Evidence and innovation

1. 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

2. Are Caregiver Problems Common? • 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. • $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; Zhu et al 2006) Dr. Joel Sadavoy MSH

3. Caring for Dementia is a Major Issue in Canada • 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

4. Dr. Joel Sadavoy MSH

5. 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

6. Causes of Caregiver Burden are Complex • 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

7. Caregiver Burden is strongly associated with behavioural disturbances in 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

8. Why Do Caregivers Seek help? • 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

9. Behavioural Problems Associated with Depression in Caregivers Dr. Joel Sadavoy MSH

10. 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 (Brodaty 1996, Burns et al 2000;Kneebone et al, 2003; Van Den Wijngaart et al 2007) Dr. Joel Sadavoy MSH

11. 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 (Brodaty 1996, Burns et al 2000;Kneebone et al, 2003; Van Den Wijngaart et al 2007) Dr. Joel Sadavoy MSH

12. Intervention helps! • 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

13. 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

14. 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

15. 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

16. What kind of interventions are more effective: Data from Reach II (Belle 2006) CombinedMulti-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

17. REACH 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

18. Problem-Focused Intervention is Most Effective (Selwood et al J Affect Dis 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

19. Designing an evidence-based program • 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

20. Evidence based goals of a combined- intervention program • Enhanced practicalskills • 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

21. The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training Program design Dr. Joel Sadavoy MSH

22. ReitmanTeam (Aiello, nurse TBA, Wesson ,Chan, Choi, Sadavoy Fellow, Ballon, McNaughton, Kontos, Lancee Vico, researcher TBA ) Skills Self efficacy mastery Reitman Skills Training; Ethnocultural capacity Cognitive –appraisal, Problem solving CBT Group methods Emotion focused coping PST Group Methods Individual Interventions; Variable duration as necessary Prof support /Treatment. Geriatric Psych OPD team (Grek, resident, Sy, Wesson, Aiello, community Partners, Wellness Centre, Vico) CR needs Full Assessment, treatment Parallel group Dr. Joel Sadavoy MSH

23. What Outcomes Should Be 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

24. 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

25. 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

26. 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 Dr. Joel Sadavoy MSH