1. Canadian Study of Health and Aging Caregiving Results from the Canadian Study of Health and Aging

2. Canadian Study of Health and Aging Who Cares for People with Dementia in the Community? (Data from CSHA-1) 2.4% of people with dementia have no caregiver (~ 3,000 in Canada)2.4% of people with dementia have no caregiver (~ 3,000 in Canada) 8% have only one person to care for them8% have only one person to care for them 29% live alone (~ 34,000 in Canada)29% live alone (~ 34,000 in Canada) 45% live with only one other person45% live with only one other person People with dementia have fewer friends or relatives than people without dementia.People with dementia have fewer friends or relatives than people without dementia. Source: Can J Aging 1994;13:470-487

3. Canadian Study of Health and Aging Profile of Canadian Caregivers (Baseline Data from CSHA-1) 75% of caregivers were women; 70% were married75% of caregivers were women; 70% were married 29% were also employed29% were also employed 23% of caregivers were the person’s wife23% of caregivers were the person’s wife 12% were the husband12% were the husband 37% were children: 28% daughters, 9% sons37% were children: 28% daughters, 9% sons 23% were other friends or relatives23% were other friends or relatives 5% were paid caregivers. 5% were paid caregivers. Source: Can J Aging 1994;13:470-487

4. Canadian Study of Health and Aging Community Support Services 40% of caregivers used a homemaker service40% of caregivers used a homemaker service 20% used a home nurse20% used a home nurse 9% meals on wheels 9% meals on wheels 8% day centre 8% day centre However, people with dementia received fewer services than non-demented people with the same level of disabilityHowever, people with dementia received fewer services than non-demented people with the same level of disability Source: Can J Aging 1994;13:470-487

5. Canadian Study of Health and Aging “She is very happy that her father is alive and that she can share and enjoy things with him. He is very independent and very loving--often an emotional support for her and the grandchildren” We recorded comments made by the participants and the interviewers… “This subject has Alzheimer’s. For the last four years has not been able to speak or recognize anyone. Can’t do any ADLs; is just in bed.” “Mom had Alzheimer’s. Dad couldn’t cope, so he gave up… He was incontinent and depressed. I had 2 “babies” to look after... I just couldn’t cope.”

6. Canadian Study of Health and Aging Caregiving Patterns Nearly one-third of people with dementia in the community live alone (Ebly et al., 1999)Nearly one-third of people with dementia in the community live alone (Ebly et al., 1999) Caregivers for people with dementia who live alone provide less hands-on care, suffer less stress and are more likely to have considered institutional admission (Ebly et al., 1999)Caregivers for people with dementia who live alone provide less hands-on care, suffer less stress and are more likely to have considered institutional admission (Ebly et al., 1999) Those with dementia who live alone are at higher risk of adverse outcomes, but are no more likely to die than others (Tuokko et al., 1999)Those with dementia who live alone are at higher risk of adverse outcomes, but are no more likely to die than others (Tuokko et al., 1999)

7. Canadian Study of Health and Aging Help given by caregivers In the CommunityIn the Community People with dementia: –The primary caregiver helps with an average of 4.2 activities of daily living –Other informal caregivers on average help with 1.9 activities –Paid caregivers help with 2.3 activities of daily living People without dementia: –The primary caregiver helps with 1 activity of daily living –Other informal caregivers help with 0.3 –Formal caregivers help with 0.6 activity In InstitutionsIn Institutions –Demented: 45% of primary caregivers help with daily activities –Nondemented: 25% of primary caregivers help with daily activities

8. Canadian Study of Health and Aging We studied the impact of a diagnosis of dementia on changes in the caregiver’s health between 1991 and 1996. These results suggest that depression increased mainly in caregivers of people who developed dementia but who remained in the community Remained without dementia Stayed in the community Entered an institution Stayed in an institution Became demented Dementia at both times Change in CES-D Depression score

9. Canadian Study of Health and Aging Caregiver Burden Caregiver stress rises with behavioral problems of the care recipient (aimlessness, aggression, etc.) (Chappell & Penning, 1996)Caregiver stress rises with behavioral problems of the care recipient (aimlessness, aggression, etc.) (Chappell & Penning, 1996) Caregiver burden increases with more disturbing behavior, combined with lower social support (Clyburn et al., 2000)Caregiver burden increases with more disturbing behavior, combined with lower social support (Clyburn et al., 2000) Caregiver and patient characteristics predict depression among dementia caregivers: (Meshefedjian et al., 1998)Caregiver and patient characteristics predict depression among dementia caregivers: (Meshefedjian et al., 1998) The hopelessness theory of depression applied to caregivers (O’Rourke et al., 1997)The hopelessness theory of depression applied to caregivers (O’Rourke et al., 1997)

10. Canadian Study of Health and Aging Use of Community Support Services Those with cognitive problems do not appear to receive services commensurate with their disability (Hawranik, 1998)Those with cognitive problems do not appear to receive services commensurate with their disability (Hawranik, 1998) Few people with ADL problems receive home care services; many who do receive services are not disabled (Crowell et al. 1996)Few people with ADL problems receive home care services; many who do receive services are not disabled (Crowell et al. 1996) More people (24%) receive home care in Nova Scotia than in Newfoundland (11%) (Crowell et al. 1996)More people (24%) receive home care in Nova Scotia than in Newfoundland (11%) (Crowell et al. 1996) More educated people with more disability are less satisfied with community services; dementia caregivers also tend to be dissatisfied (Durand et al., 1995)More educated people with more disability are less satisfied with community services; dementia caregivers also tend to be dissatisfied (Durand et al., 1995)

11. Canadian Study of Health and Aging Factors Associated with Admission to Institutional Care Variable Odds Ratio Age 1.0 No caregiver available 8.4 Caregiver other than spouse 4.6 Parkinson’s disese 2.1 Alzheimer’s disease14.6 Cognitive impairment29.1 Dependency in dressing 4.4 Dependency in feeding 2.8 Bowel incontinence 1.8 Reference: J Am Geriatr Soc 1996;44:578

12. Canadian Study of Health and Aging Institutional Care Admission to institutional care is predicted by advancing age, dementia, functional disability and the absence of a caregiver (Glazebrook et al., 1994)Admission to institutional care is predicted by advancing age, dementia, functional disability and the absence of a caregiver (Glazebrook et al., 1994) Those in institutions are more likely to be women, unmarried, to not have a caregiver, to be cognitively and functionally impaired, and to have a diagnosis such as Parkinson’s disease, a stroke or diabetes (Rockwood et al., 1996)Those in institutions are more likely to be women, unmarried, to not have a caregiver, to be cognitively and functionally impaired, and to have a diagnosis such as Parkinson’s disease, a stroke or diabetes (Rockwood et al., 1996)