Young Onset Dementia

Who we are

The Young Onset Dementia Groups meets weekly for those of us who live with dementia in York Region. Our group encourages advocacy and social supports for those with a YOD diagnosis.

The YODA Group’s mission is to educate the public about Young Onset Dementia, stigma and reduce isolation.

Young Onset Dementia refers to any impairment of cognitive function experienced by people under the age of 65. For some, it can start as early as 35. Presently it is not considered a disability, even though many of us are forced to leave our professions, receiving little to no financial assistance from our insurance or our Canadian government. We slip thru the cracks, so to speak.

We believe this is a journey that does not need to be taken alone. As a community together we support each other on this journey and avoid the pitfalls of isolation.

Email or Call our member Rose at :
Rose Ong <yodagroup2020@gmail.com>
Telephone: (416) 399-3966

Resources

Dementia Dialogue: David Harvey, founder of Dementia Dialogue & Canadian has created podcasts that have something to do with the Canadian Healthcare system
https://www.dementiadialogue.ca/season-2-part-1
Dementia Advocacy Canada: https://dementiacanada.com
Dementia Alliance International: http://www.dementiaallianceinternational.org
Toronto Memory Program: https://www.torontomemoryprogram.com/
Canadian Association for Mental Health (CAMH) -Memory Clinic: https://www.camh.ca/en/your-care/programs-and-services/memory-clinic

Advocacy

We’ve been gathering information from various groups like Dementia Dialogue, Dementia Advocacy Ontario, Dementia Alliance International and The Alzheimer’s Society of Ontario. We meet with politicians of all levels. It takes a village!

Here are some of the key issues that set YOD apart from other age-related dementias:

  • Need for early and accurate diagnosis.
  • Recognition of the financial implications of forced retirement.
  • Once diagnosed, need for age-appropriate resources, supports and services.
  • Need for YOD to be recognized as a disability.
  • Funding to support research and education, in order to counter stigma.
  • Housing for people with YOD who live alone or want to age at home as much as possible.
  • Recognition that care partners often are unable to attend support groups etc. during the day, because of their participation in the workplace. 

Creative Expressions

Our members have many talents…we work to support each other in finding and sharing our talents. One of our members has the discovered her writing abilities and below are some of her articles published throughout York Region and the Toronto Star:

Anxiety – How Delegation Can Help?

Once upon a time, I was a very active person. Taught Sunday school, played guitar in a worship band for 30 years. If there was a volunteer position, I was there. Working mom, extraordinaire. Yes, I was juggling all the balls and still had time to read and learn new skills, knit and crochet; hell, I even sewed my kids clothing until they got old enough to care. After all, who wants to wear something to school made by mom!

Click here to read article

Dreams, Meltdowns and Dementia

The other day, I was reading an article by a UK doctor, Dr. Jennifer Bute. Dr. Bute was been diagnosed with Early Onset Alzheimer’s in May 2009 and has had a profound attitude in the way in which she views Dementia in general. Where many people think of dementia as a curse, Jennifer is very upbeat and positive and sees dementia as an opportunity to be embraced.

Click here to read article

Why is Nana/Papa So Strange?

I was much younger than today when I first heard my 6 year old son ask that question about his grandfather. I honestly did not know what to say. We had been living with “Papa’s" dementia diagnosis for maybe a year or two at that point. He and my mother-in-law had been living with us since the spring and on that day, we, our family, were walking along a wooded trail behind my son's school, admiring the beautiful colours of the season.

Click here to read article