Transcript

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

I feel miserable and sad

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

1

2

3

4

5

6

7

8

Start End 3 mths post

Mea

n sc

ore

C-GHQ (carer)

su

bclin

ical

clin

ical

n=84

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].


Top Related