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)
Ernst et al. Am J Public Health 1994;84:1261–1264; Harrow et al. Am J Alzheimers Dis Other Dement 2004;19:299–308; Ernst et al Am J Public Health 1994;84:1261–1264; . Harrow et al Am J Alzheimers Dis Other Dement 2004;19:299–308.)
Dr. Joel Sadavoy MSH

3. Caring for Dementia is a Major Issue in Canada
Recent data: 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
Refs: Canadian Study of Health and Aging: Risk factors for Alzheimer’s disease in Canada. Neurology 1994;44: The incidence of dementia in Canada. The Canadian Study of Health and Aging Working Group. Neurology 2000;55:66-73; Canadian study of health and aging: study methods and prevalence of dementia CMAJ 1994;150: ; Hux MJ, O’Brien BJ, Iskedjian M, et al. Relation between severity of Alzheimer’s disease and costs of caring. CMAJ 1998;159:457-65
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
Need for knowledge and education about the causes, interpreting and managing new behaviours, understanding the phases of this progressive disease, resources and techniques (e.g. bathing, dressing feeding, aggression, wandering, incontinence, panic/anxiety reactions, aids and equipment);
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),
Depressive symptoms ( hopeless suicidal talking about dying, looking sad and depressed) and arguing and threatening behaviour are among the most distressing to caregivers. Teri
et al. (1992). Psychology and Aging, 7,
Dr. Joel Sadavoy MSH

9. Behavioural Problems Associated with Depression in Caregivers
As shown in Figure 3, the effects of behavioral problems on depression is
mediated by role captivity, that is, the sense of feeling trapped in the caregiver
role. In other words, caregivers for whom behavioral problems lead to feelings
of being trapped become depressed. Once role captivity is considered, behavioralproblems have no direct relationship to depression. Zarit Behavioral Disturbances of Dementia
and Caregiver Issues International Psychogeriatrics, Vol. 8, Suppl. 3, 1996
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. (Wisniewski et al. Psychol Aging. 2003; 18:375-84.).
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: ).
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: ; 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)
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

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.
Selwood et al Systematic review of the effect of psychological interventions on family caregivers of people with dementia Journal of Affective Disorders 101 (2007) 75–89
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 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

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

22. Reitman Skills Training; Ethnocultural capacity
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)
Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S. H., et al. (1992). Assessment of behavioral problems in dementia: The Revised Memory and Behavior Problems Checklist. Psychology and Aging, 7,
Pearlin, LI and Schooler, C. (1978) The structure of coping. Journal of Health and Social Behavior 19 , pp. 2-21
Pearlin, LI,  Mullan, JT,  Semple, SJ and Skaff, MM (1990) Caregiving and the stress process: An overview of concepts and their measures. Gerontologist 30 , pp
ROBINSON, B.C. (1983). Validation of a caregiver strain index. Journal of Gerontology, 38 (3), 344–348.
HADDERINGH, E., KOOTTE, M., VELDE, B.P. TE, KEMPEN, G.I.J.M., BREEMEN, W.M. VAN DEN. (1991). De zorg aan
thuiswonende dementerende ouderen; een inventariserend casusonderzoek naar knelpunten in de zorg voor dementerende
ouderen in de provincie Groningen. [Care for dementing elderly in the community; a case study inventory
into the bottlenecks of the care for dementing elderly in the province of Groningen]. Groningen: Van
Denderen. LAWTON, M.P. (1975). The Philadelphia geriatric center
morale scale; a revision. Journal of Gerontology, 15, 85–89.
RYDEN, M.B. & KNOPMAN, D. (1989). Assess not assume, measuring the morale of cognitively impaired elderly.
Journal of Gerontological Nursing, 15, 27–32
DRO¨ ES, R.M. (1991). In Beweging; over psychosociale hulpverlening aan demente ouderen. [In movement; on
psychosocial care for demented elderly people.] Academic thesis: Vrije Universiteit, Amsterdam.
JONG-GIERVELD, J. DE & TILBURG, T. VAN (1990). Manual of the loneliness scale. Amsterdam: Vrije Universiteit.
JALOWIEC, A. (1987). Jalowiec coping scale (revised version of 1977). Chicago: Loyola University.
EIJK, L.M. VAN, KEMPEN, G.I.J.M., EN SONDEREN, F.L.P. (1994). Een korte schaal voor het meten van sociale
steun bij ouderen: de SSL12-I. [A short scale for measuring social support in the elderly: the SSL12-I].
Tijdschrift Gerontologie en Geriatrie, 25, 192–196.
KAM, P. VAN DER, MOL, F. & WIMMERS, M.F.H.G. (1972). Beoordelingsschaal voor Oudere Patie¨nten. [The assessment
scale for Elderly Patients]. Deventer: Van Loghum Slaterus.
LAWTON, M.P. (1975). The Philadelphia geriatric center morale scale; a revision. Journal of Gerontology, 15,
85–89.
Pfeffer R, Kurosaki T, Harrah C, et al., Measurement of functional activities in older adults in the community. J Gerontol 1982;
Miller M, Paradis C, Houck P et al. Rating chronic medical illness burden in psychogeriatric practice and research: application of the cumulative illness rating scale. Psychiatry Res 1992;41:
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