Evidence and
innovation
The Science of Caring for Caregivers
Joel Sadavoy MD. FRCPc
Professor of Psychiatry, University of Toronto, Director, The Cyril & Dorothy, Joel And
Jill Reitman Centre for Alzheimer’s Support and Training, Sam and Judy Pencer and Family
Chair in Applied General Psychiatry, and Head of Geriatric and Community Psychiatry
Programs at Mount Sinai Hospital Toronto.
Dr. Joel Sadavoy MSH
Are Caregiver Problems Common?
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Informal caregivers provide most of the care for
those with dementia.
Informal costs of care provided by the family and other
caregivers are often higher than formal costs and
increase with time and functional decline.
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$25,381 per patient, (increasing from $20,589 at baseline to
$43,030 in Year 4).
(Ernst et al. 1994; Harrow et al. 2004; Ernst et al 1994; Harrow et al 2004;
Dr. Joel Sadavoy MSH
Zhu et al 2006)
Caring for Dementia is a Major Issue
in Canada
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Recent data: 450 000 people with all forms of
dementia
> 60,000 new cases of dementia each year
expected to double over the next 30 years
Refs: Canadian Study of Health and Aging: 1994;. The Canadian Study of
Health and Aging Working Group. 2000; Canadian study of health and aging:
1994
Dr. Joel Sadavoy MSH
Dr. Joel Sadavoy MSH
Caregiving Can Have Negative
Effects
Compared to non-caregivers, caregivers are at
twice the risk for elevations in depressive
symptoms and increased physical health
problems.
(Baumgarten et al. 1992, Vitaliano et al 2003; Lee et al 2003).
Dr. Joel Sadavoy MSH
Causes of Caregiver Burden are
Complex
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Inadequate Knowledge and skills understanding the disease
and managing behaviours especially aggression and
depression
Practical issues: e.g. environment, finances, safety
Psychological factors e.g. Helplessness; hopelessness; role
captivity, Loss of the person and relationship ( dementia has
been called a “de-selfing” disease); Renewal of old conflicts;
fear
Dr. Joel Sadavoy MSH
Caregiver Burden is strongly
associated with behavioural
disturbances in the care recipient
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Up to 90% of dementia sufferers have significant
behavioural disturbances (BPSD) that challenge and
upset caregivers (see review by Sadavoy et al 2008)
Apathy is the commonest BPSD and impairs function
(Mega 1996, Boyle et al 2003)
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A study of 90 dementia patients in the community,
found that 59% had aggression, 27% wandering and
22% had delusions. (Nagaratnam et al. 1998)
Dr. Joel Sadavoy MSH
Why Do Caregivers Seek help?
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About 50% reported non-cognitive symptoms
or a combination of cognitive and non-cognitive
symptoms as the trigger for seeking diagnostic
referral to memory clinics.
most common personality or behavioural
changes prompting help-seeking were depressive
symptoms, violence and attitude problems,
apathy, paranoia and delusions, and decreased
cleanliness. (Streams et al., 2003),
Dr. Joel Sadavoy MSH
Behavioural Problems Associated
with Depression in Caregivers
Dr. Joel Sadavoy MSH
Protective factors that can mitigate
caregiver distress
Personality: Mature coping strategies, high self
efficacy and sense of mastery
 a “good” relationship with the person with dementia
 Social network: supportive family members and
friends; membership in support groups.
 Education: knowledge of dementia and its
management
 Availability of professional support
 Good functional health status
 coping style: Problem solving and acceptance
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(Brodaty 1996, Burns et al 2000; Kneebone et al, 2003; Van Den Wijngaart et al 2007)
Dr. Joel Sadavoy MSH
Factors that increase vulnerability
Being a care provider rather than care manager
 Relationship: wife rather than husband; spouse
rather than child; low intimacy levels
 Gender: woman rather than man
 Social factors: isolation; loss of family support
 Health of caregiver: physical illness
 Personality of Caregiver: use of immature coping
mechanisms; high expressed emotion; emotion
focused coping; low self-efficacy
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(Brodaty 1996, Burns et al 2000; Kneebone et al, 2003; Van Den Wijngaart et al 2007)
Dr. Joel Sadavoy MSH
Intervention helps!
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Overall, the data show that some interventions
enable caregivers of people with dementia to
enhance their knowledge, coping skills and
management of care-recipient behaviors which
in turn improves mood, overall psychological
health, decreases caregiver burden, and improves
quality of life for both caregiver and care
recipient
Brodaty et al. (2003); Cooke et al. (2001) ; Schulz et al. (2002); Pusey et al (2001)
Mittelman et al (1993,95,96) Selwood et al (2007)
Dr. Joel Sadavoy MSH
What kind of intervention seems to
work best?
Caregiver general mental health is positively
affected by combined programs. i.e. programs
that address both the person with dementia and
their caregiver
Combined programs may be especially useful for
women and minority caregivers; admission to
LTC may be delayed.
(Acton and Kang, 2001; Brodaty et al., 2003; Smits et al 2007)
Dr. Joel Sadavoy MSH
Resources for Enhancing Alzheimer’s
Caregiver Health (REACH) (Belle 2006)
2 phases- REACH I & II
REACH I tested several different interventions at 6
U.S. sites to identify the most promising approaches to
decreasing caregiver burden and depression
(Wisniewski et al. Psychol Aging. 2003; 18:375-84.).
Dr. Joel Sadavoy MSH
What kind of techniques are
effective: Data from Reach I
Active treatments are superior to control
conditions in reducing caregiver burden
Active engagement in skills training statistically
significantly reduced caregiver depression
(Belle et al Psychol Aging. 2003;18:396-405.; Gitlin et al. Psycholog
Aging 2003;18:361-74).
Dr. Joel Sadavoy MSH
What kind of interventions are more
effective: Data from Reach II (Belle 2006)
Combined Multi-component interventions
statistically significantly improved depression,
burden, social support, self-care, and patient
problem behaviors for Caucasian, Hispanic or Latino
caregivers
Cost effectiveness has been demonstrated (Nichols
et al 2008)
Dr. Joel Sadavoy MSH
REACH Intervention
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Target: 5 problem areas: burden, emotional well-being, self-care
and healthy behaviors, social support, and problem behaviors.
Method: 6-month intervention 12 individual in-home sessions (9
sessions) and telephone (3 sessions), telephone-administered
support-group 5 sessions of 5-6 caregivers)
modules
 information,
 safety
 caregiver health and well-being, and
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behavior management for the care recipient.
Dr. Joel Sadavoy MSH
Problem-Focused Intervention is
Most Effective (Selwood et al J Affect Dis 2007)
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Teaching skills to manage specific behaviours
rather than offering general principles is most
effective
Education intervention should be directly linked
to the problems and the person that the CG is
looking after and focused on the practicalities of
looking after them.
Dr. Joel Sadavoy MSH
Designing an evidence-based
program
1.
2.
3.
4.
5.
6.
Define targets and outcomes
Focus on those at high risk- e.g. isolated wives who
are care providers at home and have physical
limitations
Accessibility, acceptability
Define Problems in context- e.g. dementia in family
conflict; psychological makeup of caregivers
Multimodal integrated interventions based on
evidence-based principles- individual, group and
social
Evaluate outcomes and research new questions
Dr. Joel Sadavoy MSH
Evidence based goals of a
combined- intervention program
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Enhanced practical skills
Improved coping/problem solving
Improved emotional regulation
Enhanced sense of mastery/self-efficacy
Reduced depression/anxiety.
Improved social (marital) interaction/support
Optimized functional health of the caregiver
Adequate professional support
Dr. Joel Sadavoy MSH
The Cyril & Dorothy, Joel
& Jill Reitman Centre for
Alzheimer’s Support and
Training
Program design
Dr. Joel Sadavoy MSH
Skills
Self efficacy mastery
Cognitive –appraisal,
Problem solving
Emotion focused
coping
Prof support
/Treatment.
CR needs
Reitman Skills Training;
Ethnocultural capacity
CBT Group methods
ReitmanTeam
(Aiello,
nurse TBA,
Wesson ,Chan,
Choi, Sadavoy
Fellow, Ballon,
McNaughton,
Kontos, Lancee
Vico, researcher
TBA )
PST Group Methods
Individual Interventions;
Variable duration as
necessary
Full Assessment, treatment
Parallel group
Dr. Joel Sadavoy MSH
Geriatric Psych
OPD team (Grek,
resident, Sy,
Wesson, Aiello,
community
Partners, Wellness
Centre, Vico)
What Outcomes Should Be
Measured?
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CAREGIVER MEASURES
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Burden (Zarit) Carer Strain Questionnaire (Robinson, 1983; Hadderingh
et al., 1991) Philadelphia Geriatric Centre Morale Scale (Lawton,
1975; Ryden & Knopman, 1989; Droes, 1991)
Depression (HAMD, GDS, CESD, MADRS, BDI ?)
Personality – Attachment (RSQ; ) Expressed emotion (Camberwell
Family Interview Leff & Vaughn, 1985)
Competence/Coping/mastery: Role Overload scale (Pearlin et al1990);
Personal mastery scale (Pearlin and Schooler 1978). Feeling of
Competence Scale (Teunisse & De Haan, 1994;
Social support: Loneliness Scale (De Jong-Gierveld & Tilburg,1990)
Health: CIRS (Miller et al 1992)
CR MEASURES
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Cognition: MMSE + DSM/ NINCDS-ADRDA Dx
Behaviour (Behav- AD, NPI, RMBPC (Revised Memory and Behavior
Problems Checklist Teri et al 1992)
ADL/IADL- FAQ (Pfeffer et al 1982) ADL (Katz), IADL (Lawton and
Brody)
Dr. Joel Sadavoy MSH
Cyril & Dorothy, Joel and Jill
Reitman Centre for Alzheimer’s
Support and Training
Target group: At home caregivers
4 phases- 12 week active intervention + maintenance
 Phase one: in depth assessment- (2 individual sessions);
scenarios created with simulated patients and simulation team
 Phase 2: group education, PST and CBT methods (4 group
sessions)
 Phase 3: skills training using scenario-based simulated
situations with professional actors and intensive expert coaching;
video feedback methods (6 group sessions)
 Phase 4: Maintenance/Reinforcement sessions
 Note: individual interventions as needed e.g. depression
management, psychotherapy; duration individualized
Dr. Joel Sadavoy MSH
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Comprehensive individualized psychosocial interventions are
effective in reducing symptoms of depression in caregivers of
family members with Alzheimer disease
Brodaty H, Gresham M: Effect of a training programme to reduce
stress in carers of patients with dementia. BMJ 1989; 299:1375–1379
Brodaty H, Gresham M, Luscombe G: The Prince Henry Hospital
dementia caregivers’ training program. Int J Geriatr Psychiatry 1997;
12:183–192
Bourgeois MS, Schulz R, Burgio L: Interventions for caregivers of
patients with Alzheimer’s disease: a review and analysis of con-tent,
process, and outcomes. Int J Aging Hum Dev 1996; 43:35–92
Mittelman MS, Ferris SH, Shulman E, et al: A comprehensive support
program: effect on depression in spouse-caregivers of AD patients.
Gerontologist 1995; 35:792–802
Mittelman MS, Roth DL, Coon DW, et al: Sustained benefit of
supportive intervention for depressive symptoms in Alzheimer’s
caregivers. Am J Psychiatry 2004; 161:850–856
Teri L, Logsdon RG, Uomoto J, et al: Behavioral treatment of
depression in dementia patients: a controlled clinical trial. J Gerontol
B Psychol Sci Soc Sci 1997;Dr.52:P159–P166
Joel Sadavoy MSH
Comprehensive individualized psychosocial interventions are
effective in reducing symptoms of depression in caregivers of
family members with Alzheimer disease
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Marriott A, Donaldson C, Tarrier N, et al: Effectiveness of cognitivebehavioural family intervention in reducing the burden of care in carers of
patients with Alzheimer’s disease. Br J Psychiatry 2000; 176:557–562
Brodaty H, Green A, Koschera A: Meta-analysis of psychosocial
interventions for caregivers of people with dementia. J Am Geriatr Soc 2003;
51:657–664
Pinquart M, Sorensen S: Helping caregivers of persons with dementia: which
interventions work and how large are their effects? Int Psychogeriatr 2006;
18:577–595
Kennet J, Burgio LD, Schulz R: Interventions for in-home caregivers: a
review of research 1990 to present, in Handbook of Dementia Caregiving:
Evidence-based Interventions for Family Caregivers. Edited by Schulz R.
New York, NY, Springer Publishing, 2000, pp 61–125
Schulz R, O’Brien A, Czaja S, et al: Dementia caregiver intervention
research: in search of clinical significance. Gerontologist 2002; 42:589–602
Dr. Joel Sadavoy MSH