How to connect with other people living with young onset dementia
You are not alone. Thousands of people in Canada, and around the world, are also living with young onset dementia. Here are some ways to connect with them—as well as grow your networks and boost your success after diagnosis.
Anyone living a rare health condition can sometimes feel lonely or isolated.
So it’s no surprise that some people living with young onset dementia in Canada have told us that they feel more alone since their symptoms began. And during the COVID-19 pandemic, that feeling has become more intense for many.
There’s good news, though. In 2022, it’s easier than ever to connect with other people living with young onset dementia.
These connections can happen virtually over Zoom, FaceTime, social media and other platforms. They can also happen, as public health protections permit, in person. (There very well could be someone in your own community living with young onset dementia to visit with as well.)
People living with young onset dementia tell us they’ve gained a lot by sustaining and growing their networks, knowledge and skills. They say it helps maintain independence and success after diagnosis.
Here are some ideas about how to connect with other people living with young onset dementia in Canada.
Join a dementia advocacy group
In January 2014, a group of people living with dementia founded the non-profit Dementia Alliance International.
Members live in Canada, Australia, Singapore and more. This alliance aims “to promote education and awareness about dementia – in order to eradicate stigma and discrimination – and to improve the quality of the lives of people with dementia.”
Membership is free to anyone living with dementia. Dementia Alliance International offers online peer-support groups. Its members also speak at global dementia conferences.
“I always say they [Dementia Alliance International] saved my life,” says Chrissy Thelker, an author and advocate with young onset vascular dementia who lives in Vernon, BC. “Because it was through them that I found that new hope and new purpose. And I found out that I was not wandering around out there alone.”
Dementia Advocacy Canada formed in 2019. The group’s website says it’s a “grass-roots organization with a volunteer team comprised of people with lived dementia experience and care partners.” In addition to advising on policy and on research studies, members help others navigate the healthcare system.
The Alzheimer Society of Canada also has an advocacy-focused Advisory Group of People with Lived Experience of Dementia. This group advises the society on dementia research and education as well. Its members led the way in creating the Canadian Charter of Rights for People with Dementia in 2018, too. Find out more on the group’s webpage or by emailing advisorygroup@alzheimer.ca.
Keep using social media, but in a more targeted way
In March 2021, a UK study looked at how some people with young onset dementia use Twitter to find community. The study found that using Twitter helped these people feel less alone.
“‘I went to work for the last time in September,” said Paul, one of the study participants, “then I was signed off work and I retired in February. But there was nothing there…you’re just left...so I thought I’d have a go on Twitter, and I found a lot of people in the same situation as me, and we started learning from each other…so it’s helped me to start finding my way again’”
The study also indicated it helps to use the social-media sites you’re already used to.
So if you were busier on Facebook, Instagram, TikTok or another platform before your diagnosis, try finding a young onset dementia community there. You can start by joining, liking or following official dementia organizations and grow from there.
Contact your local Alzheimer Society—and other local health societies—to join peer support groups
Some Alzheimer Society branches across Canada run programs and peer groups for people living with Young Onset Dementia.
For instance, the Alzheimer Society of Toronto has a weekly program called Boomers Club for young onset dementia as well as a monthly support group for frontotemporal dementia. The Alzheimer Society of Alberta and the Northwest Territories runs peer support programs for people with Young Onset Dementia.
And reach out to other health societies related to your specific dementia diagnosis.
For instance, the Huntington Society of Canada often runs peer support groups for people living with Huntington Disease. Parkinson Canada also runs peer support groups for people with young onset Parkinson’s disease. And the Multiple Sclerosis Society of Canada runs support groups, too.
Your doctor might have some knowledge about which other organizations to connect with.
Read, post and respond on respected dementia message boards
Open 24/7, online dementia message boards can help you connect to people living with young onset dementia worldwide.
Make sure to choose message boards and online forums that are respected and well-moderated.
One of the best-known English-language dementia message boards is Talking Point. This forum is organized and moderated by the UK’s Alzheimer’s Society. One of their forums is specifically for younger people living with dementia and their families or care partners.
Another well-respected English-language dementia message board is alzconnected.org. The US Alzheimer’s Association runs and moderates this peer-support board.
Both Talking Point and alzconnected.org have Canadian users.
There is a Canadian message board that is also well moderated by the Alzheimer Society and Northwest Territories. But at the time of writing in early 2022, it was in the beta stage and still being tested. It offers both English- and French-language boards.
Make sure to also explore message boards related to your specific dementia diagnosis. For instance, the English-language FTD Support Forum connects people affected by frontotemporal dementia around the world.
Sign up for an independent young onset dementia program in your area
Some great organizations in Canada run their own young onset dementia programs. If these programs are a good fit for you, they can also be a way to connect with peers.
The Young Onset Dementia Association in Waterloo offers a day program. YouQuest in Calgary was started by a person living with young onset dementia and their partner. Paul’s Club in Vancouver is a social and recreational day program for men and women living with Young Onset Dementia. YODA in York Region offers a weekly online support group. Carefor and Carleton University in Ottawa provide a unique, client-driven young onset day program called The Club.
“The first thing that comes to mind is it doesn’t make me feel like there’s something wrong with me.” says Janice, a participant in the Waterloo YODA group. “I have memory issues, and they do come up. But we are all in this together.”
Read books and blogs by people with young onset dementia—or listen to their podcasts
Reading books and blogs by people living with young onset dementia can help you feel less alone with your own dementia journey.
Following the creators on social media, or emailing them after reading, can also help you connect you to a wider dementia community.
In September 2021, Dementia Alliance International posted a list of books by people with dementia. Dementia UK has also gathered a list of blog posts written by people with Young Onset Dementia. And Being Patient publishes Phil’s Journal—a series by Phil Gutis, a former New York Times journalist with early onset Alzheimer’s disease.
Listening to podcasts created by people living with young onset dementia can also offer insights and shared experience.
In July 2021, two Australian mental health professionals with young onset dementia hosted the podcast Talking Dementia with Heckle & Jeckle. This podcast discusses young onset dementia in relationships, body changes, identity issues and more.
Lakehead University’s Centre for Education and Research on Aging and Health produces the podcast Dementia Dialogue. It looks at all kinds of dementia. And it recently launched a new series about young onset dementia as well. Also listen to episodes with Roxanne Varey, Jim Mann, Phyllis Fehr, Debbie Keay, Roger Marple, and Myrna Norman.
Encourage your family members, kids and loved ones make the connections they need, too
Part of what can make young onset dementia stressful is knowing that it could be having an impact on your loved ones, too.
Fortunately, there are also many support groups, online forums, programs and resources for them as well. Some important ones include Young Caregivers Connect for younger family members; the Young Onset Dementia Care Partner Group at the Alzheimer Society of Niagara Region and other societies; and the documentary Much Too Young on tvo.org.
Caregiver support and advocacy groups in general are also growing. Caregivers Alberta and Carers Canada are just a couple of examples.
Many of the message boards and other websites listed in this article also have resources specifically for carers to connect.
Call the Alzheimer Society for more assistance and volunteer opportunities
The Alzheimer Society is here to help you connect with the supports you need. We want to help you also connect with other people who have young onset dementia.
Reach your local society today at alzheimer.ca/find. Or reach our National Information & Referral Line at 1-855-705-4636 and info@alzheimer.ca.
Also joining an Alzheimer Society advisory group—or volunteering for your local Alzheimer Society—can also connect you to others with young onset dementia.