dr. joel sadavoy msh evidence and innovation the science of caring for caregivers joel sadavoy md....
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Dr. Joel Sadavoy MSH
Evidence and Evidence and innovation innovation
The Science of Caring for The Science of Caring for CaregiversCaregivers
Joel Sadavoy MD. FRCPcJoel Sadavoy MD. FRCPcProfessor of Psychiatry, University of Toronto, Director, The Cyril & Professor of Psychiatry, University of Toronto, Director, The Cyril & Dorothy, Joel And Jill Reitman Centre for Alzheimer’s Support and Dorothy, Joel And Jill Reitman Centre for Alzheimer’s Support and
Training, Sam and Judy Pencer and Family Chair in Applied General Training, Sam and Judy Pencer and Family Chair in Applied General Psychiatry, and Head of Geriatric and Community Psychiatry Psychiatry, and Head of Geriatric and Community Psychiatry
Programs at Mount Sinai Hospital Toronto.Programs at Mount Sinai Hospital Toronto.
Dr. Joel Sadavoy MSH
Are Caregiver Problems Are Caregiver Problems Common?Common?
Informal caregiversInformal caregivers provide most of the provide most of the care for those with dementia. care for those with dementia.
Informal costs of care provided by the Informal costs of care provided by the family and other caregivers are often higher family and other caregivers are often higher than formal costs and increase with time than formal costs and increase with time and functional decline. and functional decline. $25,381 per patient, (increasing from $20,589 at
baseline to $43,030 in Year 4).
((ErnstErnst et al. et al. 1994;1994; HarrowHarrow et al. 2 et al. 2004004; ; Ernst et al 1994; Ernst et al 1994; Harrow et al 2004; Zhu et al 2006)Harrow et al 2004; Zhu et al 2006)
Dr. Joel Sadavoy MSH
Caring for Dementia is a Caring for Dementia is a Major Issue in CanadaMajor Issue in Canada
Recent data: Recent data: 450 000450 000 people with people with all forms of dementia all forms of dementia
> 60,000> 60,000 new cases of dementia new cases of dementia each yeareach year
expected to expected to doubledouble over the next 30 over the next 30 yearsyears
Refs: Refs: Canadian Study of Health and AgingCanadian Study of Health and Aging: : 19941994;. ;. The The Canadian Study of Health and Aging Working GroupCanadian Study of Health and Aging Working Group. . 2000;2000; Canadian study of health and agingCanadian study of health and aging: : 19941994
Dr. Joel Sadavoy MSH
Dr. Joel Sadavoy MSH
Caregiving Can Have Caregiving Can Have Negative EffectsNegative Effects
Compared to non-caregivers, Compared to non-caregivers, caregivers are at twice the risk for caregivers are at twice the risk for elevations in depressive symptoms elevations in depressive symptoms and increased physical health and increased physical health problems.problems.
(Baumgarten et al. (Baumgarten et al. 19921992, Vitaliano et al 2003; Lee et al 2003)., Vitaliano et al 2003; Lee et al 2003).
Dr. Joel Sadavoy MSH
Causes of Caregiver Burden Causes of Caregiver Burden are Complexare Complex
Inadequate Knowledge and skills Inadequate Knowledge and skills understanding the disease and managing understanding the disease and managing behaviours especially aggression and behaviours especially aggression and depressiondepression
Practical issues: e.g.Practical issues: e.g. environment, finances, environment, finances, safetysafety
Psychological factorsPsychological factors e.g. Helplessness; e.g. Helplessness; hopelessness; role captivity, Loss of the hopelessness; role captivity, Loss of the person and relationship ( dementia has been person and relationship ( dementia has been called a “de-selfing” disease); Renewal of old called a “de-selfing” disease); Renewal of old conflicts; fearconflicts; fear
Dr. Joel Sadavoy MSH
Caregiver Burden is Caregiver Burden is strongly associated with strongly associated with
behavioural disturbances in behavioural disturbances in the care recipient the care recipient
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)
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 Why Do Caregivers Seek help?help?
About 50% 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 Behavioural Problems Associated with Depression Associated with Depression
in Caregiversin Caregivers
Dr. Joel Sadavoy MSH
Protective factors that can Protective factors that can mitigate caregiver distress mitigate caregiver distress
PersonalityPersonality: Mature coping strategies, high : Mature coping strategies, high self efficacy and sense of masteryself efficacy and sense of mastery
a “good” a “good” relationship relationship with the person with with the person with dementiadementia
Social networkSocial network: supportive family members : supportive family members and friends; membership in support groups. and friends; membership in support groups.
Education:Education: knowledge of dementia and its knowledge of dementia and its management management
Availability of Availability of professional supportprofessional support Good functional Good functional health statushealth status coping stylecoping style: Problem solving and : Problem solving and
acceptanceacceptance((Brodaty 1996, Burns et al 2000;Brodaty 1996, Burns et al 2000; Kneebone et al, 2003; Van Den Wijngaart et al 2007)
Dr. Joel Sadavoy MSH
Factors that increase Factors that increase vulnerabilityvulnerability Being a Being a care providercare provider rather than care rather than care
managermanager Relationship: Relationship: wifewife rather than husband; spouse rather than husband; spouse
rather than child; low rather than child; low intimacyintimacy levels levels GenderGender: woman rather than man: woman rather than man Social factorsSocial factors: isolation; loss of family support: isolation; loss of family support Health of caregiverHealth of caregiver: physical illness : physical illness PersonalityPersonality of Caregiver: use of immature of Caregiver: use of immature
coping mechanisms; high expressed emotion; coping mechanisms; high expressed emotion; emotion focused coping; low self-efficacyemotion focused coping; low self-efficacy
((Brodaty 1996, Burns et al 2000;Brodaty 1996, Burns et al 2000; Kneebone et al, 2003; Van Den Wijngaart et al 2007)
Dr. Joel Sadavoy MSH
Intervention helps!Intervention helps!
Overall, the data show that some Overall, the data show that some interventions enable caregivers of interventions enable caregivers of people with dementia to people with dementia to enhance enhance their knowledge, coping skills and their knowledge, coping skills and management of care-recipient management of care-recipient behaviorsbehaviors which in turn improves which in turn improves mood, overall psychological health, mood, overall psychological health, decreases caregiver burden, and decreases caregiver burden, and improves quality of lifeimproves quality of life for both for both caregiver and care recipientcaregiver 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 What kind of intervention seems to work best?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 What kind of techniques are effective: Data from are effective: Data from
Reach IReach 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 What kind of interventions are more effective: Data are more effective: Data from Reach II from Reach II (Belle 2006)(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 InterventionREACH Intervention
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 behavior management for the care recipient.
Dr. Joel Sadavoy MSH
Problem-Focused Problem-Focused Intervention is Most Intervention is Most
Effective Effective (Selwood et al J Affect Dis (Selwood et al J Affect Dis
2007)2007) 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-Designing an evidence-based programbased program
1.1. Define targets and outcomesDefine targets and outcomes2.2. Focus on those at high risk- e.g. isolated Focus on those at high risk- e.g. isolated
wives who are care providers at home and wives who are care providers at home and have physical limitationshave physical limitations
3.3. Accessibility, acceptabilityAccessibility, acceptability4.4. Define Problems in context- e.g. dementia in Define Problems in context- e.g. dementia in
family conflict; psychological makeup of family conflict; psychological makeup of caregiverscaregivers
5.5. Multimodal integrated interventions based Multimodal integrated interventions based on evidence-based principles- individual, on evidence-based principles- individual, group and socialgroup and social
6.6. Evaluate outcomes and research new Evaluate outcomes and research new questionsquestions
Dr. Joel Sadavoy MSH
Evidence based goals of a Evidence based goals of a combined- intervention combined- intervention
programprogram Enhanced Enhanced practicalpractical skillsskills Improved coping/problem solving Improved emotional regulation Enhanced sense of mastery/self-efficacy ReducedReduced depression/anxiety depression/anxiety.. Improved social (marital) interaction/support Optimized functional health of the caregiver Adequate professional support
Dr. Joel Sadavoy MSH
The Cyril & The Cyril & Dorothy, Joel & Jill Dorothy, Joel & Jill Reitman Centre for Reitman Centre for
Alzheimer’s Alzheimer’s Support and Support and
TrainingTrainingProgram designProgram design
Dr. Joel Sadavoy MSH
SkillsSelf efficacy mastery
Cognitive –appraisal,Problem solving
Prof support/Treatment.
Emotion focusedcoping
Reitman Skills Training;Ethnocultural capacity
CBT Group methods
PST Group Methods
Individual Interventions;Variable duration as
necessary
CR needs Full Assessment, treatmentParallel group
ReitmanTeam (Aiello, nurse TBA, Wesson ,Chan, Choi, Sadavoy Fellow, Ballon, McNaughton, Kontos, LanceeVico, researcher TBA )
Geriatric PsychOPD team (Grek, resident, Sy, Wesson, Aiello, community Partners, WellnessCentre, Vico)
Dr. Joel Sadavoy MSH
What Outcomes Should Be What Outcomes Should Be Measured?Measured?
CAREGIVER MEASURES 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 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 Cyril & Dorothy, Joel and Jill Reitman Centre for Jill Reitman Centre for
Alzheimer’s Support and Alzheimer’s Support and TrainingTraining
Target groupTarget group: At home caregivers : At home caregivers 4 phases-4 phases- 12 week active intervention + maintenance 12 week active intervention + maintenance Phase onePhase one: in depth : in depth assessmentassessment- (2 individual - (2 individual
sessions); sessions); scenariosscenarios created with simulated created with simulated patients and simulation teampatients and simulation team
Phase 2Phase 2: : groupgroup education, PST and CBT methods education, PST and CBT methods (4 group sessions)(4 group sessions)
Phase 3Phase 3: : skills trainingskills training using scenario-based using scenario-based simulated situations with professional actors and simulated situations with professional actors and intensive expert coaching; video feedback methods intensive expert coaching; video feedback methods (6 group sessions)(6 group sessions)
Phase 4Phase 4: : MaintenanceMaintenance/Reinforcement sessions /Reinforcement sessions Note: Note: individual interventionsindividual interventions as needed e.g. as needed e.g.
depression management, psychotherapy; duration depression management, psychotherapy; duration individualizedindividualized
Dr. Joel Sadavoy MSH
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; 52:P159–P166
Dr. Joel Sadavoy MSH
Comprehensive individualized psychosocial interventions are effective in reducing
symptoms of depression in caregivers of family members with Alzheimer disease
Marriott A, Donaldson C, Tarrier N, et al: Effectiveness of cognitive- behavioural 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