How to find (or found) support groups & programs for young onset dementia in Canada

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The range of support groups, programs and services for people living with young onset dementia is growing. But there’s still many gaps. Here are some ways to access the services that do exist—and to push for more in your community.

Seven adults sit on chairs in a circle, facing each other and talking

People living with young onset dementia in Canada use many of the same supports, programs and services their friends and neighbours do.

For instance, they may swim at local pools, take their kids to area playgrounds, use town libraries, ride public transit and visit museums and regional cultural festivals. They may also apply for and live in affordable housing, join community groups, and call public health nurses with urgent questions.

It can be difficult, however, for many people living with young onset dementia to find and join programs specifically designed to meet their needs.

A University of Manitoba study found in 2019 that “many dementia services have developed within geriatric programs”—that is, programs for older people. And: “Without alternative options for younger people, their access to care and supports is limited.” (This University of Manitoba study can be read at the end of this doctoral thesis).

“We searched high and low and there was just nothing out there,” one person living with young onset dementia told the study researchers. “There’s tons of stuff for over 65 but nothing for under 65.”

The good news is that given the growth of virtual programs in the past few years, there are now a few more ways to access programs and support groups for young onset dementia—and advocate for more. Here are some tips on getting started.

Contact your local Alzheimer Society

Your local Alzheimer Society has staff and volunteers who are experts on the dementia-specific services and programs in your area. And they often know of programs that are not advertised publicly, or that might be referral-based.

Connect with your local Alzheimer Society using the contact information at alzheimer.ca/find. Or reach our national information and referrals line at [email protected] or 1-855-705-4636. The team there can help you link up with your local society experts and supports ASAP.

“When I first got involved with the Alzheimer Society and the local group here, I was really trying to connect with somebody [with young onset dementia] who was still working—like who had the similar attributes, as I did,” says Keith Barrett, who lives with young onset dementia in Ottawa. “And there was nobody in Ottawa they could identify. [But] that’s where I got Mary Beth Wighton’s name. She was the first person [with young onset dementia] I actually was able to connect with.”

That one peer contact led to more networks of support and information for Keith.

Keith is also now a member of the Alzheimer Society of Canada advisory group, helping to grow more services, resources and programs for those living with dementia.

Reach out to your specific disease-support society in Canada too

Young onset dementia can be caused by more than 50 different diseases or conditions.

Huntington disease, Parkinson disease, stroke, severe head injury, progressive supranuclear palsy and multiple sclerosis are just a few of the factors that can cause or coincide with young onset dementia.

It’s important to reach out to whatever other national societies are relevant to your own experience. These societies address the disease associated with your dementia. They usually have their own range of specific support groups, programs and services that can support your health and well-being.

For example, the PSP Society of Canada has offered a monthly virtual support group for people living with progressive supranuclear palsy, multiple system atrophy and corticobasal degeneration.

Some of the other societies out there include the Huntington Society of Canada, Parkinson Canada, the Heart and Stroke Foundation of Canada, Brain Injury Canada and the MS Society of Canada, just to name a few. You can find more societies by searching for your specific condition on brainXchange’s directory.

Get tips from other people with young onset dementia

People living with young onset dementia are often the experts of knowing where to find support groups, programs and services in their area or online.

These people can be folks you meet through online dementia forums, advocacy groups, Alzheimer Society support groups and more.

For example, in Ontario’s York Region, there is a virtual support group that runs weekly for people with young onset dementia. If you are able access this group, or ones like it, the people in the group can help you find out about even more services with young onset dementia.

Find out more about how to connect with peers and peer-specific support in our article “How to connect with other people living with young onset dementia.”

If your health region has care navigators or care coordinators, leverage them

Some health regions in Canada have specialists known as “care navigators” or “care coordinators.”

These people often know a lot about services or programs provided within the medical system and the care system in Canada.

Care navigators and care coordinators also can sometimes refer people to programs that are little-known or challenging to get into.

“Early on, when I first started having trouble thinking, Cindy and I made it a deliberate mission to get as ingrained as possible in the healthcare system,” says John McCaffrey, who lives with young onset dementia in Calgary.

“And so we ended up with a case manager from Alberta Health Services. And we still have a case manager—they've been excellent and big part of our care program.” For example, that care coordinator put them in touch with a neurocognitive program that John found very valuable.

If you are having problems finding a care navigator or care coordinator and they do exist in your region, your local Alzheimer Society can help.

Seek out day programs specifically designed for young onset dementia

Sometimes programs for people living with young onset dementia are described by specialists in the field as “day programs.”

So it can help to use that term when you are asking your doctor or your Alzheimer Society contact for program and support group options.

Just make sure you make it clear you are looking for options specifically for people living with young onset dementia.

In Canada, some of these programs include YouQuest in Calgary, Young Onset Dementia Association (YODA) in Waterloo, Paul’s Club in Vancouver, Active Minds Club in Toronto, and The Club in Ottawa.

"It provides me with a sense of accomplishment with being able to contribute and participate meaningfully in a group,” says one YODA member. “And I feel like I can add something to someone else's day as they add to mine."

Because there are so many ways young onset dementia can manifest, there is an assessment process for each of these programs to make sure they are a good fit for you.

Volunteer for dementia-friendly initiatives in your community

Volunteering can be a good way to connect with other people, as well as other services in the community. It can also be a good way to encourage more dementia supports in your area.

In Maple Ridge, BC, for instance, there is Dementia Friendly Task Force.

The task force members are all people who have all been impacted in some way by dementia. They include city employees, local business owners, government officials, people living with dementia (including someone with young onset) and care partners.

The task force works number of issues and projects to make the community and city events more dementia friendly.

See if there is a group like this in your community to join—and if there isn’t, ask that one be created.

Know that family supports in your faith community, neighbourhood or network could be helpful even if they aren’t dementia-specific

There are many excellent community services and supports out there that can help people experiencing stress or health challenges—including people with young onset dementia.

The small list below contains just a few examples of tens of thousands of resources and programs across Canada.

For instance, Caribbean African Canadian Social Services offers “a range of culturally safe clinical, prevention and intervention mental health services designed to meet the cultural needs of Black children, youth, adults and families” in the Greater Toronto Area.

The First Nations Health Authority offers a Virtual Doctor of the Day​ program for Indigenous people in BC who don’t have a doctor. Just call 1-855-344-3800 for an appointment or referral 7 days a week, from 8:30 am to 4:30 pm) Pacific Time. The authority also has mental health programs and counselling.

Help lines in Mandarin and Cantonese are provided 7 days a week from 10 a.m. to 10 p.m. Pacific Time by S.U.C.C.E.S.S. Those help lines provide free crisis support and counselling on a confidential basis for many kinds of concerns or questions.

Naseeha Mental Health provides what it calls a “safe zone” for Muslim and non-Muslim people to get the support they need by phone call or text. Services are available across Canada 7 days a week from 12 p.m. to 12 a.m. Eastern time or 9 a.m. to 9 p.m. Pacific time. Just call or text 1-866-NASEEHA (that’s 1-866-627-3342) to get connected. Naseeha also offers web therapy appointments, which you can register for on the website.

Research shows it’s useful to try to find services that are focused on helping your whole family. Also, ask your physician if you can get access to a young onset dementia specialist to be involved across services.

For more ideas, ask your faith leaders, community centre or neighbourhood network what programs services might be available to support your family at this time of change.

Suggest ways that existing dementia programs can adapt to younger members

There are ways that you—and those close to you—can also suggest existing dementia programs change for younger members.

For instance, you can ask a dementia day program to choose music, films and trivia references from the 60s, 70s and 80s rather than the 30s, 40s and 50s.

Or you can ask program managers whether they have been approached by some other younger people with dementia.

If so, suggest that an opportunity exists to be paired up with those younger people for smaller group activities while a larger, more senior group program is unfolding.

Ask your doctor or specialist—they may know about groups or programs that are part of a pilot or research study

Sometimes in the medical and research systems, new support groups, programs or services emerge as part of a pilot or study.

Taking part in research can help expand your social network. It can also help you make new connections that could make you aware of other program and service opportunities. Research projects can help also you set new goals and challenges, or try new activities like art and music therapy.

For instance, in 2017, researchers at Trent University and Brandon University started offering National Ballet School-created dance lessons to people living with dementia as part of a pilot and study.

Some of the most successful programs related to young onset dementia in Canada—like YouQuest in Calgary and Young Onset Dementia Association in Waterloo—also have been involved in pilot research projects.

The Alzheimer Society of Canada maintains a list of current research study recruitment opportunities. The list is worth checking regularly for new programs and services that might be of interest.

Local Alzheimer Society groups across Canada are also often in contact with regional researchers who are looking for folks to participate in dementia pilot programs. Tell your local society that you are interested in these kinds of research participation opportunities, or sign on for their e-newsletters to stay informed.

Participate in virtual and international support groups and programs

Online programs for people living with dementia and young onset dementia can help bridge boundaries.

Dementia Advocacy Canada maintains a large and growing list of virtual programs and support groups for people living with dementia and their caregivers. It’s definitely worth looking at to see if there’s a fit for you.

Dementia Alliance International is an advocacy group created by people living with dementia. It offers free membership for people living with any type of dementia. As of April 2022, it offers weekly peer-to-peer support groups for its members. It has also recently started an online chat support group for its members in Canada. And it is a great example of how to self-organize needed supports.

The UK’s Young Dementia Network offers a regular series of webinar programs that can be informative and connective.

Rare Dementia Support, which is based in the UK, occasionally runs virtual meetings and groups for people living with frontotemporal dementia, postcortical atrophy and other rarer diseases that fall under the young onset dementia “umbrella.” In early 2022, they also started expanding more into Canada. Visit the Rare Dementia Support website or email [email protected] to find out if any groups or meetings might be upcoming.

Some of the international groups related to specific forms of dementia also offer online support groups. For instance, the Association for Frontotemporal Degeneration, which is based in the United States, organizes monthly Zoom support groups for folks with FTD.

Call your provincial or territorial health line, and your city or town’s public health division

Services like Alberta’s Healthline at 811 and BC’s Healthlink (also available at 811) can connect you to health professionals 24 hours a day. These services also sometimes have information on hand about specific supports in your province or territory for your particular health concern.

If your city, town or municipality also has a public health division, you can also call—or sometimes even just chat-message—with them.

Reaching out to these lines will often connect you with a public health nurse or other health professional who has access to extensive information about any publicly funded support programs and services offered in your area.

If there are no young onset dementia programs or services in your area, you should inquire as to who you can contact to advocate for those programs. Then follow up with an email or phone call.

Know that you are not alone, and that you can help advocate for more programs in your area

Many of the programs and support groups that do exist for people living with young onset dementia in Canada came about through advocacy.

This means that people living with young onset dementia and their loved ones informed local government, Alzheimer Society and health workers that they needed a new support group or service.

In some of these cases, the families affected created new services and supports themselves.

Find your local Alzheimer Society team at alzheimer.ca/find and let them know what services you need. Or reach our information and referrals line at [email protected] or 1-855-705-4636 to let our national office know what you’d like to see more of.

All people living with young onset dementia are also welcome to look into joining the Alzheimer Society of Canada’s Advisory Group. This group helps steer the work of the society and its advocacy priorities. Visit alzheimer.ca/advisorygroup or email [email protected] information about how to join.