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

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  1. 1. National evaluation of Alzheimers Australias 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. 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. 3. The LWML Programme.. Run by Alzheimers 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. 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. 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. 6. Procedures Separate questionnaires Carers self-report Alzheimer's Australia interviewed the person with dementia
  7. 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. 8. I feel miserable and sad
  9. 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. 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. 11. Characteristics of the participants Person with memory loss: 52% male Median yr of birth 1926 (f); 1928 (m) 74% Alzheimers 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. 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. 13. Quotes. showed that I can go out again and mix with people being able to discuss my problemssharing with no embarrassment about it proud there are other people trying to change their lifestyle because they have to Im not anxious any more about what will happen. Im 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 hasnt been any help. I have forgotten what happened
  14. 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. 15. Carer Quotes. Ive often thought back to what other carers said and how they solved problems. made friends and we are able to cry on each others shoulders together as we both know what its 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. 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. 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. 18. 0 1 2 3 4 5 6 7 8 Start End 3 mths post Meanscore C-GHQ (carer) subclinicalclinical n=84
  19. 19. 0 2 4 6 8 10 12 Start End 3 mths post Meanscore Beck Depression Inventory (carer) subclinicalclinical n=75
  20. 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. 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. 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. 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. 24. Quotes. Total frustration, feelings of insecurity, I dont know whether this is the correct way of saying it I feel its pulling shreds off my wife. I feel stressed being locked into this
  25. 25. Depression (person with dementia) days before or after group 300250200150100500-50 LEEDS 16 14 12 10 8 6 4 2 0
  26. 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. 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/couldnt 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. 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. 29. Other findings at 15 mths Carers' mental health, stress from behaviours, depression were not significantly different from the start of group
  30. 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. 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. 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. 33. Acknowledgements The participants Alzheimers Australia staff, Anna Sarre & Glenys Badger Henry Brodaty, Richard Rosewarne Helen Berry, Keith Dear, Anthony Jorm Australian Government
  34. 34. For further information The Living With Memory Loss Programme: Glenys Badger, Alzheimer's Australia Email:


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