National evaluation of Alzheimer’s Australia’s support groups for people with early stage dementia & their carers:

1. National evaluation of Alzheimer’s Australia’ssupport groups for people with early stage dementia& their carers: The ‘Living with Memory Loss’ programme 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. Design BASELINE Just before group starts PRE-BASELINE <3 weeks before group starts END OF GROUP Just after group finishes FOLLOW-UP 3 & 15 months post-group Main sample Wait-list

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 dataWait list participants:32 carers and people with dementia

11. Characteristics of the participants • Carer: • 70% female • Median yr of birth 1932 (f); 1926 (m) • 82% spouse/partner 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

12. The group (Person with dementia)

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)

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 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)

18. C-GHQ (carer) clinical subclinical n=84

19. Beck Depression Inventory (carer) clinical subclinical n=75

20. Stress from challenging behaviours extreme n=81 Mean stress: per person moderate Mean stress: 109 identified behaviours mild

21. Future plans(%, OR, 95%CIs) n=87 Odds: 2.4 (1.4) 7.2 (5.4)** 3.83 (2.04)* Odds (adjusted): 2.5 (1.7) 8.1 (6.8)*

22. Caring: an enriching experience... Strongly agree Unsure Strongly disagree Though caring for or supporting someone with memory loss can be stressful, the experience has also enriched you. Do you agree or disagree?

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)

26. Depression (person with dementia) clinical subclinical n=84 n=20/84 (24%)

27. 15 months later……. 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%) * participants from the main sample who completed the program & had valid questionnaires at the start of the group

28. Depression (person with dementia) Clinical n=10 Subclinical n=51

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.