Transcript Challenges in Meeting the Needs of Dementia Caregivers

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
• 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 selfdetermination, 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
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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 citizenfacilitator 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