Dementia: What Canada's doing

Purpose: This quantitative survey established a national baseline on Canadians’ awareness, attitudes, perceptions and behaviours related to dementia.

Respondents: 4,207 Canadians, 18 years of age and older. Oversampling allowed for results to be broken out for unpaid caregivers (938) and populations likely to be at higher risk, including individuals who identify as Black (260), Hispanic/South American (133), Southeast Asian (212), South Asian (214), or Indigenous (587).

Learn more about Dementia survey: 2020

Purpose: This quantitative survey gathered the perspectives of Indigenous individuals as well as those who provide care to Indigenous people living with dementia. The survey focused on dementia guidance (including guidelines and best practices on prevention, diagnosis, treatment and management), stigma reduction, dementia-inclusive communities, and emergency preparedness and response.

Respondents: 1,008 respondents 18 years of age and older, including 111 paid care providers and 176 unpaid care providers (who may or may not be Indigenous themselves) providing care to Indigenous individuals living with dementia, 28 Indigenous persons living with dementia, and 693 Indigenous respondents who were not care providers (paid or unpaid) or living with dementia. Indigenous respondents lived in urban, rural or remote locations, or First Nation reserves.

Learn more about Dementia guidance and Indigenous populations in Canada: 2021

Purpose: This quantitative and qualitative research focused on the perspectives, experiences, and knowledge of dementia care providers (paid and unpaid) in Canada through a national survey and in-depth interviews.

Respondents: 1,252 paid care providers (including doctors, nurses, developmental service workers, personal care workers, and first responders) and 341 unpaid (usually family and friend) caregivers responded to the national survey, which was complemented by 51 in-depth individual interviews.

Learn more about Knowledge, perspectives and experience of dementia care providers: 2021

Purpose: This qualitative research explored needs and preferences related to an online dementia portal, including desired features, trusted sources, topics and how to make online information more accessible.

Respondents: 25 focus groups were conducted, organized by these audiences: general public; individuals whose health conditions put them at higher risk of developing dementia; unpaid care providers for people living with dementia; paid care providers (first responders, healthcare professionals, and care and support personnel); and people living with diagnosed dementia.

Learn more about Priorities for an information portal on dementia: 2021

Purpose: This qualitative and quantitative research aimed to gather a Canadian perspective on the key components that contribute to quality of life for people living with dementia, drawing on lived experience.

Respondents: 40 in-depth interviews with people living with dementia and/or their caregiver and a survey of 556 people living with dementia and/or their caregiver. Survey respondents included 51 people living with dementia, 190 people living with dementia with the assistance of a caregiver, and 315 caregivers who completed the survey on behalf of the people living with dementia for whom they cared.

Learn more about Quality of life and dementia: 2021

Purpose: This qualitative research focused on individuals living in official language minority communities (OLMCs) to obtain a deeper understanding of their knowledge, experiences, and attitudes related to dementia prevention, access to dementia information and supports in the language of choice, and dementia-inclusiveness.

Respondents: Seven focus groups with members of OLMCs who were 18 years of age and older, and seven in-depth interviews with unpaid caregivers and persons living with dementia who are also members of OLMCs. This study had a total of 43 participants and included individuals with English as a first language from Quebec, as well as individuals with French as a first language from Ontario, Atlantic Canada (Nova Scotia/Prince Edward Island/Newfoundland and Labrador/New Brunswick), the Prairies (Manitoba/Saskatchewan/Alberta), British Columbia and Yukon.

Learn more about Official language minority communities and dementia: 2022

Purpose: This quantitative survey explored Canadians’ awareness of modifiable dementia risk factors along with enablers and challenges that have an impact on the uptake of healthy behaviours linked to risk reduction.

Respondents: 2,050 Canadians between the ages of 18 and 74 with oversampling to allow for results to be broken out for certain populations identified as likely to be at higher risk: individuals who identify as Black (139), South Asian (135), or 2SLGBTQI+ (370).

Learn more about Dementia prevention: 2022

Purpose: This quantitative and qualitative research focused on Canadians’ attitudes, knowledge and experiences related to dementia-inclusive communities.

Respondents: 16 focus groups in total, targeting four employment sectors more likely to engage with people living with dementia: retail and food services; transportation and public safety; recreation, fitness, community and religious organizations; and financial services; along with a survey of 6,049 Canadian adults aged 18 and over. Oversampling allowed for results to be broken out for certain populations, including the four employment sectors (686), ethnic and cultural minorities who identified as Black, Hispanic, Southeast Asian or South Asian (1,205), unpaid caregivers (1,869), and individuals who identify as 2SLGBTQI+ (540).

Learn more about Understanding Canadians’ attitudes and knowledge to promote safe and supportive dementia-inclusive communities: 2023

Purpose: This quantitative research focused on attitudes, knowledge and perceptions related to dementia and dementia-related stigma. It also measured changes since the 2020 baseline survey.

Respondents: 5,056 Canadians, 18 years of age and older, including 1,604 unpaid dementia caregivers. Oversampling allowed for results to be broken out for certain populations including individuals who identify as Black (181), Hispanic (68), Southeast Asian (254), South Asian (253), or Indigenous (188).

Learn more about Stigma related to dementia in Canada: 2023

Purpose: This survey revisited public opinion research questions to track change over time, in particular from the 2020 baseline survey, on topics including perceptions of people living with dementia, comfort level interacting with people living with dementia, and comfort with seeking and sharing information about a dementia diagnosis. The survey also tracked changes from the 2022 prevention survey including on awareness of modifiable risk factors as well as factors affecting uptake of dementia risk reduction behaviours.

Respondents: 4,427 respondents living in Canada who are 18 years of age or older. Oversampling allowed for results to be broken out for certain populations identified as likely to be at higher risk, including individuals who identify as Black (213), South Asian (223), Southeast Asian (228), Hispanic (144), Indigenous (365) or 2SLGBTQI+ (530).

Learn more about Dementia tracking survey: 2024  

Purpose: This qualitative focus group research gathered information on challenges faced by people living with dementia and dementia caregivers during climate-related emergencies, such as forest fires or wildfires, severe air pollution (including from wildfire smoke), floods, heavy rain and snow, ice storms, hurricanes, and tornados. It provides suggestions for tools and resources that could be helpful in supporting people living with dementia, caregivers and care providers in future emergencies.

Respondents: A total of 150 respondents through 25 online focus groups, two dyads (two-person interviews), and 11 individual in-depth interviews. Participants were individuals who had experienced climate-related emergencies in the context of supporting people living with dementia including 45 unpaid caregivers, 42 paid care providers, 28 first responders, 24 government/logistical planners, along with 11 people living with dementia who had experienced climate-related emergencies.

Learn more about Emergency preparedness and response in Canada for people living with dementia: 2024