ENHANCING QUALITY OF LIFE FOR AGED CARE FACILITY RESIDENTS WITH DEMENTIA: THE ROLE OF ‘MEANINGFUL ACTIVITIES’ Laura Tierney Bachelor of Health (Hons) Submitted in fulfilment of the requirements for the degree of Doctor of Philosophy School of Nursing Faculty of Health Queensland University of Technology 2020
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Bachelor of Health (Hons)7.1 Research question 1- What are the fundamental attributes of a ‘meaningful activity’ for people with dementia? .....232 7.2 Research question 2- What
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ENHANCING QUALITY OF LIFE FOR AGED CARE FACILITY RESIDENTS WITH DEMENTIA:
THE ROLE OF ‘MEANINGFUL ACTIVITIES’
Laura Tierney Bachelor of Health (Hons)
Submitted in fulfilment of the requirements for the degree of
Doctor of Philosophy
School of Nursing
Faculty of Health
Queensland University of Technology
2020
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ i
Keywords
Dementia, meaningful activity, person-centred care, quality of life, residential aged care.
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ ii
Abstract
Background
People living with dementia in residential aged care facilities (RACFs) have reported that
participation in activities is important for their experience of good quality of life (QoL). With
person-centred care the dominant philosophy informing approaches to care for people with
dementia, it is important to consider the perceptions of activities among those participating in
them. While previous literature has used the term 'meaningful activity' and promoted
participation in these types of activities, what makes activities meaningful for RACF residents
with dementia was unclear.
Research design
This study was undertaken in three phases. Phase 1 was a literature-based concept
analysis to review how the term ‘meaningful activity’ was used and understood in the existing
literature. Phase 2 was a secondary quantitative analysis of activity-related data collected from
a national study of QoL of RACF residents with dementia (AusQoL study). The focus of the
analysis was to assess the QoL of RACF residents with dementia as measured by activity
engagement and affect and to explore the RACF and resident characteristics associated with
these aspects of resident QoL. The Phase 2 analysis was followed by Phase 3, a qualitative
study using interviews and focus group interviews to further explore the concept of ‘meaningful
activity’ from the perspectives of RACF residents with dementia, their family members and
RACF staff.
Findings
Phase 1
A search of the existing literature identified 29 relevant papers concerned with and
explicitly using the term ‘meaningful activity’. Synthesis and analysis of the findings and study
conclusions from these papers revealed five key attributes of ‘meaningful activity’: enjoyable;
suited to the skills, abilities and preferences of the individual; related to a personally relevant
goal; engaging; and related to an aspect of the individual’s identity. There are a range of
individual and opportunity factors that influence participation in ‘meaningful activity’. These
factors, such as adequate physical and cognitive abilities and the availability of activity
opportunities and relevant resources, are mediated by adaptation and enablement. While the
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ iii
studies included in this review were predominantly qualitative and did not involve a
quantitative evaluation of the impact of participation in ‘meaningful activity’, qualitative
reports suggest that participation in these activities have a range of positive consequences such
as increased overall activity participation and improved health and QoL.
Phase 2
Data about 396 residents living in 53 Australian RACFs who participated in the AusQoL
study was used in the Phase 2 analysis. On average, residents had the opportunity to participate
in eight of the 15 activities specified in the Activity and Affect Indicators of QoL measure.
Residents had a mean frequency of activity participation score of ten out of 30 and enjoyed
most activities they participated in. Positive affect was observed by staff more often than
negative affect. Multivariate analyses identified the characteristics associated with resident
activity opportunities and frequency of participation as well as resident positive and negative
affect. None of the RACF or resident demographic characteristics were significant variables in
the final regression models related to activity or affect. More severe cognitive impairment and
depression, poorer nutritional status, more frequent incontinence and aggressive agitated
behaviour and not exhibiting non-aggressive verbal behaviour were associated with fewer
activity opportunities. Cognitive impairment, pain and depression had negative effects on the
frequency of activity participation while non-aggressive verbal behaviour had a positive effect.
No depression and less frequent aggressive agitated behaviour were associated with more
frequent positive affect. More severe depression, exhibiting aggressive verbal behaviour and
more frequent agitated behaviour were associated with more frequent negative affect.
Phase 3
The findings of Phase 3 further refined the findings from the Phase 1 literature-based
concept analysis as they relate specifically to the lives of people living with dementia in
RACFs. The findings of this study revealed that the meaning of an activity is highly subjective.
The key attributes that make an activity meaningful include being enjoyable, engaging and
social, suited to the person’s abilities and interests and related to their identity and goals for
participating in activities. Residents need suitable activity opportunities, an enabling
environment and support from family and staff to participate in activities, including
‘meaningful activities’. Participation in ‘meaningful activities’ is valued in this context, with
perceived benefits for the physical and emotional health and wellbeing of residents.
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ iv
Conclusion
This study has addressed important gaps in understanding QoL and ‘meaningful activity’
for RACF residents with dementia. These findings have identified groups of residents who may
have fewer activity opportunities and less frequent participation in activities and also
contributed to the development of a common understanding of 'meaningful activity', with
implications for the care of RACF residents with dementia. The knowledge gained from this
study has the potential to improve the daily lives of people living with dementia in RACFs.
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ v
Table of Contents
Keywords .................................................................................................................................. i
Abstract .................................................................................................................................... ii
Table of Contents ......................................................................................................................v
List of Figures ........................................................................................................................ vii
List of Tables ........................................................................................................................ viii
List of Abbreviations .............................................................................................................. xi
Prologue ................................................................................................................................. xii
Statement of Original Authorship ......................................................................................... xiii
Acknowledgements ............................................................................................................... xiv
4.5 Model of ‘meaningful activity’ in older adults with dementia .....................................84
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data ..........................................................................................................87
7.1 Research question 1- What are the fundamental attributes of a ‘meaningful activity’ for people with dementia? ......................................................................................................................232
7.2 Research question 2- What is the QoL of people living with dementia in RACFs indicated by a) engagement in activity and b) apparent emotions? ...............................................................237
7.3 Research question 3- What is the perceived role of activity, including ‘meaningful activity’ in the QoL of people living with dementia in RACFs?.............................................................238
7.4 Research question 4- What factors enable or inhibit access to, and engagement in, activities, including ‘meaningful activities’? ........................................................................................239
7.5 Research question 5- What strategies are used by staff to a) identify activities meaningful to individual residents and b) create opportunities for resident engagement in these activities?249
Appendix 6 Resident clinical record review ......................................................................356
Appendix 7 Resident quantitative measures completed by staff informant ......................367
Appendix 8 Family member demographic questions ........................................................379
Appendix 9 Staff focus group demographic questions ......................................................381
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ vii
List of Figures
Figure 3.1. Study overview ........................................................................................40
Figure 3.2. Data collected as part of the AusQoL study with the focus of the current analysis within the red box ...........................................................................46
Figure 3.3. Activities included in the Activity and Affect Indicators of Quality of Life (AAIQOL) measure ......................................................................................57
Figure 4.2. Model of ‘meaningful activity’ in older adults with dementia ................85
Figure 5.1. Number of activities participated in by residents over the previous two weeks (n=394) ............................................................................................100
Figure 5.2. Proportion of residents who participated in activities between one and three times per week over the previous two weeks (n=396) ...............................101
Figure 5.3. Proportion of residents who participated in activities more than three times per week over the previous two weeks (n=396) .........................................101
Figure 6.1. Model of ‘meaningful activity’ for RACF residents with dementia .....230
Figure 8.1. Model of ‘meaningful activity’ for RACF residents living with dementia ....................................................................................................................255
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ viii
List of Tables
Table 3.1. Overview of the research plan ...................................................................41
Table 3.2. Quantitative measures from the AusQoL study used in this secondary analysis .........................................................................................................51
Table 4.1. ‘Meaningful activity’ definitions and examples from papers included in the concept analysis ............................................................................................77
Table 5.1. Demographic, staffing and environmental characteristics of RACFs (n=53) ......................................................................................................................88
Table 5.2. Person-centred approach to activity programs ..........................................89
Table 5.3. Resident involvement in decision making .................................................90
Table 5.4. Frequency of activities that take place at the RACF .................................91
Table 5.6. Demographic characteristics of residents removed from the dataset due to missing activity opportunity data (n=50) and difference compared to included residents (n=396) ..........................................................................................93
Table 5.7. Resident health and care characteristics ....................................................94
Table 5.8. Dementia related behaviour changes among participating residents (categorical variables) ...................................................................................96
Table 5.9. Dementia related behaviour changes among participating residents (continuous variables) ...................................................................................97
Table 5.10. Activity indicators of quality of life (AAIQOL)- Individual items .........99
Table 5.11. Activity indicators of quality of life (AAIQOL)- Scale scores .............100
Table 5.12. Characteristics of residents with zero reported activity opportunities (n=7) ....................................................................................................................103
Table 5.13. Affect indicators of quality of life (AAIQOL)- Scale scores ................104
Table 5.14. Resident activity by RACF characteristics ............................................105
Table 5.15. Correlations between resident activity and RACF characteristics ........107
Table 5.16. Resident activity by RACF activity planning ........................................109
Table 5.17. Resident activity by resident involvement in activity planning ............113
Table 5.18. Resident activity by RACF activity provision .......................................117
Table 5.19. Resident affect by RACF characteristics ...............................................123
Table 5.20. Correlations between resident affect and RACF characteristics ...........124
Table 5.21. Resident affect by RACF activity planning ...........................................125
Table 5.22. Resident affect by resident involvement in activity planning ...............127
Table 5.23. Resident affect by RACF activity provision..........................................130
Table 5.24. Resident activity by resident demographic characteristics ....................135
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ ix
Table 5.25. Resident activity by resident health and care characteristics ................139
Table 5.26. Resident activity by resident dementia related behaviour changes .......147
Table 5.27. Correlations between resident activity and resident dementia related behaviour changes (continuous variables) ..................................................148
Table 5.28. Resident affect by resident demographic characteristics .......................149
Table 5.29. Resident affect by resident health and care characteristics ...................151
Table 5.30. Resident affect by resident dementia related behaviour changes ..........156
Table 5.31. Correlations between resident affect and resident dementia related behaviour changes (continuous variables) ..................................................157
Table 5.32. Correlation between AAIQOL summary scores ...................................158
Table 5.33. Activity opportunity regression models 1 and 2 ....................................159
Table 5.34. Activity opportunity regression models 3 and 4 ....................................160
Table 5.35. Activity opportunity regression models 5 and 6 ....................................161
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ x
Table 6.4. Resident health and care characteristics (n=19) ......................................197
Table 6.5. Dementia related behaviour changes among residents (n=19) ................199
Table 6.6. Dementia related behaviour changes among residents (continuous variables) ....................................................................................................................199
Table 6.7. Activity indicators of quality of life (AAIQOL)- Individual items (n=19).. ....................................................................................................................201
Table 6.8. Activity and affect indicators of quality of life (AAIQOL)- Scale scores (n=19).. .......................................................................................................202
Table 6.9. Family member demographic characteristics (n=17) ..............................203
Table 6.11. Themes and subthemes of ‘meaningful activity’ defining attributes, antecedents and consequences ....................................................................207
Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ xi
List of Abbreviations
AAIQOL Activity and Affect Indicators of Quality of Life
Identify the fundamental attributes, antecedents, consequences and empirical referents of ‘meaningful activity’ as they relate to older adults with dementia Propose a model of ‘meaningful
activity’ for older adults living with dementia
Phase 3- Qualitative study Explore perceptions of
‘meaningful activity’ as reported by RACF residents with dementia, family members and RACF staff Compare findings with model
of ‘meaningful activity’ developed in Phase 1
Phase 2- Secondary quantitative analysis of Australian QoL study
data Explore resident QoL as
represented by participation in activity and apparent emotions
Explore individual resident and RACF-level characteristics potentially associated with activity opportunities, the frequency of activity participation and resident affect
Cha
pter
3: R
esea
rch
Des
ign
41
Tabl
e 3.
1. O
verv
iew
of t
he re
sear
ch p
lan
Res
earc
h G
aps
Res
earc
h Q
uest
ions
St
udy
Phas
es
The
term
‘mea
ning
ful a
ctiv
ity’ i
s fr
eque
ntly
us
ed in
the
liter
atur
e bu
t the
con
cept
is n
ot
wel
l def
ined
or c
onsi
sten
tly u
nder
stoo
d.
1. W
hat
are
the
fund
amen
tal
attri
bute
s of
a ‘
mea
ning
ful
activ
ity’
for
peop
le
with
dem
entia
?
Phas
e 1-
Lite
ratu
re-b
ased
con
cept
ana
lysi
s Ph
ase
3 - Q
ualit
ativ
e st
udy
The
lack
of
larg
e sc
ale,
com
preh
ensi
ve a
nd
gene
ralis
able
stud
ies o
f QoL
of p
eopl
e liv
ing
with
dem
entia
in R
AC
Fs li
mits
kno
wle
dge o
f le
vels
of
QoL
and
fac
tors
ass
ocia
ted
with
Q
oL.
2. W
hat i
s the
QoL
of p
eopl
e liv
ing
with
de
men
tia i
n R
AC
Fs i
ndic
ated
by
a)
enga
gem
ent i
n ac
tivity
and
b) a
ppar
ent
emot
ions
(pos
itive
or n
egat
ive
affe
ct)?
Phas
e 2-
Sec
onda
ry q
uant
itativ
e an
alys
is o
f Aus
QoL
st
udy
d ata
(de
scrip
tive
anal
ysis
of
data
col
lect
ed
usin
g th
e A
ctiv
ity a
nd A
ffect
Indi
cato
rs o
f Qua
lity
of
Life
(AA
IQO
L) m
easu
re)
Res
earc
h ex
plor
ing
the
role
of
‘mea
ning
ful
activ
ity’ i
n Q
oL fo
r old
er a
dults
has
focu
sed
on p
eopl
e w
ithou
t de
men
tia a
nd/o
r in
the
co
mm
unity
setti
ng.
3. W
hat i
s the
per
ceiv
ed ro
le o
f act
ivity
, in
clud
ing
‘mea
ning
ful
activ
ity’,
in t
he
QoL
of
peop
le li
ving
with
dem
entia
in
RA
CFs
?
Phas
e 2-
Sec
onda
ry q
uant
itativ
e an
alys
is o
f Aus
QoL
st
udy
data
(bi
varia
te a
nd m
ultiv
aria
te a
naly
ses
of
asso
ciat
ions
be
twee
n R
AC
F an
d re
side
nt
char
acte
ristic
s and
AA
IQO
L su
mm
ary
scor
es)
Phas
e 3-
Qua
litat
ive
stud
y A
mor
e co
mpr
ehen
sive
und
erst
andi
ng o
f the
fa
ctor
s in
fluen
cing
res
iden
t en
gage
men
t in
‘m
eani
ngfu
l ac
tivity
’ in
RA
CFs
is
need
ed,
parti
cula
rly in
Aus
tralia
n R
AC
Fs.
4. W
hat f
acto
rs e
nabl
e or
inhi
bit a
cces
s to
, an
d en
gage
men
t in
, ac
tiviti
es,
incl
udin
g ‘m
eani
ngfu
l act
i viti
es’?
Phas
e 1-
Lite
ratu
re-b
ased
con
cept
ana
lysi
s Ph
ase
2 - S
econ
dary
qua
ntita
tive
anal
ysis
of A
usQ
oL
stud
y da
ta (
biva
riate
and
mul
tivar
iate
ana
lyse
s of
as
soci
atio
ns
betw
een
RA
CF
and
resi
dent
ch
arac
teris
tics a
nd A
AIQ
OL
sum
mar
y sc
ores
) Ph
ase
3- Q
ualit
ativ
e st
udy
The
liter
atur
e su
gges
ts th
at R
AC
F st
aff l
ack
the
com
pete
nce
to s
uppo
rt re
side
nts
with
de
men
tia to
eng
age
in ‘m
eani
ngfu
l act
ivity
’, bu
t litt
le is
kno
wn
abou
t wha
t stra
tegi
es th
ey
curr
ently
use
.
5. W
hat s
trate
gies
are
use
d by
staf
f to
a)
iden
tify
activ
ities
m
eani
ngfu
l to
in
divi
dual
re
side
nts
and
b)
crea
te
oppo
rtuni
ties f
or re
side
nt en
gage
men
t in
thes
e ac
tiviti
es?
Phas
e 3-
Qua
litat
ive
stud
y
Chapter 3: Research Design 42
3.2 PHASE 1- LITERATURE-BASED CONCEPT ANALYSIS
This phase of the research addressed the following research question:
1. What are the fundamental attributes of a ‘meaningful activity’ for people with
dementia?
‘Meaningful activity’ is a term that is commonly used in the literature but it is not
consistently defined or used (Conti, Voelkl, & McGuire, 2008; Eakman, 2011; Mansbach et
al., 2017). It is also unclear how ‘meaningful activity’ differs from other related concepts such
as ‘engagement’ and ‘leisure activity’. In the absence of an existing formal or systematic
analysis of ‘meaningful activity’, and the lack of a universal definition of the concept, a concept
analysis was undertaken to identify critical concept attributes and aid conceptual
understanding.
This work has been published. The published paper can be found in Appendix 1.
3.2.1 Role of concepts in the development of theory
Concepts can be seen as “a mental image of a phenomenon, an idea or a construct in the
mind about a thing or an action” (Walker & Avant, 2011; p59). Through concepts, experiences
can be classified in clear and meaningful ways and communicated to others. Concepts can be
seen as the basic building blocks of theories (Schwartz-Barcott & Kim, 1986; Walker & Avant,
2011) and all theories are made up of a set of concepts (Bousso, Poles, & de Almeida Lopes
Monteiro da Cruz, 2014). Concepts that are ambiguous and not well defined are barriers to the
development of knowledge (Rodgers, 2000). Therefore, the analysis and development of
concepts is important for the understanding and development of theories that are clear and
relevant to health care practice (Bousso et al., 2014; Schwartz-Barcott & Kim, 1986).
3.2.2 Concept analysis method
The concept ‘meaningful activity’ was analysed using the eight-step approach described
by Walker and Avant: 1) select concept; 2) determine purpose; 3) identify uses; 4) define
attributes; 5) identify model case; 6) develop additional (borderline, related and contrary) cases;
7) identify antecedents and consequences; and 8) define empirical referents (Walker & Avant,
2011). The concept analysis process is iterative and these eight steps are not necessarily
Chapter 3: Research Design 43
sequential (Walker & Avant, 2011). Concept analysis is a theoretical assessment of the concept
based on the existing literature (Bousso et al., 2014). The intention is to draw on a broad range
of literature from various health discipline fields and related fields, and across different
population groups, but with a focus on a specific key concept. The outcomes of this process
include a list of defining attributes, model and additional cases, antecedents, consequences and
empirical referents for the concept. The defining attributes identified through a concept analysis
can be used to define the concept and the antecedents and consequences can be linked to the
attributes to suggest a conceptual model (O'Shea, Timmons, O'Shea, Fox, & Irving, 2019;
Thanakwang & Isaramalai, 2013; Windle, 2010). The purpose of this concept analysis (step 2)
was to propose a definition and conceptual model of ‘meaningful activity’.
3.2.3 Search strategy and inclusion criteria
The concept analysis was based on a broad review of the existing literature relating to
the concept of ‘meaningful activity’ (step 1). An expert health librarian was consulted when
developing this search strategy. Multiple databases (Scopus, MEDLINE, CINAHL, PubMed,
Academic Search Elite and Web of Science) were searched using the term ‘meaningful activity’
with literature related to people with and without dementia included, providing a broad
evidence base for the analysis. The search strategy was limited to using the search terms
‘meaningful activity’ and ‘meaningful activities’ as the purpose was to understand how the
specific term is currently understood and used in the literature (step 3). Related terms such as
individualised, tailored, preferred or purposeful activities were not included in the search as the
search focused only on ‘meaningful activity’. In order to make a useful contribution to
knowledge development, a concept analysis needs to maintain a specific focus (Walker &
Avant, 2011) and this approach has been used by previously published concept analyses
>3 7 (25.9) ^categories are not mutually exclusive (data collected from separate questions)
5.1.3 Resident health and care characteristics
Data was also collected about a range of health characteristics of the residents and the
care they received (Table 5.7). Over half of the participating residents had moderate or severe
cognitive impairment as assessed by the Mini-Mental State Examination (MMSE). An
assessment of the nutritional status of participating residents using the Mini Nutritional
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 94
Assessment Short Form (MNA-SF) revealed that most were either malnourished or at risk of
malnutrition. Using the Pain Assessment in Advanced Dementia (PAINAD), few residents had
observed pain.
According to the Aged Care Funding Instrument (ACFI), participating residents had a
high level of care needs (Table 5.7). At least three-quarters of residents were classified in the
two highest level of care categories in relation to eating, mobility, personal hygiene, toileting
and continence. Just over two-thirds of participants were classified within the two highest
categories for assistance with medication administration.
Table 5.7. Resident health and care characteristics
Variable n (%)
Cognitive impairment (n=364)
None/Mild 37 (10.2)
Moderate 136 (37.4)
Severe 67 (18.4)
Unable to complete measure 124 (34.1)
Nutritional status (n=391)
Normal 42 (10.7)
At risk of malnutrition 250 (63.9)
Malnourished 99 (25.3)
Observed pain (n=345)
None 284 (82.3)
Mild 46 (13.3)
Moderate/severe 15 (4.3)
ACFI 1 Eating (n=389)
A- Independent in readiness to eat and eating 21 (5.4)
B- Supervision required for readiness to eat and/or eating 79 (20.3)
C- Physical assistance required for readiness to eat or eating 194 (49.9)
D- Physical assistance required for readiness to eat and eating 95 (24.4)
ACFI 2 Mobility (n=389)
A- Independent in transfers and locomotion 20 (5.1)
B- Supervision or physical assistance required for transfers or locomotion
31 (8.0)
C- Supervision required for transfers and locomotion or supervision for one care need and physical assistance for the other care need
163 (41.9)
D- Physical assistance for transfers and locomotion or mechanical lifting equipment required for transfers
175 (45.0)
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 95
Variable n (%)
ACFI 3 Personal hygiene (n=387)
A- Independent in dressing, washing and grooming 1 (0.3)
B- Supervision required for dressing, washing or grooming 24 (6.2)
C- Physical assistance required for dressing, washing or grooming
40 (10.3)
D- Physical assistance required for dressing, washing and grooming
322 (83.2)
ACFI 4 Toileting (n=389)
A- Independent in use of toilet and toilet completion 16 (4.1)
B- Supervision required for use of toilet and/or toilet completion
68 (17.5)
C- Physical assistance required for use of toilet or toilet completion
62 (15.9)
D- Physical assistance required for use of toilet and toilet completion
243 (62.5)
ACFI 5 Continence (n=388)
A- No urinary or faecal incontinence or self-manages continence devices
54 (13.9)
B- Incontinent of urine ≤once per day or incontinent of faeces once or twice per week
11 (2.8)
C- 2-3 episodes per day of urinary incontinence or passing of urine during scheduled toileting or 3-4 episodes per week of faecal incontinence or passing faeces during scheduled toileting
28 (7.2)
D- >3 episodes per day urinary incontinence or passing of urine during scheduled toileting or >4 episodes per week of faecal incontinence or passing of faeces during scheduled toileting
295 (76.0)
ACFI 11 Medication (n=390)
A- No medication or self-managed medication 1 (0.3)
B- Application of patches at least weekly, but less frequently than daily or needs assistance for <6 minutes per 24 hour period with daily medications
115 (29.5)
C- Needs assistance for between 6-11 minutes per 24 hour period with daily medications
133 (34.1)
D- Needs >11 minutes of assistance with medication per day or daily administration of subcutaneous, intramuscular or intravenous drug
141 (36.2)
ACFI 12 Complex health care (n=393)
A- No procedures (score of 0) 131 (33.3)
B- score of 1-4 68 (17.3)
C- score of 5-9 151 (38.4)
D- Multiple complex health procedures (score of 10 or more) 43 (10.9)
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 96
5.1.4 Dementia related behaviour changes among residents
Data was collected on a range of dementia related behaviour changes based on staff
observations and report. Using the Collateral Source Geriatric Depression Scale (CS-GDS),
depression was common in participating residents with nearly three-quarters assessed as having
depression, including over a quarter with severe depression (Table 5.8). Based on data reported
using the Verbal Behaviour Scale (VBS), half of the residents exhibited some signs of verbal
behaviours. Non-aggressive verbal behaviours were observed in more residents than aggressive
verbal behaviours.
Table 5.8. Dementia related behaviour changes among participating residents (categorical
variables)
Variable n (%)
Staff assessed depression
(n=355)
None 105 (29.6)
Mild 150 (42.3)
Severe 100 (28.2)
Verbal behaviour- overall
(n=368)
None exhibited 184 (50.0)
Some exhibited 184 (50.0)
Verbal behaviour- aggressive
(n=380)
None exhibited 273 (71.8)
Some exhibited 107 (28.2)
Verbal behaviour- non-aggressive
(n=373)
None exhibited 229 (61.4)
Some exhibited 144 (38.6)
The mean frequency for overall agitation, reported by staff using the Cohen Mansfield
Agitation Inventory- Long Form (CMAI), was 53 of a possible total of 203 (Table 5.9). The
mean frequency for the agitation subscales was 14 of a possible 42 for physically non-
aggressive behaviour and 12 of a possible 35 for verbally agitated behaviour. The frequency of
aggressive agitated behaviours was skewed with most residents infrequently exhibiting these
behaviours. The median score for aggressive agitated behaviour was 11 of a possible score of
63. Using the Revised Algase Wandering Scale- Long Term Care Version (RAWS-LTC), the
mean intensity of wandering behaviour score for ambulant participating residents was 40 of a
possible total score of 80. Data on the intensity of wandering behaviour was collected from a
smaller sample as it was only measured in ambulant residents.
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 97
Table 5.9. Dementia related behaviour changes among participating residents (continuous
Positive affect differed for residents with varying degrees of cognitive impairment (Table
5.29). Residents with severe cognitive impairment had significantly lower positive affect than
residents with mild cognitive impairment. Nutritional status and pain were significantly
associated with positive and negative affect. Malnourished residents had significantly lower
positive affect than all other residents and significantly higher negative affect than residents of
normal nutritional status. Residents with no observed pain had significantly higher positive
affect than those with mild pain while residents with moderate or severe pain had significantly
higher negative affect than residents with less pain.
There were a few differences in affect based on the level of resident care as assessed by
the ACFI (Table 5.29). Residents who required an intermediate level of assistance with eating
had the highest observed positive affect which was significantly higher than residents who
required physical assistance. The level of assistance required for toileting was also associated
with differences in positive affect as residents who required only supervision had significantly
higher positive affect than residents who required physical assistance. Continence was the only
area of care found to be associated with negative affect. Residents who had no incontinence or
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 151
self-managed continence devices had significantly lower negative affect than residents with the
most frequent incontinence. No significant differences were found in positive or negative affect
based on the level of assistance required with mobility, personal hygiene or medication or the
extent of complex health care required.
Table 5.29. Resident affect by resident health and care characteristics
Characteristics Positive affect Negative affect
Mean (SD) Difference Mean (SD) Difference
Cognitive impairment F(3, 354)=6.950
p<0.001*
F(3, 347)=1.273
p=0.284
Unable to complete measure
11.17 (3.06)
Severe p=0.982
Moderate p=0.013*
None/Mild p=0.001*
8.31 (3.41) Severe p=0.989
Moderate p=0.566
None/Mild p=0.559
Severe 11.33 (3.63)
Moderate p=0.134
None/Mild p=0.006*
8.48 (3.42) Moderate p=0.492
None/Mild p=0.477
Moderate 12.29 (2.60)
None/Mild p=0.227 7.76 (3.43) None/Mild p=0.967
None/Mild 13.33 (2.11)
7.46 (3.00)
Nutritional status F(2, 380)=6.892
p=0.001*
F(2, 373)=4.498
p=0.012*
Malnourished 10.81 (3.29)
Risk p=0.001*
Normal p=0.027*
8.82 (3.67) Risk p=0.073
Normal p=0.013*
At risk of malnutrition 12.09 (2.90)
Normal p=0.949 7.92 (3.32) Normal p=0.268
Normal 12.24 (2.55)
7.05 (2.90)
Observed pain F(2, 336)=5.617
p=0.004*
F(2, 331)=6.717
p=0.001*
None 12.03 (2.90)
Mild p=0.020*
Mod/sev p=0.072
7.92 (3.30) Mild p=0.875
Mod/sev p=0.001*
Mild 10.74 (3.40)
Mod/sev p=0.834 7.65 (3.37) Mod/sev p=0.002*
Moderate/severe 10.21 (5.60)
11.14 (2.82)
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 152
Characteristics Positive affect Negative affect
Mean (SD) Difference Mean (SD) Difference
ACFI 1 Eating F(3, 377)=3.516
p=0.015*
F(3, 370)=0.523
p=0.667
A- Independent in readiness to eat and eating
11.29 (3.18)
B p=0.789
C p=0.553
D p=0.979
7.67 (3.15) B p=0.992
C p=0.982
D p=0.797
B- Supervision required for readiness to eat and/or eating
11.96 (2.87)
C p=0.945
D p=0.155
7.91 (3.38) C p=0.999
D p=0.769
C- Physical assistance required for readiness to eat or eating
12.18 (2.82)
D p=0.011* 7.96 (3.56) D p=0.723
D- Physical assistance required for readiness to eat and eating
11.00 (3.29)
8.43 (3.18)
ACFI 2 Mobility F(3, 377)=1.437
p=0.232
F(3, 370)=0.761
p=0.516
A- Independent in transfers and locomotion
11.45 (2.98)
B p=0.739
C p=0.810
D p=1.000
7.55 (3.03) B p=0.871
C p=0.992
D p=0.808
B- Supervision or physical assistance required for transfers or locomotion
12.32 (2.60)
C p=0.976
D p=0.497
8.30 (3.61) C p=0.867
D p=1.000
C- Supervision required for transfers and locomotion or supervision for one care need and physical assistance for the other care need
12.08 (2.95)
D p=0.296 7.78 (3.24) D p=0.562
D- Physical assistance for transfers and locomotion or mechanical lifting equipment required for transfers
11.50 (3.08)
8.27 (3.55)
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 153
Characteristics Positive affect Negative affect
Mean (SD) Difference Mean (SD) Difference
ACFI 3 Personal hygiene F(3, 375)=0.494
p=0.687
F(3, 368)=2.148
p=0.094
A- Independent in dressing, washing and grooming
14.00 (n=1)
6.00 (n=1)
B- Supervision required for dressing, washing or grooming
12.38 (2.87)
7.88 (3.27)
C- Physical assistance required for dressing, washing or grooming
11.68 (3.00)
6.79 (2.74)
D- Physical assistance required for dressing, washing and grooming
11.79 (3.01)
8.21 (3.47)
ACFI 4 Toileting F(3, 377)=4.065
p=0.007*
F(3, 370)=1.871
p=0.134
A-Independent in use of toilet and toilet completion
10.94 (2.17)
B p=0.089
C p=0.637
D p=0.862
6.31 (2.47) B p=0.449
C p=0.287
D p=0.124
B- Supervision required for use of toilet and/or toilet completion
12.87 (2.59)
C p=0.262
D p=0.006*
7.71 (3.26) C p=0.964
D p=0.676
C- Physical assistance required for use of toilet or toilet completion
11.92 (2.98)
D p=0.801 8.00 (3.30) D p=0.960
D- Physical assistance required for use of toilet and toilet completion
11.54 (3.09)
8.24 (3.49)
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 154
Characteristics Positive affect Negative affect
Mean (SD) Difference Mean (SD) Difference
ACFI 5 Continence F(3, 376)=1.811
p=0.145
F(3, 369)=3.273
p=0.021*
A- No urinary or faecal incontinence or self-manages continence devices
12.28 (2.92)
B p=0.797
C p=1.000
D p=0.458
7.02 (3.15) B p=0.891
C p=1.000
D p=0.048*
B- Incontinent of urine ≤once per day or incontinent of faeces once or twice per week
13.18 (2.04)
C p=0.834
D p=0.328
7.82 (3.06) C p=0.893
D p=0.960
C- 2-3 episodes per day of urinary incontinence or passing of urine during scheduled toileting or 3-4 episodes per week of faecal incontinence or passing faeces during scheduled toileting
12.29 (2.94)
D p=0.681 6.96 (3.19) D p=0.174
D- >3 episodes per day urinary incontinence or passing of urine during scheduled toileting or >4 episodes per week of faecal incontinence or passing of faeces during scheduled toileting
11.63 (3.03)
8.33 (3.44)
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 155
Characteristics Positive affect Negative affect
Mean (SD) Difference Mean (SD) Difference
ACFI 11 Medication F(3, 378)=0.468
p=0.704
F(3, 371)=1.086
p=0.355
A- No medication or self-managed medication
15.00 (n=1)
7.00 (n=1)
B- Application of patches at least weekly, but less than daily or needs assistance for <6 minutes per 24 hour period with daily medications
11.93 (3.10)
7.57 (3.31)
C- Needs assistance between 6-11 minutes per 24 hour period with daily medications
11.77 (2.91)
8.33 (3.46)
D- Needs >11 minutes of assistance with medication per day or daily administration of subcutaneous, intramuscular or intravenous drug
11.74 (2.99)
8.15 (3.41)
ACFI 12 Complex health care F(3, 381)=0.961
p=0.411
F(3, 374)=1.027
p=0.380
A- No procedures (score of 0)
12.09 (3.07)
B p=0.503
C p=0.569
D p=1.000
7.89 (3.19) B p=0.984
C p=0.577
D p=0.990
B- score of 1-4 11.45 (3.06)
C p=0.981
D p=0.745
7.70 (3.29) C p=0.499
D p=1.000
C- score of 5-9 11.62 (3.09)
D p=0.846 8.42 (3.61) D p=0.638
D- Multiple complex health procedures (score of 10 or more)
Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 185
Table 5.49. Negative affect regression model 2
Model 2
B SE B β t p
(Constant) 8.775 .659 13.306 <.001 Age 80-90 vs <80 -.945 .582 -.137 -1.624 .105
>90 vs <80 -1.261 .649 -.168 -1.944 .053 Gender- female vs male .480 .478 .056 1.005 .315 Marital Status- other vs married/ de facto -.233 .482 -.029 -.482 .630 Language- other vs English .389 .650 .032 .599 .550 Length of stay Medium vs shortest -.163 .478 -.024 -.341 .734
Chapter 6: Phase 3 Findings- Qualitative study 196
To be eligible to participate in the study, residents were required to have mild or moderate
dementia, as indicated by a score between 50 and 77 on the Modified Mini-Mental State
examination (3MS). Using the 3MS, a lower score reflects more severe cognitive impairment.
The mean 3MS score of participating residents was 59.4 (SD=9.6, skewness=0.764) with
scores across the inclusion range from 50 to 77.
Data was also collected about the health characteristics of residents and the level and
types of care they received (Table 6.4). Almost half of the residents were either at risk of
malnutrition or malnourished while most residents did not exhibit observable signs of pain.
RACF-held records of assessments using the Aged Care Funding Instrument (ACFI) were used
to indicate the care needs of residents. Residents receive a rating between A and D for each
care need in the ACFI. A rating of A indicates independence with supervision and physical
assistance increasingly required up to a rating of D indicating the highest level of physical
assistance. According to the ACFI, almost all participating residents required assistance with
eating, mobility, personal hygiene, toileting and medication with only 5-10% independent in
each of these aspects of care. Over three-quarters required assistance with continence.
Chapter 6: Phase 3 Findings- Qualitative study 197
Table 6.4. Resident health and care characteristics (n=19)
Variable n %
Nutritional status
Normal 10 52.6
At risk of malnutrition 7 36.8
Malnourished 2 10.5
Observed pain None 16 84.2
Mild 3 15.8
Moderate/severe 0 0.0
ACFI 1 Eating A- Independent in readiness to eat and eating 1 5.3
B- Supervision required for readiness to eat and/or eating 5 26.3
C- Physical assistance required for readiness to eat or eating 12 63.2
D- Physical assistance required for readiness to eat and eating 1 5.3
ACFI 2 Mobility
A- Independent in transfers and locomotion 2 10.5
B- Supervision or physical assistance required for transfers or locomotion
1 5.3
C- Supervision required for transfers and locomotion or supervision for one care need and physical assistance for the other care need
13 68.4
D- Physical assistance for transfers and locomotion or mechanical lifting equipment required for transfers
3 15.8
ACFI 3 Personal hygiene
A- Independent in dressing, washing and grooming 1 5.3
B- Supervision required for dressing, washing or grooming 1 5.3
C- Physical assistance required for dressing, washing or grooming
3 15.8
D- Physical assistance required for dressing, washing and grooming
14 73.7
ACFI 4 Toileting
A- Independent in use of toilet and toilet completion 1 5.3
B- Supervision required for use of toilet and/or toilet completion
5 26.3
C- Physical assistance required for use of toilet or toilet completion
2 10.5
D- Physical assistance required for use of toilet and toilet completion
11 57.9
Chapter 6: Phase 3 Findings- Qualitative study 198
Variable n %
ACFI 5 Continence
A- No urinary or faecal incontinence or self-manages continence devices
4 21.1
B- Incontinent of urine ≤once per day or incontinent of faeces once or twice per week
0 0.0
C- 2-3 episodes per day of urinary incontinence or passing of urine during scheduled toileting or 3-4 episodes per week of faecal incontinence or passing faeces during scheduled toileting
2 10.5
D- >3 episodes per day urinary incontinence or passing of urine during scheduled toileting or >4 episodes per week of faecal incontinence or passing faeces during scheduled toileting
13 68.4
ACFI 11 Medication
A- No medication or self-managed medication 1 5.3
B- Application of patches at least weekly, but less frequently than daily or needs assistance for <6 minutes per 24 hour period with daily medications
12 63.2
C- Needs assistance for between 6-11 minutes per 24 hour period with daily medications
6 31.6
D- Requires >11 minutes of assistance with medication/ day or daily administration of subcutaneous, intramuscular or intravenous drug
0 0.0
ACFI 12 Complex health care
A- No procedures (score of 0) 6 31.6
B- score of 1-4 1 5.3
C- score of 5-9 8 42.1
D- Multiple complex health procedures (score of 10 or more) 4 21.1
Staff reported on a range of dementia related behaviour changes observed in the residents.
Based on data reported using the Collateral Source Geriatric Depression Scale (CS-GDS) and
the Verbal Behaviour Scale (VBS), half of the residents had depression and exhibited verbal
behaviour (Table 6.5). Non-aggressive verbal behaviour was more common than aggressive
verbal behaviour. Based on staff report using the Cohen Mansfield Agitation Inventory
(CMAI), the mean frequency of overall agitation was 45 out of a maximum possible score of
203 (Table 6.6). Participating residents had a mean wandering behaviour score of 36 out of a
maximum possible score of 80 using the Revised Algase Wandering Scale- Long Term Care
Version (RAWS).
Chapter 6: Phase 3 Findings- Qualitative study 199
Table 6.5. Dementia related behaviour changes among residents (n=19)
Variable n %
Staff-assessed depression None 9 47.4
Mild 6 31.6
Severe 4 21.1
Verbal behaviour
Overall None exhibited 9 47.4
Some exhibited 10 52.6
Aggressive None exhibited 15 78.9
Some exhibited 4 21.1
Non-aggressive None exhibited 9 47.4
Some exhibited 10 52.6
Table 6.6. Dementia related behaviour changes among residents (continuous variables)
7.5 RESEARCH QUESTION 5- WHAT STRATEGIES ARE USED BY STAFF TO A) IDENTIFY ACTIVITIES MEANINGFUL TO INDIVIDUAL RESIDENTS AND B) CREATE OPPORTUNITIES FOR RESIDENT ENGAGEMENT IN THESE ACTIVITIES?
The qualitative study provided insight into the strategies used by RACF staff to identify
‘meaningful activities’ and support residents to participate in these activities.
Many residents with dementia need support to enable them to participate in activities,
including ‘meaningful activities’ (Han et al., 2016b; Harmer & Orrell, 2008; Phinney et al.,
2007; Tak et al., 2015). Yet most residents interviewed did not perceive their physical or
cognitive impairments to be limiting their ability to participate in activities. As the residents
participating in this study did not have severe levels of cognitive impairment it may be that the
support for activity participation they were receiving was at a low and unobtrusive level. It is
also possible that the support provided to residents, such as to identify ‘meaningful activities’
and modify activities to suit each person’s abilities, made it easier for residents to participate
in activities, regardless of impairments. Support that reduces the difficulty of activity
participation for the person living with dementia can make the condition feel less intrusive and
Chapter 7: Discussion 250
limiting in their lives (Phinney, 2006). The support provided by family and staff is important
to reduce the impact of impairments and enable residents with dementia to participate in
‘meaningful activity’ and have a positive experience of that participation.
How an individual RACF structures the provision of activities influences the types of
support provided by staff for residents to participate in activities, including ‘meaningful
activities’. The organisation of RACF activities can be understood on a continuum. It ranges
from the traditional provision of timetabled activities and staff support for residents to
participate in those activities to a day-to-day approach where activities are initiated
spontaneously in response to resident interests and mood on that given day with no scheduled
activities (Richards et al., 2015). While all four RACFs participating in the qualitative study
had organised activity programs, staff discussed the need for flexibility in how activities were
delivered and in responding to residents’ interests and needs. Flexibility in activity provision
and support has been proposed as an important strategy when using participation in
‘meaningful activity’ to prevent or address dementia related behaviour changes (Backhouse et
al., 2016; Foley, Sudha, Sloane, & Gold, 2003). However, staff in the current study, as well as
in previous research (Backhouse et al., 2016), focused on flexibility in relation to changes in
resident interests and support needs rather than to address specific behaviours. The flexible
approach to activities may still be within the structure of pre-organised activities, for example,
facilitating a reminiscence group and allowing the natural conversations of the participating
residents to dictate the topic of discussion. Flexibility could also involve initiating and
supporting activities for individual residents separate from the activity program. The flexible
approach may be more suitable for residents with moderate to severe dementia and for activities
to address dementia related behaviour changes (Backhouse et al., 2016; Richards et al., 2015).
Declining memory and language skills can limit a resident’s ability to verbalise
preferences (Mesman, Buchanan, Husfeldt, & Berg, 2011). While family members in the
current study felt that difficulties verbalising preferences made it difficult to know whether an
activity was meaningful, staff were confident that they had the experience to make that
assessment based on the resident’s body language and facial expressions. The staff
participating in this study had experience working with people with dementia, with two-thirds
reporting that they had worked in aged care for at least six years. The different perspectives of
family members and staff reflect findings of a recent study where family members of people
with dementia and activity staff were asked about whether the person with dementia liked a
range of activities (Cohen-Mansfield, Gavendo, et al., 2017). Staff reported knowing whether
Chapter 7: Discussion 251
the person liked the activity for more of the activities compared with reporting by family
members. This confidence to identify preferred activities may be influenced by staff spending
more time with the residents than family members in general as well as being with residents
during activity participation or seeing them involved. Family members participating in this
study spent a median of ten hours with the resident in the previous month. Family members
often have an understanding of the resident’s past activity preferences while RACF staff are
likely to be more familiar with current preferences (Van Haitsma et al., 2015). While RACF
staff who provide direct care for residents are recognised as valuable informants, consultation
with multiple people who know a resident, including family members, as well as residents
themselves will have the greatest benefit for understanding resident preferences and routines
(Molony, Kolanowski, Van Haitsma, & Rooney, 2018).
Staff learn from experience how to identify ‘meaningful activities’ for residents and read
responses from residents (Mondaca et al., 2019; Richards et al., 2015). Some strategies used
by staff where residents were unable to verbalise preferences include consulting family
members, trial and error, providing a range of varied activity options and making informed
guesses based on a resident’s gender or past experiences with similar residents (Han et al.,
2016b; Mesman et al., 2011). Staff in the current study also reported using these strategies for
identifying ‘meaningful activities’. While it is possible that these approaches may exclude
residents and disregard their abilities to make activity choices (Han et al., 2016b; Mesman et
al., 2011), staff in this study recognised that residents, even with severe dementia, were able to
make activity choices. While it required attention to detail to understand how each resident
expressed these preferences, staff did not frame it as a challenge but something their experience
working with people with dementia had equipped them to do.
7.6 SUMMARY
This chapter has discussed the key findings of this study, integrating the findings of the
three phases as they relate to each research question. It is clear from this study that activity
among RACF residents with dementia is an important indicator of QoL. Less frequent activity
participation among certain groups of residents, such as those with severe cognitive impairment
or depression, suggests QoL for these residents could be improved. Participation in activities,
especially those that are meaningful, is valued by residents themselves as well as their family
members and RACF staff. For RACF residents with dementia, ‘meaningful activities’ are
Chapter 7: Discussion 252
activities that are suited to the person’s unique abilities and interests, related to a personally
relevant goal and linked to an aspect of their identity. These attributes of ‘meaningful activity’
suggest that supporting residents to participate in these activities is one practical approach to
implementing person-centred care. ‘Meaningful activities’ are also enjoyable, engaging and
have a social aspect.
This study has identified a range of factors that enable or inhibit engagement of RACF
residents with dementia in activities, including ‘meaningful activities’. Activity opportunities
suited to each person are important. With impairments often limiting residents’ abilities to
initiate and maintain activity participation, the activity opportunities are often limited to those
organised by the RACF, using either an activity calendar or staff to facilitate activity
participation among residents. All three phases of this study revealed that RACF residents with
dementia need to be supported and enabled to participate in activities. An enabling environment
is one that is familiar to residents, allowing them to participate in activities safely and
comfortably. Support from family and staff is important to identify potentially ‘meaningful
activities’, initiate activity participation and adapt or modify activities to suit residents’ abilities
and interests. There may be gaps in support for resident activity participation, indicated by less
frequent activity participation among residents who may have higher care and support needs
such as those with more severe cognitive impairment and severe depression, or who prefer to
speak a language other than English. Providing additional support and consideration to these
residents may increase their activity participation and improve their QoL.
The following chapter will provide a conclusion including the strengths and limitations
of this study, implications for practice and areas for future research that have been identified.
Chapter 8: Conclusion 253
Chapter 8: Conclusion
This concluding chapter briefly recounts the main findings of the study. Following this,
the main implications for policy and practice and suggestions for future related research will
be considered.
Person-centred care is the dominant philosophy underpinning approaches to the care of
people with dementia (Brooker, 2004; Brownie & Nancarrow, 2013; Kitwood, 1997). From a
person-centred perspective it is important to consider what makes activities meaningful for
people with dementia in addition to their presence at, and participation in activities, meaningful
or otherwise. It is also valuable to understand the perceived conditions needed for participation
in ‘meaningful activities’ and the outcomes of participation. In previous literature, the term
‘meaningful activity’ has been used extensively in relation to people with dementia. However,
a comprehensive definition of what the concept of ‘meaningful activity’ means and what
factors contribute to an activity being meaningful to the person with dementia in RACFs had
not been explored.
The main findings of this study were used to develop a model of ‘meaningful activity’
specific to those living with dementia in RACFs (Figure 8.1). The model illustrates the key
characteristics of ‘meaningful activity’, linking these with the antecedents and consequences
of the concept. Specific activities that are meaningful are different for each person as they need
to be suited to individual interests and abilities, linked to an aspect of identity and allow the
person to pursue a personally relevant goal. ‘Meaningful activities’ also need to be engaging,
enjoyable and have a social aspect. As discussed in the previous chapter, the qualitative study
helped to further refine the defining attributes of ‘meaningful activity’ identified from the
existing literature as they relate to RACF residents with dementia. A significant contribution
that this study has made is the identification of the social aspect of activities as being a defining
attribute of ‘meaningful activities’, which was not evident in the existing literature. The
importance of the social aspect of activities in the context of RACF residents with dementia
highlights the challenges for residents to develop and maintain social connections.
In the RACF context, residents with dementia need activity opportunities, an enabling
environment and appropriate support to participate in ‘meaningful activities’. These
antecedents of ‘meaningful activity’ in the final model did not differ greatly from those
Chapter 8: Conclusion 254
identified in the existing literature but there was a stronger emphasis on the need for an enabling
environment and support from others, reflecting the cognitive and physical impairments
experienced by many residents. The findings of the AusQoL study both support and add to the
model, as explored in the previous chapter. For example, the importance of an enabling
environment and support for resident activity participation was reinforced by residents with
poorer health, more severe impairments and various dementia related behaviour changes
having fewer activity opportunities and less frequent activity participation. Participation in
‘meaningful activities’ was valued for facilitating opportunities to socialise, maintaining
function and health as well as benefits for emotional wellbeing and a sense of normality. These
findings are similar to the consequences of ‘meaningful activity’ identified in the literature.
Chapter 8: Conclusion 255
Figure 8.1. Model of ‘meaningful activity’ for RACF residents living with dementia
Antecedents
Activity opportunities
Enabling environment
Family and staff support
Consequences
Increased involvement Sense of normality Improved health
Meaningful activity
Suited to the
individual
Engaging
Enjoyable
Goal-related
Linked to identity
Social
Care Environment
Chapter 8: Conclusion 256
8.1 IMPLICATIONS FOR POLICY AND PRACTICE
The findings of this study have the potential to impact the care of RACF residents with
dementia. First, there are specific groups of residents who are more likely to have fewer activity
opportunities and less frequent participation. Resident characteristics with the greatest impact
on activity participation were the severity of cognitive impairment and depression. Residents
with more severe cognitive impairment, severe depression, mild pain or who exhibited
aggressive verbal behaviour or wandering behaviour had less frequent activity participation.
RACF staff need to give special attention to residents with these characteristics to ensure that
they have suitable activity opportunities and the supports they require to participate in
activities. Support from family members and RACF staff as well as an enabling environment
were identified as important antecedents of resident participation in ‘meaningful activities’.
Staff also need to be mindful of residents whose needs are less apparent such as those who do
not exhibit non-aggressive types of verbal behaviour or are less visible in the RACF
environment.
This study suggests a need for balance between providing activity opportunities through,
for example, scheduled activity calendars and more flexible approaches including tailoring
activities and providing individualised support. When asked about ‘meaningful activities’,
participants in the qualitative study focused on the activities provided as part of the activity
calendar. Scheduled activities can be particularly important for residents with dementia who
have difficulty initiating activities themselves (Tak et al., 2015). However, analysis of the
AusQoL study data found an inverse relationship between activity provision at the RACF level
and the activity opportunities for individual residents with dementia. This finding challenges
the value of planning and implementing a structured and broad scheduled activity calendar.
As discussed in the qualitative study, residents with dementia often require support to
enable participation in ‘meaningful activities’. The needs and abilities of individual residents
with dementia require comprehensive assessment to facilitate the planning and delivery of
suitable individual and group activities (Kuhn et al., 2004). RACF activity provision includes
activities provided for residents with and without dementia. These activities are not necessarily
suited to the needs and abilities of residents with cognitive or physical impairments. Activities
offered as part of a structured calendar have the potential to be meaningful to residents as they
often provide opportunities for social connection, but they must also be enjoyable and
engaging, aligning with the individual’s interests and suited to their abilities. Therefore, while
activity calendars can be a valuable way to organise and plan activities in the RACF context,
Chapter 8: Conclusion 257
without support and tailoring of activities to the needs and interests of individual residents with
dementia, activity calendars alone will not be adequate for facilitating participation in activities
and, in particular, ‘meaningful activities’.
The findings of the current study also suggest that it is important to regularly review
actual activity participation patterns of residents as participation is not necessarily guaranteed
by providing a varied and comprehensive activity calendar. In line with this, actual activity
participation, level of engagement in the activity and resident perceptions of the activities are
arguably important quality indicators in RACFs relative to the understanding of perceived QoL
by residents with dementia. Consideration of the quality of activity uptake rather than the type,
variety and frequency of available activities is important as well as the stability of meaningful
engagement in any specific activity, that is, for example, does meaningful engagement last a
matter of days, weeks or is sustained over months or longer. These considerations can assist
staff to respond proactively to activity offerings for residents.
There is broad interest in person-centred care and a desire to use approaches to care
informed by this philosophy when caring for people with dementia. The individualised nature
of ‘meaningful activities’ suggests that facilitating participation in these activities is one
practical approach RACFs can use to implement person-centred care. The key attributes of
‘meaningful activities’ identified in this study, such as an activity being enjoyable and
engaging, can be used by those involved in caring for and supporting RACF residents with
dementia to identify potentially suitable activities. Understanding the characteristics of
activities that are meaningful can guide family members and RACF staff to provide activity
opportunities that address these attributes and consider the supports needed to facilitate resident
participation in these types of activities. For residents with dementia, many of whom have
difficulty with independent participation, it is important to understand the type and extent of
assistance required for participation that is most likely to confer meaning for individual
residents. With recognition that the specific activities that individual residents perceive as
meaningful may change over time, RACFs need to create systems and opportunities to identify
and monitor ‘meaningful activities’ and make changes as necessary to the activities offered and
the support provided.
The emphasis on using person-centred principles in the care of people with dementia is
also related to the focus on activities that are preference driven (Cohen-Mansfield, Gavendo,
et al., 2017), individualised (Van Haitsma et al., 2015) or tailored (Gitlin et al., 2008; Gitlin et
al., 2009; Kolanowski et al., 2011). While this importantly acknowledges the value beyond
Chapter 8: Conclusion 258
activities merely occupying someone, the findings from this study pose additional factors to be
considered. Many of the studies evaluating ‘tailored’ or ‘individualised’ activities for people
with dementia involve prescribing activities for an individual, usually for participation on their
own or in a one-on-one context with a carer (Cohen-Mansfield, Gavendo, et al., 2017; Gitlin
et al., 2008; Kolanowski et al., 2011). The findings of the current study highlight the importance
of the social aspect of activities for them to be meaningful for RACF residents with dementia.
While this socialisation could come from one-on-one activities with staff, the value of being
with others their own age and ability level was also highlighted as being important. Therefore,
there is still value in group-based activities. In addition to this, the focus of residents, family
and staff on the activities provided as part of the RACF activity calendar suggests that relying
on individually tailored activities for each resident on every occasion would limit activity
opportunities. Relying on that approach to activity provision in RACFs would also be
unsustainable, requiring a significant amount of staff, family or volunteer time to facilitate
activity opportunities and participation for individual residents with dementia. This would be
problematic given that even with the current models of RACF activity provision that combine
activity calendars, flexibility and individual support, participants identified limited staff
capacity as one limitation on residents participating in ‘meaningful activities’.
The value placed on the social aspect of ‘meaningful activities’ in the qualitative study
has some additional implications for the care and support of residents with dementia. While
the types of activities residents participate in are important, residents could benefit from greater
emphasis on strategies to facilitate social interactions and address social needs through activity
participation. Taking into account the limitations on staff time (Clarke et al., 2019), perhaps
staff could identify ways to facilitate social connections between residents through shared
activities. One strategy that staff could use to encourage social connections through activity
could be to match residents with other residents who have similar interests (Mondaca et al.,
2019). This may be difficult for some residents, particularly those whose preferred language is
not English or who have apathy, depression or severe dementia impacting their motivation and
communication ability. However, facilitating these interactions where possible would address
the concern of some residents and family members that there was often a lack of other residents
with the cognitive abilities to allow satisfying social interactions, particularly for those living
in dementia-specific areas.
The findings of this study suggest that social needs are highly subjective, and the social
aspect of activities is not limited to the obviously social activities such as getting together with
Chapter 8: Conclusion 259
family and friends. Other activities can facilitate social connections by residents participating
alongside others. Again, this was different for each resident with some likely to benefit from
one-on-one activities or very small groups while others may be able to cope with bigger groups
or find value in simply seeing others in the room. While an emphasis on the social aspect of
activities is important, it needs to be guided by a person-centred approach that acknowledges
that social abilities, needs and preferences vary.
8.2 STRENGTHS AND LIMITATIONS
8.2.1 Phase 1- Literature-based concept analysis
The literature-based concept analysis of ‘meaningful activity’ has several limitations. It
is important to acknowledge that concepts are not fixed and how they are understood will likely
change over time (Walker & Avant, 2011). The findings of this concept analysis, like any, is
subject to scrutiny as it is used and changes over time as more evidence becomes available in
the field of inquiry. Also, as the analysis is based on existing literature, there may be gaps in
the understanding of the concept and limitations in the use of the findings in areas where there
are gaps in the existing literature. For example, most of the existing ‘meaningful activity’
literature is based on qualitative studies. Therefore, while the model proposed from these study
findings links a range of outcomes to ‘meaningful activity’ participation, these are primarily
outcomes that are perceived by the participants of the various studies, rather than outcomes
that have been measured in intervention studies. There were some quantitative studies included
in the concept analysis (Conti et al., 2008; Goldberg et al., 2002; Gori et al., 2001) but these
studies used limited definitions of ‘meaningful activity’. These studies (Conti et al., 2008;
Goldberg et al., 2002; Gori et al., 2001), as well as studies focusing on tailored or individualised
activities (Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski et al., 2011; Van Haitsma et al.,
2015) have shown positive outcomes from participating in these types of activities. Intervention
studies using the more comprehensive definition of ‘meaningful activity’ identified in this
concept analysis would provide a better understanding of the outcomes of ‘meaningful activity’
participation and inform the planning and provision of ‘meaningful activities’.
Despite these limitations, concept analyses provide valuable insights that help to clarify
vague concepts (Walker & Avant, 2011). ‘Meaningful activity’ is a term that continues to be
frequently used in the literature without being clearly or consistently understood or defined.
Chapter 8: Conclusion 260
This means that studies going forward cannot be benchmarked against a common
understanding and descriptions and measures remain predominantly atheoretical. It is a
strength of the concept analysis process that a robust procedure for the analysis was used and
the literature was drawn from a broad range of fields, settings and populations to better
understand the concept. These findings will help to move discussion forward in this area and
provide a stronger foundation for future research and further conceptual validation.
8.2.2 Phase 2- Secondary quantitative analysis of the AusQoL study data
The quantitative analysis of the AusQoL study data contributes to understanding activity
opportunities and participation as well as affect among people living with dementia in RACFs.
The AusQoL study was the first to comprehensively explore QoL in a nationally representative
sample of residents with dementia in Australian RACFs (Beattie et al., 2015; Fielding et al.,
2015). There have been previous studies exploring the relationship between activity
participation and a range of RACF and resident characteristics such as small-scale
environments, depression and wandering behaviour (Siedlecki et al., 2009; Smit et al., 2012;
Volicer et al., 2013). It is a strength of the AusQoL study that, rather than considering
characteristics in isolation, data was collected on numerous characteristics from a range of
sources including RACF policies, RACF-held resident-specific clinical records and staff report
of resident health and care. This allowed for the development of regression models to determine
the amount of variance in activity opportunities and participation and resident affect that can
be explained independently by the RACF characteristics, resident demographic, health, care
and dementia related behaviour characteristics. In addition to this, while the provision of
activity opportunities at the RACF level has previously been explored (Buettner &
Fitzsimmons, 2003), little was known about activity opportunities for individual residents. The
current study has provided valuable insight into this aspect of QoL and care for RACF residents
with dementia.
One limitation of the analysis conducted in Phase 2 of this study is the missing AusQoL
study data. Of the 446 residents who participated in the AusQoL study, 50 were excluded from
this analysis because of missing activity opportunity data. For most demographic
characteristics, there was not a significant difference between the residents who were included
and those who were excluded. Among the residents who were excluded, a significantly higher
proportion preferred a language other than English compared to the residents who were
Chapter 8: Conclusion 261
included in this analysis. However, in both groups the majority still preferred English. There
was also some missing data for individual variables in the included dataset. One example of a
variable with a large amount of missing data was wandering. Data about wandering behaviour,
using the RAWS, was only collected about residents who were ambulant, therefore excluding
many residents with more severe impairments. Wandering data was available for 263 of the
396 residents. To deal with large amount of missing data for the wandering variable, regression
models were developed and reported separately with and without wandering. The sample size
for each analysis has been reported in the relevant tables in Chapter 5.
The approach to measuring the frequency of activity participation in the AusQoL study
using the AAIQOL has some limitations. Staff reported resident participation in specific
activities as either none, less than three times a week or three or more times a week (Albert et
al., 1996). This type of measurement meant that a resident who participated in one activity for
several hours each day would score the same as another resident who participated in one
activity for three brief periods in a week or a resident who participated in two separate activities
once a week each.
Another limitation of the AAIQOL is the potential overestimation of the frequency of
participation in several of the activities. Watching television or listening to the radio were
among the activities most commonly participated in by the AusQoL study participants. Smit et
al (2017; 2016) suggested that participation in watching television or listening to the radio may
be overestimated when using staff report as staff often report residents participating in these
activities when they are on in the background and not just when residents are actively involved
in the activity. In that study, the reported duration of participation in activities such as watching
television was considered extreme with some residents reported to watch television for more
than 24 hours over a three-day period. Using the AAIQOL to measure activity participation
rather than the duration of participation is less likely to be sensitive to the inclusion of passive
forms of activity participation. For example, a single period of activity participation as reported
by a staff member using the AAIQOL may involve active participation or include both passive
and active forms of participation. The value of passive participation in activities such as
television watching for people with dementia is unclear (Gustafsdottir, 2015) although
participants in the qualitative study suggest this may be a valid and valuable form of activity
participation for some people. There is no way to differentiate between active and passive
participation using the AAIQOL, and it is possible that some staff respondents reported only
active participation while others reported both.
Chapter 8: Conclusion 262
However, using the AAIQOL to measure activity participation ameliorated some
limitations of other approaches to retrospectively reporting activity participation. For example,
reporting the specific number of times an activity was participated in or the duration of
participation would likely be inaccurate when done retrospectively. Unlike other studies, which
focus on the number of activities participated in (Ellis et al., 2016; Smit et al., 2012), the
AusQoL study, using the AAIQOL also measured the frequency of participation and whether
it was enjoyed. These aspects of the AAIQOL allow for a more detailed understanding of
resident activity participation. In the absence of sufficient resources to undertake systematic
observation of resident activity participation in this large-scale study, the approach to
measuring activity participation using the AAIQOL is adequate. Another strength of the
AAIQOL is that the use of staff report data allowed for the inclusion of residents with mild to
severe dementia. Self report data was also collected in the AusQoL study but only for residents
with MMSE scores of ten or above so excluded residents with more severe dementia. Among
residents participating in the AusQoL study, 34% were deemed as ‘unable to complete’ the
MMSE and 18% obtained a score less than 10, indicative of severe cognitive impairment
(Beattie et al., 2018). Therefore, the use of staff report data allowed for the inclusion of
approximately 200 additional residents who would not have been included if using self report
data.
The AusQoL study used a cross-sectional design which did not allow for definitive
conclusions about the causal relationship between activity and resident and RACF
characteristics. This is an issue in relation to potentially modifiable characteristics such as
dementia related behaviour changes, resident function and health. It is unclear whether the
focus should be on facilitating activity opportunities and participation, reducing behaviours or
improving function and health. However, regardless of the direction of these relationships,
maximising suitable activity opportunities and participation for residents with dementia is a
positive and practical aspect of care that is valued by residents themselves as well as their
family members and RACF staff.
8.2.3 Phase 3- Qualitative study
The analysis of data from the qualitative study was guided by the defining attributes,
antecedents and consequences of ‘meaningful activity’ identified in the existing ‘meaningful
activity’ literature through the Phase 1 literature-based concept analysis. A strength of this
Chapter 8: Conclusion 263
approach is that it adds support for the relevance of the concept of ‘meaningful activity’ and
builds on what is already known about the concept in different populations and settings (Sadler,
2000; Walker & Avant, 2011). The qualitative study focused on people living with dementia
in RACFs so applied the concept to this specific context. While the findings from the literature
were used as a guide, the themes were not adhered to rigidly, with some modified or combined
and new themes added. Areas of agreement and disagreement between the two datasets were
explored. This process helped to identify themes of particular relevance for RACF residents
with dementia such as family and staff support, the social aspect of ‘meaningful activities’ and
the sense of normality that results from participating in these activities. While this is a strength
of the study, the findings are limited somewhat by the gaps in the existing literature. One gap
is that most studies, including the current Phase 3 study, explore ‘meaningful activity’ using
either qualitative methods or quantitative surveys. The model developed from these findings is
based on the reported rather than observed or empirically measured consequences of
‘meaningful activity’ participation. However, with a better understanding of what makes
activities meaningful for people living with dementia in RACFs, future intervention studies
could explore in more detail the consequences reported by the participants of this study.
While the discussion of ‘meaningful activities’ is not new in the literature, a strength of
this study is that it included perspectives of RACF residents with dementia, their family
members and RACF staff. This allowed for comparisons between these three perspectives to
be made, and these new understandings have valuable implications for care and support for
residents with dementia. Harmer et al (2008) have explored the differing perspectives on
‘meaningful activity’ among these groups in the UK but with different inclusion and exclusion
criteria for resident participants and using different data collection methods. Residents were
only included in the UK study if they could provide their own informed consent and were
excluded if they had a diagnosis of depression or anxiety. The relationship between depression
and activity and the high proportion of residents with depression identified in the AusQoL
study suggests that this is an important group of residents to include in studies concerned with
activity. In the current study, obtaining proxy consent allowed residents to participate even if
they were unable to provide their own informed consent, giving them the opportunity to
contribute to research and share the experiences and perspectives of residents with more severe
dementia. In the UK study, focus groups were used to collect data from all participant groups.
While there is debate about the suitability of focus groups for research participants with
dementia (Cridland, Phillipson, Brennan-Horley, & Swaffer, 2016), this was likely to be more
Chapter 8: Conclusion 264
difficult in the current study with residents with more severe cognitive impairment. Therefore,
individual interviews with residents allowed for those with more severe cognitive impairment
to also participate. The authors also recommended that future research consider, in more detail,
methods that can be used to enable residents with dementia to participate in ‘meaningful
activity’. The current study was able to address this. In many RACFs, volunteers also have an
important role in relation to activities (Mavromaras et al., 2017). Including the perspectives of
volunteers would have added useful insights on the issue. Future research should consider this
group.
There were some limitations of the qualitative phase of this study in relation to the
diversity of participants that limit the generalisability of findings. Initially, the aim was to
recruit RACFs from outer regional, inner regional and major city geographic areas. All four
RACFs that were recruited were from inner regional areas. Despite the challenges of recruiting
RACFs diverse by remoteness, the participating RACFs were located in distinct areas: 1) a city
in northern Tasmania; 2) a city in southern Tasmania; 3) a town in southern Tasmania; and 4)
a coastal town in Victoria. There was diversity in RACFs in relation to size and organisational
type.
There were also limitations in the diversity in resident participants, for example, in
relation to gender. Most participating residents were female with less than 16% being male.
This may have some implications for the findings as different challenges in relation to activities
for men were identified by some of the participants. For example, participants reported that
typical male gendered activities such as woodworking or mechanical work are difficult or even
not possible in the RACF context while typical female gendered activities such as knitting and
craft are possible and common. However, this gender imbalance in participants is not surprising
given that there are more female than male residents in Australian RACFs with female residents
accounting for 70% of all permanent RACF residents (Australian Institute of Health and
Welfare, 2012b).
This study also excluded some groups of RACF residents. Residents with a severity of
dementia or a speech or hearing impairment that prevented their participation in an interview
were excluded. Excluding residents with impairments that contribute to communication
difficulties is a limitation given the social nature of ‘meaningful activities’ identified in this
study. Future research needs to consider appropriate data collection methods that would allow
for residents with these impairments to participate.
Chapter 8: Conclusion 265
8.3 FUTURE RESEARCH
There are several directions for future research. While the analysis of the AusQoL study
data provided a comprehensive understanding of the characteristics associated with resident
activity opportunities and participation, there are areas where a more detailed understanding
would be valuable and unexpected or counterintuitive findings that could be further explored.
A more fine-grained knowledge could be developed by considering different types of activities
such as outdoor activities, intellectual activities and social activities in addition to overall
participation in activities. Prior to the AusQoL study, there has been limited research
differentiating the types of aggressive and agitated behaviour in relation to activities. The
current analysis provided valuable insights into relationships between these and resident
activity, but further exploration is needed. There are some commonly held assumptions that
were not supported by the findings of this study, for example, that a person-centred approach
to care and resident involvement in developing personalised activity plans will increase
participation. Although some possible explanations for findings in relation to these
characteristics were discussed in the previous chapter, the field would benefit from further
research in these areas.
Limited RACF staffing is often raised as a barrier to activity participation, including
participation in ‘meaningful activities’. However, this view was not supported by the analysis
of the AusQoL study data, suggesting that the training and experience of RACF staff is more
important than considering only the numbers of staff or staff to resident ratios. A better
understanding of the training and experience of RACF staff and their knowledge and capacity
to provide activities would be valuable and help to identify areas to focus future training.
Specific areas requiring further research include the experience and capacity to support activity
participation among staff working in dementia-specific areas and staff working in different
roles including activity provision and care-related roles. Future research could also evaluate
the effectiveness of the range of strategies used by RACF staff to support residents with
dementia, including those living in dementia-specific areas, to participate in activities.
Further research is needed to explore resident activity opportunities and participation in
dementia-specific areas compared to integrated areas within RACFs. Little is known about the
approaches to activity opportunities and programming as well as the activities offered in
dementia-specific areas. Activity opportunities may be part of a structured program or use a
more flexible approach, part of the broader RACF activity opportunities or limited to the
dementia-specific unit. The perspectives of residents living in dementia-specific units, their
Chapter 8: Conclusion 266
family members and RACF staff about current and potential approaches to activity provision
and support in these areas would also be valuable.
Observational research is needed to build on the understanding of activity participation
and ‘meaningful activity’ for people living with dementia in RACFs developed in this study.
Observing residents with dementia while they are participating in activities would provide
opportunities to consider whether the activity is meaningful for the individual. The empirical
referents of ‘meaningful activity’ identified in this study could provide guidance for how the
concept could be recognised and quantified in observational studies of activity (Walker &
Avant, 2011). Passive and active activity participation could also be explored using
observational studies. While participants in the qualitative study perceived value in passive
engagement in activity, previous research and measurement tools do not clearly differentiate it
from more active participation. This makes the impact of passive participation unclear.
Observations would provide a more detailed understanding of this aspect of activity
participation among RACF residents with dementia. Observations can also provide important
insights into social interactions and the social context (Mulhall, 2003). The qualitative phase
of this study indicated the importance of the social aspect of activities but the extent to which
residents with dementia engage in social interaction through activity participation is difficult
to ascertain from these findings or the quantitative data collected using the AAIQOL.
Observations would be valuable to further explore this.
Observations would complement the interview-based findings by placing these accounts
within the context of the wider care setting and providing another perspective on everyday
experiences (Hubbard, Downs, et al., 2003; Phinney et al., 2007). The most appropriate types
of observations would be naturalistic observations with minimal interference or interaction
from the researchers, and the observation of usual care and activities (Holthe et al., 2007;
Hubbard, Tester, & Downs, 2003; Mulhall, 2003). A study looking at activity structure and
programming in five US RACFs found that most organised activities finish by 4:00pm and at
that time many residents display either passive or agitated behaviours (Buettner &
Fitzsimmons, 2003). The scheduling of organised activities is likely to be similar in Australian
RACFs. To be comprehensive, observational studies of activity should include both times when
residents are likely to have opportunities to participate in activities organised by the RACF
staff as well as times in the late afternoon when this is less likely.
While this study has identified the key defining attributes of ‘meaningful activity’ in
relation to RACF residents with dementia, further research is needed to clarify how these
Chapter 8: Conclusion 267
attributes can be measured in practice. There are some existing self report tools to assess
‘meaningful activity’ among older adults, but they are not specific to those living with dementia
in RACFs. The Meaningful Activity Participation Assessment (MAPA) seeks a rating of the
meaningfulness of each of 28 listed activities from ‘not at all’ to ‘extremely’ (Eakman et al.,
2010b). Respondents are given guidance to assess the meaningfulness of activities as “how
much it matters or is personally fulfilling for you” (Eakman et al., 2010b; p3). Using the
Engagement in Meaningful Activities Survey (EMAS) overall engagement in ‘meaningful
activity’ is assessed, not an assessment of the meaning of specific activities (Eakman et al.,
2010a). The defining attributes of ‘meaningful activity’ identified in this study provide a
foundation for developing a tool specific to the RACF context and in relation to residents with
dementia to assess whether specific activities are meaningful. Any tool developed would need
to address each of the defining attributes. The tool would need to measure enjoyment of the
activity, engagement, the suitability of the activity to the individual resident, links between the
activity and the resident’s identity and personal goals and the social aspect of the activity.
The qualitative study provided a preliminary understanding of how family members and
RACF staff currently assess ‘meaningful activity’ in practice including observing resident
responses of enjoyment, body language and facial expression. These assessments relate
primarily to enjoyment of the activity and engagement of the resident. It is unclear how family
members and RACF staff assess whether a certain activity is related to a resident’s goals and
identity, suited to their abilities and interests and has a social aspect that is suited to the
individual resident. More research is needed to further explore how each of the defining
attributes of ‘meaningful activity’ can be measured. The findings of the qualitative study also
highlight the role that family members and RACF staff play in identifying potentially
‘meaningful activities’ and supporting residents with dementia to participate. Therefore, a tool
that can be completed by family members and RACF staff is needed in addition to a self report
tool. These tools could be used for research purposes but also to support those involved in
caring for RACF residents with dementia to assess current activity opportunities and
participation and identify areas that may need to be addressed.
Intervention studies could provide evidence for the positive consequences of ‘meaningful
activity’ suggested by participants in this qualitative study. The analysis of the AusQoL study
data identified a range of resident characteristics associated with activity opportunities and
participation but was based on a cross-sectional study so the direction of causality is unknown.
Many of the other studies in the area have also been cross-sectional. Intervention studies would
Chapter 8: Conclusion 268
provide valuable insight into the nature of the relationships between resident activity and RACF
and resident characteristics. There is a particular need for studies to inform the use of activities
and ‘meaningful activities’ as a non-pharmacological intervention for residents with depression
and dementia related behaviour changes. Activity participation has been recommended as an
intervention to address these but there is no clear framework to guide implementation. It is
unclear whether activities need to be adapted to the specific interests and needs of individuals
or whether non-tailored activity participation is adequate to manage dementia related behaviour
changes (Mohler et al., 2018; Trahan, Kuo, Carlson, & Gitlin, 2014). Other questions that need
to be explored include whether there is a difference between meaningful and non-meaningful
activities and the impact of regular and ongoing activity participation compared with activity
participation facilitated in response to specific behaviours as they arise.
8.4 CONCLUSION
This study has addressed important gaps in the literature. First, it has provided valuable
insight into QoL as indicated by activity participation and signs of affect among Australian
RACF residents with dementia. While previous studies explored RACF-level activity
participation or selected characteristics associated with activity, the current nationally
representative study investigated actual activity opportunities and participation of individual
residents. Including a broad range of resident and RACF-level characteristics allowed for
independent associations with activity participation to be identified. The literature-based
concept analysis was the first comprehensive analysis of what ‘meaningful activity’ means in
the context of the lives of people living with dementia. These findings were built on in the
RACF context to provide a clearer understanding of this widely used term and help to develop
research and discussion on the topic. While several areas for further research have been
identified, the study has some important implications for the care of those living with dementia
in RACFs. The findings provide guidance for those caring for RACF residents living with
dementia to understand groups of residents who may have fewer activity opportunities or less
frequent activity participation. A better understanding of what makes activities meaningful in
this context can also provide direction on how to identify activities that may be meaningful.
The knowledge gained from this study is an important step towards increasing participation in
activities, including ‘meaningful activities’, among RACF residents with dementia, and this
has the potential to improve their daily lives.
269
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Appendices
Appendix 1
Published concept analysis paper
Citation: Tierney, L., & Beattie, E. (2020). Enjoyable, engaging and individualised: A concept
analysis of meaningful activity for older adults with dementia. International Journal of Older
People Nursing, doi: 10.1111/opn.12306
Abstract
Aim
The term ‘meaningful activity’ is widely used in policy, practice and the research literature. However, definition and use of the term is unclear and inconsistent. A concept analysis was conducted to explore the fundamental attributes that make an activity meaningful for older adults with dementia and propose a conceptual model for understanding ‘meaningful activity’ in this population.
Methods
This study followed Walker and Avant’s method of concept analysis. Searches were conducted in the Scopus, MEDLINE, CINAHL, PubMed, Academic Search Elite and Web of Science databases for literature using the term ‘meaningful activity’. Papers published before 1996 were excluded.
Results Twenty-nine papers concerned with ‘meaningful activity’ were analysed. This analysis identified five attributes that make activities meaningful for people with dementia: 1) enjoyable; 2) suited to the individual’s skills, abilities and preferences; 3) related to personally relevant goals; 4) engaging; and 5) related to an aspect of identity. The conceptual model illustrates how individual and opportunity factors influence participation in ‘meaningful activity’ and the consequences of this participation as discussed in the existing literature.
Conclusion
The findings of this concept analysis provide insight into what characteristics make an activity meaningful. This understanding can be used by those involved in researching, planning or delivering services and care for people with dementia to encourage and support participation in activities that are meaningful to individuals.
Keywords
Meaningful activity, concept analysis, dementia, person-centred care, older adults
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Summary statement of implications for practice
What does this research add to existing knowledge in gerontology?
The concept analysis provides a more comprehensive understanding of ‘meaningful activity’ based on what is known about the concept in a range of populations and contexts.
The model of meaningful activity for older adults with dementia links the attributes of ‘meaningful activity’ with the antecedents and consequences of participation.
What are the implications of this new knowledge for nursing care with older people?
The attributes identified in this concept analysis provide guidance for those involved in providing support and care for older adults with dementia to identify and enable participation in ‘meaningful activity’.
The findings can be used to inform the development of activity programs and opportunities for older adults with dementia, focusing on activities that have meaning for individuals.
How could the findings be used to influence policy or practice or research or education?
A practical definition of ‘meaningful activity’ has been developed to facilitate a common understanding of the concept and use of the term in policy, practice, research and education.
The individualised and highly subjective nature of ‘meaningful activity’ implies that facilitating participation in them could be one element of person-centred care.
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Introduction
Person-centred care is the dominant approach to caring for people with dementia and considered the gold standard (Du Toit, Shen, & McGrath, 2018; Nolan, Davies, Brown, Keady, & Nolan, 2004). Person-centred approaches to care respect individuality, focus on individuals’ strengths rather than impairments and empower individual decision making (Brooker, 2004; Kitwood, 1997; McCormack, 2003; Morgan & Yoder, 2012; Slater, 2006). Using this approach, the caregiver develops a deep understanding of the context of the person’s life to better recognise their beliefs, values and how they make sense of their experience of illness and care (Kitwood, 1997; McCormack, 2003, 2004). Under the framework of person-centred care for people living with dementia activity has become a focus of increased scholarship and a range of terms have emerged in the literature to describe these activities. These include ‘tailored’ (Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski, Litaker, Buettner, Moeller, & Costa, 2011; Mohler, Renom, Renom, & Meyer, 2018), ‘individualised’ (Van Haitsma et al., 2015), ‘preferred’ (Cohen-Mansfield, Gavendo, & Blackburn, 2017) and ‘purposeful’ (Dementia Australia, 2019), each enriching our common understanding of the centrality of the unique person in activity planning. This focus is consistent with the view that the value of recreational activities is based on the essential human need for activity (Csikszentmihalyi, 1993). It also reflects the growing interest in the value of activities that are suited to the unique person and require intervention beyond basic provision of general activities, and the acceptance of activity as a therapeutic tool to improve wellbeing. Additionally, there is growing concern for considering the perspectives and experiences of people living with dementia, including how they perceive, value or find meaning in the activities they are participating in (Aged Care Quality and Safety Commission, 2018; Hubbard, Downs, & Tester, 2003; Phinney, Chaudhury, & O'Connor, 2007). These types of activities provide a strategy for enacting some elements of person-centred care for people with dementia (Edvardsson, Varrailhon, & Edvardsson, 2014; Han, Radel, McDowd, & Sabata, 2016b). This viewpoint about activity questions the adequacy of more traditional types of large scale, fixed group activities for people with dementia and promotes a need to identify and facilitate participation in activities that are more suited to each person (Buettner & Fitzsimmons, 2003). There is also a belief that these types of activities have the potential to have greater positive benefits for those participating than participating in activities that are not tailored, individualised or meaningful (Eakman, Carlson, & Clark, 2010b; Kolanowski, Buettner, Litaker, & Yu, 2006). In this context, ‘meaningful activity’ has emerged as an important concept that needs to be defined and further explored. It arguably differs from terms such as ‘individualised’, ‘preferred’ and ‘purposeful’ because it encompasses an inference that by taking part in individual, tailored or preferred activities the person derives ‘meaning’ from the experience and that experiencing ‘meaning’ has positive health benefits. Csikszentmihalyi (1993) suggested that, where the person’s capabilities and the degree of challenge in the activity is so closely aligned that the experience is intensely enjoyable to them, a natural ‘flow state’ is in process. That ‘flow state’ may reflect the cognitive and emotional meaning the activity has for the person because the activity is neither too demanding nor too simple and can be achieved. At least one study (Payne, Jackson, Noh, & Stine-Morrow, 2011) has quantified ‘flow state’ in a sample of older adults using a questionnaire; however, the concept has yet to be examined in a sample of older adults with dementia. The literature suggests examples of activities that are considered meaningful for people with dementia. These can include reminiscence therapy, social interactions, hobbies, household
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chores and individual activities such as reading (Harmer & Orrell, 2008; Phinney et al., 2007). However, the utility of compiling a list of ‘meaningful activities’ is limited, as the meaning ascribed to specific activities and reasons for participating in them will vary between individuals (Carless, 2008; Eakman, 2013; Han, Radel, McDowd, & Sabata, 2016a; Mansbach, Mace, Clark, & Firth, 2017). It is, therefore, more useful to understand what makes an activity meaningful. This will encourage a more person-centred approach to identifying ‘meaningful activities’ and supporting involvement of people with dementia. Despite the interest in, and common use of the term ‘meaningful activity’, the definition and understanding of it in the literature is ambiguous and inconsistent (Conti, Voelkl, & McGuire, 2008; Eakman, 2011; Mansbach et al., 2017). Some definitions focus on a broad understanding of the concept such as “engagement in life” (Kuosa, Elstad, & Normann, 2015; p2) or occupations “perceived as significant to that person” (Phinney et al., 2007; p385). Others focus on a specific aspect such as activities that “fulfil a goal or purpose” (Goldberg, Brintnell, & Goldberg, 2002; p18). This lack of consistency has hindered theoretical development of the concept (Eakman, 2011) and resulted in limited conceptual and empirical literature to confirm the common belief that participation in ‘meaningful activity’ is beneficial for people with dementia (Phinney et al., 2007). The inconsistent definition and use of the term ‘meaningful activity’ is further complicated by a lack of distinction from other types of ‘individualised’, ‘tailored’ or ‘preferred’ activities and similar concepts such as ‘engagement’ and ‘leisure activity’. The concept of productive engagement in older adults has been analysed and is defined as “the process of continuing to work either paid or unpaid, caring for others, engaging in social activities, and growing spiritually” (Thanakwang & Isaramalai, 2013, p128). The concept of leisure in older people has also been analysed using a concept analysis approach, identifying three defining attributes including freedom from obligations and freedom of choice (Heung & Yuen Loke, 2012). The third attribute identified was ‘meaningful or enjoyable experiences’, suggesting that ‘meaningful activity’ is closely related to leisure. However, discussion of this attribute focused on enjoyment and did not explore meaningful experiences in detail. Although related concepts have been analysed, there has been no formal systematic analysis of the concept ‘meaningful activity’ with many authors assuming the attributes of what constitutes such an activity type and confers meaning for the person. Therefore, a systematic, theory-driven analysis of the concept ‘meaningful activity’ is required to better understand the concept and facilitate the identification of and participation in ‘meaningful activities’. The main objectives of this concept analysis were to: 1) explore the fundamental attributes that make an activity meaningful for older adults with dementia; 2) define the concept and; 3) propose a conceptual model for understanding ‘meaningful activity’ in this context.
Methods The concept was analysed using the method described by Walker and Avant (2011) which consists of eight steps: select concept, determine purpose, identify uses, define attributes, identify model case, develop additional cases, identify antecedents and consequences and define empirical referents. A concept analysis is based on the existing literature to understand the critical elements of the concept and how it is currently used. The focus of a concept analysis is to better understand a specific key concept using literature from a range of fields beyond
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nursing and across of range of population groups. Walker and Avant (2011) suggest using dictionaries and the literature both within and outside the specific area of interest to limit bias, provide a broad evidence base for the analysis and support the utility and richness of the findings. The findings of a concept analysis can be used to develop a definition of the concept and a conceptual model connecting the antecedents and consequences to the attributes (O'Shea, Timmons, O'Shea, Fox, & Irving, 2019; Thanakwang & Isaramalai, 2013; Windle, 2010).
Search Strategy
Dictionaries were initially used to identify common meanings of the individual words in the concept followed by a review of the concept ‘meaningful activity’ in the research literature. The following search strategy was developed in consultation with an expert librarian. The search terms ‘meaningful activity’ and ‘meaningful activities’ were used to search the Scopus, MEDLINE, CINAHL, PubMed, Academic Search Elite and Web of Science databases for relevant literature. While other terms such as ‘individualised’, ‘tailored’, ‘preferred’ or ‘purposeful’ activities may be related to ‘meaningful activity’ the terms were not included in the search. Walker and Avant (2011) acknowledge that concepts do not exist in isolation, they are surrounded by a network of related concepts. However, when selecting a concept for concept analysis it is important to be specific to ensure the analysis is focused and the findings make a useful contribution to knowledge development (Walker & Avant, 2011). The purpose of a concept analysis is to understand how a specific concept is understood and how the term is used. Therefore, although literature in these related activity areas provides a useful context, a detailed analysis of that literature is outside of the scope of this analysis of the concept ‘meaningful activity’. Previously published concept analyses have similarly used specific search terms and not included related concepts (Boggatz, 2015; Hermansson & Martensson, 2011; Heung & Yuen Loke, 2012; Jacelon, Connelly, Brown, Proulx, & Vo, 2004). Publications were included if they met one of the following criteria in relation to human behaviour: 1) qualitative research focusing on what constitutes ‘meaningful activity’ or which provide a definition of the concept; 2) quantitative studies of participation in ‘meaningful activity’ which also define the concept; or 3) reporting on the development of a tool to measure participation in ‘meaningful activity’ if the concept is also defined. Publications written in a language other than English or published before 1996 were excluded. Cultural and social changes over time impact the meaning of concepts and how terms are used (Walker & Avant, 2011). Therefore, it is acceptable to limit the included papers to a specified timeframe. In the context of this analysis, 1996 was a key time with person-centred care gaining increasing prominence in dementia care and Tom Kitwood publishing his influential book on the topic (Kitwood, 1997). The search results confirm that this was an appropriate exclusion criterion with ‘meaningful activity’ being a relatively recent concept, with few relevant papers returned from the earlier years within the search timeframe. To ensure a broad understanding of ‘meaningful activity’, quality assessment was not used to limit study selection beyond these criteria. The focus of this concept analysis is on ‘meaningful activity’ for older adults with dementia. In line with Walker and Avant’s approach to concept analysis, literature relevant to adults more generally was included, but with consideration for application to people with dementia. There are thought to be similarities between ‘meaningful activity’ for this group compared to adults without dementia (Phinney et al., 2007), so inclusion of the additional literature provided a richer understanding of the concept.
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Analysis Initially, the title and abstracts of papers returned in the search were read for eligibility followed by an assessment of the remaining papers based on reading the full text. Each paper meeting the eligibility criteria and included in the review was again read in full. An inductive approach was taken to synthesise and analyse findings and study conclusions under the categories of attributes, antecedents, consequences and empirical referents of the concept. Model and additional cases were constructed based on the literature, discussions with colleagues experienced in the care of older adults and the author’s research experience to illustrate the concept and its defining attributes. Ethical approval was not required for this study.
Results Term Definitions
To understand ‘meaningful activity’ as a concept, it is useful to consider the meaning of each word. ‘Meaningful’ has been defined as “full of meaning, significant; having real impact, substantial” ("Macquarie Dictionary," 2016) or “serious, important or worthwhile” ("Oxford Dictionary," 2016). While these definitions contribute to understanding ‘meaningful activity’, it is unclear in what sense a ‘meaningful activity’ will have importance or what it will have an impact upon. According to the Macquarie Dictionary, ‘activity’ is:
1) state of action; doing; 2) the quality of acting promptly; energy; 3) a specific deed or action; sphere of action (social activities); 4) an exercise of energy or force; an active movement or operation; 5) liveliness; agility ("Macquarie Dictionary," 2016).
The Oxford Dictionary also includes “a thing that a person does or has done; a recreational pursuit or a pastime” ("Oxford Dictionary," 2016). The term ‘meaningful activity’ has been defined in its entirety by the Concise Oxford Dictionary of Archaeology as:
human action which is carried out for definite reasons, and with specific purposes in mind. The vast bulk of human behaviour is composed of meaningful activities, this being one of the main characteristics which separates human conduct from the movements, objects and events of the natural world (Darvill, 2009).
This definition suggests that ’meaningful activities’ are purposeful but makes no reference to the value of the activity being significant, important or worthwhile as suggested by the above definitions of ‘meaningful’. In isolation, dictionary definitions are inadequate to understand uses and meanings of ‘meaningful activity’ in the context of health and care.
Papers Included for Review
The literature search identified 29 relevant papers for review (Figure 1).
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Figure 1: PRISMA Flow Diagram
Records identified through database searching (n = 2502)
Incl
uded
El
igib
ility
Id
entif
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ion
Records after duplicates removed (n = 850)
Abstracts reviewed for eligibility (n = 110)
Records excluded based on abstract review
(n = 78) Full-text articles assessed for
eligibility (n = 32) Full-text articles excluded
(n = 3) No definition (n=2) Thesis with published papers
from the study already included (n=1)
Studies included in qualitative synthesis (n = 29)
Records excluded based on title review
(n = 740)
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The ‘meaningful activity’ concept has been explored in several populations and contexts including the long-term unemployed (Ball & Orford, 2002), refugees (Bishop & Purcell, 2013), people with serious mental illness (Carless & Douglas, 2008) and older adults with or without dementia, living in the community or residential aged care facilities (RACFs) (Harmer & Orrell, 2008; Kuosa et al., 2015; Palacios-Cena et al., 2016; Phinney et al., 2007). These studies emanated from the fields of occupational therapy, nursing, psychology and gerontology. Of the 29 papers, 16 focused on older adults, including 10 focusing specifically on older adults with dementia. Papers concerned with ‘meaningful activity’ for older adults covered a range of relevant settings including the community, day respite centres and RACFs.
Defining Attributes
Identifying a group of attributes that are commonly linked to a concept and can act as criteria to recognise its occurrence is the heart of the concept analysis process (Walker & Avant, 2011). A review of the literature revealed five key attributes that make an activity meaningful: enjoyable; suited to the individual; related to personally relevant goals; engaging and; expresses and reinforces identity. The attributes were drawn from the ‘meaningful activity’ definitions included in the reviewed papers, contents of ‘meaningful activity’ tools, qualitative reports by study participants and conclusions of the authors of the reviewed papers. Enjoyable Activities are made meaningful through feelings of enjoyment and pleasure (Eakman, 2012, 2013; Eakman, Carlson, & Clark, 2010a; Kuosa et al., 2015; Vernooij-Dassen, 2007). Enjoyment can be experienced during activity participation (Nyman & Szymczynska, 2016; Roland & Chappell, 2015), when looking forward to an activity (Roland & Chappell, 2015) or enjoyment of the outcome of an activity (Bishop & Purcell, 2013). Activities may be enjoyed for various reasons such as being a hobby (Bishop & Purcell, 2013), a means of relaxation (Bishop & Purcell, 2013; Han et al., 2016a) or a connection to personal identity (Carless, 2008; Han et al., 2016a; Milte et al., 2016). In a study examining ‘meaningful activity’ in RACFs, people with dementia as well as care staff commonly identified enjoyment as a measure for whether an activity was meaningful (Harmer & Orrell, 2008). Suited to Individual Skills, Abilities and Preferences Activities that are suited to the abilities of individuals enable participation (Conti et al., 2008), contributing to a sense of competence and autonomy (Eakman, 2011, 2013) and facilitating enjoyment of those activities (Edvardsson, Fetherstonhaugh, & Nay, 2010; Han et al., 2016a; Harmer & Orrell, 2008; Phinney et al., 2007). For example, a person with moderate dementia may not follow a group conversation but may be able to walk in the garden. Therefore, this person may experience the walk as a more ‘meaningful activity’ as it is suited to their cognitive and physical abilities (Phinney et al., 2007). The ability to participate in an activity can be seen as evidence that it is suitable (Harmer & Orrell, 2008) while signs of frustration and confusion are often perceived as evidence that an activity is unsuitable (Roland & Chappell, 2015). A person with declining abilities may seem reluctant to participate in an activity that was previously meaningful to them (Harmer & Orrell, 2008). However, adapting an activity or providing support to suit current needs and abilities can ease fears of failure and enable the person to cope with their health-related losses while continuing to find meaning in the activity (Harmer & Orrell, 2008; Nyman & Szymczynska, 2016).
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Despite the need for individualised activities, group-based activities centred around common interests can be meaningful particularly if they are adapted to individual abilities within the group (Han et al., 2016a). Participation alongside others can foster a sense of belonging and may be preferred over individual activities by some people (Han et al., 2016a). This will be partly dependent on individual personality traits such as extroversion (Palacios-Cena et al., 2016; Roland & Chappell, 2015; Smith, Kolanowski, Buettner, & Buckwalter, 2009). Related to Personally Relevant Goals For an activity to be meaningful an individual needs to have a reason for participating in it (Westbroek, Klaassen, Bulte, & Pilot, 2010). It must be personally fulfilling and allow the individual to pursue and achieve personally relevant goals (Eakman, 2013; Eakman et al., 2010b; Goldberg et al., 2002). This can foster a sense of self-worth (Bryant, Corbett, & Kutner, 2001; Han et al., 2016a; Roland & Chappell, 2015), competence (Bryant et al., 2001; Eakman et al., 2010a), accomplishment (Bishop & Purcell, 2013; Eakman et al., 2010a), control (Conti et al., 2008), satisfaction (Bishop & Purcell, 2013) and feeling valued by others (Bryant et al., 2001; Eakman, 2012; Eakman et al., 2010a, 2010b; Han et al., 2016a; Roland & Chappell, 2015). For example, gardening was perceived as a ‘meaningful activity’ for a group of refugees resettling in the UK as the vegetables they grew were a tangible reminder to them of their achievement (Bishop & Purcell, 2013). Similarly, a desire to be involved in purposeful activities is felt acutely by older adults. RACF residents report a desire to undertake activities that allow them to assume some responsibility or role and contribute to those around them (Edvardsson et al., 2010; Han et al., 2016a; Harmer & Orrell, 2008; Kuosa et al., 2015; Palacios-Cena et al., 2016). Activities often take place within a social context and these social connections and interactions can give the activity purpose through experiences of reciprocity and equality (Conti et al., 2008; Kuosa et al., 2015). For some, belief that participation in an activity will be beneficial for their health can give the activity meaning. For example, a case study involving a person with serious mental illness revealed that running was perceived as a ‘meaningful activity’ because it could improve fitness and help him manage his mental illness (Carless, 2008). Similarly, the staff and family carers of people with dementia suggest that activities that allow them to use and maintain their functional abilities are meaningful to them (Harmer & Orrell, 2008; Roland & Chappell, 2015). However, in the papers included in this review, older adults themselves emphasised the value of activities that address their psychological and relational needs, not benefits to their physical health. Engaging Engaging is a term often used when discussing ‘meaningful activity’. In a study investigating ‘meaningful activity’ for long-term unemployed adults, activities that were perceived as meaningful were simply equated to being engaging (Ball & Orford, 2002). Activities that are engaging have also been described as interesting (Phinney et al., 2007). Harmer and Orrell (2008) suggest that pure engagement entails deep involvement in the activity, implying that engagement requires more than simply being physically present during an activity. In one study, family members of RACF residents with dementia suggested that for activities to be engaging they need to be at a level of difficulty that requires the individual to concentrate on what they are doing but without being unachievable (Milte et al., 2016). An example of an activity for RACF residents that is not typically considered meaningful is falling asleep in front of the television (Morley, Philpot, Gill, & Berg-Weger, 2014). This lack of attention suggests that in that case the activity is not engaging.
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Expresses and Reinforces Identity Expresses and Reinforces Identity An individual’s work is thought to be meaningful if it is tied to their identity or they somehow express themselves in that work (Adams, 2003). Activities can also reflect something about the individual or their values (Eakman, 2012; Eakman et al., 2010a, 2010b). The literature on ‘meaningful activity’ for people with serious mental illness focuses on this attribute. In that context, withdrawal from exercise and sport because of mental illness can result in a loss of self for people with an athletic identity and reintroducing exercise and sport into their lifestyle can restore a sense of identity (Carless, 2008; Carless & Douglas, 2008). Identity can also be linked to occupational roles and roles within family and community (Mansbach et al., 2017; Roland & Chappell, 2015). It has been suggested that for older adults, identity related to social roles such as parent, spouse and homemaker is particularly important for the meaning of activities (Bryant et al., 2001). A sense of shared identity can also be expressed by participating in an activity as a group, such as a family (Han et al., 2016a). Involvement in ‘meaningful activities’ that express identity gives people with dementia a sense of continuity and normality in their life despite other life changes and declining health (Kuosa et al., 2015; Phinney et al., 2007; Roland & Chappell, 2015). Family carers of people with dementia living in the community perceived the maintenance of a sense of identity through activity as important (Roland & Chappell, 2015).
Model and Additional Cases
The following cases were developed by the authors to illustrate the ‘meaningful activity’ concept (Table 1). The Model case is an example of the concept which illustrates each of the defining attributes while the additional cases help to clarify the concept by clearly illustrating what it is not (Walker & Avant, 2011).
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Table 1: Model and additional cases of ‘meaningful activity’ Type Case Model Case An example of the concept which illustrates each of the defining attributes.
John is a 75-year-old resident of an RACF. Before he retired, John was a local truck driver. It was a job he enjoyed because of the opportunity to meet and talk to different people throughout the day. John now gets up early every morning and delivers the newspapers to individual residents’ rooms. The early mornings don’t bother him as he’s used to it from years of working early mornings. Lately John has started forgetting which newspaper each resident likes to read so the office staff print a list with each residents’ name and their preference. This enables him to continue in this role. John enjoys talking with the other residents as he delivers the newspapers. John rarely misses or fails to complete a delivery and he wants to continue doing the deliveries for as long as he is physically able to as he likes to feel useful.
Borderline Case An example of the concept which illustrates most but not all the defining attributes.
Joan is an 83-year-old woman who lives alone in her own home and was recently diagnosed with dementia. Joan was a committed member of a church a few suburbs away from her home. As her dementia progressed Joan stopped driving so could no longer attend her old church. Joan now attends her neighbours’ church. Attending church has always been important to Joan and given her a sense of purpose. Joan feels she can contribute to this church by handing out the hymn books. However, she doesn’t enjoy going to her neighbours’ church as she is finding it hard to make new friends. Joan often gets distracted during the service.
Related Cases An example depicting how the concept fits into a network of related concepts, connected to the concept being analysed but not containing all the defining attributes.
Productive engagement is a concept related to ‘meaningful activity’ but with some key differences illustrated in this case. Peter is a 77-year-old man with dementia who recently moved into a retirement village. Every morning he keeps busy by tidying his apartment. Peter regularly reads the newspaper to a neighbour who has impaired vision. Peter feels it is his way of contributing to his care. Peter also attends the local church service to maintain his social connections and sense of spirituality. He doesn’t find these activities particularly enjoyable; he would prefer to spend time either reading novels or walking in the garden. However, Peter sees reading and walking as a luxury, even a waste of time. He wants to continue doing the other activities for as long as he is physically able to as they allow him to contribute to others and use his time productively.
Contrary Case An example that does not contain any of the defining attributes.
Mary is an 80-year-old woman with dementia who lives in an RACF. Each week Mary’s daughter brings in a few library books. She usually brings fiction which Mary doesn’t find very interesting. Mary would prefer to read about history. Due to her deteriorating vision, Mary struggles to read them. She often sleeps in her chair or listens to the activity in the corridor as she feels she has nothing useful to do.
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Antecedents and Consequences
Antecedents associated with ‘meaningful activity’ have been reported in the literature in relation to individual and enabling factors. For individuals, a sense of role identity will contribute to what activities are found to be meaningful (A. Han et al., 2016; Harmer & Orrell, 2008; Phinney et al., 2007). For some people with dementia articulating personal roles, interests and values may be difficult, making carer skills to identify these vital to ensure that the activities offered are suitable (Harmer & Orrell, 2008; Morley et al., 2014). Support from family or staff carers may enable participation in ‘meaningful activity’ for those who struggle to initiate activity (Harmer & Orrell, 2008; Roland & Chappell, 2015). As discussed earlier, activities must be appropriate for individual physical and cognitive abilities to be meaningful. Therefore, adequate physical and cognitive abilities and/or adaptive strategies to account for impairments are also antecedents of ‘meaningful activity’ (Ciro & Smith, 2015; A. Han et al., 2016; Harmer & Orrell, 2008; Phinney et al., 2007; Roland & Chappell, 2015; Smith et al., 2009). People with dementia may also be enabled to participate in ‘meaningful activity’ when their surroundings, objects and activities are familiar to them (Gori, Pientini, & Vespa, 2001; A. Han et al., 2016; Kuosa et al., 2015; Milte et al., 2016; Phinney et al., 2007). Opportunity factors also contribute to involvement in ‘meaningful activity’. The literature documents the need for availability of activities (Harmer & Orrell, 2008; Palacios-Cena et al., 2016; Phinney et al., 2007) and certain resources to allow participation. Required resources can vary according to types of activities and the support needs of individuals but may include financial resources (Ciro & Smith, 2015; Palacios-Cena et al., 2016), transport to and from the activity (Ciro & Smith, 2015) and adequate staffing for those conducted in health or aged care settings (Harmer & Orrell, 2008). One of the main consequences of participation in ‘meaningful activity’ discussed in the literature is the fulfilment of psychological needs (Eakman, 2013; Goldberg et al., 2002). This was emphasized by Ciro and Smith (2015, p11385) who described ‘meaningful activities’ as- “the activities that are so important, that if you could not do them, it would affect your happiness”. Some other psychological needs that participation in ‘meaningful activity’ can address are a sense of autonomy (Ball & Orford, 2002; Nyman & Szymczynska, 2016; Palacios-Cena et al., 2016), self-efficacy (Ball & Orford, 2002; Goldberg et al., 2002; Roland & Chappell, 2015), satisfaction (A. Han et al., 2016; Nyman & Szymczynska, 2016), connection to others (A. Han et al., 2016), feeling valued (Goldberg et al., 2002; Harmer & Orrell, 2008) and a sense of purpose (Eakman, 2013; Goldberg et al., 2002; Gori et al., 2001; Nyman & Szymczynska, 2016; Palacios-Cena et al., 2016; Phinney et al., 2007). For people with dementia, involvement in ‘meaningful activity’ may also provide a sense of continuity and normality in life despite changes and declining health (Edvardsson et al., 2010; A. Han et al., 2016; Milte et al., 2016; Phinney et al., 2007; Roland & Chappell, 2015). Participating in ‘meaningful activity’ suited to individual abilities can provide a sense of achievement and promote self-esteem (Edvardsson et al., 2010). A ‘meaningful activity’ provides something to look forward to and results in increased participation (A. Han et al., 2016; Harmer & Orrell, 2008; Phinney et al., 2007; Roland & Chappell, 2015; Smith et al., 2009). Associated decreases in depression, agitation and dementia-related behaviours have also been seen (Gori et al., 2001; Phinney et al., 2007; Smith et al., 2009). Participation in ‘meaningful activity’ is thought to improve physical health but may also result in an increase in falls among older adults who are more active (Palacios-Cena et al., 2016; Phinney et al., 2007; Roland & Chappell, 2015). Overall, it has been suggested that participation in ‘meaningful activity’ can potentially result
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in improved quality of life (A. Han et al., 2016; Harmer & Orrell, 2008; Phinney et al., 2007; Roland & Chappell, 2015).
Empirical Referents
Empirical referents relate directly to the defining attributes and identify how the presence of the concept can be recognised and measured in practice (Walker & Avant, 2011). The empirical referents for ‘meaningful activity’ for older adults with dementia include:
Enjoyment of the activity either in anticipation of participation, while participating in the activity or enjoyment of the outcome. Enjoyment can be expressed verbally or through facial and bodily expressions such as smiling, laughing, touching, singing or an open arm gesture (Albert, Del Castillo-Castaneda, Sano, & Jacobs, 1996) and has recently been quantified using Csikszentmihalyi’s (1993) ‘flow state’ concept (Payne et al., 2011).
The individual has the physical and cognitive abilities to fully participate in the activity or is enabled to participate with the support of a carer. In this case, the carer understands the individual’s abilities and can identify appropriate activities, adapt activities and provide the required level of assistance to ensure participation is a positive experience.
Participation in the activity allows the individual to work towards achieving a personally relevant goal.
An activity that is engaging holds the attention of the individual as they participate in it and they are not easily distracted. A deep level of engagement can be difficult to measure (Csikszentmihalyi, 1993). Engagement in activities has previously been measured in people with dementia using primarily temporal and/or attention to task parameters, such as time spent on task, level of attention, and including the intensity of engagement, e.g. dozing, not engaged, passively engaged and actively engaged (Cohen-Mansfield, Dakheel-Ali, & Marx, 2009; Kolanowski et al., 2006). Various dimensions of engagement that can be readily observed and measured in people with dementia include emotional, verbal, visual, behavioural and collective engagement as well as signs of agitation (Jones, Sung, & Moyle, 2015).
The activity is closely related to an aspect of the individual’s identity.
The empirical referents of ‘meaningful activity’ can be recognized and measured by the self-report of the individual participating in the activity or observation and assessment by others.
Definition and Conceptual Model of ‘Meaningful Activity’
Using the defining attributes identified in the existing literature ‘meaningful activity’ can be conceptualised as: those activities which engage the individual and provide a sense of enjoyment. Specific activities will be different for each individual as they will be suited to their unique interests, abilities and goals and express an aspect of their identity. A Meaningful Activity for Older Adults Living with Dementia Model is proposed below, illustrating the defining attributes, antecedents and consequences identified for this concept
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(Figure 2). The central part of the model presents the five defining attributes of ‘meaningful activity’ identified from the literature using the specific term. The attributes are displayed as a series of overlapping circles and the space where all five circles overlap represents an activity where all five attributes are present, a paradigmatic example (Walker & Avant, 2011) of a ‘meaningful activity’. The first box in the model displays the antecedents required for people living with dementia to participate in ‘meaningful activities’ as identified in the literature. A range of factors related to the individual as well as opportunities for activity are mediated by adaptation and enablement. Lastly, the model presents a range of positive consequences of participating in ‘meaningful activity’ as drawn from the literature, including increased activity participation and improved health. Figure 2: ‘Meaningful Activity’ for Older Adults Living with Dementia Model
Discussion
The aims of this concept analysis were to explore the attributes of ‘meaningful activity’ in relation to people with dementia, develop a definition of the concept and propose a conceptual model depicting the factors that influence the ability of people with dementia to participate in ‘meaningful activity’ and potential outcomes of that participation. The review of literature explicitly using the term ‘meaningful activity’ identified five key elements of ‘meaningful activity’: enjoyable, suited to the individual’s interests and abilities, related to a personally relevant goal, engaging and reinforces or expresses an aspect of an individual’s identity. As
illustrated in the model, that literature suggests that a range of factors contribute to participation in ‘meaningful activity’. These include a sense of identity, adequate physical and cognitive abilities, the availability of activities and resources. For people with dementia, adaptation, enablement and familiarity facilitate participation. Through participation in ‘meaningful activity’, people with dementia may experience improved health and quality of life. The concept analysis built on research explicitly using the term ‘meaningful activity’. Twenty-nine studies were located that used the term with reference to a variety of populations and contexts, with people with dementia being the most frequently studied using the term. Despite this broad use of the term in research, the lack of a clear and consistent definition of ‘meaningful activity’ was a conspicuous gap in the literature, hindering knowledge growth in the field (Conti et al., 2008; Eakman, 2011; Mansbach et al., 2017). This concept analysis has drawn on and synthesised the literature using the term ‘meaningful activity’ to develop a more comprehensive understanding of what makes activities meaningful for older adults with dementia. Our understanding of the concept ‘meaningful activity’ can be developed further by linking it to literature in the field of dementia that, while not explicitly using the term, nevertheless examines elements of its definition, such as ‘tailored’, ‘individualised’ or ‘preferred’ activities (Table 2). The literature on preferred activities has identified similarities between current preferred activities and past preferred activities of people with dementia (Cohen-Mansfield et al., 2017). This may be related to enjoying similar activities or the link to past and ongoing identity that activities can provide. For example, gender roles and identity may influence preferred and ‘meaningful activities’ as cooking has been reported as a preferred activity more often for women than men with dementia while physical games were reported as a preferred activity more often for men (Cohen-Mansfield et al., 2017). Tailored or individualised activities for people with dementia typically focus on ensuring that activities are either suited to the abilities or interests of the person or both abilities and interests (Gitlin et al., 2009; Kolanowski et al., 2011; Van Haitsma et al., 2015). While the impact on the meaning of an activity is unclear, individualised activities that align with either a person’s interests or abilities have a positive impact on agitation, other dementia related behaviour changes and affect (Han et al., 2016b). In relation to ‘meaningful activities’ being suited to the person, aligning with their interests may be more important than having the physical or cognitive ability to participate. Activities that were suited to either interests alone or interests and abilities were found to have a greater impact than activities that aligned with abilities only (Han et al., 2016b). The findings of this concept analysis help to place ‘meaningful activity’ within a network of related concepts (Table 2). Activities being ‘tailored’ or ‘individualised’ are important to contribute to the meaning of activities. However, analysis of how ‘meaningful activity’ is used and understood as a complete term indicates that this in only part of ‘meaningful activity’. This concept analysis has identified other aspects that need to be considered when determining activities for individuals. For example, also considering how the activity may be related to a goal for the individual and how participation may allow them to work towards or achieve that goal. Many of the studies exploring tailored or individualised activities for people living with dementia focus on activities that have been prescribed for the individual and involve one-on-one participation (Cohen-Mansfield et al., 2017; Gitlin et al., 2008; Kolanowski et al., 2011). Organised group activities could also be meaningful. While activities need to be suited to the individual’s skills, abilities and preferences the activities do not necessarily need to be actively individualised or tailored for that person for every activity on every occasion.
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Table 2: ‘Meaningful activity’ and other activity related terms Term describing activity Conceptual definition Qualified by Individualised (Van Haitsma et al., 2015)
Designed for, and provided to, a single person
Content, complexity and pace determined on the basis of abilities and interests.
Tailored (Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski et al., 2011; Mohler et al., 2018)
Prescribed for an individual to address wellbeing and dementia related behaviour changes
Determined on the basis of identified interests and abilities.
Preferred (Cohen-Mansfield et al., 2017)
Selected over other available options and stated by the person as ‘preferred’ or a ‘preference’
Liked or enjoyed more than another activity.
Purposeful (Dementia Australia, 2019)
Resulting in an outcome or product
Not perceived as a waste of time or useless.
Meaningful Having meaning to the person
Determined on the basis of identified interests, abilities, goals and identity. The activity is enjoyed and engaging.
In applying the findings of this concept analysis in the context of the lives of older adults with dementia, the potential stage-specific nature of ‘meaningful activity’ needs to be considered. Research suggests that activity preferences do not change following a diagnosis of dementia with participation in activities, including ‘meaningful activities’, providing a sense of continuity (Phinney et al., 2007). However, the declining abilities associated with progressive dementia mean that the experience of activity participation will inevitably change (Phinney et al., 2007). While a pure example of a ‘meaningful activity’ will contain elements of each of the five defining attributes, it is possible that the importance of each attribute varies across the stages of dementia. In a study involving family carers of people with dementia living in the community, the majority of carers of people with mild dementia reported that activity participation was important for maintaining a sense of identity (Roland & Chappell, 2015). This was less frequently raised by those caring for people with moderate or severe dementia. Family carers focused on the need for activities to be engaging for people with moderate dementia and pleasurable for those with severe dementia. These reports are reflected in activity plans written by occupational therapists for people living with dementia in the community (Regier, Hodgson, & Gitlin, 2017). Goal-related activities were typically planned for those with mild dementia, occasionally for those with moderate dementia and rarely for people with severe dementia. Expectations of engagement also varied by dementia stage with the length of time engaged in the activity declining as dementia progressed. These changes may also follow activity related limitations and challenges for people with dementia associated with changes to living situation such as moving to an RACF (Phinney et al., 2007). The antecedents of ‘meaningful activity’ are also likely to be stage-specific with changing abilities, opportunities and support required. While this concept analysis identified several key elements of ‘meaningful activity’, methods for including these elements in activities for people with dementia are unclear. For example, continuity theory suggests that maintaining consistent activity patterns into older adulthood fosters successful ageing (Atchley, 1999; Conti et al., 2008; Nimrod & Kleiber, 2007). From
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this perspective, activities an individual found meaningful in the past will continue to have meaning for them as they age (Conti et al., 2008), making it essential to understand the individuals past activity interests. However, it has also been suggested that this may not be the optimal approach, particularly for people with dementia, as insight into their deteriorating abilities may diminish the meaning of previously ‘meaningful activities’ (Conti et al., 2008; Harmer & Orrell, 2008). The approach may also limit activity opportunities for people with dementia (Du Toit et al., 2018). Those with more severe dementia may not recognise the activities as being a source of meaning. This has implications for practice for those who support and enable those with dementia to participate in ‘meaningful activities’. While it is important to consider activities an individual previously found meaningful, opportunities for participation in ‘meaningful activities’ should not be limited to those activities. Many RACFs have activity programs and coordinators as an efficient and cost-effective way to provide activity opportunities for residents (Powers, 2003). Despite this, a lack of ‘meaningful activities’ and feelings of boredom amongst residents are commonly reported in the literature (Edvardsson, Petersson, Sjogren, Lindkvist, & Sandman, 2014; Harmer & Orrell, 2008; Palacios-Cena et al., 2016; Thomas, O'Connell, & Gaskin, 2013). Palacios-Cena et al (2016) suggest that this is because many of the organised activities do not account for individual preferences and needs. These authors found that, across seven RACFs in Spain, the activity programs were targeted at residents with high levels of dependency, leading to frustration for residents with fewer impairments. Therefore, despite the intentions of RACF staff to provide residents with activity opportunities these activities need to be targeted towards the needs of individuals. Importantly, participation in ‘meaningful activity’ may have a greater impact on wellbeing and quality of life than more extensive involvement in activities that are not perceived as meaningful by the individual (Eakman et al., 2010b). This concept analysis has confirmed that ‘meaningful activity’ is highly individual, with older adults emphasising different aspects of what makes an activity meaningful for them compared to what their carers thought they would find meaning in. In particular, older adults focused on the goal of contributing to others through their activity participation while their carers perceived maintenance or improvement in physical health as a key reason for participation. These findings have important implications given the enabling role of staff and family carers in identifying ‘meaningful activity’ for individuals and supporting them to engage in these activities (Harmer & Orrell, 2008; Roland & Chappell, 2015). This role makes it important for carers to seek a deep understanding of activity participation and reasons for participation among individuals (Du Toit et al., 2018; Han et al., 2016a). For example, someone may find painting to be a ‘meaningful activity’ because it is an artistic expression while for someone else it is meaningful as a weekly activity with a friend (Du Toit et al., 2018). Understanding this will help carers identify and promote participation in ‘meaningful activity’.
Limitations
This review of the ‘meaningful activity’ literature has identified several gaps in our current understanding of the concept. As this concept analysis is based on the literature explicitly using the term, these gaps limit the ability of the current analysis to comprehensively guide the planning and provision of ‘meaningful activity’ for this group without further research. The defining attributes identified here suggest a cognitive element to understanding the activity, its link to personal identity and having a reason for participating in it. The relevance of these aspects of the concept of ‘meaningful activity’ for people with severe dementia is unclear. Further research is required to explore what ‘meaningful activity’ means for people with
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varying levels of dementia severity. The proposed model is also based on the existing ‘meaningful activity’ literature, which is predominantly qualitative. Quantitative studies exploring the effect of other types of tailored or individualised activities have shown decreased expression of BPSD and increased pleasure and alertness in people with dementia as a result of participating in these activities (Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski et al., 2011; Van Haitsma et al., 2015). Quantitative studies reviewed in this concept analysis also show increased alertness and interest, improved QoL and decreased agitation (Conti et al., 2008; Goldberg et al., 2002; Gori et al., 2001). However, these studies use a limited definition of ‘meaningful activity’, not including all of the defining attributes identified in this analysis. Intervention studies are needed to investigate the outcomes of participating in activities that fit the more comprehensive understanding of the characteristics of ‘meaningful activity’ as illustrated in the model. Despite these limitations, this concept analysis provides important insights that contribute to moving discussion and the literature forward in this area.
Conclusions The purpose of this concept analysis was to examine the ‘meaningful activity’ literature to identify the attributes, antecedents and consequences of the concept as they relate to people with dementia. This synthesis of the existing literature on ‘meaningful activity’ has identified the key defining attributes of the concept. A ‘meaningful activity’ is one which is enjoyable and engaging. It is closely linked to an individual’s goals and sense of identity while at the same time being appropriate for their physical and cognitive abilities. Antecedents of ‘meaningful activity’ can relate to the individual, such as their sense of identity and abilities or external factors such as activity opportunities and resources to enable participation. Engagement in ‘meaningful activity’ is thought to contribute positively towards an individual’s psychosocial and physical wellbeing. This concept analysis provides valuable clarification and direction for researchers, policy makers and health professionals interested in researching, planning and delivering person-centred services and care in this growing area. Those involved in supporting and providing care for people with dementia should consider each of the attributes found through this concept analysis when identifying ‘meaningful activities’ for individuals and when encouraging and facilitating participation in them.
Author contributions
Study design: LT, EB; data collection and analysis: LT; interpretation: LT, EB; drafting the manuscript: LT; critical review of the manuscript: EB; final approval: LT, EB
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Appendix 2
HREC Approval
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Appendix 3
Participant information sheets and consent forms
PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT – Resident –
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521 RESEARCH TEAM Principal Researcher: Mrs Laura Tierney PhD student Associate Researchers:
Prof Elizabeth Beattie Principal Supervisor
Dr Elaine Fielding Associate Supervisor Dr Margaret MacAndrew Associate Supervisor Faculty of Health, Queensland University of Technology (QUT) Dr Kathleen Doherty External Supervisor Faculty of Health, University of Tasmania
DESCRIPTION This research project is being undertaken as part of a PhD study by Laura Tierney. The purpose of this research project is to understand what makes activities meaningful to you. You are invited to participate in this research project because we are interested in hearing about what kinds of activities are important to you. PARTICIPATION A researcher will come to visit you. That person will ask you some questions about how you feel and what you do during the day. This will take about 1 hour of your time. We would also like to see what a typical day is like for you so a researcher may observe your activities for a few five-minute periods. The researcher will also talk to one member of your family who visits you frequently. We will also record information from your medical record such as your age and how long you have lived here. All your responses and information are coded with a number so they cannot be linked to you. Your participation in this research project is entirely voluntary. If you do agree to participate you can choose to stop at any time without comment or penalty. You just need to tell us that you no longer want to take part. Your decision to participate or not participate will in no way impact your current or future relationship with QUT, the University of Tasmania or where you live. EXPECTED BENEFITS It is expected that this research project may not benefit you directly. However, the information collected may benefit the lives of other people living in residential aged care.
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RISKS There are some minor risks associated with your participation in this research project. You might get tired during the interview. You might get upset when answering the questions. You can ask for rest breaks if you need them or to stop the interview if you don’t want to continue. If you do become upset, you may contact the Alzheimer’s Australia National Dementia Hotline on 1800 100 500 for private and confidential counselling. An independent counselling service will also be available through the facility if you need their support. You can contact them by calling [insert details]. PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. Any information collected as part of this research project will be stored securely. CONSENT TO PARTICIPATE If you agree to participate in this research, please sign the consent form given to you by the researcher. QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH PROJECT If you have any questions or require further information, please contact one of the listed researchers: Laura Tierney [email protected] 03 6226 4780(located in Tasmania) Elizabeth Beattie [email protected] 07 3138 3389 (located in Queensland) CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE RESEARCH PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the research project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.
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CONSENT FORM FOR QUT RESEARCH PROJECT –Resident –
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521 RESEARCH TEAM Laura Tierney [email protected] 03 6226 4780 Elizabeth Beattie [email protected] 07 3138 3389 Elaine Fielding [email protected] 07 3138 5772 Margaret MacAndrew [email protected] 07 3138 5956 Kathleen Doherty [email protected] 03 6226 4752 STATEMENT OF CONSENT By signing below, you are indicating that you:
Have read and understood the information document regarding this research project.
Have had any questions answered to your satisfaction.
Understand that if you have any additional questions you can contact the research team.
Understand that you are free to withdraw without comment or penalty.
Understand that if you have concerns about the ethical conduct of the project you can contact the Research Ethics Advisory Team on 07 3138 5123 or email [email protected].
Agree that your medical record can be accessed for anonymous information.
Agree to participate in the research project. Please tick the relevant box below:
I agree for the interview to be audio recorded. I do not agree for the interview to be audio recorded.
Name
Signature
Date PLEASE RETURN THE SIGNED CONSENT FORM TO THE RESEARCHER.
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PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT – Family Member Interview and Proxy Consent for Resident –
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521 RESEARCH TEAM Principal Researcher: Mrs Laura Tierney PhD student Associate Researchers:
Prof Elizabeth Beattie Principal Supervisor
Dr Elaine Fielding Associate Supervisor Dr Margaret MacAndrew Associate Supervisor Faculty of Health, Queensland University of Technology (QUT) Dr Kathleen Doherty External Supervisor Faculty of Health, University of Tasmania
DESCRIPTION This research project is being undertaken as part of a PhD study by Laura Tierney.
The purpose of this research project is to understand ‘meaningful activity’ in the context of the lives of people with dementia in residential aged care facilities. The research will explore what makes activities meaningful for residents and the potential impact of participation in these activities on resident quality of life from the perspective of residents, their family members and facility staff. Your input will also help us understand what assists or prevents participation in meaningful activities by your family member.
You have been identified as the authorised representative who makes decisions with and/or on behalf of your family member. You are invited to provide permission for your family member to participate in this research project if he/she is unable to provide their own consent. You are also invited to participate in this research project because you are a close family member of a resident with dementia. PARTICIPATION The research project entails collection of information about your family member in the following manner. Your family member will be invited to participate in an interview to explore their perspective on what makes activities meaningful to them.
Questions will include:
Tell me about some of the things you do during the day.
What makes an activity meaningful to you?
They will also be asked some questions about how they rate their quality of life and various aspects of their health. This will take a maximum of 60 minutes of their time. Your family member’s medical record will also be reviewed to gather demographic information such as their age, gender, length of stay and care level. We will also talk
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to a staff member who regularly cares for your family member to gather information about their health and the care they receive.
We may also ask you if we can observe your family member for a series of eight brief five minute periods over the course of one week. Your family member may be chosen to be observed with your permission. These observations will be unobtrusive with the researcher not interfering with your family members’ usual activities or care or observing during personal care. All information collected about your family member will be coded with a number, meaning no information can be matched to their name.
Your participation will involve an audio recorded interview at your facility or over the phone that will take approximately 30 minutes of your time and focus on what you think makes activities meaningful to your family member.
Questions will include:
What do you think makes activities meaningful to your family member?
What do you think helps your family member to participate in these kinds of activities? Your participation and your family members’ participation in this research project is entirely voluntary. If you do agree to participate you can withdraw from the research project without comment or penalty at any time. If you withdraw within 2 weeks after your interview, on request any identifiable information already obtained from you will be destroyed. Your decision to participate or not participate will in no way impact upon your current or future relationship with QUT, the University of Tasmania or the aged care facility in which your family member resides.
EXPECTED BENEFITS
It is expected that this research project will not benefit you directly. However, it may benefit aged care facility residents as a better understanding of meaningful activity will help residential aged care facilities provide opportunities and support for residents with dementia to participate in these activities.
RISKS
There are no risks beyond normal day-to-day living associated with your participation in this research project.
There are minimal risks associated with your family members’ participation in this research project. These include fatigue caused by the duration of interviews and emotional distress associated with interview questions. To minimise and manage these risks, the scheduling of the interview will be flexible to suit your family member’s needs and breaks during the interview will be offered if necessary.
QUT provides for limited free psychology, family therapy or counselling services (face-to-face only) for research participants of QUT research projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counselling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant.
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Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support.
The Alzheimer’s Australia National Dementia Helpline is a free confidential information and support service for anyone who has been diagnosed with dementia, knows someone with dementia, works with people with dementia or someone who simply wants to know more. The Helpline operates during business hours on 1800 100 500. For participants in Tasmania, the Alzheimer’s Australia Tasmania Dementia and Memory Community Centre can provide support on 03 6279 1100. Alternatively, an independent counselling service will also be available through the facility should you require further support. You can contact this service via the following: [insert details] PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. As the research project involves an audio recording:
You will have the opportunity to verify your comments and responses prior to final inclusion.
The audio recording will be destroyed 5 years after the last publication. The audio recording will not be used for any other purpose. Only the named researchers will have access to the audio recording. It is possible to participate in the research project without being audio recorded.
Any data collected as part of this research project will be stored securely as per QUT’s Management of research data policy. CONSENT TO PARTICIPATE We would like to ask you to sign a written consent form (enclosed) to confirm your agreement to participate. QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH PROJECT If you have any questions or require further information, please contact one of the listed researchers: Laura Tierney [email protected] 03 6226 4780 (located in Tasmania) Elizabeth Beattie [email protected] 07 3138 3389 (located in Queensland) CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE RESEARCH PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the research project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.
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CONSENT FORM FOR QUT RESEARCH PROJECT – Family Member Interview and Proxy Consent for Resident –
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521 RESEARCH TEAM Laura Tierney [email protected] 03 6226 4780 Elizabeth Beattie [email protected] 07 3138 3389 Elaine Fielding [email protected] 07 3138 5772 Margaret MacAndrew [email protected] 07 3138 5956 Kathleen Doherty [email protected] 03 6226 4752 STATEMENT OF CONSENT By signing below, you are indicating that you: Have read and understood the information document regarding this research project. Have had any questions answered to your satisfaction. Understand that if you have any additional questions you can contact the research team. Understand that you are free to withdraw without comment or penalty. Understand that if you have concerns about the ethical conduct of the research project
you can contact the Research Ethics Advisory Team on 07 3138 5123 or email [email protected].
Are the authorised representative who is able to make decisions with and/or on behalf of [resident name].
Agree to participate in the project (an interview). Agree to [resident name] participating in the project (which may include an interview and
unobtrusive observations). Agree to the researchers accessing [resident name] medical record and discussing their
health and care with a staff member. Please tick the relevant box below:
I agree for the interview to be audio recorded. I do not agree for the interview to be audio recorded.
Name
Signature
Date
PLEASE RETURN THE SIGNED CONSENT FORM TO THE RESEARCHER.
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PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT – Staff Informant Questionnaire –
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521 RESEARCH TEAM Principal Researcher: Mrs Laura Tierney PhD student Associate Researchers:
Prof Elizabeth Beattie Principal Supervisor
Dr Elaine Fielding Associate Supervisor Dr Margaret MacAndrew Associate Supervisor Faculty of Health, Queensland University of Technology (QUT) Dr Kathleen Doherty External Supervisor Faculty of Health, University of Tasmania
DESCRIPTION This research project is being undertaken as part of a PhD study by Laura Tierney. The purpose of this research project is to understand ‘meaningful activity’ in the context of the lives of people with dementia in residential aged care facilities. The research will explore what makes activities meaningful and the potential impact of participation in these activities on resident quality of life from the perspective of residents, their family members and facility staff. Your input will also help us understand the quality of life and clinical status of one of the residents participating in this study who is under your care. You are invited to consider participating in this research project because you have been identified as providing care for one of the participating residents. It is important that you understand that your involvement in this study is voluntary. While we would be pleased to have you participate, we respect your right to decline. There will be no consequences to you if you decide not to participate and this will not affect you in any way. If you decide to discontinue participation at any time, you may do so without providing an explanation or incurring penalty. PARTICIPATION Your participation will involve helping one of the researchers answer questions regarding your understanding of an individual resident’s level of depression, agitation, degree of wandering behaviours and nutritional intake. This will take approximately 60 minutes of your time. You will need to be able to comfortably speak and understand English to answer these questions. While every effort will be made to schedule a time within normal work hours you may be asked to participate outside normal work hours. If the time selected doesn’t suit you, you are free to withdraw. Your participation in this research project is entirely voluntary. If you do agree to participate,
322
you can withdraw from the research project at any time without comment or penalty. Your decision to participate or not participate will in no way impact upon your current or future relationship with QUT, the University of Tasmania or your facility. EXPECTED BENEFITS It is expected that this research project will not benefit you directly. However, it may benefit aged care facility residents as a better understanding of meaningful activity will help residential aged care facilities provide opportunities and support for residents with dementia to participate in these activities. RISKS There are no risks beyond normal day-to-day living associated with your participation in this research project. However, QUT provides for limited free psychology, family therapy or counselling services (face-to-face only) for research participants of QUT research projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counselling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant. Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support. The Alzheimer’s Australia National Dementia Helpline is a free confidential information and support service for anyone who has been diagnosed with dementia, knows someone with dementia, works with people with dementia or someone who simply wants to know more. The Helpline operates during business hours on 1800 100 500. For participants in Tasmania, the Alzheimer’s Australia Tasmania Dementia and Memory Community Centre can provide support on 03 6279 1100. Alternatively, an independent counselling service will also be available through the facility should you require further support. You can contact this service via the following: [insert details] PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. Any data collected as part of this research project will be stored securely as per QUT’s Management of research data policy. CONSENT TO PARTICIPATE We would like to ask you to sign a written consent form to confirm your agreement to participate. QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH PROJECT If you have any questions or require further information, please contact one of the listed researchers:
Laura Tierney [email protected] 03 6226 4780 (located in Tasmania) Elizabeth Beattie [email protected] 07 3138 3389 (located in Queensland)
323
CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE RESEARCH PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the research project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.
324
CONSENT FORM FOR QUT RESEARCH PROJECT Staff Informant Questionnaire
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521 RESEARCH TEAM Laura Tierney [email protected] 03 6226 4780 Elizabeth Beattie [email protected] 07 3138 3389 Elaine Fielding [email protected] 07 3138 5772 Margaret MacAndrew [email protected] 07 3138 5956 Kathleen Doherty [email protected] 03 6226 4752 STATEMENT OF CONSENT By signing below, you are indicating that you:
Have read and understood the information document regarding this research project.
Are able to comfortably speak and understand English.
Have had any questions answered to your satisfaction.
Understand that if you have any additional questions you can contact the research team.
Understand that you are free to withdraw without comment or penalty.
Understand that if you have concerns about the ethical conduct of the research project you can contact the Research Ethics Advisory Team on 07 3138 5123 or email [email protected].
Agree to participate in the research project.
Name
Signature
Date
PLEASE RETURN THE SIGNED CONSENT FORM TO THE RESEARCHER.
325
PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT – Staff Focus Group –
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521 RESEARCH TEAM Principal Researcher: Mrs Laura Tierney PhD student Associate Researchers:
Prof Elizabeth Beattie Principal Supervisor
Dr Elaine Fielding Associate Supervisor Dr Margaret MacAndrew Associate Supervisor Faculty of Health, Queensland University of Technology (QUT) Dr Kathleen Doherty External Supervisor Faculty of Health, University of Tasmania
DESCRIPTION
This research project is being undertaken as part of a PhD study by Laura Tierney.
The purpose of this research project is to understand ‘meaningful activity’ in the context of the lives of people with dementia in residential aged care facilities. The research will explore what makes activities meaningful and the potential impact of participation in these activities on resident quality of life from the perspective of residents, their family members and facility staff. Your input will also help us understand what aids or prevents participation in meaningful activities by residents under your care.
You are invited to consider participating in this research project because you are a staff member at one of the participating residential aged care facilities and involved in providing care and/or activity support for residents with dementia. It is important that you understand that your involvement in this study is voluntary. While we would be pleased to have you participate, we respect your right to decline. There will be no consequences to you if you decide not to participate, and this will not affect you in any way. If you decide to discontinue participation at any time, you may do so without providing an explanation or incurring penalty. PARTICIPATION
Your participation will involve an audio recorded focus group at your facility that will take approximately 60 minutes of your time.
Questions will include:
What do you think makes activities meaningful to residents?
How would you know if an activity a resident is doing is meaningful to them? You will need to be able to comfortably speak and understand English to participate in this focus group discussion.
326
While every effort will be made to schedule a time within normal work hours you may be asked to participate outside normal work hours. If the time selected doesn’t suit you, you are free to withdraw.
Your participation in this research project is entirely voluntary. If you do agree to participate, you can withdraw from the research project without comment or penalty. You can withdraw anytime during the focus group. If you withdraw within 2 weeks after the focus group, on request any identifiable information already obtained from you will be destroyed. Your decision to participate or not participate will in no way impact upon your current or future relationship with QUT, the University of Tasmania, or your facility.
EXPECTED BENEFITS
It is expected that this research project will not benefit you directly. However, it may benefit aged care facility residents as a better understanding of meaningful activity will help residential aged care facilities provide opportunities and support for residents with dementia to participate in these activities.
RISKS
There are no risks beyond normal day-to-day living associated with your participation in this research project.
However, QUT provides for limited free psychology, family therapy or counselling services (face-to-face only) for research participants of QUT research projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counselling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant.
Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support. The Alzheimer’s Australia National Dementia Helpline is a free confidential information and support service for anyone who has been diagnosed with dementia, knows someone with dementia, works with people with dementia or someone who simply wants to know more. The Helpline operates during business hours on 1800 100 500.
For participants in Tasmania, the Alzheimer’s Australia Tasmania Dementia and Memory Community Centre can provide support on 03 6279 1100.
Alternatively, an independent counselling service will also be available through the facility should you require further support. You can contact this service via the following: [insert details]
PRIVACY AND CONFIDENTIALITY
All comments and responses will be treated confidentially unless required by law.
As the research project involves an audio recording:
You will have the opportunity to verify your comments and responses prior to final inclusion.
The audio recording will be destroyed 5 years after the last publication. The audio recording will not be used for any other purpose. Only the named researchers will have access to the audio recording.
327
It is not possible to participate in the research project without being audio recorded.
Any data collected as part of this research project will be stored securely as per QUT’s Management of research data policy.
CONSENT TO PARTICIPATE
We would like to ask you to sign a written consent form to confirm your agreement to participate.
QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH PROJECT
If you have any questions or require further information, please contact one of the listed researchers:
Elizabeth Beattie [email protected] 07 3138 3389 (located in Queensland)
CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE RESEARCH PROJECT
QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the research project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT.
PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.
328
CONSENT FORM FOR QUT RESEARCH PROJECT Staff Focus group
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521 RESEARCH TEAM Laura Tierney [email protected] 03 6226 4780 Elizabeth Beattie [email protected] 07 3138 3389 Elaine Fielding [email protected] 07 3138 5772 Margaret MacAndrew [email protected] 07 3138 5956 Kathleen Doherty [email protected] 03 6226 4752 STATEMENT OF CONSENT By signing below, you are indicating that you:
Have read and understood the information document regarding this research project.
Are able to comfortably speak and understand English.
Have had any questions answered to your satisfaction.
Understand that if you have any additional questions you can contact the research team.
Understand that you are free to withdraw without comment or penalty.
Understand that if you have concerns about the ethical conduct of the research project you can contact the Research Ethics Advisory Team on 07 3138 5123 or email [email protected].
Understand that the research project will include an audio recording.
Agree to participate in the research project.
Name
Signature
Date
PLEASE RETURN THE SIGNED CONSENT FORM TO THE RESEARCHER.
329
Appendix 4
Measures used for RACF environment review
Environmental Audit Tool - EAT Time: Facility:
Unit: Observer: No. of residents when full:
Safety
N/A
NO
YES A
dd 1
if
Uno
btru
sive
Score
1. Is the garden secure, i.e. are residents prevented from getting over/under fence or out of the gate without the assistance of a staff member?
0 0 1 1 Saf1
2. If the front door leads out of the unit is it secure?
0 0 1 1 Saf2
3. Are all side doors leading out of the unit secure?
0 0 1 1 Saf3
4. Are bedroom windows restricted in the extent to which they open so that residents cannot climb out?
0 0 1 1 Saf4
5. Is the garden easily supervised from the point(s) where staff spend most of their time?
0 0 1 1 Saf5
6. Is there a way to keep residents who are not safe with knives and/or appliances out of the kitchen?
0 0 1 1 Saf6
7. If the kitchen is used by residents is there a lockable knife draw in the kitchen?
0 0 1 1 Saf7
8.
If the kitchen is used by residents is the stove a gas stove? 0 0 1 Saf7
9. If the kitchen is used by residents is there a master switch that can be turned off quickly? 0 0 1 Saf9
10. Is the temperature of the water from all taps accessible to residents limited so that it cannot scald? 0 0 1 Saf10
11. If residents are involved in meal preparation are the pots and pans used small enough for them to lift easily?
0 0 1 Saf11
12. Are all floor areas safe from being slippery when wet (water or urine)?
0 0 1 Saf12
13. Is the lounge room easily supervised from the point(s) where the staff spend most of their time?
0 0 1 1 Saf13
14. Are all areas used by residents well lit? 0 0 1 Saf14
Total Saftot
330
Size
10 or less 11-16 17-30 30+
Score
1. How many people live in the unit?
Score
3
Score
2
Score
1
Score
0 Size
Visual Access Features
Score
1. What proportion of confused residents can see their bedroom door from the lounge room?
N/A
0
Score 0
25%
Score
1
50%
Score
2
75%
Score
3
100%
Score
4 Vis1 2. What proportion of confused residents can see
the lounge room as soon as they leave their bedroom?
N/A
0
Score 0
25%
Score
1
50%
Score
2
75%
Score
3
100%
Score
4 Vis2 3. What proportion of confused residents can see
the dining room as soon as they leave their bedroom?
N/A
0
Score 0
25%
Score
1
50%
Score
2
75%
Score
3
100%
Score
4 Vis3 4. Can the exit to the garden be seen from the
lounge room? If there is more than 1 lounge room answer with reference to the one most used by most confused residents.
N/A
NO
Score 0
YES
Score 1 Vis4
5. Can the dining room be seen into from the lounge room? If there is more than 1 dining room or lounge room answer with reference to those used by most confused residents.
N/A
NO
Score 0
YES
Score 1 Vis5
6. Can the kitchen be seen into from the lounge room? If there is more than 1 lounge room answer with reference to the one used by most confused residents.
N/A
NO
Score 0
YES
Score 1 Vis6
7. Can the kitchen be seen into from the dining room? If there is more than 1 dining room answer with reference to the one used by most confused residents.
N/A
NO
Score 0
YES
Score 1 Vis7
331
Visual Access Features
Score
8. Can a toilet be seen from the dining room? If there is more than 1 dining room answer with reference to the one used by most confused residents.
N/A
NO
Score 0
YES
Score 1 Vis8 9. Can a toilet be seen from the lounge room?
(If there is more than 1 lounge room answer with reference to the one used by most confused residents.)
N/A
NO
Score 0
YES
Score 1 Vis9 10. Can the lounge room be seen into from the
point(s) where staff spend most of their time?
N/A
NO
Score 0
YES
Score 1 Vis10
Total Score vistot
Stimulus reduction features
Yes
No
Score
1. Does the doorbell attract the attention of the residents?
0 1
Stim1
2. Is the noise from the kitchen distracting for the residents?
0 1
Stim2
3. Are doors to cleaners’ cupboards, storerooms and other areas where residents may find danger easily seen (i.e. not hidden or painted to merge with the walls?)
0 1
Stim3
4. Is the wardrobe that the resident uses full of a confusing number of clothes? 0 1 Stim4
5. Are deliveries of food, linen etc. taken across public areas such as the lounge or dining room?
0 1
Stim5
6. Is there a public address, staff paging or call system in use that involves the use of loud speakers, flashing lights, bells etc?
0 1
Stim6
7. Is the front entry to the unit easily visible to the residents?
0 1
Stim7
8. Is the service entry (where food, linen etc is delivered to) easily visible to the residents?
0 1
Stim8
Score is number of NO responses
stimtot
332
Highlighting useful stimuli
NO
YES
Score
1. Is the dining room looked into from the lounge room or clearly marked with a sign or symbol?
0 1 High1
2. Is the lounge room either looked into from the dining room or clearly marked with a sign or symbol?
0 1 High2
3. Do bedrooms have a sign, symbol or display that identifies them as belonging to a particular individual?
0 1 High3
4. Are the shared bathrooms and/or toilets clearly marked with a sign, symbol or colour coded door? 0 1 High4
5. Is the kitchen either looked into from the lounge or dining room or clearly marked with a sign or symbol? 0 1 High5
6. Are toilets visible as soon as the toilet/bathroom door is opened? 0 1 High6
7. Is there a lot of natural lighting in the lounge room? 0 1 High7
8. Is the artificial lighting bright enough in all areas? 0 1 High8
9. Is the lighting free of glare, eg from bare bulbs, off shiny surfaces? 0 1 High9
Score is number of YES responses hightot
Provision for wandering and access to outside area
NO
YES
Score
1a Is there a clearly defined and easily accessible (i.e. no locked exit) path in the garden that guides the resident back to their starting point without taking them into a blind alley?
0 1 Wand1a
1b Does the external path allow the resident to see into areas that might invite participation in an appropriate activity other than wandering? 0 1 Wand1b
1c Is the path within a secure perimeter 0 1 Wand1c
1d Can this path be easily and unobtrusively surveyed by staff members? 0 1 Wand1d
1e Are there chairs or benches along the path where people can sit and enjoy the fresh air? 0 1
Wand1e
1f Are there both sunny and shady areas along the path? 0 1 Wand1f
1g Does the path take residents past a toilet? 0 1 Wand1g
2a
Is there a clearly defined path inside that takes the resident around furniture and back to their starting point without taking them into a blind alley? 0 1
Wand2a
2b Does the internal path allow the resident to see into areas that might invite participation in an appropriate activity other than wandering? 0 1 Wand2b
Score is number of YES responses Wandtot
333
Familiarity
Many
A few
None
Score
1. Are there any colours in the furnishings or the decoration that would not have been familiar to the majority of residents when they were 30 years old?
0 1 2
Fam1
2. Are there any taps, light switches, door knobs that are to be used by residents that are of a design that would not have been familiar to the majority of residents when they were 30 years old?
0 1 2
Fam2
3. Are there any pieces of furniture in the lounge room or the dining room that are of a design that would not have been familiar to the majority of residents when they were 30 years old?
0 1 2
Fam3
4. Are there any pieces of furniture in the bedrooms that are of a design that would not have been familiar to the majority of residents when they were 30 years old?
0 1 2
Fam4
5. How many residents have their own ornaments, photos in their bedroom 2 1 0
Fam5 6. How many residents have their own furniture in their bedroom
2 1 0 Fam6
Total Score Famtot
Privacy and Community
Score
1 Are there small areas (nooks) that provide opportunities for casual interaction and quiet chats?
None Score 0
1 Score 1
2 Score 2
3 or more
Score 3 Priv1
2 How many of these areas or nooks have views of pleasant or interesting scenes (outside, the living room, the nursing station)?
None Score 0
1 Score 1
2 Score 2
3 or more
Score 3 Priv2
3 Do the shared living areas support small group activities (4-6 people) without re-arranging the furniture?
N/A NO Score 1
YES Score 2 Priv3
4 Does the dining room provide opportunities for residents to eat in small groups (2-4)?
N/A NO Score 1
YES Score 2 Priv4
5 Does the dining area provide opportunities for people to eat alone?
N/A NO Score 1
YES Score 2 Priv5
Total Score Privtot
334
Community links
NO
YES
Score
1.
Is there an area or room somewhat removed from the main dining room where families can share meals with their relatives?
0 1 Com1
1a
Is this room/area domestic and familiar in nature, to reassure family members and friends and encourage them to visit and to participate in the care of the resident?
0 1 Com1b
Score is number of YES responses Comtot
Domestic Activity Record the percentage of residents who:
None
Up to 50%
More
Than 50%
Score
1. Have access to a kitchen 0 1 2 Dom1 2. Have a significant involvement in main meal preparation 0 1 2 Dom2 3. Have a significant involvement in making snacks or drinks 0 1 2 Dom3 4. Have a significant involvement in keeping bedroom clean and tidy 0 1 2 Dom4 5. Have a significant involvement in personal laundry 0 1 2 Dom5 6. Are involved in gardening 0 1 2 Dom6 7. Have constant and easy access to a lounge? 0 1 2 Dom7 8. Have constant and easy access to a dining room? 0 1 2 Dom8
Total Score Domtot
335
Summary of Scores
Possible Score Actual Score Percentage
Safety 22
Size 3
Visual Access 19
Stimulus Reduction 8
Stimulus Enhancement 9
Wandering and access outside 9
Familiarity 12
Privacy and community 12
Community access 2
Domestic activities 16
Total 112
Smith R, Fleming R, Chenoweth L, Jeon YH, Stein-Parbury J, Brodaty H. Validation of the Environmental Audit Tool in both purpose-built and non-purpose-built dementia care settings. Australasian Journal on Ageing. 2011;Online early:DOI: 10.1111/j.741-6612.2011.00559.x.
336
Pers
on-C
entr
ed E
nvir
onm
ent a
nd C
are
Ass
essm
ent T
ool
(PC
EC
AT
) B
urke
C, S
tein
-Par
bury
J, L
usco
mbe
G, C
heno
wet
h L.
Dev
elop
men
t and
test
ing
of th
e pe
rson
-cen
tere
d en
viro
nmen
t and
car
e as
sess
men
t too
l (PC
ECA
T). C
linic
al G
eron
tolo
gist
. 20
16;3
9(4)
. SE
CT
ION
A
Cha
ract
eris
tics o
f the
Hom
e or
Car
e U
nit.
1. In
dica
te w
heth
er th
e H
ome
or In
divi
dual
Car
e U
nit i
s bei
ng a
sses
sed
(Circ
le c
orre
ct re
spon
se).
Hom
e: Y
es /
No
Car
e U
nit:
Yes
/ N
o 2.
Ide
ntifi
catio
n co
de o
f the
hom
e/ca
re u
nit
Dat
e as
sess
men
t was
und
erta
ken_
3. W
hat i
s the
tota
l num
ber o
f peo
ple
who
can
live
in th
e ho
me
or c
are
unit
bein
g as
sess
ed?
4. H
ow m
any
peop
le p
erm
anen
tly li
ve in
the
hom
e or
car
e un
it on
the
day
of a
sses
smen
t?
5. H
ow m
any
peop
le a
re li
ving
in th
e ho
me
or c
are
unit
for r
espi
te o
n th
e da
y of
ass
essm
ent?
6.
H
ow m
any
peop
le h
ave
dem
entia
as t
heir
prim
ary
diag
nosi
s.
num
ber o
ut o
f
(tot
al n
umbe
r of p
eopl
e)
337
7. H
ow m
any
peop
le h
ave
a “h
igh
leve
l app
rova
l” (n
ursi
ng h
ome)
? 8.
How
man
y pe
ople
hav
e a
“low
leve
l app
rova
l” (h
oste
l)?
9. W
hat i
s the
tota
l num
ber o
f bed
room
s in
the
hom
e or
car
e un
it be
ing
asse
ssed
?
9.1
How
man
y ar
e si
ngle
bed
room
s?
9.2
How
man
y be
droo
ms a
ccom
mod
ate
two
peop
le?
9.3
How
man
y be
droo
ms a
ccom
mod
ate
thre
e +
peop
le?
9.4
How
man
y “c
oupl
es”
bedr
oom
s (ie
two
adjo
inin
g ro
oms w
ith a
n in
terc
onne
ctin
g do
or)
are
ther
e?
10.1
Wha
t is t
he ra
tio o
f toi
let t
o pe
ople
livi
ng in
the
hom
e or
car
e un
it?
hom
e or
car
e un
it.
10.2
Wha
t is t
he ra
tio o
f sho
wer
s to
peop
le li
ving
in th
e ho
me
or c
are
unit?
th
e h
ome
or c
are
unit.
num
ber o
f toi
lets
to
num
ber o
f sho
wer
s to
num
ber o
f peo
ple
livin
g in
the
num
ber o
f peo
ple
livin
g in
10.3
How
man
y en
suite
bat
hroo
ms t
o si
ngle
bed
room
s are
ther
e?
338
11.
Wha
t are
the
tota
l num
ber o
f pai
d ho
urs w
orke
d by
em
ploy
ed st
aff (
perm
anen
t, pa
rt-tim
e, c
ontra
ctua
l and
cas
ual)
each
wee
k in
eac
h of
the
follo
win
g ro
les?
Pe
rman
ent F
ull
Perm
anen
t Par
t C
ontra
cted
C
asua
l St
aff i
nvol
ved
in d
irect
car
e of
peo
ple
livin
g in
the
hom
e or
car
e un
it:
Tim
e Ti
me
Staf
f St
aff
11.1
C
are
co-o
rdin
ator
/ D
DO
N
11
.2
Reg
iste
red
nurs
e
11
.3
Enro
lled
nurs
e
11
.4
AIN
/ PC
A /
CSE
11
.5
Phys
ioth
erap
ist /
Phy
siot
hera
py A
id
11.6
D
iver
sion
al th
erap
ist/r
ecre
atio
n of
ficer
11
.7
Past
oral
car
e st
aff /
Wel
fare
staf
f
11
.8
Tota
l ho
urs
=
12
. In
the
mon
th p
rior t
o th
is a
sses
smen
t with
the
PCEC
AT
, wha
t was
the
tota
l num
ber o
f hou
rs w
orke
d b
y ag
ency
staf
f in
the
hom
e or
car
e un
it in
dire
ct c
are
role
s?
hour
s
13. H
ow m
any
nurs
es a
nd c
are
staf
f ha
ve re
sign
ed fr
om th
e ho
me
or c
are
unit
in th
e pa
st 6
mon
ths?
M
anag
er
Nur
ses (
RN
, EN
and
EEN
) C
are
staf
f (A
IN, P
CA
, CSE
)
339
SEC
TIO
N B
Dom
ain
1. O
rgan
isat
iona
l Cul
ture
Prin
cipl
es o
f Per
son-
Cen
tred
Car
e re
latin
g to
org
aniz
atio
nal
cultu
re
Acc
redi
tatio
n st
anda
rds (
Exp
ecte
d ou
tcom
es) r
elat
ing
to
orga
nisa
tiona
l cul
ture
C
omm
itmen
t of t
he o
rgan
isatio
n / h
ome
to a
cul
ture
whe
re th
e pe
rson
com
es fi
rst.
1.
3 Ed
ucat
ion
and
staf
f dev
elop
men
t
1.5
Plan
ning
and
lead
ersh
ip
1.
6 H
uman
reso
urce
man
agem
ent
1.
8 In
form
atio
n sy
stem
s
St
aff w
ork
prac
tices
ack
now
ledg
e, re
spec
t and
supp
ort t
he
uniq
uene
ss o
f the
per
son,
incl
udin
g th
eir c
ultu
re, b
ackg
roun
d, a
nd
care
nee
ds
2.
4 to
2.1
7 Ex
pect
ed o
utco
mes
(See
App
endi
x A
, p.
30 to
31)
3.4
to 3
.9 E
xpec
ted
outc
omes
(See
App
endi
x A
, p.
32)
M
anag
ers a
nd st
aff c
ontin
ually
impr
ove
prac
tice
to e
nhan
ce th
e lif
e of
the
pers
on, w
orki
ng in
con
sulta
tion
with
the
pers
on’s
fa
mily
/repr
esen
tativ
e.
1.
1, 2
.1, 3
.1 a
nd 4
.1 C
ontin
uous
impr
ovem
ent
1.
4 C
omm
ents
and
com
plai
nts
3.
4 Em
otio
nal s
uppo
rt
3.5
Inde
pend
ence
3.6
Priv
acy
and
dign
ity
3.
8 C
ultu
ral a
nd sp
iritu
al li
fe
3.
9 C
hoic
e an
d de
cisi
on m
akin
g
4.4
Livi
ng e
nviro
nmen
t
4.8
Cat
erin
g cl
eani
ng a
nd la
undr
y
St
aff
are
resp
ecte
d an
d su
ppor
ted
in th
eir r
ole/
s and
hav
e ac
cess
to a
ppro
pria
te tr
aini
ng a
nd p
rofe
ssio
nal d
evel
opm
ent
for t
he ro
le/s
.
1.
6 H
uman
reso
urce
man
agem
ent
1.
8 In
form
atio
n sy
stem
s
1.3,
2.3
, 3.3
and
4.3
Edu
catio
n an
d sta
ff d
evel
opm
ent
340
Dom
ain
1. O
rgan
isat
iona
l Cul
ture
R
ate
your
org
anis
atio
n’s c
urre
nt st
atus
rega
rdin
g a
Pers
on-C
entre
d C
are
cultu
re u
sing
the
scal
e be
low
. Th
e co
mm
ents
col
umn
can
be u
sed
to re
cord
any
act
ion
that
has
bee
n ta
ken
to a
chie
ve th
e sp
ecifi
c in
dica
tor.
0 =
Not
at a
ll 1
= So
met
imes
2
= A
gre
at d
eal
3 =
All
of th
e tim
e
Org
anis
atio
nal c
ultu
re i
ndic
ator
s tha
t sup
port
a p
erso
n-ce
ntre
d ap
proa
ch to
car
e R
espo
nse
Scor
e C
omm
ents
1.1
The
Hom
e’s M
issi
on, V
isio
n, V
alue
s Sta
tem
ent (
or si
mila
r) st
ates
a
com
mitm
ent t
o th
e m
eetin
g th
e un
ique
nee
ds o
f the
per
son
livin
g in
the
Hom
e or
Car
e U
nit.
A
The
Hom
e ha
s a p
olic
y re
latin
g to
the
use
of a
Per
son-
Cen
tred
Car
e ph
i loso
phy
that
is u
nder
pinn
ed b
y re
spec
t and
dig
nity
. 0
1 2
3
B
The
Hom
e ha
s pro
cedu
res o
utlin
ing
how
Per
son-
Cen
tred
Car
e is
pe
rfor
med
. 0
1 2
3
1.2
The
per
son
and
thei
r fa
mily
/rep
rese
ntat
ive
are
awar
e of
the
hom
e’s
com
mitm
ent t
o a
pers
on-c
entr
ed a
ppro
ach.
A
Prio
r to
adm
issi
on, t
he h
ome
prov
ides
info
rmat
ion
rega
rdin
g se
rvic
es a
nd
prac
tices
to th
e pe
rson
and
thei
r fam
ily/re
pres
enta
tive.
0
1 2
3
341
O
rgan
isat
iona
l cul
ture
ind
icat
ors (
cont
) R
espo
nse
Scor
e C
omm
ents
Res
pons
e Sc
ale:
0 =
Not
at a
ll; 1
= S
omet
imes
; 2
= A
gre
at d
eal;
3 =
All
of th
e tim
e
B
The
Hom
e’s H
andb
ook
stat
es a
pos
itive
com
mitm
ent t
o pr
ovid
ing
Pers
on-
Cen
tred
Car
e an
d st
ates
how
this
is p
rovi
ded
in th
e ho
me.
0
1 2
3
C
With
in th
e fir
st w
eek
follo
win
g ad
mis
sion
ther
e is
an
orie
ntat
ion
to th
e ho
me
and
its P
erso
n-C
entre
d se
rvic
es fo
r the
per
son
and
thei
r fa
mily
/repr
esen
tativ
e.
0 1
2 3
1.3
The
re is
reg
ular
con
sulta
tion
rega
rdin
g th
e pe
rson
’s in
divi
dual
car
e ne
eds a
nd p
refe
renc
es.
A
The
indi
vidu
al p
refe
renc
es a
nd d
esire
s of t
he p
erso
n ar
e ob
tain
ed p
rior t
o th
e de
velo
pmen
t of t
heir
Car
e Pl
an.
0 1
2 3
B
Rel
evan
t to
thei
r lev
el o
f cap
abili
ty, t
he p
erso
n an
d hi
s/he
r fa
mily
/repr
esen
tativ
e ar
e gi
ven
the
oppo
rtuni
ty to
col
labo
rate
with
staf
f in
de
term
inin
g al
l asp
ects
of t
he p
erso
n’s C
are
Plan
(in
pers
on o
r via
pho
ne).
0 1
2 3
C
Staf
f gai
n in
form
atio
n on
the
end-
of-li
fe b
elie
fs o
f the
per
son,
thei
r wis
hes
and
p ref
erre
d pr
actic
es a
nd w
hat i
s mea
ning
ful i
n th
eir l
ife.
0 1
2 3
D
Thro
ugho
ut th
eir s
tay
in th
e ho
me,
ther
e is
ong
oing
con
sulta
tion
with
the
pers
on a
nd/o
r the
ir fa
mily
/repr
esen
tativ
e pr
ior t
o ta
king
act
ion
for s
peci
fic
care
nee
ds.
0 1
2 3
342
O
rgan
isat
iona
l cul
ture
ind
icat
ors (
cont
) R
espo
nse
Scor
e C
omm
ents
Res
pons
e Sc
ale:
0 =
Not
at a
ll; 1
= S
omet
imes
; 2
= A
gre
at d
eal;
3 =
All
of th
e tim
e
E
Inde
pend
ent a
nd a
nony
mou
s fee
dbac
k is
soug
ht fr
om th
e fa
mily
/ re
pres
enta
tive
abou
t asp
ects
of c
are
they
obs
erve
. 0
1 2
3
1.4
Acc
ordi
ng to
thei
r ab
ility
, the
per
son
and
thei
r fa
mily
/rep
rese
ntat
ive
have
the
oppo
rtun
ity to
mak
e su
gges
tions
and
lodg
e a
com
plai
nt.
A
On
adm
issi
on to
the
hom
e, in
form
atio
n ab
out t
he c
ompl
aint
s and
su
gges
tion
syst
em o
utlin
ing
aven
ues a
vaila
ble,
pro
cess
, tim
efra
me
and
feed
back
is g
iven
to th
e pe
rson
and
thei
r fam
ily/re
pres
enta
tive.
0 1
2 3
B
The
hom
e se
eks i
ndep
ende
nt a
nd a
nony
mou
s fee
dbac
k fr
om fa
mili
es/
repr
esen
tativ
es a
bout
thei
r sat
isfa
ctio
n w
ith h
ow c
ompl
aint
s/su
gges
tions
are
ad
dres
sed.
0 1
2 3
1.5
Staf
f are
aw
are
of th
e or
gani
zatio
n’s c
omm
itmen
t to
prov
idin
g pe
rson
- ce
ntre
d ca
re se
rvic
es.
A
Staf
f pos
ition
des
crip
tions
hig
hlig
ht th
e re
spon
sibi
lity
to p
rovi
de p
erso
n-
cent
red
care
. 0
1 2
3
B
Staf
f orie
ntat
ion
fully
exp
lain
s prin
cipl
es o
f per
son-
cent
red
care
pra
ctic
es
and
how
thes
e ar
e ap
plie
d in
eve
ryda
y ca
re.
0 1
2 3
343
O
rgan
isat
iona
l cul
ture
ind
icat
ors (
cont
) R
espo
nse
Scor
e C
omm
ents
Res
pons
e Sc
ale:
0 =
Not
at a
ll; 1
= S
omet
imes
; 2
= A
gre
at d
eal;
3 =
All
of th
e tim
e
C
Staf
f ha
ve re
ceiv
ed tr
aini
ng in
per
son-
cent
red
care
as p
art o
f the
ir pr
ofes
sion
al d
evel
opm
ent.
0 1
2 3
D
Staf
f hav
e fo
rmal
ann
ual p
erfo
rman
ce a
ppra
isal
s to
iden
tify
pers
on-e
ntre
d sk
ill d
evel
opm
ent.
0 1
2 3
1.6
Man
ager
s and
staf
f dem
onst
rate
com
mitm
ent t
o pe
rson
-cen
tred
car
e.
A
Man
ager
s/se
nior
staf
f can
exp
lain
how
per
son-
cent
red
care
is im
plem
ente
d th
roug
h ca
re s
yste
ms.
0 1
2 3
B
Staf
f can
pro
vide
det
aile
d kn
owle
dge
of th
e ba
ckgr
ound
, nee
ds, d
esire
s and
pr
efer
ence
s of p
erso
ns th
ey re
gula
rly c
are
for.
0 1
2 3
C
Shift
ove
rlap
and
staf
f han
dove
rs o
ccur
whe
re a
ll st
aff r
ecei
ve u
p-to
-dat
e in
form
atio
n ab
out e
ach
pers
on’s
nee
ds a
nd th
eir c
urre
nt h
ealth
stat
us.
0 1
2 3
D
Ther
e ar
e op
portu
nitie
s at s
hift
hand
over
for s
taff
to d
iscu
ss w
ith e
ach
othe
r ho
w th
ey a
re im
plem
entin
g Pe
rson
-Cen
tred
Car
e.
0 1
2 3
E St
aff r
egul
arly
pro
vide
car
e se
rvic
es fo
r the
sam
e pe
rson
(for
a m
inim
um
perio
d of
3 m
onth
s).
0 1
2 3
344
O
rgan
isat
iona
l cul
ture
ind
icat
ors (
cont
) R
espo
nse
Scor
e C
omm
ents
Res
pons
e Sc
ale:
0 =
Not
at a
ll; 1
= S
omet
imes
; 2
= A
gre
at d
eal;
3 =
All
of th
e tim
e
F W
ork
prac
tices
are
suff
icie
ntly
flex
ible
to e
nabl
e st
aff t
o re
spon
d to
the
pers
on’s
nee
ds a
s the
y oc
cur.
0 1
2 3
G
Staf
f dem
onst
rate
that
they
ass
ess a
ll po
tent
ial r
easo
ns fo
r the
per
son’
s di
stre
ss.
0 1
2 3
H
Whe
n a
pers
on is
dis
tress
ed st
aff o
ffer
com
fort
in k
eepi
ng w
ith th
e pe
rson
’s
pref
eren
ces a
nd n
eeds
. 0
1 2
3
1.7
Staf
f’s e
ffor
ts in
thei
r va
riou
s rol
es a
re r
ecog
nize
d an
d va
lued
.
A
Staf
f con
firm
they
are
off
ered
the
educ
atio
nal s
uppo
rt sp
ecifi
c to
Per
son-
C
entre
d C
are
that
they
nee
d to
und
erta
ke th
eir r
oles
. 0
1 2
3
B
Staf
f are
satis
fied
that
issu
es/c
once
rns t
hey
rais
e in
car
e de
liver
y ar
e ac
ted
upon
by
thei
r sup
ervi
sor/r
elev
ant p
erso
n.
0 1
2 3
C
Staf
f con
firm
thei
r man
ager
s ack
now
ledg
e/pr
aise
thei
r ach
ieve
men
ts in
us
ing
pers
on-c
entre
d ap
proa
ches
in c
arin
g fo
r the
per
son.
0
1 2
3
D
Staf
f con
firm
ther
e is
a c
ultu
re o
f res
pect
for a
ll st
aff.
0 1
2 3
A
dd sc
ores
to o
btai
n su
btot
al fo
r th
is se
ctio
n Su
btot
al =
Org
anis
atio
nal c
ultu
re
345
Dom
ain
2. C
are
and
Act
iviti
es, a
nd In
terp
erso
nal R
elat
ions
hips
and
Inte
ract
ions
.
Prin
cipl
es o
f Per
son-
Cen
tred
Car
e in
car
e an
d ac
tivity
pro
gram
s A
ccre
dita
tion
stan
dard
s (E
xpec
ted
outc
omes
) rel
atin
g to
eac
h p e
rson
’s c
are
and
activ
ities
Th
e pe
rson
is re
spec
ted
and
valu
ed.
2.
4 to
2.1
7 Ex
pect
ed o
utco
mes
(See
App
endi
x A
, p.
30 to
31)
3.4
Emot
iona
l sup
port
3.
6 Pr
ivac
y an
d di
gnity
3.9
Cho
ice
and
deci
sion
mak
ing
C
are
and
activ
ity p
rogr
ams r
ecog
nize
the
pers
on’s
indi
vidu
ality
w
hile
re
info
rcin
g th
eir s
treng
ths,
pers
onal
attr
ibut
es a
nd re
mai
ning
sk
ills.
2.
4 C
linic
al c
are
3.
4 Em
otio
nal s
uppo
rt
3.5
Inde
pend
ence
3.7
Leisu
re in
tere
sts a
nd a
ctiv
ities
3.8
Cul
tura
l and
spiri
tual
life
3.9
Cho
ice
and
deci
sion
mak
ing
Th
e so
cial
env
ironm
ent s
uppo
rts th
e ps
ycho
logi
cal n
eeds
of t
he
pers
on:
the
need
for l
ove,
atta
chm
ent,
com
fort,
iden
tity,
occ
upat
ion
and
incl
usio
n.
3.
4 Em
otio
nal s
uppo
rt
3.5
Inde
pend
ence
3.7
Leisu
re in
tere
sts a
nd a
ctiv
ities
3.8
Cul
tura
l and
spiri
tual
life
3.9
Cho
ice
and
deci
sion
mak
ing
Th
ere
is a
com
mitm
ent t
o m
aint
aini
ng th
e pe
rson
’s in
depe
nden
ce,
allo
win
g ch
oice
and
invo
lvem
ent i
n de
cisi
on m
akin
g.
3.
5 In
depe
nden
ce
3.
8 C
ultu
ral a
nd sp
iritu
al li
fe
3.
9 C
hoic
e an
d de
cisi
on m
akin
g
4.4
Livi
ng e
nviro
nmen
t
Staf
f hav
e th
e ab
ility
to e
ngag
e w
ith th
e pe
rson
in th
eir
uniq
uene
ss th
roug
h op
enne
ss, f
lexi
bilit
y, c
reat
iven
ess a
nd
com
pass
ion
2.
4 C
linic
al c
are
3.
3 Ed
ucat
ion
and
staf
f dev
elop
men
t
3.4
Emot
iona
l sup
port
4.
4 Li
ving
env
ironm
ent
346
Dom
ain
2. C
are
and
Act
iviti
es, a
nd In
terp
erso
nal R
elat
ions
hips
and
Inte
ract
ions
. R
ate
your
org
anis
atio
ns st
atus
in p
rovi
ding
a P
erso
n-C
entre
d ap
proa
ch in
car
e an
d ac
tivity
pro
gram
s, in
terp
erso
nal r
elat
ions
hips
and
in
tera
ctio
ns u
sing
the
scal
e be
low
. The
com
men
ts c
olum
n m
ay b
e us
ed to
reco
rd a
ny a
ctio
n th
at h
as b
een
take
n to
ach
ieve
the
spec
ific
indi
cato
r. 0
= N
ot a
t all
1 =
Som
etim
es
2 =
A g
reat
dea
l 3
= A
ll of
the
time
C
are
and
Act
iviti
es, a
nd In
terp
erso
nal R
elat
ions
hips
and
Inte
ract
ions
de
mon
stra
te a
per
son-
cent
red
appr
oach
to c
are
Res
pons
e Sc
ore
Com
men
ts
2.1
Indi
vidu
al c
are
plan
s sup
port
the
pers
on’s
inde
pend
ence
as f
ar a
s po
ssib
le w
hile
add
ress
ing
thei
r un
ique
nee
ds a
nd d
esir
es.
A
Prio
r to
the
deve
lopm
ent o
f the
car
e pl
an c
ompr
ehen
sive
ass
essm
ents
are
co
nduc
ted,
incl
udin
g m
edic
al, f
unct
iona
l (ph
ysic
al, c
ogni
tive,
soci
al a
nd
psyc
holo
gica
l), e
mot
iona
l and
spiri
tual
dom
ains
.
0 1
2 3
B
Ass
essm
ents
are
con
duct
ed fo
r spe
cific
are
as o
f car
e (e
.g. m
obili
ty, r
isk
of
falls
, con
tinen
ce –
bow
el a
nd b
ladd
er a
nd b
ehav
ior)
0
1 2
3
C
The
care
pla
n fo
cuse
s on
how
to su
ppor
t the
per
son’
s abi
litie
s (th
eir
stre
ngth
s) m
ore
than
how
to c
ompe
nsat
e fo
r the
ir di
sabi
litie
s (th
eir d
efic
its).
0 1
2 3
347
C
are
and
Act
iviti
es, a
nd In
terp
erso
nal R
elat
ions
hips
and
Inte
ract
ions
d e
mon
stra
te a
per
son-
cent
red
appr
oach
to c
are.
R
espo
nse
Scor
e C
omm
ents
Res
pons
e Sc
ale:
0 =
Not
at a
ll; 1
= S
omet
imes
; 2
= A
gre
at d
eal;
3 =
All
of th
e tim
e
2.2
An
Indi
vidu
al L
ife H
isto
ry in
form
s eac
h pe
rson
’s R
ecre
atio
n an
d So
cial
Act
iviti
es.
A
A d
etai
led
Life
His
tory
/pro
file
is d
evel
oped
out
linin
g th
e pe
rson
’s in
tere
sts,
pers
onal
ity, p
refe
renc
es, p
ast o
ccup
atio
ns a
nd a
chie
vem
ents
. 0
1 2
3
B
The
pers
on’s
Life
His
tory
/pro
file
is ta
ken
into
con
side
ratio
n w
hen
deve
lopi
ng th
eir u
niqu
e A
ctiv
ity P
lan.
0
1 2
3
C
The
pers
on h
as in
put t
o de
velo
ping
thei
r uni
que
Act
ivity
Pla
n at
the
leve
l of
thei
r abi
lity.
0
1 2
3
D
The
pers
on p
artic
ipat
es in
recr
eatio
nal a
nd so
cial
act
iviti
es th
at m
atch
thei
r in
tere
sts a
nd n
eeds
. 0
1 2
3
E
The
pers
on p
rovi
des s
taff
with
feed
back
, bot
h po
sitiv
e an
d ne
gativ
e, o
n th
eir a
ctiv
ity p
lan
at th
e le
vel o
f the
ir ab
ility
. 0
1 2
3
348
C
are
and
Act
iviti
es, a
nd In
terp
erso
nal R
elat
ions
hips
and
Inte
ract
ions
d e
mon
stra
te a
per
son-
cent
red
appr
oach
to c
are.
R
espo
nse
Scor
e C
omm
ents
Res
pons
e Sc
ale:
0 =
Not
at a
ll; 1
= S
omet
imes
; 2
= A
gre
at d
eal;
3 =
All
of th
e tim
e 2.
3 T
here
is r
espe
ct fo
r th
e pe
rson
’s u
niqu
e id
entit
y (p
erso
nhoo
d)
A
Staf
f use
eac
h pe
rson
’s li
fe h
isto
ry/p
rofil
e to
gai
n in
form
atio
n on
thei
r pe
rson
al b
elie
fs a
nd w
hat i
s mea
ning
ful i
n th
eir l
ife.
0 1
2 3
B
Ther
e ar
e av
enue
s ava
ilabl
e fo
r the
per
son
to e
xpre
ss th
eir i
ndiv
idua
l sp
iritu
ality
in m
eani
ngfu
l way
s. 0
1 2
3
C
The
back
grou
nds o
f peo
ple
from
cul
tura
lly a
nd li
ngui
stic
ally
div
erse
so
ciet
ies a
re a
ppre
ciat
ed a
nd a
ckno
wle
dged
thro
ugh
prov
isio
n of
pre
ferr
ed
food
, mus
ic, a
ctiv
ities
and
cel
ebra
tions
.
0 1
2 3
D
Staf
f use
lang
uage
-spe
cific
or s
ymbo
lic c
ue c
ards
(or s
imila
r) to
ena
ble
com
mun
icat
ion
with
the
pers
on if
requ
ired.
0
1 2
3
E
Staf
f res
pect
the
pers
on’s
cho
ices
(e.g
. foo
ds, a
ctiv
ities
, tim
e of
get
ting
out
of b
ed e
tc),
or a
ltern
ativ
e ch
oice
s are
neg
otia
ted
if un
able
to b
e fu
lly m
et.
0 1
2 3
F St
aff u
se th
e pe
rson
’s p
refe
rred
mem
orab
ilia
(pho
tos,
obje
cts)
to a
ssis
t the
m
in m
aint
aini
ng c
omm
unic
atio
n an
d re
latio
nshi
ps w
ith fa
mily
and
clo
se
frie
nds.
0 1
2 3
349
C
are
and
Act
iviti
es, a
nd In
terp
erso
nal R
elat
ions
hips
and
Inte
ract
ions
d e
mon
stra
te a
per
son-
cent
red
appr
oach
to c
are.
R
espo
nse
Scor
e C
omm
ents
Res
pons
e Sc
ale:
0 =
Not
at a
ll; 1
= S
omet
imes
; 2
= A
gre
at d
eal;
3 =
All
of th
e tim
e
2.4
Staf
f mai
ntai
n po
sitiv
e in
terp
erso
nal r
elat
ions
hips
with
eac
h pe
rson
.
A
Staf
f mee
t the
per
son’
s nee
d fo
r per
sona
l int
erac
tion
by e
ngag
ing
with
them
in
mea
ning
ful s
ocia
l con
vers
atio
n.
0 1
2 3
B
Staf
f eng
age
in c
ultu
rally
app
ropr
iate
and
pre
ferr
ed p
hysi
cal c
onta
ct w
ith
the
pers
on e
.g. t
ouch
, sig
ns o
f aff
ectio
n an
d pe
rson
al c
are.
0
1 2
3
A
dd sc
ores
to o
btai
n su
btot
al fo
r th
is se
ctio
n Su
btot
al =
Car
e an
d A
ctiv
ities
, In
terp
erso
nal R
elat
ions
hips
an
d In
tera
ctio
ns
350
Rat
ings
Fo
r eac
h do
mai
n lis
t the
subt
otal
of t
he sc
ores
reco
rded
M
axim
um sc
ore
Dom
ain
1: –
Org
anis
atio
nal C
ultu
re :
Subt
otal
scor
e =
(84)
D
omai
n 2:
– C
are
and
Act
iviti
es, a
nd In
terp
erso
nal R
elat
ions
hips
and
Inte
ract
ions
:
Subt
otal
scor
e
=
(48)
Tot
al S
core
=
(132
)
351
Appendix 5
Resident interview quantitative measures
The Modified Mini-Mental State (3MS) Test Teng, E.L., & Chui, H.C. (1987). The Modified Mini-Mental State (3MS) examination. Journal of Clinical Psychiatry, 48(8), 314-318.
352
Quality of Life: AD (LTC)- Resident
Circle responses.
1. Physical health Poor Fair Good Excellent
2. Energy Poor Fair Good Excellent
3. Mood Poor Fair Good Excellent
4. Living situation Poor Fair Good Excellent
5. Memory Poor Fair Good Excellent
6. Family Poor Fair Good Excellent
7. Relationships with people who work here
Poor Fair Good Excellent
8. Friends Poor Fair Good Excellent
9. Self over all Poor Fair Good Excellent
10. Ability to keep busy Poor Fair Good Excellent
11. Ability to do things for fun
Poor Fair Good Excellent
12. Ability to take care of oneself
Poor Fair Good Excellent
13. Ability to live with others Poor Fair Good Excellent
Logsdon RG, Albert SM. Assessing quality of life in Alzheimer's disease: Conceptual and methodological issues. Journal of Mental Health and Aging. 1999;5(1):3-6.
353
GERIATRIC DEPRESSION SCALE
Check response
DK = Don’t know NR = No response or nonsense response REF = Refusal to answer question
IF RESPONSE OF “SOMETIMES”, RESTATE THE QUESTION: “How do you feel most of the time?”
1. Are you basically satisfied with your life? Yes No DK/NR/REF
2. Have you dropped most of your activities and interests? Yes No DK/NR/REF
3. Do you feel that your life is empty? Yes No DK/NR/REF
4. Do you often get bored? Yes No DK/NR/REF
5. Are you in good spirits most of the time? Yes No DK/NR/REF
6. Are you afraid that something bad is going to happen to you? Yes No DK/NR/REF
7. Do you feel happy most of the time? Yes No DK/NR/REF
8. Do you often feel helpless? Yes No DK/NR/REF
9. Do you think it is wonderful to be alive? Yes No DK/NR/REF
10. Do you feel worthless the way you are now? Yes No DK/NR/REF
11. Do you feel full of energy? Yes No DK/NR/REF
12. Do you feel that your situation is hopeless? Yes No DK/NR/REF
TOTAL SCORE: _________
SCORE > 4 = PROBABLE DEPRESSION
Scoring system: Each BOLD-FACED answer counts one (1) point.
Do not calculate total score if more than 4 of the 12 questions have DK/NR/REF answers
Sutcliffe, C., Cordingley, L., Burns, A., Mozley, C., Bagley, H., Huxley, P. & Challis, D. A new version of the Geriatric Depression Scale for Nursing and Residential Home Populations: The Geriatric Depression Scale (Residential) (GDS-12R). International Psychogeriatrics, Vol. 12, No. 2, 2000, pp 173-181.
354
Activity and Affect Indicators of Quality of Life (AAIQOL) (Resident Self-Report – Activity Indicators)
Quality of Life Scale: Activity
I am going to ask you about the sorts of activities you might like to do. For each one, could you tell me if you have had a chance to participate in this activity recently (over the past two weeks).
Also, please tell me how often you did each activity and if you enjoyed it. Interviewer: Scale Few = < 3x/week; Often = > 3x/week
Have you done this in the past 2
weeks?
How often have you done this in the past 2
weeks?
Is this something you enjoy?
No Yes None Few Often No Yes 1. Being outside, going for walks,
enjoying nature. 0 1 0 1 2 0 1
2. Being with pets or animals, watching animals. 0 1 0 1 2 0 1
3. Getting together with family or friends. 0 1 0 1 2 0 1
4. Talking to family/friends on the telephone. 0 1 0 1 2 0 1
5. Going to movies, museums or entertainment. 0 1 0 1 2 0 1
6. Going to church, synagogue, mosque, temple or religious events. 0 1 0 1 2 0 1
7. Going shopping for groceries, clothes etc. 0 1 0 1 2 0 1
8. Going for a ride in the car, train or bus. 0 1 0 1 2 0 1
9. Reading or having stories read to him/her. 0 1 0 1 2 0 1
10. Listening to radio, tapes or watching TV. 0 1 0 1 2 0 1
11. Exercising, playing or watching sports. 0 1 0 1 2 0 1
12. Playing games or cards, doing crosswords or puzzles. 0 1 0 1 2 0 1
13. Doing handiwork or crafts. 0 1 0 1 2 0 1 14. Gardening, plant care, indoors or
outdoors. 0 1 0 1 2 0 1
15. Completing a difficult task 0 1 0 1 2 0 1 Logsdon, R. G., & Albert, S. M. (1999). Assessing quality of life in Alzheimer's disease: Conceptual and methodological issues. Journal of Mental Health and Aging, 5(1), 3-6.
355
Pain Assessment in Advanced Dementia - PAINAD
0 1 2 Score Breathing
Independent of
vocalization
Normal Occasional laboured
breathing. Short period of hyperventilation
Noisy, laboured breathing. Long
period of hyperventilation. Cheyne-Stokes
respirations
Negative vocalizations
None Occasional moan or groan.
Low level speech with a negative or
disapproving quality
Repeated troubled calling out.
Loud moaning or groaning. Crying.
Facial expression
Smiling or inexpressive
Sad. Frightened. Frown.
Facial grimacing.
Body Language
Relaxed. Tense. Distressed Pacing.
Fidgeting.
Rigid. Fists clenched. Knees
pulled up. Pulling or pushing away.
Striking out.
Consolability No need to console
Distracted or reassured by voice
or touch
Unable to console, distract or reassure
TOTAL Varden V, Hurely AC, Volicer, L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) Scale. JAMDA 2003: 4:9-15.
356
Appendix 6
Resident clinical record review
Resident Demographics
1. Date: 2. Research Assistant Code: 3. Resident Code
4. Facility Code: 5. Date of Birth: / / 19 6. Gender 1. Male 2. Female
7. Marital Status 1. Married 2. Separated 3. Divorced 4. Widowed 5. De-facto 6. Never Married
RATING A = 0 in both care needs (readiness to eat and eating) RATING B = 0 in readiness to eat AND 1 in eating RATING B = 1 in readiness to eat AND 0 in eating RATING B = 1 in readiness to eat AND 1 in eating RATING B = 2 in readiness to eat AND 0 in eating RATING C = 2 in readiness to eat AND 1 in eating RATING C = 0 in readiness to eat AND 2 in eating RATING C = 1 in readiness to eat AND 2 in eating RATING D = 2 in readiness to eat AND 2 in eating
RATING A = 0 in both care needs (transfers and locomotion) RATING B = 1 or 2 in transfers AND 0 in locomotion RATING B = 0 in transfers AND 1 or 2 in locomotion RATING C = 1 or 2 in transfers AND 1 in locomotion RATING C = 1 in transfers AND 2 in locomotion RATING D = 2 in transfers AND 2 in locomotion RATING D = 3 in transfers
RATING A = 0 in all care needs (dressing and washing and grooming) RATING B = 1 in any of the three care needs (dressing, washing, grooming) RATING C = 2 in any of the three care needs (dressing, washing, grooming) RATING D = 2 in all three care needs (dressing and washing and grooming)
RATING A = 0 in both care needs (use of toilet and toilet completion) RATING B = 1 in one or two care needs (use of toilet, and/ or toilet completion) RATING C = 2 in one care need (use of toilet or toilet completion) RATING D = 2 in both care needs (use of toilet and toilet completion)
360
ACFI 5 Continence
Continence Assessment Summary Tick if yes No incontinence recorded 5.1 3-day Urine Continence Record 5.2 7-day Bowel Continence Record 5.3
You must tick one selection from items 1–4 and one selection from items 5–8. Continence checklist Tick if yes Urinary continence 1 No episodes of urinary incontinence or self-manages continence
devices
2 Incontinent of urine less than or equal to once per day 3 2 to 3 episodes daily of urinary incontinence or passing of urine
during scheduled toileting
4 More than 3 episodes daily of urinary incontinence or passing of urine during scheduled toileting
Faecal continence 5 No episodes of faecal incontinence or self-manages continence
devices
6 Incontinent of faeces once or twice per week 7 3 to 4 episodes weekly of faecal incontinence or passing faeces
during scheduled toileting
8 More than 4 episodes per week of faecal incontinence or passing faeces during scheduled toileting
ACFI 5 Rating Key
RATING
RATING A = yes to (item 1) and (item 5) RATING B = yes to (item 2) or (item 6): You must complete and enclose the Continence Record RATING C = yes to (item 3) or (item 7): You must complete and enclose the Continence Record RATING D = yes to (item 4) or (item 8): You must complete and enclose the Continence Record
361
ACFI 6 Cognitive skills Cognitive Skills Assessment Summary Tick if yes No PAS - CIS undertaken–and nil or minimal cognitive impairment 6.1 Cannot use PAS - CIS due to severe cognitive impairment or unconsciousness or have a diagnosis of 520, 530, 570 or 580
6.2
Cannot use PAS - CIS due to speech impairment 6.3 Cannot use PAS - CIS due to cultural or linguistic background 6.4 Cannot use PAS - CIS due to sensory impairment 6.5 Cannot use PAS - CIS due to resident’s refusal to participate 6.6 Clinical report provides supporting information for the ACFI 6 appraisal
6.7
PAS-CIS Score:
Cognitive Skills checklist Tick if yes 1 No or minimal impairment
PAS-CIS= 0-3 (including a decimal fraction below 4)
2 Mild impairment PAS-CIS=4-9 (including a decimal fraction below 10)
3 Moderate impairment PAS-CIS=10-15 (including a decimal fraction below 16)
4 Severe impairment PAS-CIS=16-21
ACFI 6 Rating Key
RATING
RATING A = yes to (item 1) RATING B = yes to (item 2) RATING C = yes to (item 3) RATING D = yes to (item 4)
ACFI 7 Wandering Wandering Behaviour Assessment Summary Tick if yes No behaviours recorded 7.1 Interfering while wandering 7.2 Trying to get to inappropriate places 7.3
Wandering checklist Tick if yes 1 Problem wandering does not occur or occurs less than two days per
week
2 Problem wandering occurs at least two days per week 3 Problem wandering occurs at least six days in a week 4 Problem wandering occurs twice a day or more, at least six days in a
week
ACFI 7 Rating Key
RATING
RATING A = yes to (item 1) RATING B = yes to (item 2) RATING C = yes to (item 3) RATING D = yes to (item 4)
362
ACFI 8 Verbal Behaviour Verbal Behaviour Assessment Summary Tick if yes No behaviours recorded 8.1 Verbal refusal of care 8.2 Verbal disruption to others 8.3 Paranoid ideation that disturbs others 8.4 Verbal sexually inappropriate advances 8.5
Verbal behaviour checklist Tick if yes 1 Verbal behaviour does not occur or occurs less than two days per
week
2 Verbal behaviour occurs at least two days per week 3 Verbal behaviour occurs at least six days in a week 4 Verbal behaviour occurs twice a day or more, at least six days in a
week
ACFI 8 Rating Key
RATING
RATING A = yes to (item 1) RATING B = yes to (item 2) RATING C = yes to (item 3) RATING D = yes to (item 4)
ACFI 9 Physical Behaviour Physical Behaviour Assessment Summary Tick if yes No behaviours recorded 9.1 Physically threatening or doing harm to self, others or property 9.2 Socially inappropriate behaviour impacts on other residents 9.3 Constantly physically agitated 9.4
Physical behaviour checklist Tick if yes 1 Physical behaviour does not occur or occurs less than two days per
week
2 Physical behaviour occurs at least two days per week 3 Physical behaviour occurs at least six days in a week 4 Physical behaviour occurs twice a day or more, at least six days in a
week
ACFI 9 Rating Key
RATING
RATING A = yes to (item 1) RATING B = yes to (item 2) RATING C = yes to (item 3) RATING D = yes to (item 4)
363
ACFI 10 Depression Symptoms of Depression Assessment Summary Tick if yes No CSD undertaken 10.1 CSD- enter score 10.2 Clinical report provided supporting information for the ACFI 10 appraisal
10.3
Symptoms of depression checklist Tick if yes 1 CSD= 0-8 or no CSD completed
Minimal symptoms or symptoms did not occur
2 CSD= 9-13 Symptoms caused mild interference with the person’s ability to participate in their regular activities
3 CSD= 14-18 Symptoms caused moderate interference with the person’s ability to function and participate in their regular activities
4 CSD= 19-38 Symptoms caused major interference with the person’s ability to function and participate in their regular activities
5 There is a diagnosis or provisional diagnosis of depression completed or reconfirmed in the past twelve months (diagnosis evidence required as per Mental and Behavioural Diagnosis)
6 Diagnosis or provisional diagnosis of depression being sought and will be made available on request within three months of the appraisal date
ACFI 10 Rating Key
RATING
RATING A = yes to (item 1) RATING B = yes to (item 2) RATING B = yes to (item 3) AND NOT (item 5 or item 6) RATING B = yes to (item 4) AND NOT (item 5 or item 6) RATING C = yes to (item 3) AND (item 5 or item 6) RATING D = yes to (item 4) AND (item 5 or item 6)
ACFI 11 Medication Medication checklist Tick if yes 1 No medication 2 Self-managed medication 3 Application of patches at least weekly, but less frequently than daily 4 Needs assistance with daily medications 5 Needs daily administration of a subcutaneous drug 6 Needs daily administration of an intramuscular drug 7 Needs daily administration of an intravenous drug ACFI 11 Rating Key
RATING
RATING A = yes to (item 1) or (item 2) RATING B = yes to (item 3) or (item 4) RATING C = yes to (item 5) or (item 6) or (item 7)
364
ACFI 12 Complex health care
Complex health care procedures Tick if yes 1 Blood pressure measurement for diagnosed hyper/ hypotension is a
usual care need AND frequency at least daily (1)
2 Blood glucose measurement for the monitoring of a diagnosed medical condition e.g. diabetes, is a usual care need AND frequency at least daily
(3)
3 Pain management involving therapeutic massage or application of heat packs AND Frequency at least weekly AND Involving at least 20 minutes of one on one staff time in total
(1)
4a Complex pain management and practice undertaken by an allied health professional or registered nurse. This will involve therapeutic massage and/ or pain management involving technical equipment specifically designed for pain management AND Frequency at least weekly AND Involving at least 20 minutes of one on one staff time in total. You can only claim one item 4–either 4a or 4b
(3)
4b Complex pain management and practice undertaken by an allied health professional. This will involve therapeutic massage and/ or pain management involving technical equipment specifically designed for pain management AND Ongoing treatment as required by the resident, at least 4 days per week, AND Involving at least 80 minutes of one on one staff time in total. You can only claim one item 4–either 4a or 4b.
(6)
5 Complex skin integrity management for residents with compromised skin integrity who are usually confined to bed and/ or chair and cannot self-ambulate. The management plan must include repositioning at least 4 times per day.
(3)
6 Management of special feeding undertaken by an RN, on a one-to-one basis, for people with severe dysphagia, excluding tube feeding. Frequency at least daily.
(3)
7 Administration of suppositories or enemas for bowel management is a usual care need. The minimum required frequency is ‘at least weekly.’
(1)
8 Catheter care program (ongoing); excludes temporary catheters e.g. short term post-surgery catheters.
(3)
9 Management of chronic infectious conditions • Antibiotic resistant bacterial infections • Tuberculosis • AIDS and other immune-deficiency conditions • Infectious hepatitis
(6)
10 Management of chronic wounds, including varicose and pressure ulcers, and diabetic foot ulcers.
(6)
11 Management of ongoing administration of intravenous fluids, hypodermoclysis, syringe drivers and dialysis.
(6)
12a Management of arthritic joints and oedema related to arthritis by the application of tubular and/or other elasticised support bandages. Note: The maximum score for claiming both items 12.12a and 12.12b is 3 points.
(1)
12b Management of; • non-arthritic oedema OR deep vein thrombosis by the fitting and removal of compression garments and/or compression bandages, OR • chronic skin conditions by the application and removal of dry dressings and/or protective bandaging. Note: The maximum score for claiming both items 12.12a and 12.12b is 3 points.
(3)
13 Oxygen therapy not self-managed. (3) 14 Palliative care program involving End of Life care where ongoing
care will involve very intensive clinical nursing and/ or complex pain management in the residential care setting.
(10)
15 Management of ongoing stoma care. Excludes temporary stomas e.g. post-surgery. Excludes supra pubic catheters (SPCs)
(1)
365
16 Suctioning airways, tracheostomy care. (6) 17 Management of ongoing tube feeding. (6) 18 Technical equipment for continuous monitoring of vital signs
including Continuous Positive Airway Pressure (CPAP) machine. (3)
ACFI 12 Rating Key
RATING
RATING A = score of 0 (no procedures) RATING B = score 1-4 RATING C = score 5-9 RATING D = score 10 or more
Department of Health & Ageing. Aged Care Funding Instrument (ACFI): User Guide. Canberra: Commonwealth of Australia; 2009.
366
Mini Nutritional Assessment
Sex: Age: Weight (kg): Height (cm):
SCREENING
A. Has food intake declined over the past 3 months due to loss of appetite, digestive problems, chewing or swallowing difficulties?
0 = severe decrease in food intake 1 = moderate decrease in food intake 2 = no decrease in food intake __________
B. Weight loss during the last 3 months 0 = weight loss greater than 3 kg (6.6 lbs)
1 = does not know 2 = weight loss between 1 and 3 kg (2.2 and 6.6 lbs) 3 = no weight loss __________
C. Mobility 0 = bed or chair bound
1 = able to get out of bed / chair but does not go out 2 = goes out __________
D. Has suffered psychological stress or acute disease in the past 3 months? 0 = yes 2 = no __________
E. Neuropsychological problems 0 = severe dementia or depression 1 = mild dementia 2 = no psychological problems __________
F1. Body Mass Index (BMI) (weight in kg) / (height in m2) __________ 0 = BMI less than 19 1 = BMI 19 to less than 21 2 = BMI 21 to less than 23 3 = BMI 23 or greater __________
IF BMI IS NOT AVAILABLE, REPLACE QUESTION F1 WITH QUESTION F2. DO NOT ANSWER QUESTION F2 IF QUESTION F1 IS ALREADY COMPLETED.
F2. Calf circumference (CC) in cm 0 = CC less than 31 3 = CC 31 or greater __________
Screening score (max. 14 points) __________ 12-14 points: Normal nutritional status
8-11 points: At risk of malnutrition
0-7 points: Malnourished
Vellas B, Villars H, Abellan G, et al. Overview of the MNA® - Its History and Challenges. J Nutr Health Aging 2006;10:456-465. Rubenstein LZ, Harker JO, Salva A, Guigoz Y, Vellas B. Screening for Undernutrition in Geriatric Practice: Developing the Short-Form Mini Nutritional Assessment (MNA-SF). J. Geront 2001;56A: M366-377. Guigoz Y. The Mini-Nutritional Assessment (MNA®) Review of the Literature - What does it tell us? J Nutr Health Aging 2006; 10:466-487. Kaiser MJ, Bauer JM, Ramsch C, et al. Validation of the Mini Nutritional Assessment Short-Form (MNA®-SF): A practical tool for identification of nutritional status. J Nutr Health Aging 2009; 13:782-788.
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Appendix 7
Resident quantitative measures completed by staff informant
Cohen Mansfield Agitation Inventory (CMAI) – Long Form
Cohen-Mansfield J (1986): agitated behaviors in the elderly. II. Preliminary results in the cognitively deteriorated. Journal of American Geriatric Society. 34, 722-727 Cohen-Mansfield, J., Marx, M.S. and Rosental, A.S. (1989). A description of agitation in the nursing home. Journal of Gerontology. 44, M77-M84.
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Activity and Affect Indicators of Quality of Life - Apparent Emotion
Staff Carer Report Please estimate how frequently this resident has exhibited signs of each type of emotion over the past 2 weeks. Often the resident cannot tell you how he or she feels. We have listed some possible signs of such emotions. If you see no sign of a particular feeling, rate “Never”.
Use “Can’t tell” only when you are really uncertain.
1. Pleasure Signs: Smile, laugh, stroking, touching with an ‘approach’ manner, nodding, singing arm or hand outreach or open arm gesture
3. Anxiety Signs: Furrowed brow, Motoric restlessness, repeated or agitated motions, facial expression of worry, sighs, withdrawal from others, tremor, tight facial muscles, calls repeatedly.
Never Only once 2-6 times per week
1-2 Times per day
Several times per day (3+)
Can’t tell
1 2 3 4 5 9
4. Depression Signs: Crying, tears, moans, mouth turned down at corners
Never Only once 2-6 times per week
1-2 Times per day
Several times per day (3+)
Can’t tell
1 2 3 4 5 9
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5. Interest Signs: Eyes follow objects, intent fixation on object or person, visual scanning, facial, motoric or verbal feedback to others, eye contact maintained, body or vocal response to music, wide angle subtended by gaze, turns body or moves toward person or object
Never Only once 2-6 times per week
1-2 Times per day
Several times per day (3+)
Can’t tell
1 2 3 4 5 9
6. Contentment Signs: Comfortable posture (sitting or lying down), smooth facial muscle, lack of tension in limbs, slow movements, relaxed body stance, lightening of frown or worry line
Never Only once 2-6 times per week
1-2 Times per day
Several times per day (3+)
Can’t tell
1 2 3 4 5 9
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Activity and Affect Indicators of Quality of Life - Activity Please indicate if the resident has had an opportunity to participate in the following activities in the past 2 weeks. Also, please indicate how often the resident did each activity and if he or she enjoyed it. Scale Few = < 3x/wk; Often = > 3x/wk
Opportunity? Frequency? Enjoys?
No Yes None Few Often No Yes 1. Being outside, going for
walks, enjoying nature. 0 1 0 1 2 0 1
2. Being with pets or animals, watching animals.
0 1 0 1 2 0 1
3. Getting together with family or friends.
0 1 0 1 2 0 1
4. Talking to family/friends on the telephone.
0 1 0 1 2 0 1
5. Going to movies, museums or entertainment.
0 1 0 1 2 0 1
6. Going to church, synagogue or religious events.
0 1 0 1 2 0 1
7. Going shopping for groceries, clothes etc.
0 1 0 1 2 0 1
8. Going for a ride in the car, train or bus.
0 1 0 1 2 0 1
9. Reading or having stories read to him/her.
0 1 0 1 2 0 1
10. Listening to radio, tapes or watching TV.
0 1 0 1 2 0 1
11. Exercising, playing or watching sports.
0 1 0 1 2 0 1
12. Playing games or cards, doing crosswords or puzzles.
0 1 0 1 2 0 1
13. Doing handiwork or crafts.
0 1 0 1 2 0 1
14. Gardening, plant care, indoors or outdoors.
0 1 0 1 2 0 1
15. Completing a difficult task
0 1 0 1 2 0 1
Albert, S. M., Del Castillo-Castaneda, C., Sano, M., & Jacobs, D. M. (1996). Quality of life in patients with Alzheimer's disease as reported by patient proxies. Journal of the American Geriatrics Society, 44, 1342-1347.
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Revised Algase Wandering Scale (RAWS) – Long Term Care Version
Please put a check beside the statement that best describes this resident. PERSISTENT WALKING
1. Resident has a reduced amount of spontaneous walking
walks the same or more as others of the same age and ability
walks less than others of same age and ability
walks only minimally, e.g. to go to bathroom
does not walk spontaneously unless prompted
2. Resident has an increased amount of spontaneous walking
walks about the same as others of same age and ability
walks distinctly more than average, but will sit for periods
walks distinctly more than average, rarely sits
walks distinctly more than average, never sits
3. Resident walks about on their own
only if prompted
occasionally during the day
frequently during the day
almost constantly during the day
4. Resident walks around restlessly
never
on a few occasions
regularly but not daily
on a daily basis
5. Resident paces up and down
never
on a few occasions
regularly but not daily
on a daily basis
6. Resident walks around after awakening but before breakfast
never
less than others of same age and ability
the same as others of the same age and ability
more than others of same age and ability
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7. Residents walks around between breakfast and lunch
never
less than others of same age and ability
the same as others of the same age and ability
more than others of same age and ability
8. Resident walks around between lunch and dinner
never
less than others of same age and ability
the same as others of the same age and ability
more than others of same age and ability
9. Resident walks around after dinner but before bedtime
never
less than others of same age and ability
the same as others of the same age and ability
more than others of same age and ability
ELOPING BEHAVIOUR
10. Resident attempts to leave their authorised area
never
on a few occasions
regularly but not daily
on a daily basis
11. Resident runs off
never
on a few occasions
regularly but not daily
on a daily basis
12. Resident enters unauthorised areas
never
on a few occasions
regularly but not daily
on a daily basis
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13. Resident was returned to authorised area after leaving unnoticed
never
only once
more than once, but not often
often
SPATIAL DISORIENTIATION
14. Resident gets lost
never
on a few occasions
regularly but not daily
on a daily basis
15. Resident cannot locate bathroom without help
requires no help
sometimes requires help
usually requires help
always required help
16. Resident cannot locate dining room without help
requires no help
sometimes requires help
usually requires help
always required help
17. Resident cannot locate own room without help
requires no help
sometimes requires help
usually requires help
always required help
18. Resident walks about aimlessly
always has an identifiable destination/goal
usually has an identifiable destination/goal
sometimes has an identifiable destination/goal
never has an identifiable destination/goal
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19. Whilst walking alone, resident bumps into obstacles or other people
never
on a few occasions
regularly but not daily
on a daily basis
VALIDATION ITEMS
20. Resident is a wanderer
definitely not
at times
yes, but it is not a problem
yes, and it is a problem
21. I am
a care worker
an enrolled nurse
a nurse practitioner
a registered nurse
a social worker
a dietitian or dietary aid
a physical therapist
an occupational therapist
an activity therapist
a unit clerk
other
22. I have worked with this resident
only today
today and once before
several times
many times
23. I have attended classes on dementia
never
once
several times
often
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24. I consider myself
inexperienced with dementia
a beginner in caring for persons with dementia
experienced in dementia care
an expert in dementia care
Are there any comments you would like to make about this resident
Algase DL, Beattie ER, Song JA, Milke D, Duffield C, Cowan B. Validation of the Algase Wandering Scale (Version 2) in a cross cultural sample. Aging and Mental Health. 2004;8(2):133-42.
Tick the best answer for how you think the resident/your family member felt last week
1. Are they basically satisfied with life? Yes No 2. Have they dropped many of their activities and interests? Yes No 3. Do they feel that their life is empty? Yes No 4. Do they often get bored? Yes No 5. Are they hopeful about their future? Yes No 6. Are they bothered by thoughts they can’t get out of their
heads? Yes No
7. Are they in good spirits most of the time? Yes No 8. Are they afraid that something bad is going to happen to
them? Yes No
9. Do they feel happy most of the time? Yes No 10. Do they feel helpless? Yes No 11. Do they often get restless and fidgety? Yes No 12. Do they prefer to stay at home rather than going out and
doing new things? Yes No
13. Do they frequently worry about the future? Yes No 14. Do they feel they have more problems with memory then
most? Yes No
15. Do they think it is wonderful to be alive now? Yes No 16. Do they feel downhearted and blue? Yes No 17. Do they feel pretty worthless the way they are now? Yes No 18. Do they worry a lot about the past? Yes No 19. Do they find life very exciting? Yes No 20. Is it hard for them to get started on new projects? Yes No 21. Do they feel full of energy? Yes No 22. Do they feel that their situation is hopeless? Yes No 23. Do they think that most people are better off than they are? Yes No 24. Do they frequently get upset over little things? Yes No 25. Do they frequently feel like crying? Yes No 26. Do they have trouble concentrating? Yes No 27. Do they enjoy getting up in the morning? Yes No 28. Do they prefer to avoid social gatherings? Yes No 29. Is it easy for them to make decisions? Yes No 30. Is their mind as clear as it used to be? Yes No
Chang, Y.-P., Edwards, D. F., & Lach, H. W. (2011). The Collateral Source version of the Geriatric Depression Scale: Evaluation of psychometric properties and discrepancy between collateral sources and patients with dementia in reporting depression. International Psychogeriatrics, 23(6), 961-968.
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Quality of Life: AD (LTC) (Staff Caregiver version) The following questions are about this resident’s quality of life.
When you think about this resident’s life, there are different aspects, some of which are listed below. Please think about each item, and rate the resident’s current quality of life in each area using one of four words: poor, fair, good, or excellent. Please rate these items based on the resident’s life at the present time (e.g. within the past few weeks). If you have questions about any item, please ask the person who gave you this form for assistance.
Circle responses.
1. Physical health Poor Fair Good Excellent
2. Energy Poor Fair Good Excellent
3. Mood Poor Fair Good Excellent
4. Living situation Poor Fair Good Excellent
5. Memory Poor Fair Good Excellent
6. Family Poor Fair Good Excellent
7. Relationships with people who work here
Poor Fair Good Excellent
8. Friends Poor Fair Good Excellent
9. Self over all Poor Fair Good Excellent
10. Ability to keep busy Poor Fair Good Excellent
11. Ability to do things for fun Poor Fair Good Excellent
12. Ability to take care of oneself Poor Fair Good Excellent
13. Ability to live with others Poor Fair Good Excellent
14. Ability to make choices in one’s life Poor Fair Good Excellent
15. Life over all Poor Fair Good Excellent
Comments: ____________________________________________________________________ ____________________________________________________________________ Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510-519.
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Verbal Behaviour Scale
Resident’s behaviour
No. of times it
occurred during your shift?
How disruptive was this
behaviour?
How aggressive was this
behaviour?
How much nursing time was required
for this behaviour?
How manageable
was this behaviour?
How much did the resident enjoy
himself / herself?
1 = not disruptive at all
to 7 = extremely
disruptive
1 = not aggressive at all
to 7 = extremely
aggressive
1 = required no time at all
to 7 = required a lot of
time
1 = extremely manageable
to 7 = extremely unmanageable
1 = did not enjoy self at all
to 7 = enjoyed self a lot
1. Talks constantly
2. Repeats phrases / words
3. Makes repetitious noise
4. Uses obscene / profane language
5. Screams / yells
6. Makes threats implying physical harm to others
7. Makes threats implying physical harm to self
8. Uses hostile / accusatory language toward others
Beck C, Richards K, Lambert C, Doan R, Landes RD, Whall A, et al. Factors Associated with Problematic Vocalizations in Nursing Home Residents With Dementia. The Gerontologist. 2011 June 1, 2011;51(3):389-405.
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Appendix 8
Family member demographic questions
Family member demographic questions
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521 1. What is your gender?
Female Male
2. What is your age group?
Less than 20 years 21 to 40 years 41 to 60 years 61 to 80 years 81 years and older
3. In which state or territory do you reside?
ACT NSW NT QLD SA TAS VIC WA
4. What is your relationship to resident?
Spouse Sibling Child Daughter in law/son in law Other family member (please specify) Other (please specify) ________________________________
5. Approximately how long have you known the resident?
years 6. How often are you in touch with the resident (phone calls or visits)?
Every day Several times a week Weekly Fortnightly Monthly Other (please specify)
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7. How do you normally maintain contact with the resident?
Phone calls Letters Visits to facility Calls to facility regarding residents’ wellbeing Other (please specify)
8. Approximately how much time did you spend with the resident in the last month?
hours
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Appendix 9
Staff focus group demographic questions
Staff demographic questions
Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities
QUT Ethics Approval Number 1700000521
1. What is your gender?
Female Male
2. What is your age group?
Less than 20 years 21 to 40 years 41 to 60 years 61 years and older
3. What is the highest level of education you have completed?
Primary school education High school education – Year 10 (or equivalent) High school education – Year 12 (or equivalent) TAFE College Certificate or Diploma (or Trade Certificate or Diploma) Undergraduate university degree Postgraduate university degree Other (please specify):
4. Which of the following best describes your current position?
Personal Care Assistant Assistant-In-Nursing Enrolled Nurse Endorsed Enrolled Nurse Registered Nurse CNC, Nurse Practitioner, Nurse Unit Manager Dietician or Nutritionist Occupational Therapist Diversional Therapist Physiotherapist Psychologist Welfare Officer /Social Worker Speech Pathologist Other (Please specify):
5. My current role involves communicating with people with dementia?
Never Sometimes Often Always
6. Please describe your current working hours:
Permanent full time Permanent part time Casual Other (please specify):
7. How long have you worked in aged care (in any capacity)?
Less than 12 months 1 to 2 years 3 to 5 years 6 to 10 years More than 10 years
8. Do you currently work on permanent night duty?
Yes No
9. Have you previously had a personal experience (i.e. not work related) of caring for a person with Alzheimer’s disease or other dementia?
Yes No
10. Have you received education specifically relating to caring for a person with
dementia?
Yes No Not applicable in my role
11. What dementia specific education have you had? (tick all that apply)
None Included in an undergraduate course Formal postgraduate course Dementia specific conference Online course Self-directed learning (e.g. online browsing, reading articles or books) Facility in-service course Other (please specify):