Young Onset Dementia: The Many Faces of Dementia in Canada

Learn more about Young Onset Dementia.

Young Onset Dementia

In January 2024, the Alzheimer Society of Canada released the second volume of the Landmark Study, The Many Faces of Dementia in Canada.

Over the past year we have been sharing education summaries on each Chapter. You have had the opportunity to learn more about this study, what it means for Nova Scotians, and what resources are available to help. We have shared local statistics, identified resources, and heard from Nova Scotians about ways in which their cultures and social identities are related to their experience on the dementia journey. 

Today we’re talking about Chapter 5, Young Onset Dementia (read it here). This chapter covers definitions and the causes of dementia in younger adults.  Young Onset Dementia is a term used when dementia symptoms develop before the age of 65. It discusses the reality of misdiagnosis and variations of presentation of dementia symptoms in younger adults. 

One of the main themes throughout the chapter are the unique age related challenges faced by people living with young onset dementia and their care partners. 

Caregiver Angela de Haas speaks of the challenges she and her family faced supporting her husband over a six year period: 

“As I think back to the beginning, when symptoms started and the diagnosis was made, I guess a lot of it had to do with wondering how we were going to survive financially… I ended up stepping into his business and carrying the load, and driving him to his jobs, and dealing with unhappy customers on the phone because he couldn’t speak properly anymore.

We decided we had to sell our home. We ended up moving to another province where we could purchase a house for half the price, so there was a lot of isolation.

He looked so good on the outside that people didn’t realize there was anything wrong; there were a lot of misunderstandings and eventually discrimination.

There were so many losses; the loss of our dreams for retirement, of growing old together, enjoying our grand children together, or even having some of them know him, or remember him. My kids lost the support of their parents because we were so immersed in this disease and trying to cope.

My husband is now in a nursing home at 58 years old. He’s been there for two months and of course he is the youngest. Again, he doesn’t really fit in, but thankfully he doesn’t really realize that anymore.”

Angela’s experience echoes the family, workplace and financial realities faced by families and people diagnosed with dementia under the age of 65. Research connected to these challenges is explored in Chapter 5. The Chapter closes with a look at findings that indicate Young Onset Dementia may be occurring at an increased rate among Indigenous Peoples, and the reality of Young Onset dementia in people with Down’s syndrome.  

Resources for Young Onset Dementia:

Stay tuned for our next blog when we wrap up this education series connected to the Landmark 2 Report. 

If you see yourself in this report, or are a community organization or healthcare provider and have suggestions on how we can better support you and your community, we invite you to contact us by email at alzheimer@asns.ca or phone at 1-800-611-6345.

Read the full report, The Many Faces of Dementia in Canada, here.