Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers
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Transcript of Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers
Dementia Caregiver Support: Beyond the experience
Prof.dr. Birgitte Schoenmakers
I. INTRODUCTION
Homecare is 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
I. 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 Geriatr Psychiatry. 2008 Oct 21.
II. BACKGROUND
High volumes of literature on dementia home care
until last decade
• Conflicting results• Due to methodological issues• Due to a lack of consensus definition of dementia
caregiver
• Focus on wellbeing of dementia patients• Patient related outcome measures• Support directed to patient
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”
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
II. BACKGROUND
Theoretical framework of this research
i. 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
ii. 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
III. RESULTS1. Impact of care-giving
Literature
Impact of care-giving is substantial• Depression in 30-80% of dementia caregivers:
Higher prevalence as compared to caregiversof 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
III. RESULTS1. 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.
III. RESULTS1. 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
III. RESULTS1. 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
III. RESULTS2. Support to caregivers
Literature results: non pharmacological interventions
6 large groups of interventional strategiesPsychosocial 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
III. RESULTS2. 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
III. RESULTS2. 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) Fam Pract. 2009 Aug;26(4):279-86
III. RESULTS2. Support to caregivers
Literature results: the GP’s role
• Attitude of GP: aware of skills and limits, theoretical knowledge good, disclosing diagnosis weak but confident in
treatment matters, time consuming and frustrating no key role?
• Expectations of relatives: find GP helpful and comprehensible but regret lack 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).
III. RESULTS2. 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
III. RESULTS3. Field study: the evidence
Background
Dementia care-giving is stressful
Premature or acute home care ending in 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
III. RESULTS3. 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
III. RESULTS3. 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
III. RESULTS3. 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
III. RESULTS3. 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 therefore0dds ratios were calculated for each variable
III. RESULTS3. 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
III. RESULTS3. 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
III. RESULTS3. 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
III. RESULTS3. 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?
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
Interventions are therefore appreciated but can be more effective by fine-tuning on individual needs focus on both patient and carer Permanent availability
Home care landscape is 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.