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Supporting Dementia Caregivers: A work in progress

Supporting Dementia Caregivers: A work in progress. Dr. Birgitte Schoenmakers. Imagine the following (common) case: Supposed cognitive decline announced by close relatives in the absence of the concerned patient Inventory interacting aspects: Diagnosis Relatives Patient Policy

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Supporting Dementia Caregivers: A work in progress

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  1. Supporting Dementia Caregivers: A work in progress Dr. Birgitte Schoenmakers

  2. Imagine the following (common) case: • Supposed cognitive decline announced by • close relatives in the absence of the concerned patient • Inventory interacting aspects: • Diagnosis • Relatives • Patient • Policy • Treatment • prognosis

  3. Some theory: • Attitude of GP: aware of skills and limits, theoretical knowledge • good, disclosing diagnosis weak, confident in • treatment matters, time consuming and frustrating • Expectations of relatives: find GP helpful and comprehensible • but regret lack of empathy and time • Needs of GP and relatives: education, care support • Feasibility of involvement of patient: ethic issue, • medico-legal issue Schoenmakers B ea. 2008

  4. FRUSTRATION seems keyword... • Diagnostic process: ? • Treatment options: when, why? • Care policy: how, who? • Communication through several partners

  5. Study on demand of RIZIV/INAMI Literature and fieldstudy 5065 care dependent elderly and their caregivers (n=105) Recruitment in 2 representative regions in Belgium Cross sectional study Follow up 2001-2004 RCT in 2006 Research

  6. Caregivers reported More depression: 30% More burden More anxiety Lower relation quality Less coping strategies As compared to caregivers of non demented elderly Qualidem field study

  7. Characteristics of the demented do no contribute to the onset of depression in the family caregiver (multiple logistic regression analysis) Qualidem field study

  8. Follow up after 1 year Less depression Less burden Less anxiety Better relation All parameters significantly improved Qualidem field study

  9. Explanation? Strong survivors Attention of research group Normal fluctuation and adaptation Qualidem field study

  10. What do we know? Depression among caregivers = high Institutionalization in 80% of the cases due to depression caregiver Intervention in home care does not yield expected results: high satisfaction in caregivers but no relief in depressive feelings * psychosocial support, support groups, case management, pharmacological intervention, telephone support, respite care Schoenmakers B ea. 2008, Sorensen ea. 2002 Intervention study

  11. Intervention Care coordinator Supporting and organizing home care for 12 m Monthly phone call, 3 monthly visit Care coordinator available 24/24 GP informed for every intervention Intervention study

  12. Use of formal support after 12 months No differences in control or intervention group Extra interventions of care coordinator few caregivers called for help/question Even less interventions carried out No acute needs Profile of these caregivers and patients did not differ (no higher depression, …) from average Intervention study

  13. Discussion Caregiver: elderly, woman, good health, 30% depressed, heavy burden, high anxiety, problem solving behavior Home care: nurse, house keeping, physiotherapist, no care plan Intervention: after 12 months 6 fold reduction in depression, no influence of demented or caregiver characteristics Formal support: no changes over time Intervention study

  14. Conclusions Caregivers organize home care them selves Although high prevalence of depression and burden, no changes in home care Minimum intervention of care coordinator makes the difference Caregivers want to feel supported Intervention study

  15. Role of GP in care process • Caregiver = hidden patient = frail link in care chain • Patient care • Home care, care plans, care coordinators: complex integration? • Remember: effect of interventions...

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