Presentation Outline

1. Shifting the Balance of Care for Persons with Dementia: Findings from Southwest OntarioFrances Morton PhD. Student, Health Policy, University of Toronto A. Paul WilliamsFull Professor & CRNCC Co-Director, University of TorontoPresented to Alzheimer Disease International Annual ConventionMarch 28, 2011

2. Presentation Outline • Acknowledgements • Balance of Care Summary • Comparative Findings • Insights & Implications

3. Conflict of Interest Disclosure Frances Morton has no real or apparent conflicts of interest to report.

4. Acknowledgements • Research Partners in 9 Regions of Ontario • CCAC Senior Management & Decision Support Teams • LHIN Staff • BoC Steering Committee and Expert Panel • Balance of Care Research Group • Paul Williams, Raisa Deber, Janet Lum, Karen Spalding, Walter Woodchis • Frances Morton, Jillian Watkins, Ali Peckham, Kerry Kuluski, • Funders • CIHR Fredrick Banting and Charles Best Doctoral Award • CIHR Team in Community Care and Health Human Resources

5. Targeted, Integrated, Managed Care Kaiser Permanente Triangle Source: UK Department of Health (2005)

6. Balance of Care:Key Assumptions What determines optimal balance of residential LTC and H&CC at the local level? Demand side Supply side Upward Substitution Downward Substitution

7. Comparative Findings: ADL Self-Performance Hierarchy Scale Eating, personal hygiene, locomotion, toilet use

8. Comparative Findings: IADL IADL Difficulty Scale Meal preparation, housekeeping, phone use, medication management

9. Comparative Findings:Caregiver Living with Client?

10. Comparative Findings: Cognition Cognitive Performance Scale Short term memory, cognitive skills for decision-making, expressive communication, eating self-performance

11. Sample Vignette for Vega • Not cognitively intact • Functionally independent in all ADLs with the exception of bathing (limited assistance is required). • Experiences no difficulty using the phone, some difficulty with meal preparation, and managing medications and great difficulty with transportation and housekeeping. • Not have a live-in caregiver. The caregiver is an adult-childwho lives outside of the home (provides advice/emotional support & assistance with IADLs).

12. Sample Vignette for Xavier • Not cognitively intact. • Requires some assistance with ADLs (independent in locomotion in the home, eating, personal hygiene and toileting; extensive assistance required with bathing). • Experiences some difficulty using the phone and great difficulty with housekeeping, meal preparation, managing medications, and transportation. • Not have a live-in caregiver. Xavier’s caregiver is an adult child who lives outside the home (provides advice/emotional support & assistance with IADLs).

13. Insights: Cognition a “Game Changer” Cognitive problems stimulated whole new discussion Even though there are many excellent community-based services and programs for PWDs, experts saw ADRD as a major barrier to remaining in community Complicated needs of PWDs, and multiplicity of services and programs, can trigger a LTC admission, even when alternatives exist

14. Insights: LTC Waitlists Reflect System Problems Many people should not have been on a wait list in the first place – they could have been supported in the community, particularly if addressed early Aim should be to get to people early and keep them later – prevention and maintenance are crucial We are getting to people too late – especially persons living with dementia

15. Insights: Need to Integrate Across Services Competitive procurement process and lack of ADRD knowledge hindering partnerships and creativity Supportive Housing/Assisted Living recommended however often not proactive – although “grandfather” existing clients ADPs recommended however need more availability (i.e., longer times and more days

16. Insights: LTC “Upward Substitution” for Community Care Options IADLs top wait list drivers in all regions Transportation, nutrition, housekeeping “Upward” to “downward” substitution Barriers to accessing “lower level” services have often meant LTC (or hospitals) the default option WHY are Copper individuals - requiring transportation and housekeeping - slated for LTC WHY will SH not take on PWDs unless they’ve been “grand-fathered”

17. Implications: People and System Costs While expert panellists sympathetic of needs for PWDs and caregivers, care packages were constructed on a service-by-service basis – became complicated & costly Lower level IADLs needs are key Services must be present (e.g., overnight SH; ADP 6 – 7 days per week with evenings) Case management/navigation piece crucial Unit of care needs to = individual and carer

18. Implications: Change Policy Legacy A policy legacy has largely ignored integrated, community-based care options for PWDs Home & Community Care can i) Substitute for Acute Care ii) Substitute for LTC, or iii) be used for prevention and maintenance – LTC or hospital care are often the default options Need the service capacity to address needs There is considerable potential to enhance outcomes for individuals and system

19. Frances Mortonfrances.morton@utoronto.cawww.crncc.caPlease join us – membership is free