Have you experienced stigma against dementia, or have seen it happen to others?
The Alzheimer Society invites you to share your thoughts. Doing so can help increase awareness of dementia among the general public. Learn more about sharing your experiences.
Lack of awareness about dementia
- Stereotypes and misinformation can intimidate friends and family into not providing help. Due to unfounded myths about dementia, people believe that "nothing can be done", or dismiss symptoms as “just a normal part of old age.” This isn't helpful to hear for a person living with dementia.
- Unfortunately, most people don't seek to educate themselves about dementia – even if they knew someone living with the disease. According to our 2017 Awareness survey, only 5% of Canadians would try to learn more about dementia if someone close were diagnosed.
- Ultimately, many people believe that it's just not possible to live well with dementia. According to the same survey, 1 in 2 Canadians don't believe they could live in well with dementia, and 1 in 4 Canadians believe that their life would be over after getting a diagnosis.
Harmful and misleading assumptions
- People living with dementia get unfairly treated based on assumptions about their abilities. This can be especially uncomfortable for people in the early stages of dementia, who understand that they're being mistreated. This unfair treatment can happen anywhere – in the doctor's office, in the grocery store, even at home.
- It's a common perception that Alzheimer's disease and dementia are the same, when in reality Alzheimer's is just one of many types of dementia. For people who live with a dementia that's not Alzheimer's, it can feel exasperating that other people assume they have Alzheimer's and ignore the symptoms that other types of dementia can bring.
- It's commonly assumed that memory loss is the only aspect to dementia – ignoring the other symptoms that people living with dementia experience. These assumptions can lead people to self-diagnose or diagnose dementia in other people. Only a qualified healthcare provider, such as your family doctor, can provide an official diagnosis.
- Negative language is often used to describe dementia, tending to focus on the losses brought on by the disease – for example, "people suffering with dementia".
- While these losses are real, negative language focuses on weaknesses rather than strengths and illness rather than wellness.
- It reduces people living with dementia to victims, rather than whole persons.
- Wording can also reduce the experiences of people living with dementia to a series of labels, symptoms or medical terms. No one wants to be considered a "patient" or a "case" of Alzheimer's disease.
- According to our 2017 Awareness survey, 51% of Canadians use stigmatizing language when talking about dementia. Examples of stigmatizing language include telling a dementia-related joke, or referring to someone as "senile", "crazy" or "demented".
Belittlement and jokes
- Showing sympathy to someone living with dementia can help, but be careful of saying things like, "I have problems with my memory too. I always forget where I leave my glasses."
- Your challenges with memory are very likely not on the same level as a person living with dementia.
- The person living with dementia likely doesn't want to hear this comparison, either – it feels patronizing, and it minimizes their daily experiences.
- According to our 2017 Awareness survey, 30% of Canadians admit to telling dementia-related jokes. While jokes intend to spread joy, they can also reinforce unfounded public perceptions about dementia.
- In particular, jokes can contribute to negative assumptions about the abilities of a person living with dementia. When this happens, these jokes don't spread joy – they humiliate the person living with dementia and trivialize their experiences.
No support after diagnosis
- Negative reactions from friends, family and co-workers can impact a person’s well-being and ability to manage the changes brought about by dementia:
- Assuming that nothing can be done to help, the people in an affected person's circle may start to withdraw, no longer interacting with the person living with dementia.
- However, this is a time when the person living with dementia needs their circle of support more than ever. Research shows that social interaction can help a person living with dementia stall the progression of the disease into the later stages.
- Due to fear of negative reactions, people experiencing symptoms may avoid seeking a diagnosis. Or they may hide their diagnosis from friends and family members.
- According to our 2017 Awareness survey, 1 in 5 Canadians would avoid seeking help for as long as possible if they thought they had dementia.
- This is especially harmful, because the earlier a person gets diagnosed, the sooner they can get the help and support that can improve their quality of life.
- This is especially challenging for people diagnosed with young onset dementia. Since most people assume that dementia affects people aged over 65, dementia education and resources are often tailored as such. As a a result, it's difficult for people living with young onset dementia to find support appropriate for their unique needs and challenges.
Stigma by association
- Caregivers feel the impact of stigma, too. According to our 2017 Awareness survey, among the 1 in 5 Canadians who have experience caring for someone living with dementia, half have personally experienced stigma. Examples of stigma against caregivers include:
- Difficulty accessing appropriate supports and services.
- Being excluded from participating in treatment or care decisions.
- Being ignored or dismissed.
- Social rejection and avoidance.
- Caring for a person living with dementia can be extremely demanding, often increasing feelings of guilt and stress. According to the same survey, 41% of caregivers believe that their life would be better if they weren't caring for someone living with dementia.
- This sentiment is understandable given that caregivers often find they lack support, even within their own family. According to the same survey:
- 66% of caregivers find the experience of caregiver isolating.
- 87% of caregivers wish that people understood more about the realities of caring for someone living with dementia.
- Only 39% of Canadians would offer support for family or friends who were open about having dementia.
Loss of self-worth
- With all the factors above considered, it's easy for a person living with dementia to experience self-stigma. They start to doubt their abilities and worth to others.
- According to our 2017 Awareness survey, the greatest concern about having dementia is being a burden to others. This ranked higher than other serious concerns such as losing independence and the inability to recognize family and friends.
- For both people living with dementia and the general public, the impression is that people living with dementia contribute nothing to society.
- This is simply not true, as evidenced by the many people living with dementia who are active in their communities and participate in and lead the national conversation around dementia.
- However, stigma makes these opportunities harder for people living with dementia to share their voices.
Now that you've learned what stigma against dementia looks like, find out how you can reduce its negative impact on people living with dementia, families and caregivers.
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.