How to recognize and respond to stigma about young onset dementia

Stigma—or negative stereotyping—is a major public health problem in Canada. In 2019, Canada’s chief public health officer Dr. Teresa Tam wrote an entire report on the health impacts of stigma in our country.

“Stigma affects us all,” Dr. Tam wrote. “We are all vulnerable to the slow and insidious practice of dehumanizing others and we are all responsible for recognizing and stopping it.” Also, “stigma is associated with poorer physical and mental health outcomes,” says Dr. Tam.

Stereotypes can affect people with young onset dementia too.

“I think there is a lot of stigma associated with it, and that isn’t right,” says Kathleen, a person with young onset dementia in Ontario. “People figure if you have dementia or Alzheimer’s or young onset, you’re just sitting there—you don’t really register what’s happening. And that is so unfair. They look at me and they say, ‘You don’t seem like a person with Alzheimer’s.’ And I say, ‘Yes I am. What do you want me to look like?’”

Some people face more layers of stigma or discrimination than others do in trying to access young onset dementia services and diagnoses.

For instance, most of the healthcare services in Canada use English or French. Yet hundreds of thousands of people in Canada speak Cantonese, Mandarin, Punjabi and Tagalog. Also, most dementia-testing tools are written from a European-centric cultural perspective. They do not centre the experiences of people of Indigenous, African or Asian heritage. More culturally safe tools and spaces are needed to eliminate those overlapping stigmas.

Here are some other points to consider around stigma and young onset dementia.

Be prepared that stigma about young onset dementia exists, even among some health professionals

Some people experience stigma when trying to receive a diagnosis of young-onset dementia.

This stigma can show up as a doctor assuming that any balance issues are an alcohol-related problem, for example. Or that a thinking issue is due to anxiety, for instance.

Stigma can also show up as a doctor making assumptions about your abilities when they find out about your diagnosis.

Keith Barrett, a person with young onset dementia in Ottawa, told us about an experience like this.

“Doctors have their own stigma,” Keith says. “One doctor I had—I don’t have him anymore—his marker was, ‘Can you dress yourself? Yes? Well then you don’t have dementia.’ They [healthcare workers] have to understand that dementia can happen at any age and it has no boundaries on that front.”

Research shows that physicians have their own biases about dementia. And that can intersect with other biases, too.

Be aware that young onset dementia stigma—and its effects—are intersectional

In 1989, the American lawyer and scholar Dr. Kimberle W. Crenshaw coined the term “intersectionality” as a way to see “how power comes and collides, where it interlocks and intersects.”

(If you want to learn more about intersectionality, Dr. Crenshaw has explained it to the National Association of Independent Schools, in a TED talk, and in TIME Magazine. The short YouTube videos “What is intersectionality?,” “Intersectionality 101,” and “Intersectionality and health explained” are also a great way to start learning about this important topic.)

Thanks to Dr. Crenshaw, more and more people are seeing how intersectionality affects dementia stigma, too.

For some people who have lived in Canada as white, male, cisgendered, upper class, abled and heterosexual, having young onset dementia may bring their first major experiences of stigma or negative stereotyping—and the discrimination that results from it.

For other people who have lived in Canada as racialized, female, transgender, working class, disabled and/or queer, having young onset dementia may add another layer or level to their longtime experiences of stigma and discrimination. That is, they may experience many kinds of intersecting stigmas.

In a 2019 study, University of Alabama and Johns Hopkins Hospital researchers wrote, “While often examined in isolation, stigmatized identities do not exist in a vacuum. Most people experience intersecting forms of stigma, which have complex effects on health behaviors, physical health, and mental health.”

Here is an example from real life. Sharon is an LGBTQ+ person who lives in Winnipeg. Navigating her partner Stacey’s young onset dementia issues means facing intersecting layers of stigma.

“Not a single person we saw [at care appointments or medical procedures] assumed right away that I was her partner,” Sharon says. “I always had to come out and explain my relationship. They thought I was her sister or her daughter or something else."

“If I was a man, I don’t think these providers would be asking, ‘Who are you?’” Sharon says. “They would assume right away I was the spouse or partner. It’s almost like you need to define your relationship before you can get that care for your partner.”

“Even the language used [in a lot of medical and dementia care services] doesn’t include us,” Sharon says. “It’s rare to have anyone ask about, or volunteer, their pronouns such as ‘she’ or ‘they.’ Or say ‘partner’ instead of husband or wife. Likewise for dementia documents or resources. So even the language does not include us. And if they don’t see us, are they really going to hear us?”

It’s worth reflecting on how your experience of young onset dementia stigma might be different from someone else’s. Don’t assume everyone’s stigma experiences are the same.

Write or speak to your MP about fairer approaches to young onset dementia

Stigma doesn’t just show up in people’s attitudes. It can also show up in government policies.

For instance, federal government agencies keep track of the number of people in Canada with older-onset dementia. But they do not keep track of the number of people in Canada with young onset dementia.

Some national government supports used by people with dementia only start when the person reaches age 65. They are not available to people with young onset dementia.

Some people with young onset dementia explain that disability programs leave them living in poverty. They would like the government to boost disability payments to cover actual costs of rent, food and utilities. And others would like programs like the Registered Disability Savings Program to work better for people with progressive conditions.

Fighting stigma can mean writing to all levels of government and letting them know how you need their policies to be fairer, better and more inclusive.

Consider whether a young onset dementia ID card might be useful to you

Because of stigma, some people want to be able to selectively disclose that they have young onset dementia.

That is, they want to be able to tell one person they have it without telling everyone else around them in a public space.

This is where ID cards can help. You can show them to just one person, if you prefer, to let them know you might need their help, understanding or patience.

In early 2022, the Alzheimer Society of Canada created designs for young onset dementia ID cards.

You can now download a PDF of these ID cards for free. Then you can print them at home, at a library or at a printshop in your area.

Fill in the blank areas of the card, then keep in your wallet in case you might need it.

These cards are inspired by ones created in 2019 by the UK’s Young Dementia Network.

Choose how you would like to describe your dementia experiences

One way some people manage young onset dementia stigma is through language. They choose how they would like to describe their lived experiences with dementia. They also choose who has access to their formal diagnosis.

For example, some people living with young onset dementia have told us they don’t use the word “dementia” about themselves with people they don’t know very well. They find that using that word with such people brings up disbelief, discrimination, jokes, or bias.

John, a person living with young onset dementia in Calgary, likes to use the words “problems with my thinking” in those situations instead. If he’s at a Costco and needs help finding something, he might say, “Oh, I’m having some problems with my thinking today. Can you help me find….?”

Using the terms “memory issues” or “brain-health issues” are also some options people use.

An equally valid choice is to use the word “dementia” about oneself quite publicly.

Jim, who lives in BC, proudly wears a lanyard that says he is living with Alzheimer’s disease. Jim was diagnosed at age 58.

“I want to share my personal experiences with dementia,” Jim says, “because I hope that they might cause some aha moments.”

Chrissy, a person living with young onset dementia in Vernon, BC, is an award-winning advocate for people living with dementia. She is interested in using dementia terms to, in part, raise awareness and dispel shame.

“All the stigma that's been allowed to percolate for years and years and years that creates so much damage… people look at us and they're afraid of us,” Chrissy says. “So we need to change the fear that people live with. We need to change their image of dementia that allows that fear to exist in their mind.”

All of these choices around language—and more—are to be respected. Friends, family, acquaintances and strangers should respect the language that a person with dementia chooses.

Join a young onset dementia support group or activity group—or advocate for one

Spending time with other people who are living with young onset dementia can provide some relief from dealing with stigma.

“The first thing that comes to mind is it doesn’t make me feel like there’s something wrong with me,” says Janice in Ontario of her young onset group.

Joining a support group or activity group can also help people deal with isolation and changes in relationships. For ways to register, check out our article “How to find support groups, programs and services for people with young onset dementia.”

Unfortunately, however, not everyone in Canada has access to local activity programs for people living with young onset dementia.

But there are virtual groups and message boards you can join across national and international boundaries. For more on that, view our article “How to connect with others living with young onset dementia.”

Another thing you can do is to advocate for more programs in your community and consistently across the country.

Connect with a dementia advocacy group or a disability rights group

One of the main goals of dementia advocacy groups is to fight stigma. Another goal is to push for policies that fight discrimination.

Some of the advocacy groups you can join include Dementia Alliance International and Dementia Advocacy Canada.

The Alzheimer Society of Canada also has an Advisory Group of People with Lived Experiences of Dementia that helps guide advocacy efforts. Many local Alzheimer Society groups also have advocacy support available, so reach out to them too.

Disability rights groups are another option. Young onset dementia is often described as an “invisible disability.”

Groups to consider joining are Disability Without Poverty and the Council of Canadians with Disabilities. Or join a region-specific organization in your province or territory.

Also, because stigma is intersectional, also consider joining or acting in solidarity with related advocacy groups.

Groups like Accessibility for All, Race and Disability Canada, the ASE Community Foundation for Black Canadians with Disabilities and the British Columbia Aboriginal Network on Disability Society are working hard to address the multiple intersectional oppressions faced by some people in Canada.

If you are interested and able, wear an anti-stigma message

Some people like to publicize the impact of dementia on their lives and families by wearing awareness-raising clothing. For instance, advocate Paul Lea, who was diagnosed with early onset vascular dementia, usually wears a forget-me-not design on his hatband to raise awareness.

Everyone who participates in the IG Walk for Alzheimer’s receives a T-shirt about the event. Funds raised in the walk go to the Alzheimer Society.

You can also inquire about Alzheimer Society scarves, masks and more through your local office. (Find yours at alzheimer.ca/find.) Any funds raised also benefit the Alzheimer Society.

This is Dementia is a social enterprise in the UK that sells T-shirts and tote bags promoting awareness of dementia—especially of young onset dementia. They donate their net proceeds to Dementia UK.

The US Alzheimer’s Association also has a large online shop that includes many kinds of shirts, vests, scarves and other clothing. Some of it features the term “#EndAlz” which means “End Alzheimer’s.” Proceeds go to the US Alzheimer’s Association.)

Share anti-stigma resources with others

Friends and family often mean well, but they too may lack knowledge. And they may have their own stigma. One way to help is to share your knowledge and experiences, including anti-stigma resources.

The Alzheimer Society of Canada has a handy “test your dementia stigma” quiz that only takes 5 to 10 minutes to do and can be used to help educate others in your life and social circles. Find that at surveymonkey.com/r/testyourattitude.

The Canadian Charter of Rights of People with Dementia, which was created in 2018 by a group of people living with dementia, is another fantastic resource to share.

More tools, videos and tips worth sharing can be found on our page about stigma against dementia, too. And reading real-life stories at ilivewithdementia.ca can also help people understand dementia better.

The Flipping Stigma toolkit, available at flippingstigma.com, offers options for family and friends to try. The Government of Canada hosts an informative webpage about understanding dementia and confronting stigma. The website Forward with Dementia also has tips about breaking down myths and stereotypes for people living with dementia and for their care partners.

Webinars can also be helpful. Find some now on the stigma section of brainXchange and on iGeriCare.

Reach out to the Alzheimer Society to connect with more support and to influence change

The Alzheimer Society is here to support you when you experience any form of stigma associated with your young onset dementia diagnosis. We offer peer support groups, one-to-one counselling and awareness-raising opportunities.

Alzheimer Society staff would also like to hear from you about your experiences so that they can help influence policy changes and advocate for better things at the various levels of government.

The Alzheimer Society of Canada relies on advisory groups that include people living with dementia. These groups help guide the Society’s efforts. And these advisory groups are typically seeking new members to join and help make a difference.

Connect with your local Alzheimer Society today via alzheimer.ca/find. Or contact our National Information & Referrals Line at 1-855-705-4636 and info@alzheimer.ca.