Rationalizing Norms of Care Provision in Home-Based Dementia Care: A Critical Analysis

1. Rationalizing Norms of Care Provision in Home-Based Dementia Care:A Critical Analysis Canadian Public Health Association 2008 annual Conference, Public Health in Canada: Reducing Health Inequalities through Evidence and Action June 2, 2008

2. Research Team Principal Investigator: C. Ward-Griffin, RN, PhD Co-Investigators: Carol McWilliam, RN, MScN, ED Dorothy Forbes, RN, PhD Marita Klosek, PhD Nancy Bol, RN, MScN Janyth Mowatt, RN, MScN Research Trainees: Abe Oudshoorn (2006-2007) Kristie Clarke (2006-2007) Oona St-Amant (2006-2008) Ryan De Forge (2007-2008) Funding: Alzheimer Society of Canada, CNF, CHSRF, CIHR (Institutes of Aging, Gender, Sex & Health)

3. Purpose • To critically examine client-caregiver-provider relationships in home-based dementia care

4. Research Questions • To acquire in-depth information about the relationship experiences of clients, family caregivers and home health providers involved in dementia care • To identify contextual factors that influence the formation and negotiation of these relationships • To identify conditions that support and strengthen these relationships • To identify potential changes needed in home care services, policy and program delivery in dementia care

5. Research Methods Purposive Sampling: • Recruited clients receiving dementia care from CCAC or home care provider agencies • Dementia care networks consisting of one client, one or more family caregivers, one or more home care providers, one case manager Critical Ethnography: • 1-2 separate in-depth interviews with clients, family members and home care providers • Participant observation of interactions • Field visits approximately three to nine months apart

6. Sample: Clients (n=9) • Average Age: 83.3 years • 4 males & 5 females (2 deceased since recruitment) • Average personal income: $20,000-$39,999 • Residence: 6 urban, 3 rural • Majority: • Canadian • English speaking • Married • Secondary education • Retired

7. Sample: Family Members (n=25) • Average Age: 57.2 years • Average personal income: $40,000-$59, 999 • 1-7 caregivers in network (spousal/adult children) • Female: Male Ratio (2.5:1) • Majority: • Canadian • English speaking • Married • Secondary education • Employed full time

8. Sample: Providers (n=12) • Provider: all PSWs • Average Age: 52.6 years • Average personal income: $20,000-$39,999 • 1-3 providers per network • Female: Male ratio (5:1) • Majority: • Canadian • English speaking • Married • Secondary education • Part time employment (30+ hours/week)

9. Negotiating Relationships in Home-Based Dementia Care Values of Care

10. Negotiating Relationships in Home-Based Dementia Care Making Decisions about Care Values of Care

11. Negotiating Relationships in Home-Based Dementia Care Making Decisions about Care Values of Care Evaluating Care Practices

12. Negotiating Relationships in Home-Based Dementia Care Managing Resources for Care Making Decisions about Care Values of Care Evaluating Care Practices

13. Negotiating Relationships in Home-Based Dementia Care Rationalizing Norms of Care Provision Managing Resources for Care Making Decisions about Care Values of Care Evaluating Care Practices

14. Negotiating Relationships in Home-Based Dementia Care Rationalizing Norms of Care Provision Managing Resources for Care Making Decisions about Care Values of Care Evaluating Care Practices

15. Negotiating Relationships in Home-Based Dementia Care Rationalizing Norms of Care Provision Managing Resources for Care Making Decisions about Care Values of Care Evaluating Care Practices Setting Boundaries

16. Negotiating Relationships in Home-Based Dementia Care Forming Alliances Rationalizing Norms of Care Provision Managing Resources for Care Making Decisions about Care Values of Care Evaluating Care Practices

17. Negotiating Relationships in Home-Based Dementia Care Forming Alliances Rationalizing Norms of Care Provision Managing Resources for Care Making Decisions about Care Values of Care Evaluating Care Practices Setting Boundaries

18. Negotiating Relationships in Home-Based Dementia Care Forming Alliances Rationalizing Norms of Care Provision Managing Resources for Care Making Decisions about Care Values of Care Evaluating Care Practices Setting Boundaries

19. Negotiating Relationships in Home-Based Dementia Care Forming Alliances Rationalizing Norms of Care Provision Managing Resources for Care Making Decisions about Care Values of Care Evaluating Care Practices Setting Boundaries

20. Rationalizing Norms of Care Provision • Norms of care are those taken-for-granted “rules” that govern and reify dementia care • Most often these “rules” are unwritten but clearly understood (e.g. teach and reduce) • These norms may be written policies (e.g. family members are expected to be “involved” in home care) • Individuals within home care (clients, families and providers) co-construct and reinforce norms of familial care (e.g. “families take care of their own”) and formal care (e.g. unable to provide certain types of care)

21. Network 1 Family Physician Day Care Program PSW (Mark) (1957) Thomas (client) (1932) Married 47 Yrs Melanie (caregiver) (1936) Case Manager Jessica (1959) James Katie (1963) George (1966) Darren Trisha

22. Caregiver (George) Mom wasn’t getting much help…they didn’t give much help at all for her after her heart attack. She was supposed to look after my father, look after herself and function around the apartment, to do everything after being in the hospital for less than a week and having had a heart attack. It was a ridiculous scenario. And  It was impossible for me to be there, going through what I was going through [divorce]. So my sister uh, jumped on a plane and came out here and was going to stay here for two weeks, but then a week after she was here or less, she got a phone call saying that her daughter may not live.  But anyways, so she came in to help, but then a week later she had to leave. And then who’s left??My mom’s left in the apartment [on her own].

23. In-Home Provider (Mark) I don’t like my mom to get tired.  That’s why every time I would see her [Melanie]… I say‘Are you okay?’ ‘Oh…do you still have heavy things in the car? I will get them for you.’  Melanie and Thomas have been together I think for more than 50 years...And as far as I can see… their attachment is still the same as they were young…That’s why Melanie cares…patiently, compassionately… Just like yesterday, Thomas was incontinent in the car...I did not see her get mad at Thomas… She is a very nice person.

24. Case Manager Like the back up plan for these memory clients, there isn’t one. So I mean I think that’s how we can do it…four hours a week is what we’re going to do and do whatever you can to make it. And helping out with the day programs... and in between the PSW goes in and we get to go out there every six months if you’re lucky, you’d hear back from the agency and the personal support worker or the spouse may call or a family member.

25. Implications/Conclusions Critically examine taken-for granted assumptions/norms of familial care and formal home care. Who is being advantaged and/or disadvantaged? Tailor the provision of care that will address the individual needs of clients and family members. How might we provide genuine family-centred care? Change policies and practices to ones that promote the health of persons with dementia and their families. How is inequity being address?

26. Questions/Comments