National Dementia Conference 2018: A word from CCEL Staff Lawyer, Valerie Le Blanc
23 May 2018
By Valerie Le Blanc
On May 14–15, 2018, the Public Health Agency of Canada brought together approximately 190 stakeholders from across Canada to participate in a two-day National Dementia Conference: Informing and Inspiring a National Dementia Strategy in Ottawa, Ontario. Hosted by the Honourable Ginette Petitpas Taylor, Minister of Health, the conference fulfills one of the two key components of the federal National Strategy for Alzheimer’s Disease and Other Dementias Act.
The purpose of the conference was to create “an opportunity for key stakeholders, including those living with dementia, and those working with and caring for them, to share perspectives and provide valuable input to help ensure that the strategy will be reflective of their needs.”
Each day began with a panel discussion for persons living with dementia, caregivers, researchers, health care professionals, and dementia advocates to share their insights and experiences on dementia care and support, research activities, and current initiatives in dementia awareness, stigma reduction, risk reduction and health promotion. Participants then chose from one of five discussion topic sessions (both morning and afternoon) to engage in a dialogue about the successes, challenges and ideas for possible solutions in each topic area. The afternoons then concluded with a panel presentation of the highlights and key takeaways emerging from each dialogue session.
Among those on the panel was Jim Mann, Project Advisory Committee member for CCEL’s current project, Health Care Consent, Aging and Dementia: Mapping Law and Practice in British Columbia, who spoke about his experience living with early onset Alzheimer’s disease.
Day 1—Panel Themes and Dialogue Session Topics:
- Care and Support for People Living with Dementia and their Caregivers
- Diagnosis, Treatment and Care Guidelines: From Evidence to Best Practice
- Integrated Care Across the Continuum
- Innovative Approaches to Care for People Living with Dementia: Best Practices and Emerging Evidence
- Support and Care for Dementia Caregivers
- Palliative and End-of-life Care
- Research on Dementia Prevention and Risk Reduction
- Biomedical, Clinical and Translational Research
- Dementia Research on Care and Quality of Life
- Surveillance, Health Systems and Health Services Research
- Innovation, Technology and Beyond
Day 2—Panel Themes and Dialogue Session Topics:
- Indigenous Perspective and Cultural Understanding
- Awareness Raising, Stigma Reduction, and Public Education in Canada
- Brain Health Promotion
- Awareness Raising and Stigma Reduction: Coordination of Efforts
- Training and Education: From Knowledge Translation to Best Practices
- Equity, Diversity and Inclusion in Dementia Policies, Programs and Services
- Dementia Friendly Communities: Social and Built Environments (Including Housing and Transportation)
- Dancing with Dementia—Sharing Dance for People with Dementia (a joint venture between Canada’s National Ballet School and Baycrest Health Services)
The CCEL was proud to have been invited to attend the conference and contribute to the discussion on development of a national dementia strategy for Canada. Participants actively worked together during each of the discussion forums to share experiences and knowledge about what is working well in the context of care and support for persons living with dementia, and also the challenges to overcome going forward with a national strategy.
Some of the ideas and experiences shared include:
What is working?
- Knowledge and information-sharing
- Meaningful engagement
- Development of a national strategy
- Day programs
- Need for a culturally-relevant approach to working with, and supporting, Indigenous persons living with dementia and their caregivers
- Ageism, discrimination and stigma
- Funding for research and initiatives
- Need for a human rights-based approach to dementia research and support
- Lack of trust for emerging dementia-based technologies
- Adopt a dementia lens to research and support—ensure persons living with dementia have active participation in discussions and initiatives
- Consider needs of Indigenous community members when assisting and working with persons living with dementia and their caregivers
- Research to inform prevention and risk
- Training of new researchers
- Anti-stigma campaigns
- Knowledge translation and education for all sectors of the community that work with or support persons living with dementia and their caregivers
- Continuum of care approach beyond end of life (integrated care plans)
What was clear from the conference participants is a united commitment to work together towards developing a national strategy that will positively impact persons living with dementia, their caregivers and care partners, health care professionals, and researchers. The panel presenters and dialogue sessions were engaging and thoughtful. Participants left the two-day conference with a strong message of hope and desire to continue to work together on the ideas and strategies discussed.
A key takeaway from the conference, and one that informs much of the CCEL’s work on the Health Care Consent, Aging and Dementia: Mapping Law and Practice in British Columbia project is the recognition that a human rights lens needs to be adopted when working with persons living with dementia and their care givers, as well as when developing further research, health care and support services. Participants agreed that shifting the focus to the abilities, rather than inabilities, of persons living with Alzheimer’s disease and other dementias, will not only build capacity and increased awareness for all those involved, but will also ensure a multi-disciplinary, integrated approach to care is taken from the beginning.
A news release posted May 14th indicates the Minister of Health has created a Ministerial Advisory Board on Dementia “to advise her on matters related to the health of persons living with dementia.” The Board currently has 12 members who are individuals living with dementia, caregivers, researchers, advocacy groups, and health care professionals.