Evidence and innovation

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.

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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)

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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


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).


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


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)


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),


Behavioural Problems Behavioural Problems Associated with Depression Associated with Depression

in Caregiversin Caregivers


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)


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)


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)


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)


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.).


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).


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)


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.


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.


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


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


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


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)


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)


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


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


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

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