Dementia (Canada)

Top 10 priorities

1. What is the impact of stigmas associated with dementia and mental health issues on persons with dementia and their families? What are effective ways of reducing the stigma experienced by persons with dementia and their friends, family and caregivers/care partners?
2. What can be done to support emotional wellbeing, including maintaining a sense of dignity, for persons with dementia?
3. Among persons with dementia, what is the impact of early treatment on quality of life, disease progression and cognitive symptoms?
4. How can the health system build and sustain the capacity to meet the health and social care needs of persons with dementia and their friend or family caregivers/care partners?
5. What services, supports and therapies for friend or family caregivers/care partners of persons with dementia would improve or maintain health, wellbeing and quality of life for persons with dementia and their friends or family caregivers/care partners?
6. After dementia is diagnosed, what would help persons with dementia and their friends, family and caregivers/care partners get the information, treatment, care and services they may need?
7. What dementia-related skills and knowledge should health and social care providers have? What are effective ways of providing them with these skills and this knowledge? How can the number of health and social care providers who have these skills and this knowledge be increased?
8. What enables the creation of dementia friendly communities? What impact do dementia friendly initiatives have on persons with dementia and their friends, families and caregivers/care partners?
9. What would ensure implementation and sustainability of best practices for dementia care within and across health care settings, including effective approaches to providing person-centred care?
10. Among persons with dementia, what are the effects of non-pharmacological treatments compared to pharmacological treatments on behavioural and psychological symptoms of dementia? Can non-pharmacological treatments replace, reduce or be used in conjunction with pharmacological treatments for managing behavioural and psychological symptoms of dementia?

The following questions were also discussed and put in order of priority at the workshop:

11. What tests and assessment procedures would improve the diagnostic process and enable a more accurate and timely dementia diagnosis (including by type of dementia)?
12. What would improve care for persons with dementia in hospital settings, including emergency departments, inpatient units and rehabilitation facilities?
13. What would help persons with dementia and/or their friend or family caregivers/care partners recognize when the transition to a more supportive living environment should happen? What would make the transition process easier for persons with dementia and their friend or family caregivers/care partners?
14. What tests and protocols can improve the ability to predict a person’s risk of developing dementia before noticeable signs and symptoms are apparent, including in people with a family history of dementia? What is the impact of obtaining information about one’s risk of developing dementia on prevention, treatment and care planning?
15. What would help persons with dementia to maintain their independence and complete activities of daily living (including eating, bathing, dressing, taking medications, managing money and using the telephone) while remaining safe and minimizing risk (including financial)?
16. What lifestyle factors, independently or in combination, prevent or delay development of dementia? Including: Diet, specific foods or nutrients; Physical activity; Consuming alcohol, tobacco or cannabis; Sleep habits, including amount of sleep.
17. What are the costs and benefits of remaining at home in the community (with supports) compared to living in other settings such as long-term care and retirement homes? Including costs and benefits to the individual, their family, and society.
18. What would help persons with dementia and/or their family, friends and caregivers/care partners plan and execute end of life decisions (including but not limited to medical assistance in dying)?
19. What are the costs and benefits of alternative models of housing, including dementia villages and small group homes? Including costs and benefits to the individual, their family, and society.
20. What is the impact of staffing models and staff characteristics on the health and quality of life for persons with dementia living in long-term care homes?
21. Among persons with dementia, what are the effects of non-pharmacological treatments compared to pharmacological treatments on quality of life, disease progression and cognitive symptoms? Can non-pharmacological treatments replace, reduce or be used in conjunction with pharmacological treatments?
22. What would help health care providers and persons with dementia and their friend or family caregivers/care partners to work together as a team in caring for persons with dementia?
23. How can care, services and treatments for dementia be tailored to meet the needs of persons with dementia who are without family support?