effectiveness of family meetings for caregivers of persons with dementia a pragmatic rct karlijn...
TRANSCRIPT
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?
____________________________________________________________________________________________
____________________________________________________________________________________________
• 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
____________________________________________________________________________________________
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%
____________________________________________________________________________________________
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
____________________________________________________________________________________________
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
____________________________________________________________________________________________
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
____________________________________________________________________________________________
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/
2012; 7(1) Jan 27
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