Rare Dementia Support Canada

10/27/2026

Explore the Living Stories: A Moment with Rare Dementia learning resource!

Developed by RDS Canada and Nipissing University, this online resource builds on the Living Stories Living Library event held in March 2026.

Explore personal stories, research, artwork, and conversations that deepen understanding of rare and young onset dementias, challenge assumptions, and highlight the lived experiences of individuals and families living with dementia.

Whether you are a student, health professional, family member, researcher, or community member, there is something to learn.

Explore the resource: https://nipissingu.libguides.com/LivingLibraryMarch2026

10/26/2026

🧠 Join us for our upcoming Posterior cortical atrophy (PCA) Webinar

Posterior cortical atrophy (PCA) is a rare dementia that primarily affects visual processing and spatial awareness.

RDS Canada will host a webinar featuring:

• Dr. Mary Pat Sullivan – Developing a Co-Designed Brain Sight Care and Support Pathway in Canada
• Dr. Hailey O'Neil – Daily Tasks for People Living with Posterior Cortical Atrophy

Whether you are living with PCA, supporting someone affected, or interested in learning more about rare dementias, we invite you to join us for this informative session.

📅 November 16, 2026 | 12:00 - 2:00 PM ET
✅ Register here: https://us06web.zoom.us/webinar/register/WN_r4mNKFELQgaROPoF5uOYfA

10/07/2026

Join us for an informative webinar on Lewy body dementia (LBD).

This session will be of interest to individuals living with Lewy body dementia and other dementia diagnoses, supporters, and anyone interested in learning more about a multidisciplinary approach to post-diagnosis care and support.

The webinar will also be valuable for healthcare professionals and practitioners interested in co-pathology, and collaborative, person-centered post-diagnosis management, including approaches that leverage telemedicine to improve access to care.

Register here: https://us06web.zoom.us/webinar/register/WN_9Zlvs8FOS2yeuQ2z_NYBLA

09/28/2026

During World FTD Awareness Week 2026, we stand alongside individuals, families, clinicians, researchers, and advocates working to increase understanding of Frontotemporal Dementia (FTD).
As we recognize this important week, we would like to extend our sincere thanks to our recent webinar panelists, Marie Alford of HammondCare and Julane Bowen of the Australian FTD Association, who joined RDS Canada last week to share their expertise and experiences. We are grateful for their contributions and for helping to raise awareness of FTD on an international scale.
Every conversation helps build understanding, reduce stigma, and connect people affected by FTD with the support they need.
💜 Visibility matters. Share your story. Help us shine a spotlight on FTD.

09/11/2026

🌍 World FTD Awareness Week 2026
📅 September 28 - October 4

This year, we're putting a on the people affected by Frontotemporal Dementia and those working to improve awareness, care, and research.
Join us by sharing a positive message, spreading awareness, and encouraging others to do the same. Use and to help others discover related content on the campaign.
Together, we can help create a world that better understands FTD.

09/09/2026

Discover how innovative approaches from Australia are helping shape the future of rare dementia support.
Join our FREE online webinar on Frontotemporal Dementia (FTD) featuring special guests Julane Bowen and Marie Alford.
📅 Sept. 21, 2026 | 6:00 PM ET
🔗 Register here: https://us06web.zoom.us/webinar/register/WN_CjIi0TEYRFW92eEf7bTUkg #/registration

06/01/2026

Lasting connections! Vicky Willis, an RDS Canada Advisory Circle member recently returned from a UK trip to meet up with other members of an original cross-national rare dementia bereavement group that began during COVID via RDS UK. They are now a legacy group advising RDS UK and Canada and continue to support one another in bereavement. They have been together for 6 years.

RHS Garden Wisley, UK, May 2026
From left to right: Sue, Annie, Charlotte, Robert, Sue, Vicky, Sue.

05/29/2026

We are so proud of the student actors from Almaguin Highlands Secondary School for their performance at NTS DramaFest. Piece by Piece, an original play written by Allison Green with Rare Dementia Support Canada members, received 4 awards in the April competition, including: Stage Management Award, Stage Presence Award for Haven Howard (who played Amanda, third from left), Leading Actor for Nate Darasch (who played Jordan, second from left) and the much coveted Adjudicator's Award for "sharing a story on stage that needs to be told, with maturity and confidence". The judge quoted the lines "the cruelest diseases you've never heard of" and "She’s like a book that now has got most of its pages torn out... what remains is the cover. The cover is my Mom – and the torn pages are her brain." These portions of the script were directly from the words of RDS Canada research participants.
Congratulations to all of the performers! They did an amazing job of moving the whole audience with their portrayal of lived experience with rare and young onset dementia.

04/19/2026

As Poetry Month continues, RDS Canada would like to share the poem "The Resiliency" part of a collection entitled, "There Is So Much I Could Say" compiled by facilitating poets, Martha Gould and Lawrence Wilson, from the words of research participants affected by rare dementias.

The Resiliency

Support feels like being wrapped in an old comfy sweater,
the kind that I don’t have to ask for it just shows up,
neighbours and friends asking if they can lend a hand,
family,
family being by your side.

Someone to listen to me without judgment,
workers willing to lend an ear,
unconditional actions to ease the burden of care,
companionship, less stress, stimulation,
acceptance, acknowledgment, understanding.

joy in every day

I know you think I’m crazy sometimes
and question my judgment
on every decision I make
but if you want to show me your support
learn to accept me as I am,
with all my faults and errors,
don’t scold me like a child,
just cover for me and let me believe
in the resiliency found in love.

For more information on how to join our virtual support community, please visit:

Registering with RDS Canada is a two-step process. First, we will ask you to create a password to access the member area of the website. Second, we will ask you to fill in a few details about your interest in rare dementia, where you live and how we may contact you. Both steps must be completed to r...

04/12/2026

April is Poetry Month. RDS Canada is proud to share the poem "Help Me" part of a collection entitled, "There Is So Much I Could Say" compiled by facilitating poets, Martha Gould and Lawrence Wilson, from the words of research participants affected by rare dementias.

Help Me

It’s a range of things—
compassion, understanding, love—
someone who listens…and believes me
someone who helps when I’m down and out
someone who reaches out
and gives me another path or crutch (an option)
someone to hug me and tell me it’s ok
someone who can take over when it’s too much

In between
there is support that helps me see things differently
and support that just takes time
to listen and see things the way I do,
not judged by expression of my thoughts or feelings

Never tell me I’m not doing enough for my husband—
just step in to help me!
Help me, so I can help him.
Honour his wishes.

Help is a range of things.
(an option: leave cookies on our porch!)

For more information on how to join our virtual support community for people affected by rare dementias please see:

Registering with RDS Canada is a two-step process. First, we will ask you to create a password to access the member area of the website. Second, we will ask you to fill in a few details about your interest in rare dementia, where you live and how we may contact you. Both steps must be completed to r...