

Hill, H. (2008). Talk but no walk: barriers to person-centred care. Journal of Dementia Care, 16(4),21–24.

Kellett, U., Moyle, W., McAllister, M., King, C., & Gallagher, F. (2010). Life stories and biography: ameans of connecting family and staff to people with dementia. Journal of Clinical Nursing, 19(11–12),1707–1715.

Kitwood, T. (1997). Dementia reconsidered: the person comes first. Maidenhead: Open University Press.Masso,M., &McCarthy, G. (2009). Literature review to identify factors that support implementation of

evidence-based practice in residential aged care. International Journal of Evidence-Based Healthcare,

7(2), 145–156.

Venturato et al. 15




McCormack, B. (2004). Person-centredness in gerontological nursing: an overview of the literature.

Journal of Clinical Nursing, 13(3a), 31–38.McCormack, B., & McCance, T. V. (2006). Development of a framework for person-centred nursing.

Journal of Advanced Nursing, 56(5), 472–479.

Moyle, W. (2010). Is quality of life being compromised in people with dementia in long-term care?International Journal of Older People Nursing, 5(3), 245–252.

Moyle, W., Hsu, M. C., Lieff, S., & Vernooij-Dassen, M. (2010). Recommendations for staff educationand training for older people withmental illness in long-term aged care. International Psychogeriatrics

/ IPA, 22(7), 1097–1106.Moyle, W., Venturato, L., Griffiths, S., Grimbeek, P., McAllister, M., Oxlade, D., et al. (2011a). Factors

influencing quality of life for people with dementia: a qualitative perspective.Aging &Mental Health,

0(0), 1–8. Retrieved August 24, 2011, from http://www.tandfonline.com/doi/abs/10.1080/13607863.2011.583620.

Moyle, W., Murfield, J., Griffiths, S. & Venturato, L. (2011b). Care staff attitudes and experiences of

working with older people with dementia. Australiasian Journal on Ageing, DOI: 10.1111/j.1741-6612.2010.00470.x.

Nepal, B., Ranmuthugala, G., Brown, L., & Budge,M. (2008).Modelling costs of dementia in Australia:evidence, gaps, and needs. Australian Health Review, 32(3), 479–487.

Nolan, M. R., Davies, S., Brown, J., Keady, J., & Nolan, J. (2004). Beyond person centred-care: a newvision for gerontological nursing. Journal of Clinical Nursing, 13(3a), 45–53.

Nolan, M., Davies, S., Brown, J., Wilkinson, A., Warnes, T., McKee, K., et al. (2008). The role of

education and training in achieving change in care homes: a literature review. Journal of Research inNursing, 13(5), 411–433.

O’Connor, D., Phinney, A., Smith, A., Small, J., Purves, B., Perry, J., Drance, E., et al. (2007).

Personhood in dementia care: Developing a research agenda for broadening the vision. Dementia,6(1), 121–142.

Prior, L. (2003). Using documents in social research. London: Sage Publications Ltd.

Quinlan, E. (2009). The ‘actualities’ of knowledge work: an institutional ethnography of multi-disciplinary primary health care teams. Sociology of Health & Illness, 31(5), 625–641.

Robinson, G. E., & Gallagher, A. (2008). Culture change impacts quality of life for nursing homeresidents. Topics in Clinical Nutrition, 23(2), 120–130.

Smith, D. E. (1988). The everyday world as problematic: A feminist sociology. Toronto, Canada:University of Toronto Press.

Smith, D. E. (2005). Institutional ethnography: a sociology for people (Gender Lens series). Walnut

Creek, CA: AltaMira Press.Townsend, E., Langille, L., & Ripley, D. (2003). Professional tensions in client-centered practice: using

an institutional ethnography to generate understanding and transformation. The American Journal of

Occupational Therapy, 57(1), 17–28.Venturato, L. (2010). Dignity, dining and dialogue: reviewing the literature on quality of life for people

with dementia. International Journal of Older People Nursing, 5(3), 228–234.

Venturato, L., Kellett, U., &Windsor, C. (2007). Nurses’ experiences of practice and political reform inlong-term aged care in Australia: implications for the retention of nursing personnel. Journal ofNursing Management, 15(1), 4–11.

Vollmar, H. C., Butzlaff, M. E., Lefering, R., & Rieger, M. A. (2007). Knowledge translation on

dementia: a cluster randomized trial to compare a blended learning approach with a ‘‘classical’’advanced training in GP quality circles. BMC Health Services Research, 7, 92.

Worden, A., & Challis, D. (2008). Care planning systems in care homes for older people. Quality in

Ageing, 9(2), 28–38.WorldHealth Organisation (2003)TheWorld Health Report 2003: Shaping the Future. Retrieved August

24, 2011, from http://www.who.int/whr/2003/en/whr03_en.pdf.

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Lorraine Venturato is a Research Fellow in the School of Nursing and Midwifery and theResearch Centre for Clinical and Community Practice Innovation at Griffith University. Sheholds a joint appointment with RSL Care. Her research focus is on the organizationalelements of service delivery for older people, aged care workforce and models of care, andsystemic influences on dementia care.

WendyMoyle is a Professor and Director of the Research Centre for Clinical and CommunityPractice Innovation at GriffithUniversity. Her research focus has been on finding evidence formanaging agitated behaviours in people with dementia using controlled trials andpsychosocial and complementary and alternative medicine interventions, quality of life forpeople with dementia and their carers and the development of a capabilities model of care.

Andrea Steel holds a Bachelor of Behavioural Science (Psychology) from QueenslandUniversity of Technology completed in 2007. She currently works for RSL Care in theService Development Team working across areas of research, practice development andstrategy. She has worked in the aged care industry for 14 years and has a passionateinterest in positive outcomes for this group. Her areas of interest are dementia, telehealth,health and well-being.

Venturato et al. 17

