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Enabling partnerships among people with early-stage Alzheimer’s, family caregivers, and providers

Enabling partnerships among people with early-stage Alzheimer’s, family caregivers, and providers. C. Ward-Griffin, PhD M. Kloseck, PhD C. McWilliam, EdD J.B. Orange, PhD C. Wong, PhD R. DeForge PhD(c) The University of Western Ontario

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Enabling partnerships among people with early-stage Alzheimer’s, family caregivers, and providers

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  1. Enabling partnerships among people with early-stage Alzheimer’s, family caregivers, and providers C. Ward-Griffin, PhD M. Kloseck, PhD C. McWilliam, EdD J.B. Orange, PhD C. Wong, PhD R. DeForge PhD(c) The University of Western Ontario 26th International Conference of Alzheimer’s Disease March 26-29 2011, Toronto, Canada

  2. Acknowledgements Funding: Alzheimer’s Society of Canada, Canadian Nurses’ Foundation, CIHR (Institute of Aging) Advisory Group South West Community Care Access Centre Victorian Order of Nurses Aging Brain & Memory Clinic - St. Joseph’s Health Care, London Alzheimer’s Outreach Services (AOS) of McCormick Home The Salvation Army London Village Alzheimer Society London & Middlesex

  3. Conflict of Interest DisclosureCatherine Ward-Griffin, PhD Has no real or apparent conflicts of interest to report.

  4. Presentation Outline • Background • Methodology • Preliminary results • Cluster “A” • Cluster “B” • Discussion & Next Steps

  5. Research Program

  6. Background The purpose of this grounded theory study is to understand the social processes amongst those involved with community-based delivery of health care to persons with Alzheimer’s disease (AD). Objectives: • Describe the navigation (i.e. access, use, provision) of community-based health care services as experienced by older adults with early clinical stage AD and their family caregivers and care providers over time; 2) Understand better the partnering experiences among older adults with AD and their care partners, in their access, use and delivery of community-based dementia services; and 3) Expose the challenges and opportunities for refining system access and navigation approaches to enhance the quality of community-based dementia service delivery and care.

  7. Methodology • Critical constructivist grounded theory (Charmaz, 2005) • Attention to power and voice • Meaning resides not in people or in data, but between them • Inductive interpretations are rooted in the data • Theorizing processes • Methods • Theoretical Sampling • Setting (5 recruitment sites) • In-depth interviews (PWD, Family members, Providers) • Field notes • Longitudinal design (3 points of time over 16 months)

  8. Data Analysis • Constant comparison • Initial coding, focused coding, refining cateogries/patterns • Memo writing • Diagramming

  9. Sample Cluster Expansion To date: 5 ‘clusters’ Persons with AD (n = 5) • 3 female, 2 male • Average age: 88 yrs (range 84-88) • Average MMSE: 24.2 (range 20-28) • 4 widowed, 1 married • 4 urban, 1 rural Family members/friends (n = 10) • 1 spouse • 6 adults children + 2 in-laws • 1 adult granddaughter Providers (n = 7) • 3 Personal Support Workers (one of whom was hired privately) • 2 Social Workers • 1 Nurse Practitioner • 1 Geriatrician

  10. Preliminary Findings: Cluster “A”

  11. Preliminary Findings: Cluster “B”

  12. Discussion Conceptualizations of models of care for PWD • Person-centred? • Family-centred? • A Partnership? Conceptualizations of ‘partnership’ • Intersections/Divisions between familial and formal care? • Face-to-face … or … faceless? Next steps: • Complete data collection/analysis • Develop a theory on CDC • Work with Advisory Group to affect change

  13. Thank you

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