Young onset dementia

When symptoms of dementia start before the age of 65, we use the term young onset dementia. Young onset dementia accounts for an estimated 2-8% of all dementia cases. While rare, 16,000 Canadians under the age of 65 are living with young onset dementia. A dementia diagnosis is difficult for anyone, but comes with unique challenges when you’re in your 40s or 50s, such as:

  • still working at the time of diagnosis
  • having dependent children or parents living at home
  • having major financial commitments (mortgage, tuition fees, etc.)
  • still being very physically fit
  • being very aware of your symptoms
  • having difficulties getting an accurate diagnosis
  • finding it hard to accept losing skills
  • not being able to find information, support, financial aid and services adapted for younger people with dementia

What to do if you have young onset dementia

Get a diagnosis

It can take a long time to diagnose dementia in younger people, mostly because there is a lack of awareness that dementia can happen in younger people. Take note of your symptoms if you suspect that something might be wrong and see your doctor right away. Here’s a helpful tool to help you prepare for your doctor’s visit.

Plan ahead

Think about talking to a financial advisor and a lawyer. Be part of the decision-making about your financial and legal affairs, while you are able to make decisions and sign legal papers. Make sure someone you trust is in control of your money. A power of attorney will authorize someone to legally make decisions on your behalf once you are no longer able to.

Reassure your children

If you have children, tell them you’re still here for them and that you understand how this can be difficult. They may feel they are not getting the support and stability they need. Assure them that the changes they are seeing in you are due to the disease and that no one is to blame. Consider talking to your children’s teachers - they may be able to provide additional support.

Find activities to do together and encourage open communication. If possible, engage your children by letting them help and support you. See more about helping children and teens.

If you’re still working

First, research your employee insurance and health care benefits, and find out if they offer an Employee Assistance program. Once you know about your options, consider talking to your employer about your diagnosis. Discuss the possibility of reducing hours and/or tasks and adapting your job duties. Consider retiring early and start to plan for a time when you cannot work.

If you own your own business, think about its future and succession planning. You can also contact Services Canada to find out if you are eligible for Disability Benefits under the Canada Pension Plan.

Be safe

If you’re unsure about your driving abilities, start thinking about safer ways to get around.

Stay independent longer by adapting your home for your changing abilities. An occupational therapist may be able to help – find one near you.

Living with young onset dementia can be very challenging, but help is available. Contact your local Society to find out about services for people with young onset and resources available in your community.

Share your story

Help reduce the stigma around dementia by talking openly about the changes and challenges that come with living with young onset dementia. Let your friends, colleagues and family members know that people with dementia still want to be a part of their communities and live life to the fullest.

Live well

Make healthy lifestyle choices to feel better and potentially slow the progression of the disease. Stay connected, eat well, be active, reduce stress, avoid harmful habits like smoking, get enough sleep and meet regularly with your doctor for checkups and to explore treatment options.

More information and resources

Webinars

Living with Young Onset Dementia: Let's have a conversation!

People living with young onset dementia face unique challenges. In the webinar below, you will hear directly from two women living with young onset dementia, about their experiences working with the health care system, including their challenges and successes.

This webinar is facilitated by Dr Carole Cohen, geriatric psychiatrist, featuring Faye Forbes and Mary Beth Wighton, and brought to you by brainXchange in partnership with the Alzheimer Society of Canada and the Canadian Consortium of Neurodegeneration in Aging (CCNA).

The importance of Social programs for People Living with Young Onset Dementia

This webinar touches on the importance of recreational programs specifically designed for people living with Young Onset Dementia (YOD) and their care partners. Participants learned about The Alzheimer Society of Toronto’s Boomers Club, a weekly social program for YOD and their families and explore ways to support the unique needs of this population.

This webinar is facilitated by Romina Oliverio, Community Partnerships Manager at the Alzheimer Society of Toronto, and brought to you by brainXchange in partnership with the Alzheimer Society of Canada and the Canadian Consortium of Neurodegeneration in Aging (CCNA). 

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Last Updated: 05/27/2019