Janet Dunbrack and Bonnie Schroeder CAG Conference October 2, 2008

1. Program and Policy Perspectives on the Interplay of Risk Factors Associated with Negative Outcomes for Family Caregivers: A Key Informant Report Janet Dunbrack and Bonnie Schroeder CAG Conference October 2, 2008

2. Agenda • Brief introduction to VON • Highlights of the caregiver risk factors key informant report • Predominant risk factors • Effects of the interplay among risk factors • Negative outcomes for caregivers • Mitigating risks – key informant suggestions • Discussion

3. VON Canada • Founded in 1897 in response to unmet health needs of Canadians living in outlying areas • National, charitable, not-for profit health care organization • Governed by a national volunteer Board of Directors • More than 19,000 staff and volunteers • 51 sites and more than 50 different programs and services in 1400 communities • Since 1997, caregiving has been a major theme

4. VON Vision Canada’s leading charitable organization addressing community health and social needs.

5. Interplay of risk factors for caregivers • Purpose of the project: to achieve a deeper understanding of risk factors for caregivers and the interactions among risk factors – derived from practice-based evidence provided by key informants • This project complements a literature review done by Lero, Keating, Fast, Joseph and Cook for HRSDC in 2007: The Interplay of Risk Factors Associated with Negative Outcomes among Family Caregivers: A Synthesis of the Literature

6. Findings from the literature review by Lero et al. • Negative outcomes • Economic • Non-economic • Risk factors • Caregiver characteristics • Care recipient characteristics • Dyad characteristics • Context and nature of care

7. The VON study • Attempts to address knowledge gaps identified by Lero et al. with respect to the interaction of risk factors and the impact of long-term caregiving trajectories • Taps the experience of key informants who interact with caregiver issues on a daily basis and who collectively have knowledge of the situations of thousands of caregivers

8. Methodology - 1 • 32 key informants • All jurisdictions except NT • Social service organizations • Disease-specific organizations • Caregiver organizations • Federal, provincial/territorial governments • Primarily program directors, nurses, social workers • Telephone interviews using an interview guide based on the risk factors and outcomes identified by Lero et al. in the literature

9. Methodology - 2 • Key informants were asked • Which risk factors you observe most often? • Which place the caregiver at highest risk? • How do risk factors interact? • How do they change over time? • What are the outcomes for caregivers of risk factor interactions? • What can be done to reduce the impact of risk factors and interactions? • What can be done to support caregivers?

10. Risk factors observed most often • Social isolation • Nature of the care recipient’s illness, especially dementia, Alzheimer’s, long-term disability or illness • Inadequate support from formal services • Duration (i.e. long) of the caregiving episode • Financial stress

11. Factors judged to be the highest risks • Social isolation • Inadequate support from formal services • Long duration of caregiving • Nature of the care recipient’s illness • Elderly age of the caregiver

12. What does this tell us? • Social isolation is most often observed and is considered to be the highest risk • CR illness, inadequate formal support and duration of caregiving cluster high • Financial stress is rated lower than these factors • Elderly age of the caregiver shows as high risk

13. Impact of long-term caregiving • Increased social isolation • Increased financial stress • All risk factors intensify • Inadequate formal supports (crises – wait lists) • Increased costs of caregiving (e.g. modifying the home)

14. Social isolation again • Social isolation • Most frequently observed • Judged to place the caregiver at highest risk • Judged to increase the most as caregiving is prolonged

15. Risk factor interactions - 1

16. Risk factor interactions - 2

17. Outcomes for caregivers of risk factors and their interactions • Caregiver health decline or mortality • Caregiver depression • Burnout and exhaustion • Job loss resulting in financial stress, social isolation and loss of personal identity • Negative impact on family relationships

18. Mitigating risks and outcomes • More formal services, especially home care • More flexibility in services • More caregiver education and access to information • More respite support • Support to self-identify as a caregiver and to seek support earlier

19. Key informant suggestions for supporting caregivers Families – share the burden Employers – flexibility and validation Communities – Neighbours – transportation – breaking social isolation Health care system – more home care support Governments – caregiver strategies

20. Some conclusions • Social isolation may be the highest risk for caregivers • Social isolation and financial stress are central to risk interactions • Financial stress can precipitate other risks • Long-term caregiving accentuates risks • Age-related dementia is a high risk and will grow as the population ages • Inadequate, inappropriate and inflexible formal supports heighten caregiver risk

21. Questions? FOR MORE INFO, CONTACT: Bonnie Schroeder Director, Caregiving VON Canada bonnie.schroeder@von.ca