National evaluation of Alzheimer’s
Australia’s support groups for
people with early stage dementia
& their carers: The ‘Li...
Ministerial Courage
 25 years of research has produced little evidence
that even carer support groups are effective in an...
The LWML Programme…..
 Run by Alzheimer’s Australia
 Groups 6-8 weeks, two hour sessions
 Carers and people with memory...
Aims
 Does attending the group produce improvement in
people with early dementia and their carers/supporters
 As rigorou...
PRE-BASELINE
< 3 weeks before group
starts
BASELINE
Just before group
starts
END OF GROUP
Just after group
finishes
FOLLOW...
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 wit...
I feel miserable and sad
Measures
 General mental health (GHQ-12)
 Depression (BDI, Leeds)
 Social activity
 Service use
 Stress caused by cha...
Response rate to 3 month follow-up
Main sample:
87 carers (85%)*
84 people with dementia (79%)*
*of those who completed th...
Characteristics of the participants
Person with memory loss:
 52% male
 Median yr of birth 1926 (f); 1928 (m)
 74% Alzh...
The group (Person with dementia)
0
20
40
60
80
100
Helped me Enjoyed the groups
percent
All/most of the time
Quite often
O...
Quotes….
 …showed that I can go out again and mix with people
 …being able to discuss my problems…sharing with no
embarr...
Satisfaction: Carer - themselves
Means 1.3 (se .06) 1.4 (se .07)
No sig difference over time (n=60, who filled in both)
0
...
Carer Quotes….
 …I’ve often thought back to what other carers said and
how they solved problems.
 …made friends and we a...
Satisfaction: Carer - person with dementia
0
10
20
30
40
50
60
End of group 15 mths post
Percent 1. Helped a lot
2. Somewh...
Recommend for others (carer at 15 mths)
0
20
40
60
80
100
For other carers For other people with
dementia
percent
Strongly...
0
1
2
3
4
5
6
7
8
Start End 3 mths post
Meanscore
C-GHQ (carer)
subclinicalclinical
n=84
0
2
4
6
8
10
12
Start End 3 mths post
Meanscore
Beck Depression Inventory (carer)
subclinicalclinical
n=75
0
1
2
3
4
5
Start End 3 months
post
Meanstress
Stress from challenging behaviours
extreme
moderate
mild
Mean
stress: per
p...
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
6...
0
1
2
3
4
Start End 3 mths 15 mths
Caring: an enriching experience...
Though caring for or supporting someone with memory ...
Quotes….
 I hate having to ask people to repeat things
for me. I am afraid of not being able to
remember, of getting wors...
Quotes….
 Total frustration, feelings of insecurity, I don’t
know whether this is the correct way of saying
it… I feel it...
Depression (person with dementia)
days before or after group
300250200150100500-50
LEEDS
16
14
12
10
8
6
4
2
0
0
2
4
6
8
10
12
Start End 3 mths post
Meandepressionscore
Depression
adjusted for insight,
adls, cdr
Clinical subsample
ad...
15 months later…….
* participants from the main sample who completed the program
& had valid questionnaires at the start o...
0
2
4
6
8
10
12
Start End 15 mths post
Meandepressionscore
Depression
(n=51)
Clinical
subsample
(n=10)
Depression (person ...
Other findings at 15 mths
 Carers' mental health, stress from behaviours,
depression were not significantly different
fro...
Summary of findings
High satisfaction
At 3 months
 CARER: improved mental health (GHQ) , decreased stress
from behaviours...
Summary (2) ….
At 15 months
 People with dementia: who started with
high depression levels were less depressed
 Cognitiv...
Conclusions
 Time limited program shows high satisfaction and
improvement in mental health and other measures for
both ca...
Acknowledgements
 The participants
 Alzheimer’s Australia staff, Anna Sarre &
Glenys Badger
 Henry Brodaty, Richard Ros...
For further information
The Living With Memory Loss Programme:
Glenys Badger, Alzheimer's Australia
Email: glenys@alzheime...
of 34

National evaluation of Alzheimer's Australia's support groups for

Published on: Mar 3, 2016
Source: www.slideshare.net


Transcripts - National evaluation of Alzheimer's Australia's support groups for

  • 1. 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
  • 2. 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
  • 3. 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
  • 4. 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
  • 5. PRE-BASELINE < 3 weeks before group starts BASELINE Just before group starts END OF GROUP Just after group finishes FOLLOW-UP 3 & 15 months post-group Main sample Wait-list Design
  • 6. Procedures  Separate questionnaires  Carers self-report  Alzheimer's Australia interviewed the person with dementia
  • 7. 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
  • 8. I feel miserable and sad
  • 9. 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
  • 10. 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
  • 11. 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% female Median yr of birth 1932 (f); 1926 (m) 82% spouse/partner
  • 12. The group (Person with dementia) 0 20 40 60 80 100 Helped me Enjoyed the groups percent All/most of the time Quite often Occasionally Rarely/never
  • 13. 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
  • 14. 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 Percent 1. Helped a lot 2. Somewhat 3. No difference 4. Somewhat 5. A lot worse Satisfaction (all participants) n=96 n=61
  • 15. 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.
  • 16. Satisfaction: Carer - person with dementia 0 10 20 30 40 50 60 End of group 15 mths post Percent 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)
  • 17. Recommend for others (carer at 15 mths) 0 20 40 60 80 100 For other carers For other people with dementia percent Strongly recommend Recommend Neither Discourage Strongly discourage n=61n=61
  • 18. 0 1 2 3 4 5 6 7 8 Start End 3 mths post Meanscore C-GHQ (carer) subclinicalclinical n=84
  • 19. 0 2 4 6 8 10 12 Start End 3 mths post Meanscore Beck Depression Inventory (carer) subclinicalclinical n=75
  • 20. 0 1 2 3 4 5 Start End 3 months post Meanstress Stress from challenging behaviours extreme moderate mild Mean stress: per person Mean stress: 109 identified behaviours n=81
  • 21. 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 percent
  • 22. 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
  • 23. 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…
  • 24. 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
  • 25. Depression (person with dementia) days before or after group 300250200150100500-50 LEEDS 16 14 12 10 8 6 4 2 0
  • 26. 0 2 4 6 8 10 12 Start End 3 mths post Meandepressionscore Depression adjusted for insight, adls, cdr Clinical subsample adjusted for insight, adls, cdr, attended ongoing group Depression (person with dementia) n=20/84 (24%) n=84 subclinicalclinical
  • 27. 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%)
  • 28. 0 2 4 6 8 10 12 Start End 15 mths post Meandepressionscore Depression (n=51) Clinical subsample (n=10) Depression (person with dementia) Subclinical n=51 Clinicaln=10
  • 29. Other findings at 15 mths  Carers' mental health, stress from behaviours, depression were not significantly different from the start of group
  • 30. 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
  • 31. 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
  • 32. 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?
  • 33. Acknowledgements  The participants  Alzheimer’s Australia staff, Anna Sarre & Glenys Badger  Henry Brodaty, Richard Rosewarne  Helen Berry, Keith Dear, Anthony Jorm  Australian Government
  • 34. For further information The Living With Memory Loss Programme: Glenys Badger, Alzheimer's Australia Email: glenys@alzheimerssa.asn.au.

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