In Their Own Words: How COVID-19 Has Impacted the Well-Being of Persons Living with Dementia in the Community.

COVID-19 has had a devasting impact on older adults in Canada, including persons living with dementia. This intrinsic case study sought to understand the perceptions of persons living with dementia regarding how COVID-19 has impacted their well-being. Ten persons living with dementia participated in in-depth qualitative interviews about their experience with COVID-19. Using thematic analysis, four themes were identified: (1) expressing current and future concerns; (2) social connections and isolation; (3) adapting to change and resilience through engagement and hope; and (4) we're not all the same: reflecting individual experiences of the pandemic. Results highlight that while COVID-19 contributed to isolation, concerns, and frustrations, persons with dementia also demonstrated adaptation and resilience. This study reinforced that persons with dementia and their responses to challenges are unique. Therefore, interventions to support persons with dementia must also be individualized to each person's abilities and circumstances.

Separate and Unequal: A Time to Reimagine Dementia.

The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and social care, but none more so than for residential long-term care homes. Mortality rates of older people with dementia in residential long-term care homes have been exponentially higher than the general public. Morbidity rates are also higher in these homes with the effects of government-imposed COVID-19 public health directives (e.g., strict social distancing), which have led most residential long-term care homes to adopt strict 'no visitor' and lockdown policies out of concern for their residents' physical safety. This tragic toll of the COVID-19 pandemic highlights profound stigma-related inequities. Societal assumptions that people living with dementia have no purpose or meaning and perpetuate a deep pernicious fear of, and disregard for, persons with dementia. This has enabled discriminatory practices such as segregation and confinement to residential long-term care settings that are sorely understaffed and lack a supportive, relational, and enriching environment. With a sense of moral urgency to address this crisis, we forged alliances across the globe to form Reimagining Dementia: A Creative Coalition for Justice. We are committed to shifting the culture of dementia care from centralized control, safety, isolation, and punitive interventions to a culture of inclusion, creativity, justice, and respect. Drawing on the emancipatory power of the imagination with the arts (e.g., theatre, improvisation, music), and grounded in authentic partnerships with persons living with dementia, we aim to advance this culture shift through education, advocacy, and innovation at every level of society.

Patient and Public Involvement in Identifying Dementia Research Priorities.

OBJECTIVES: To engage persons with dementia, friends, family, caregivers, and health and social care providers to identify and prioritize their questions for research related to living with dementia and prevention, diagnosis, and treatment of dementia. DESIGN: The Canadian Dementia Priority Setting Partnership (PSP) followed James Lind Alliance PSP methods. Results were compared with the World Health Organization research prioritization exercise and the United Kingdom Dementia PSP. SETTING: Canada. PARTICIPANTS: In the first survey, 1,217 individuals and groups from across Canada submitted their questions about dementia. 249 participated in the interim prioritization. For the final prioritization workshop, the 28 participants included persons with dementia, friends, family, caregivers, health and social care providers, Alzheimer Society representatives, and members of an organization representing long-term care home residents. RESULTS: The Canadian Dementia PSP top 10 priorities relate to health, quality of life, societal issues, and dementia care. Five priorities overlap with one or both of the other two prioritization initiatives. CONCLUSION: These results provide researchers and research funding agencies with topics that individuals with personal or professional experience of dementia prioritize, but they are not intended to preclude research into other aspects of dementia.