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Effectiveness of family meetings for caregivers of persons with dementia a pragmatic RCT Karlijn Joling Hein van Hout, PhD.

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Presentation on theme: "Effectiveness of family meetings for caregivers of persons with dementia a pragmatic RCT Karlijn Joling Hein van Hout, PhD."— Presentation transcript:

1 Effectiveness of family meetings for caregivers of persons with dementia a pragmatic RCT Karlijn Joling Hein van Hout, PhD

2 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?

3 Spectre of Mrazek & Haggerty Family meetings -> selective prevention

4 Objective -Can family meetings prevent anxiety and depression in caregivers en delay LTC admission? ____________________________________________________________________________________________

5 Mobilize family, max their contribution Improve understanding social support Psycho-education Relieve primary caregiver

6 Preparation session carer 4 family meetings Evaluation session Purpose & benefits Discuss perspectives Identify problems Problem solving behaviour Solutions, allocate tasks Planning next session

7 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) Excluded 81 not eligbile 410 refusal Approached N = 683

8 Baseline characteristics N=192 Age, mean69.5 Female70% Spouse of the patiënt92% Caring since 5 years 32% 53% 15% ____________________________________________________________________________________________ Caregivers Patients Age, mean79.5 MMSE21.6 Alzheimer type57% Recruited by casemanagers41%

9 Participation in intervention stages (N=96) Fidelity % Not started4 Preparation meeting95 1 or 2 family meetings76 3 or 4 family meetings46 Reasons to stop % resistance of family 10 not useful/ needed 9 too burdensome 8 placement/ death patient 6 practical factors 4

10 Results Incident Rate Ratio % new disorder in 12 months! 

11 Severity of symptoms ____________________________________________________________________________________________ CESD Effect size Cohens D = 0.24 HADS Non sign

12 Nursing home admission over 18 mnths Family meetings24% Control19% HR 1.46 (p=0.38)

13 Secondary outcome: Burden Caregiver Reaction Assessment ScaleI / UCP-value Disrupted activities  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

14 Subgroup analyses Subgroup analyses: no subgroup effects –high initial distress carer (SSCQ) –severe dementia (mmse) –Receiving case management yes/no

15 Conclusions High incidence depression & anxiety (40%) No preventive effects No delay Long Term Cate admissions ….. nevertheless High satisfaction cares Wide adoption by care organisations ____________________________________________________________________________________________

16 Why no effects? Wrong target group (selective vs indicative?) Follow up too short? Wrong outcome measures? Limited contrast with usual care? Treatment fidelity insufficient? …

17 Finally Manual & video family meetings at: dementie/informatieve-films/ 2012; 7(1) Jan 27

18 Thank you for your attention!

19 EXTRA sheets

20 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

21 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%

22 Kwetsbare groep: hoge incidentie Uitgebreide steun via reguliere zorg Deelname aan interventie niet optimaal >> Familiegesprekken meerwaarde voor bepaalde mantelzorgers? Conclusies


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