What is stigma against dementia?
- Stigma against dementia encompasses any negative attitude or discriminatory behaviour against people living with dementia, just on the basis of having the disease.
- When a disease is as prevalent as dementia, yet still poorly understood, it's easy for false beliefs to spread. Left unchallenged, these beliefs perpetuate stigmatizing attitudes against people living with dementia, reducing their quality of life.
- These attitudes extend to the families and caregivers of people living with dementia, affecting them as well.
- The unfortunate reality is that any person living with dementia is very likely to encounter stigma – even though dementia can affect anyone. No one is immune to the risks of dementia, and there is no cure or treatment that can guarantee prevention.
- People living with dementia did not choose to have this disease, and they certainly don't appreciate being labelled and ignored, among other negative responses, due to their diagnosis.
Stigma takes many forms
There are many ways that stigma can negatively impact the lives of people living with dementia, their families and their caregivers:
- Lack of awareness about dementia
- Harmful and misleading assumptions
- Negative language
- Belittlement and jokes
- No support after diagnosis
- Stigma by association
- Loss of self-worth
People living with dementia are experiencing stigma right now
Even though more than half a million Canadians live with dementia, many feel excluded, ignored and treated differently for something beyond their control.
If you know a person living with dementia, chances are they've experienced discrimination that they wouldn't have faced if they didn't have dementia.
Sadly, while most Canadians acknowledge that dementia is a serious disease, and that people living with dementia are likely to experience discrimination, attitudes that reinforce stigma against dementia are still common.
Together, we can fight the impact of stigma
Positive change starts with learning. When you know the facts behind dementia, you will be able to challenge assumptions and false beliefs when they appear. By sharing your knowledge, you can reduce the negative impact of stigma against people living with dementia, families and caregivers.
Click the link below to learn about direct action you can take to fight stigma against dementia, or keep scrolling down to learn more about the many initiatives that are reducing stigma against dementia in Canada.
People living with dementia are sharing their experiences with stigma
There is perhaps no better way to know what stigma is than to listen to the people who have experienced it firsthand.
Every January, the Alzheimer Society supports Alzheimer's Awareness Month. We encourage you to visit ilivewithdementia.ca to read the stories of people living with dementia, families and caregivers. Let them help you understand what it's like to live with dementia and face stigma.
Canada needs to do more to fight stigma
Stigma doesn't just happen on a personal level – negative attitudes and discriminatory behaviours can be reinforced on a systemic level, too.
That's why it's important that Canadians support the first-ever national dementia strategy, which will take concrete action to eliminate stigma and support dementia-friendly communities throughout the country.
An effective, fully-funded strategy will also improve standards of care for people living with dementia. This is especially vital for people living with dementia receiving support and treatment in hospitals and long-term care homes.
People living with dementia have a right to be free from discrimination
The Alzheimer Society worked with people living with dementia to launch the first-ever Canadian Charter of Rights for People with Dementia.
Among the seven explicit rights of the Charter, the first right is the right to to be free from discrimination of any kind.
We need to build a dementia-friendly Canada now
People living with dementia want to live as well as possible and participate in their communities – but stigma often remains a barrier. You can help remove this barrier by helping your community become dementia-friendly.
Dementia-Friendly Canada is an initiative that will create tools, education and programming that will allow for the development of dementia-friendly communities across the Canada.
More useful links and resources
2017 Awareness survey executive summary. Alzheimer Society of Canada, 2017. We surveyed over 1,500 Canadians to measure their attitudes and perceptions of Alzheimer's disease and dementia. Read the results.
ilivewithdementia.ca. Alzheimer Society, 2020. Part of Alzheimer's Awareness Month, this microsite lets you read the stories of people living with dementia, families and caregivers. You can also learn more about stigma and find the closest Alzheimer Society to you.
Dementia in New Light: A Digital Learning Experience. 2022. This digital learning experience was developed by the research team of Dr. Pia Kontos, Dr. Sherry Dupuis, Dr. Gail J. Mitchell and Dr. Christine Jonas-Simpson. It is a free, interactive educational tool about stigma associated with dementia and how this can be challenged to support people to live well with dementia.
Flipping Stigma Toolkit. Flipping Stigma Action Group and Centre for Research on Personhood in Dementia research team, 2022. Designed by people living with dementia, the people who support them, and those who do research to address the challenges of stigma and discrimination.
How can we include people with dementia in our community? Freedem Films, 2013. If you have been diagnosed with dementia you need a community that is inclusive, understanding and friendly. This video was created by Dr. Sabina Brennan of Trinity College Dublin and Trinity Brain Health. Permission to use this video was granted by Trinity Brain Health, which reserves all rights.
Jim's Story - Dementia Friendly Communities. City of Vancouver, 2015. The City of Vancouver is working in partnership with the Alzheimer Society to build inclusive dementia-friendly communities. Jim Mann, who has been living with dementia for eight years, shares his experience.
World Alzheimer Report 2012: Overcoming the stigma of dementia. Alzheimer's Disease International (ADI). This global-focused report highlights ten key recommendations to overcome the stigma of dementia. It also shares results from a global survey on stigma conducted with people living with dementia and caregivers.