Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

1. Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

2. INTRODUCTION • Homecareis of increasing importance in • long term care of dementia patients • prevalence of dementia home care in Belgium is 70% • Home care in Belgium affects 2 000 000 relatives and • informal carers • Waiting lists for residence admission • Growing evidence that presence of family carers • on dementia patient outweighs the effects of psychotropic drugs • Sources: FOD Volksgezondheid, Kenniscentrum

3. INTRODUCTION • Institutionalization • 80% of all definitive dementia home care endings is related to • depressed caregiver • Dementia is independent risk factor for definitive institutionalization • Costs of home care exceed costs of residential care • Number of applications largely exceeds number of places • Conclusions • Process of decision making focus of future research • Home care not unconditionally best solution • Focus on avoiding abrupt home care • Sources : Qualidem 2006, Schoenmakers B, ea, (2008) . Int J GeriatrPsychiatry. 2008 Oct 21.

4. II. BACKGROUND • High volumes of literatureon dementia home care • until last decade • Conflictingresults • Due to methodological issues • Due to a lack of consensus definition of dementia caregiver • Focuson wellbeing of dementia patients • Patient related outcome measures • Support directed to patient

5. II. BACKGROUND • Definition • Family caregiver: first described, not defined, in 1982 (Rabins, P) • based upon literature, policy guidelines and consensus • in focus group discussion following definition was composed: • “a family caregiver is person who from obvious • reasons and on a regular base offers care • to a care depending related person • in his direct environment • and who is not committed to any formal • or professional care system”

6. II. BACKGROUND • Outcome measures • Depression • Depressive mood – mild depression • Wellbeing rather than psychiatric diagnosis • Screen in a sensitive way cases at risk • Adopted by international consensus (Interdem 2008) • Burden • Subjective workload • no psychiatric equivalent • state of mind over short time span • Coping • Problem facing strategy • Adjustable over time and by learning

7. II. BACKGROUND • Theoretical framework of this research • assumption: dementia caregivers are overloaded • Stressors of various origins • Mutual influence of wellbeing • Direction of causality based upon literature • Negative impact of care giving outweighs the positive aspects • Wellbeing of care is determinative factor in home care • assumption: support should focus more on caregiver • Negative care impact can be lowered by support • Support highly appreciated but inefficient • No need of new support but facilitation of admittance

8. III. RESULTS • 1. Impact of care-giving • Literature • Impact of care-giving is substantial • Depression in 30-80% of dementia caregivers: • Higher prevalence as compared to caregivers • of other chronically ill patients • Role of individual stressors unclear • Caregiver related features? • Age, gender, relation, socio-economic status • Patient related features? • Care need, behavioural disturbances, continence • Positive aspects related to care-giving • Unfortunately not in balance with negative impact • Source: Schoenmakers B ea. (2010). Maturitas, 2010, march 20

9. III. RESULTS • 1. Impact of care-giving • On the field • Methods • population survey (n= 105) • Dementia versus non dementia caregivers • Primary outcome measures: depression and burden • Results • 30% depression in caregivers • Onset of depression in dementia caregivers was unrelated to patient characteristics • Depression was triggered by burden and an inefficient coping strategy • Depression rates decreased after 1 and 3 years of follow up... • strong survivors? • normal fluctuation? • intervention effect of visits? • Source: Schoenmakers, B, ea. (2008). The European journal of general practice 2009 July 4:1-8.

10. III. RESULTS • 1. Impact of care-giving • Conclusions • Dementia care-giving is a heavy job • Patient characteristics are not the main determinants of a negative care impact • Coping predicts the care impact • Care impact fluctuates over time

11. III. RESULTS • 1. Impact of care-giving • Implications for further research and policy guidelines • Inventory of objective care need should be completed with ratings • of care need by caregiver • Coping concept should be explored as the link between stressor • and impact in dementia home care • Intervention in home care should be altered • along the above principles

12. III. RESULTS • 2. Support to caregivers • Literature results: non pharmacological interventions • 6 large groups of interventional strategies • Psychosocial interventions, respite care, multi-media based support, • case management, physical exercise, communication skills • Highly appreciated but with poor efficacy in terms • of outcome measures • Slightly positive effect of psychosocial intervention on burden • Slightly positive effect of case management on depression • Source: Schoenmakers, B, ea. (2009) Aging and Mental health, April 2009

13. III. RESULTS • 2. Support to caregivers • Literature results • Methodological issues • Population bias: recruited from health care centres • Small sample sizes: burden of participation • Poor reporting of carer characteristics: focus on patient • Short term follow up: 6 to 12 months, • while a mean duration of home care is 3 to 5 years • Control conditions lacked: waiting lists, augmented usual care

14. III. RESULTS • 2. Support to caregivers • Literature results: Pharmacological approach • Strategy: • Suppression of troublesome behaviour by psychotropic drugs • Assumption: • behavioural disturbances important source of stress in caregivers • Drug-types: • cholinesterase-inhibitors, anti-psychotic drugs, antidepressants • Results: • caregiver time spent and burden decreased over • a short term follow up • Critical issues • Sample bias • Duration of drug administration • No sufficient data on caregivers • Source: Schoenmakers, B, ea. (2009) FamPract. 2009 Aug;26(4):279-86

15. III. RESULTS • 2. Support to caregivers • Literature results: the GP’s role • Attitude of GP: • aware of skills and limits, • theoreticalknowledgegood, • disclosing diagnosis weakbutconfident in • treatmentmatters, • time consuming and frustrating • nokeyrole? • Expectations of relatives: find GP helpful and comprehensible • butregretlack of empathy and time • Needs of GP and relatives: education, care support • Source: Schoenmakers, B ea. (2009). Scandinavian Journal of Primary Healthcare, 2009; 27 (1).

16. III. RESULTS • 2. Support to caregivers • Literature results on support to caregivers • Conclusions • Efficacy of home care is disappointing • No instant or long term effect on wellbeing of caregiver • No need for new or more sophisticated supportive interventions • Need for fine-tuning existing support and facilitating of accessibility • Non pharmacological support combined with a pharmacological approach under certain conditions

17. III. RESULTS • 3. Field study: the evidence • Background • Dementia care-giving is stressful • Premature or acute home care endingin 80% of cases • directly related to depressed caregiver • Adequate coping-strategies protect against care impact • Objective care need of patient is not related to stress in caregiver • Interventions are highly appreciated but mainly ineffective • No need for new interventions

18. III. RESULTS • 3. Field study: the evidence • Research question • “Will the intervention of a care counsellor, supporting • In a non hierarchical, multi-disciplinary quasi unstructured • way prevent from depression in the family caregiver? “ • Methods • Randomized controlled design • no blinding but subjects were not informed of ongoing intervention • Frail community dwelling elder, labelled with cognitive impairment • Minimum of care dependency • Screening with MMSE, excluded >22/30

19. III. RESULTS • 3. Field study: the evidence • Methods • Care counsellor intervening on fixed moments • Three monthly visit, monthly phone call, within permanent reach • Control group passively directed to usual care systems • Outcome measures: • Primary: depression in caregiver • Secondary: anxiety, burden, coping • Quantitative inventory of care support

20. III. RESULTS • 3. Field study: the evidence • Results at baseline • Sample size n=62 • 100% visited by home nurse (see recruitment strategy) • 50% visited by home assistant, physiotherapist or cleaning service • 30% of all caregivers depressed, most felt burdened • Patients showed • moderate to high frailty • mild to moderate cognitive decline • In 30% behavioral disturbances • In 75% continence problems

21. III. RESULTS • 3. Field study: the evidence • Results after one year • Odds ratio for depression in treatment versus control arm was 0.16 • (confidence interval 0,03-0,83) • Odds ratio was not influenced by patient or caregiver characteristics: • Due to small sample size multivariate analysis was not feasible therefore • 0dds ratios were calculated for each variable

22. III. RESULTS • 3. Field study: the evidence • Results after one year • Intervention overview • One extra phone call • 10 applications for support • Only 4 carers asked extra visit • 6 carers were proposed a new intervention, only 3 effectively carried out • No significant difference between help seeking carers and others • Formal care support remained stable in both groups

23. III. RESULTS • 3. Field study: the evidence • Discussion • important decrease in depression rates while formal • support remained stable: • Hawthorne effect? • - Carers not informed of ongoing trial • - no decrease of depression in control group • mean depression scores were equal in both groups: • - only mildly depressed caregivers took advantage • of intervention • Weakness: • Small sample size • Effect higher than expected • Strenghts: • Control group conditions • Low impact on daily living of carer

24. III. RESULTS • 3. Field study: the evidence • Discussion • Comparison with other trials • Callahan 2006: control group with augmented care • Charlesworth 2008: befriending to carers • Case management programs: fixed program, not adjusted • to individual needs

25. III. RESULTS • 3. Field study: the evidence • Conclusions • Implications for further research and daily practice • Caregivers organize home care themselves • Home care remains stable, independently of feelings of burden or depression • Minimal intervention of care counsellor and permanent availability can make the difference • Home care should become more accessible • Institutionalization as outcome measure? Long term follow up • Cost analysis?

26. IV. CONCLUSIONS • Family caregivers are a frail but indispensable link in home care • Frailty as hidden patient • Partner in care • Family caregivers organize home care themselves in a more or • less successful way • Professional caregivers inventory home care in an objective way but • do not fully meet the needs of family carers • Interventionsare therefore appreciated but can be more effective by • fine-tuning on individual needs • focus on both patient and carer • Permanent availability • Home carelandscapeis extended but fragmented: • Personal guide through home care could alter depressive • feelings and prevent from premature home care ending • Source: Schoenmakers, B, ea. (2008) Editorial, Dementia 2008.