1. Introducing a Planning Framework and Toolkit for Improving the Lives and Care of Persons with ADRD and their Families Salinda Horgan, Ph.D., Ken LeClair, MD, FRCP, Sherry Dupuis, Ph.D. New Directions in Seniors’ Mental Health CCSMH National Conference, 2007

2. There is no apparent conflicts of interest that may have a direct bearing on the subject matter of the presentation.

3. Background one in thirteen over age 65 affected by ADRD numbers of Canadians with dementia will more than double by 2031 built on work of Ontario’s Strategy for Alzheimer Disease and Related Dementia (1999-2004) Framework and toolkit created by the Ontario Roundtable on Future Planning for People Affected by ADRD

4. Participants Service Practitioners Health Administrators Consumers Academics Alzheimer Society of Ontario Alzheimer Knowledge Exchange Advocacy Centre for the Elderly Murray Alzheimer Research and Education Program Ministry of Health and Long-Term Care Assistant Deputy Minister, Ontario Seniors’ Secretariat

5. Framework Vision A society where all persons with ADRD and their family partners in care live meaningful lives across the progression of the illness through active personal and community engagement.

6. Model

7. Guiding Principles Relationship-Based Approach Ethical Principle of “Do No Harm” Citizenry Rights of autonomy and self- determination, interdependence, full-engagement in life, and respect and dignity Respect for Diversity and Inclusiveness Fairness in Eligibility and Accessibility Accountability

8. Planning Pillars 1.An Informed Society  individual and public awareness  education for persons with ADRD and their families  education and training for all those working in dementia care  learning opportunities for the broader community  discovery and translation of knowledge

9. Planning Pillars 2.Enabling and Supportive Environments  functional, accessible physical environments  supportive social environments  safety and security  flexible and fluid, need-based access to services and support across the continuum of care  options in self- and facilitated-care and income security for family partners in care  equitable approaches to rural/urban and other diversity issues

10. Planning Pillars 3.Personal, Social and System Connectedness  continued community engagement and participation  citizen input in planning, delivery and evaluation  collaboration and partnership among service providers  linkages between formal and informal support sectors

11. Implications for Policy and Practice Systems-level Implications: !government leadership through proactive policy, support, and adequate resource allocation to support the realisation of a life of meaningful activity and engagement beyond work for persons with ADRD !need for a coordinated and integrated system of health care and expanded supportive community services → requires removal of silo approach !leisure and recreation services must be a major part of this integrated system !investment into the development of an increased and stable workforce in dementia care !investment in public awareness initiatives

12. Community-level Implications !need for flexible options and programs that are responsive to the unique, changing, and individualised needs of all families living with dementia !availability of user-directed or self-managed services and programs and direct payment for the work that families do in dementia care !requires elimination of policies that restrict continued engagement in community !changes to funding and accountability structures that better support communities, activities and programs that support people in community life

13. Organizational Implications !requires the direct involvement by persons with dementia in decision-making processes !provide educational/training opportunities for persons with dementia and their partners in care (e.g., A Changing Melody) !shift from patient-expert professional relationships to citizen- facilitator relationships !identify core competencies required by those working in dementia care and ensure that staff have the knowledge base and skills required to work with persons living with dementia and their families

14. Copies of the Planning Framework and Toolkit are available at: www.akeontario.org www.marep.uwaterloo.ca