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.
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.
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.
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.
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.
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).
- Early Onset Dementia: Advice for Caregivers, National Initiative for the Care of the Elderly
- Early Onset Dementia: Advice for Couples, National Initiative for the Care of the Elderly
- When Dementia is in the House: Advice for Parents, National Initiative for the Care of the Elderly
- I have younger onset dementia: Information and ideas for you to consider, and types of support, Dementia Australia
- Young-onset dementia, Alzheimer's Society UK
- What is young onset dementia? Alzheimer Society UK
- Younger people with dementia: Living well with your diagnosis, NHS Health Scotland
- Young Onset Dementia: Facilitators Resource Manual – People with young onset dementia and their families often face unique challenges. Check out this user-friendly guide to help you create clubs and groups designed especially for them!
- Young onset dementia: An inspirational guide for people like us with early-stage memory loss – This guide was created by people living with young onset dementia for people living with young onset dementia. It offers coping tips and strategies for adapting to the challenges and changes associated with young onset dementia.
- Resources for young carers
- Young Onset Dementia Information Gap Analysis: Executive Summary
- Young Onset Dementia Information Gap Analysis: Report
- Frontotemporal dementia