National evaluation of Alzheimer’s Australia’s support groups for
people with early stage dementia & their carers: The ‘Living with Memory
Loss’ programme
AN AUSTRALIAN GOVERNMENT iNITIATIVE
Mike Bird, Tanya Caldwell, Ailsa Korten, Jerome Maller, Michelle Powderly Aged Care Evaluation Unit
NSW Southern Area Mental Health Service&
Australian National University
Ministerial Courage
25 years of research has produced little evidence that even carer support groups are effective in any measures other than member satisfaction.
No evidence for the effectiveness of groups involving people with dementia
Widespread belief (including amongst many health professionals) that insight is lost in dementia, so groups for them must be a waste of time
The LWML Programme…..
Run by Alzheimer’s Australia Groups 6-8 weeks, two hour sessions Carers and people with memory loss typically
meet together and then separately Dementia education, medication/treatment
options, available services, skills development, clinical strategies, and emotional support
Aims
Does attending the group produce improvement in people with early dementia and their carers/supporters
As rigorous a design as the constraints of the situation allowed
Measures to include multiple aspects of dementia, including, wherever possible, validated health scales with proven sensitivity for this population
PRE-BASELINE< 3 weeks before group
starts
BASELINE
Just before group starts
END OF GROUPJust after group
finishes
FOLLOW-UP3 & 15 months
post-group
Main sample
Wait-list
Design
Procedures
Separate questionnaires Carers self-report Alzheimer's Australia interviewed the person
with dementia
Procedures
Self-report is unreliable in dementia
Carer asked all factual questions
Questions asked of the person with dementia are also asked of the carer
The way the person with dementia was interviewed maximised the question being processed and understood
Measures General mental health (GHQ-12)
Depression (BDI, Leeds) Social activity Service use Stress caused by challenging behaviour (Carer stress scale)
Future planning Satisfaction Cognitive status (Clock, CDR, abbreviated mental test)
Insight*
coping, medications, physical health, medications, type of dementia, experiences
Adapted from Guidelines for the rating of awareness deficits
Response rate to 3 month follow-up
Main sample:
87 carers (85%)* 84 people with dementia (79%)*
*of those who completed the programme with valid start of group data
Wait list participants:32 carers and people with dementia
Characteristics of the participants
Person with memory loss: 52% male Median yr of birth 1926 (f); 1928 (m) 74% Alzheimer’s 12% Vascular/stroke, 14% other 57% diagnosed within last year, 24% 1-2 yrs ago 7.0 (mean) clock drawing, 7.5 (mean) AMT, 2.8 (mean) insight CDR mild-moderate
Carer: 70% femaleMedian yr of birth 1932 (f); 1926 (m)
82% spouse/partner
The group (Person with dementia)
0
20
40
60
80
100
Helped me Enjoyed the groups
per
cen
t
All/most of the time
Quite often
Occasionally
Rarely/never
Quotes….
…showed that I can go out again and mix with people …being able to discuss my problems…sharing with no
embarrassment about it …proud there are other people trying to change their
lifestyle because they have to …I’m not anxious any more about what will happen.
I’m not going to allow it to interfere with me …It helped to know that I am not alone but it has not
helped me improve my memory …It hasn’t been any help. I have forgotten what
happened
Satisfaction: Carer - themselves
Means 1.3 (se .06) 1.4 (se .07)No sig difference over time (n=60, who filled in both)
0
20
40
60
80
100
End of group 15 mths post
Per
cent
1. Helped a lot
2. Somewhat
3. No difference
4. Somewhat
5. A lot worse
Satisfaction (all participants)
n=96 n=61
Carer Quotes….
…I’ve often thought back to what other carers said and how they solved problems.
…made friends and we are able to cry on each other’s shoulders together as we both know what it’s like to have a partner with problems
…I found the program helped me understand what it was like for him trying to cope with everyday living … helped me be more tolerant
…explained the illness more thoroughly. I feel much less isolated and no longer guilty about doing things for myself.
Satisfaction: Carer - person with dementia
0
10
20
30
40
50
60
End of group 15 mths post
Pe
rce
nt
1. Helped a lot
2. Somewhat
3. No difference
4. Somewhat
5. A lot worse
Satisfaction (all participants)
n=96 n=60
Means 1.8 (se .11) 1.8 (se .11)No sig difference across time (n=58 who filled in both)
Recommend for others (carer at 15 mths)
0
20
40
60
80
100
For other carers For other people withdementia
pe
rce
nt
Strongly recommend
Recommend
Neither
Discourage
Strongly discourage
n=61n=61
0
2
4
6
8
10
12
Start End 3 mths post
Mea
n sc
ore
Beck Depression Inventory (carer)
su
bclin
ical
clin
ical
n=75
0
1
2
3
4
5
Start End 3 monthspost
Me
an
str
es
s
Stress from challenging behaviours
extreme
moderate
mild
Mean stress: per person
Mean stress: 109 identified behaviours
n=81
Future plans (%, OR, 95%CIs)
Odds: 2.4 (1.4) 7.2 (5.4)** 3.83 (2.04)*
Odds (adjusted): 2.5 (1.7) 8.1 (6.8)*
n=87
0
20
40
60
80
100
Start End 3 mths 15 mths
pe
rce
nt
0
1
2
3
4
Start End 3 mths 15 mths
Caring: an enriching experience...
Though caring for or supporting someone with memory loss can be stressful, the experience has also enriched you. Do you agree or disagree?
Strongly disagree
Unsure
Strongly agree
Quotes….
I hate having to ask people to repeat things for me. I am afraid of not being able to remember, of getting worse, of becoming senile. I just go blank sometimes and then panic and feel so stupid…
Quotes….
Total frustration, feelings of insecurity, I don’t know whether this is the correct way of saying it… I feel it’s pulling shreds off my wife. I feel stressed being locked into this
Depression (person with dementia)
days before or after group
300250200150100500-50
LE
ED
S
16
14
12
10
8
6
4
2
0
0
2
4
6
8
10
12
Start End 3 mths post
Mea
n de
pres
sion
sco
re
Depression
adjusted for insight,adls, cdr
Clinical subsample
adjusted for insight,adls, cdr, attendedongoing group
Depression (person with dementia)
n=20/84 (24%)
n=84
su
bclin
ical
clin
ical
15 months later…….
* participants from the main sample who completed the program & had valid questionnaires at the start of the group
102 carers* 106 People with dementia*
Participants 59 (58%) 52 (49%) Refusal/couldn’t contact 22 (22%) 24 (23%)Death: carer/person with dementia 3 (3%) 4 (4%)Administrative error 7 (7%) 4 (4%)Poor health/in care (either) 11 (11%) 22 (21%)
0
2
4
6
8
10
12
Start End 15 mths post
Me
an
de
pre
ssio
n s
core
Depression(n=51)
Clinicalsubsample(n=10)
Depression (person with dementia)
Su
bclin
ical
n=
51
Clin
ical
n=
10
Other findings at 15 mths
Carers' mental health, stress from behaviours, depression were not significantly different from the start of group
Summary of findings
High satisfaction
At 3 months CARER: improved mental health (GHQ) , decreased stress
from behaviours, increased positive emotion about caring/supporting (feeling enriched)
PEOPLE WITH DEMENTIA: less depressed, particularly who started with high levels of depression
Findings not be explained by change in other measures, or the control group, highly likely they are due to attending the group
Summary (2) ….
At 15 months People with dementia: who started with
high depression levels were less depressed Cognitive decline evident Some evidence of increased service use and
planning for the future, but this could be due to the passing of time
Most measures were not different from the start of the group
Conclusions Time limited program shows high satisfaction and
improvement in mental health and other measures for both carer and person with dementia
People with early stage dementia can benefit from attending support/education groups,
Other support group evaluations often show no findings other than high levels of satisfaction, so what explains the findings of this one?
Programme content and delivery?
Evaluation methods?
Acknowledgements
The participants Alzheimer’s Australia staff, Anna Sarre &
Glenys Badger Henry Brodaty, Richard Rosewarne Helen Berry, Keith Dear, Anthony Jorm Australian Government
For further information
The Living With Memory Loss Programme:
Glenys Badger, Alzheimer's Australia
Email: [email protected].