National evaluation of Alzheimers Australias support groups for people with early stage dementia

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National evaluation of Alzheimers Australias
support 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
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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

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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

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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

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Design
BASELINE Just before group starts
PRE-BASELINE lt 3 weeks before group starts
END OF GROUP Just after group finishes
FOLLOW-UP 3 15 months post-group
Main sample
Wait-list
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Procedures

• Separate questionnaires
• Carers self-report
• Alzheimer's Australia interviewed the person with
  dementia

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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

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I feel miserable and sad
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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
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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 participants32 carers and people with
dementia
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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 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

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The group (Person with dementia)
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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

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Satisfaction Carer - themselves
Means 1.3 (se .06) 1.4 (se .07) No sig
difference over time (n60, who filled in both)
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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.

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Satisfaction Carer - person with dementia
Means 1.8 (se .11) 1.8 (se .11) No sig
difference across time (n58 who filled in both)
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Recommend for others (carer at 15 mths)
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C-GHQ (carer)
n84
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Beck Depression Inventory (carer)
n75
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Stress from challenging behaviours
extreme
n81
Mean stress per person
moderate
Mean stress 109 identified behaviours
mild
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Future plans (, OR, 95CIs)
n87
Odds 2.4 (1.4) 7.2 (5.4) 3.83 (2.04) Odds
(adjusted) 2.5 (1.7) 8.1 (6.8)
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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?
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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

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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

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Depression (person with dementia)
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Depression (person with dementia)
n84
n20/84 (24)
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15 months later.
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)
participants from the main sample who completed
the program had valid questionnaires at the
start of the group
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Depression (person with dementia)
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Other findings at 15 mths

• Carers' mental health, stress from behaviours,
  depression were not significantly different from
  the start of group

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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

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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

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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?

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Acknowledgements

• The participants
• Alzheimers Australia staff, Anna Sarre Glenys
  Badger
• Henry Brodaty, Richard Rosewarne
• Helen Berry, Keith Dear, Anthony Jorm
• Australian Government

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For further information

• The Living With Memory Loss Programme
• Glenys Badger, Alzheimer's Australia
• Email glenys_at_alzheimerssa.asn.au.