Introducing a Planning Framework and Toolkit Introducing a Planning Framework and Toolkit for Improving the Lives and Carefor Improving the Lives and Care

of Persons with ADRD and their Familiesof Persons with ADRD and their Families

Salinda Horgan, Ph.D., Ken LeClair, MD, FRCP, Sherry Dupuis, Ph.D.

New Directions in Seniors’ Mental HealthCCSMH National Conference, 2007

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

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

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

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.

Model

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

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

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

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

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

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

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

Copies of the Planning Framework and Toolkit are available at:

www.akeontario.org

www.marep.uwaterloo.ca