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Effectiveness of family meetings for caregivers of persons with
dementiaa pragmatic RCT
Karlijn Joling
Hein van Hout, PhD
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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?
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Spectre of Mrazek & Haggerty
Family meetings -> selective prevention
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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
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Preparation session carer
4 family meetings
Evaluation session
• Purpose & benefits
• Discuss perspectives
• Identify problems
• Problem solving behaviour
• Solutions, allocate tasks
• Planning next session
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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
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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%
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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
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Results
n=38n=34
Depression | Anxiety
Control
Familymeetings
Incident Rate Ratio 0.98
40% new disorder in 12 months!
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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
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Nursing home admission over 18 mnths
Family meetings24%
Control 19%
HR 1.46 (p=0.38)
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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
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Subgroup analyses
Subgroup analyses: no subgroup effects
– high initial distress carer (SSCQ)
– severe dementia (mmse)
– Receiving case management yes/no
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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?
• …
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Finally
Manual & video family meetings at:
www.alzheimercentrum.nl/dementie/informatieve-films/
2012; 7(1) Jan 27
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EXTRA sheets
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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
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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%
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Kwetsbare groep: hoge incidentie
Uitgebreide steun via reguliere zorg
Deelname aan interventie niet optimaal
>> Familiegesprekken meerwaarde voor bepaalde mantelzorgers?
Conclusies