Reinforcing the strengths and capabilities of people living with dementia.
The Canadian population is becoming older and more diverse.
Nationally, 1 in 5 Canadians identify as foreign-born, and international research indicates that racially diverse communities have a higher prevalence of dementia and face a lack of culturally safe community support. By 2030, almost a million Canadians will be impacted by dementia.
Dementia is considered one of the most stigmatizing conditions in the world. The stigma surrounding dementia is reinforced by a lack of understanding, negative views, and stereotypes. It is not uncommon for a person diagnosed with dementia to experience self-stigma, engage less with family, friends, and the community, as well as experience relationship changes, all of which can lead to social exclusion, isolation, and a diminished quality of life.
The intersection between living with dementia and being from an ethnically and/or racially diverse cultural group, where the understanding and perception of dementia can vary significantly, is what can make these experiences more complex. The lack of awareness and knowledge about dementia in many cultural communities can be further complicated by the fact some languages do not have a word for dementia or the translated term is negative, such as crazy, demonic, or silly, to list a few.
Gap in culturally specific dementia resources
While dementia is not a normal part of aging, how it is viewed in different countries can be quite varied. In some cultures, symptoms of dementia may be viewed as a mental illness, a normal part of aging, or an older adult connecting to God. Many cultural factors - such as language barriers, familial obligations to provide care, or a sense of shame or denial - can influence the way people, families, and communities perceive, understand, and navigate a dementia diagnosis, and access services or support.
Right now, there is a significant gap in the resources available for different cultural communities. However, simply translating information into different languages, without incorporating cultural adaptations, is not sufficient.
We want to provide resources and support that will help people - particularly people from diverse ethno-racial communities - positively navigate the diagnosis and how to live with dementia.
– Carrie McAiney, lead investigator for Forward with Dementia Canada.
Program helps to close information gap
Dementia is not something to be ashamed of. Knowing more about dementia, including symptoms and changes, can help you understand and prepare for what to expect, and how to support yourself or a person living with dementia.
Understanding cultural nuances is crucial to developing and sharing relevant and culturally appropriate information and resources. This ensures people of all cultures and ethnic and racial backgrounds feel comfortable and confident addressing their health-care needs.
This is one of the goals of the Forward with Dementia program. Launched in 2021 by the International COGNISANCE team, and now led in Canada by the Schlegel-UW Research Institute for Aging (RIA), Forward with Dementia aims to:
challenge stigma, and address stereotypes about dementia.
provide access to information, resources, strategies, and stories that have been co-designed alongside people living with dementia, caregivers, and health and social care professionals.
spread hope by reinforcing the strengths and capabilities of people living with dementia and highlighting that they can continue to lead fulfilling lives.
“When people are diagnosed with dementia, many are told to go home and get their affairs in order,” explained Carrie McAiney, Schlegel Research Chair in Dementia, scientific Director, Murray Alzheimer Research and Education Program (MAREP) and lead investigator for in Canada for Forward with Dementia. “We want to provide resources and support that will help people - particularly people from diverse ethno-racial communities - positively navigate the diagnosis and how to live with dementia.”
I am so excited about this work and that things are changing. With these resources being adapted and translated, I think they’re going to make a difference.
– Angila Kumar, a member of the South Asian co-design team.
The Forward with Dementia team is collaborating with people with lived experience from the Chinese, Italian, and South Asian communities across Canada to develop culturally specific resources. Through this process, the Forward with Dementia team is gaining first-hand knowledge about the perceptions of dementia in each community, and adapting resources that go beyond a direct translation but also take into consideration and reflect cultural nuances, ensuring others within their communities have a better experience after a dementia diagnosis.
“I am so excited about this work and that things are changing,” shared Angila Kumar, a member of the South Asian co-design team. “Being from the Greater Toronto Area (GTA), there are so many cultures around me. With these resources being adapted and translated, I think they’re going to make a difference.”
These resources are currently in development and will be available in early 2024.
GET MORE INFORMATION
Visit ForwardwithDementia.ca to read and download resources in English, French, Italian, Punjabi, and Traditional and Simplified Chinese.
ABOUT THE AUTHOR
Dr. Carrie McAiney is the Schlegel Research Chair in Dementia, scientific Director, Murray Alzheimer Research and Education Program (MAREP) and lead investigator for Forward with Dementia.