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. 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
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.
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
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
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
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
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) Fam Pract. 2009 Aug;26(4):279-86
III. RESULTS
2. 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. 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
III. RESULTS
3. 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. 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
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
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
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
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
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
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
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?
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.