Effectiveness of family meetings for caregivers of persons with

dementiaa pragmatic RCT

Karlijn Joling

Hein van Hout, PhD

Background

• Prevalence & workforce

• Empowerment & prevention

• Wellbeing informal caregiver main determinant for (premature) long term care admission PwD

• Interventions including family meetings beneficial (Mittelman 1995, 1996, 2004)

• Family meetings rarely used in routine practice

• Efficacy vs effectiveness?

Spectre of Mrazek & Haggerty

Family meetings -> selective prevention

Objective

-Can family meetings prevent anxiety and

depression in caregivers en delay LTC

admission?

____________________________________________________________________________________________

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• Mobilize family, max their contribution

• Improve understanding social support

• Psycho-education

Relieve primary caregiver

Preparation session carer

4 family meetings

Evaluation session

• Purpose & benefits

• Discuss perspectives

• Identify problems

• Problem solving behaviour

• Solutions, allocate tasks

• Planning next session

Flow diagram

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Randomized (n=192)

Family meetings (n=96)

Completed 12 month follow up (n=81)

Usual care (n=96)

Completed 12 month follow up (n=86)

Excluded81 not eligbile410 refusal

ApproachedN = 683

Baseline characteristics N=192

Age, mean 69.5

Female 70%

Spouse of the patiënt 92%

Caring since < 1 year 1-5 years >5 years

32%53%15%

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Caregivers

PatientsAge, mean 79.5

MMSE 21.6

Alzheimer type 57%

Recruited by casemanagers 41%

Participation in intervention stages (N=96)

Fidelity %

Not started 4

Preparation meeting 95

1 or 2 family meetings 76

3 or 4 family meetings 46

Reasons to stop %

resistance of family 10

not useful/ needed 9

too burdensome 8

placement/ death patient 6

practical factors 4

Results

n=38n=34

Depression | Anxiety

Control

Familymeetings

Incident Rate Ratio 0.98

40% new disorder in 12 months!

Severity of symptoms

5

7

9

11

13

15

baseline 6 mnd 12 mnd

interventie

controle

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CESD

Effect size Cohens D = 0.24

HADS

Non sign

2

4

6

8

baseline 6 mnd 12 mnd

interventie

controle

Nursing home admission over 18 mnths

Family meetings24%

Control 19%

HR 1.46 (p=0.38)

Secondary outcome: Burden

Caregiver Reaction Assessment Scale I / UC P-value

Disrupted activities 0.051

Financial problems 0.08

Lack of family support 0.38

Health problems 0.28

Decreased self-esteem 0.37

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Linear regression analyses corrected for unbalanced baseline scores and clustering

Subgroup analyses

Subgroup analyses: no subgroup effects

– high initial distress carer (SSCQ)

– severe dementia (mmse)

– Receiving case management yes/no

Conclusions

• High incidence depression & anxiety (40%)

• No preventive effects

• No delay Long Term Cate admissions

….. nevertheless

• High satisfaction cares

• Wide adoption by care organisations

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Why no effects?

• Wrong target group (selective vs indicative?)

• Follow up too short?

• Wrong outcome measures?

• Limited contrast with usual care?

• Treatment fidelity insufficient?

• …

Finally

Manual & video family meetings at:

www.alzheimercentrum.nl/dementie/informatieve-films/

Hpj.vanhout@vumc.nl

2012; 7(1) Jan 27

Thank you for your attention!

hpj.vanhout@vumc.nl

k.joling@vumc.nl

EXTRA sheets

Thema’s

(Over)belasting en inzicht familie

Hulp durven vragen

Praktische problemen

Onzekerheid toekomst

Gedragsproblemen pt

Evaluatie gespreksleiders

Meerwaarden

Bewustwording en betrokkenheid

familie

Gestructureerd contact

Hulp bij praktische kant

Process analysis

Time duration of sessions, mean (range)

73 min. (47-105)

Number of family members attending the meeting, N (range)

4.4 (2-14)

Patient present during meetings yes no / partly

15%85%

Setting At home At the office

43%57%

Caregiver satisfied with number of sessions

95%

Kwetsbare groep: hoge incidentie

Uitgebreide steun via reguliere zorg

Deelname aan interventie niet optimaal

>> Familiegesprekken meerwaarde voor bepaalde mantelzorgers?

Conclusies