"Dementia has no boundaries – it can impact any person, culture or any age at any time and it will impact your entire family and friends." – Keith, from Ottawa, Ontario. Keith lives with young onset Alzheimer's disease.
What comes to mind when you think of a person with dementia? If you’re like most people, you picture an elderly person in the later stages of the disease.
But here’s the thing – dementia doesn’t just happen to older people. While age is still the biggest risk factor, people in their 50s, 40s and even 30s can also develop dementia.
We call this young onset dementia – also sometimes called early onset dementia. Young onset dementia accounts for an estimated 2 to 8% of all dementia cases. Right now, at least 16,000 Canadians under the age of 65 are living with young onset dementia.
"Young onset" vs "Early stage"
It's important to know that term "young onset dementia" does not mean the early stage of dementia. While most people diagnosed with young onset dementia are likely experiencing mild symptoms that indicate they are in the early stage, "young onset" and "early stage" have different meanings. A 57-year-old living with young onset dementia could already be in the late stage, while a 80-year-old just diagnosed with dementia might be in the early stage.
It's also important to note that young onset dementia encompasses all types of dementia. If a person is diagnosed with Alzheimer's disease – the most common type of dementia –under the age of 65, then that person can be said to have young onset Alzheimer's disease. Likewise, if a person is diagnosed with frontotemporal dementia under 65, then that person has young onset frontotemporal dementia.
However, each person living with young onset dementia has their own preferred term to describe their dementia – ask them what they prefer!
The effects of being diagnosed at a young age
The personal and social consequences of young onset dementia can be much different than those experienced by people diagnosed with dementia later in life.
People living with young onset dementia are often still working at the time of diagnosis, are physically fit, and may have dependent children or parents at home. They may have major financial commitments, like a mortgage or student loan, that they are looking to pay off.
The diagnosis of dementia, and the changes it will bring, can only increase the stress of handling these responsibilities. With dementia now in the mix, it's natural for a younger person just diagnosed with dementia to think, "What's next!?" and worry about how they can meet handling their responsibilities.
A diagnosis of dementia is difficult for anyone, but young onset dementia comes with unique challenges. If you have been diagnosed with young onset dementia, here are some of the challenges you can expect to face – it's likely you've already encountered a few of them.
Getting an accurate diagnosis
“[The challenge] with young onset is that dementia is not something that they think about initially. If you’re a woman, the first thing they think about is menopause and depression and anxiety and panic and sleep disorders and all those kinds of things.” – Faye, from Windsor Junction, Nova Scotia. Faye lives with young onset Alzheimer's disease.
Diagnosing dementia can be a long and complicated process. For younger people, it’s even more complicated and frustrating. Healthcare providers are often reluctant to diagnose dementia in someone so young, and it’s common for a person who has young onset dementia to be misdiagnosed with another condition, such as depression.
As a a result, the person living with young onset dementia may not get the appropriate knowledge, treatment and support to fight the disease.
Getting connected to services after diagnosis
“[My partner Dawn] said, ‘Oh, this is great, we have a diagnosis, what do we do now? Is there a pill, or…?’ And this is when the doctor said: ‘No, there’s no pill, there’s nothing that we can do at all,’ and you’ll have to basically ‘go home, get your affairs in order because you will die from this.’” – Mary Beth, from Ontario. Mary Beth lives with young onset frontotemporal dementia.
Even after an accurate diagnosis is made, a younger person with dementia is still likely to face obstacles. These obstacles may start with being unable to get more information about dementia or find referral to dementia-focused programs and services in their community.
We know that many people living with dementia go on to live very fulfilling lives for quite some time. Unfortunately, due to lack of knowledge and training, some healthcare providers still seem to offer little hope or support for life after diagnosis.
However, even if their doctor is helpful and can suggest practical next steps, there is another significant obstacle for the person diagnosed with young onset dementia to overcome.
Finding a huge gap in services and supports for younger people
“I unfortunately ran into that brick wall where I was ineligible for just about everything because of my age.” – Faye.
Most social programs and services are designed for older people with dementia. In comparison, the number of programs designed for people living with young onset dementia is sparse.
People living with young onset dementia may not find the programs intended for older adults interesting or beneficial in respect to their needs. They may not feel comfortable in a seniors’ program. And even if they were interested and comfortable in joining a program, they might be ineligible because of their age!
We have a gap in our knowledge about young onset dementia. As a result, there simply aren't enough information, support, financial aid and services adapted for younger people living with dementia.
However, this is changing. The Young Onset Gap Analysis Project, initiated through the National Information Support and Education Committee (NISE) and the Alzheimer Society of Canada (ASC), explored the gaps of available learning and support resources for people living with young onset dementia, and sought advice and feedback from those with lived experience.
The information from this report is being used to develop new resources dedicated to education and support for people living with young onset dementia, families, caregivers and healthcare providers.
Balancing work-life responsibilities
“At the age of 45, most people are looking to be at the top of their career or starting to head at the top of their career and get into that high income earning, and for me I had to take a long-term leave from my employment, and that then turned into having to leave my job.” – Mary Beth.
Many people with young onset dementia are still working when they’re diagnosed. Some may be able to continue working by modifying their job. Others will have to stop working immediately, which comes with major financial, social and psychological implications.
The financial repercussions of living with young onset dementia are very difficult. Eventually, a person has quit their job and may not be eligible for financial supports.
“[At work] I really enjoyed interacting with people…I worked in a large office so I was constantly with people all day long. To stop that left a big void in my life.” – Faye.
“I had all those years of people telling me I was messed up and it was all in my head, and…it was very, very hard on my family, because they were being told by other people, ‘she’s lazy,’ and ‘why don’t you leave her,’ and ‘she’s just nothing but problems,’ and so thankfully my partner and my daughter resisted all that and recognized that it was truly an issue.” – Mary Beth.
People living with dementia often feel excluded or treated differently because of their condition. For younger people with dementia in particular, there’s a tendency for others to dismiss the condition as a mental illness, or to simply not believe it because of the perception that dementia is just a disease of the "old".
Self-imposed stigma is also a factor. According to our 2017 Awareness survey, 50% of Canadians don't believe they could live well with dementia. In fact, 27% of survey respondents believed that their life would be over after getting diagnosed.
Among the greatest fears that surround having dementia: Being a burden to others, losing independence and an inability to recognize family and friends. For a younger person just diagnosed with dementia, these fears suddenly become very real.
"I had my own stigma around dementia, that it was 'an old person issue.' I assumed it was only people in late stages of life… someone in their 80’s in a nursing home, a secure unit, medicated, who needed assistance in doing almost everything with limited recall or recognition. I felt certain that someone with the disease could not drive or hold a job or carry a conversation." – Keith.
What to do if you have young onset dementia
Get a diagnosis
“When I think about that diagnosis, in one way, it was a really good thing, because then I could move forward with my life…As challenging as that looked, we could do it.” – Mary Beth.
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.
"Keith was advised to go to the Memory Clinic, get his affairs in order, consider not doing the numbers or financial part of his work and plan to retire. Keith and I talked a lot about what the doctors said and how he should not make some of the suggested changes. That he should keep working and maintain a routine." – Robin, from Ottawa, Ontario. Robin is married to Keith.
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 family
"Sharing my diagnosis was extremely emotional for my family as this was new for us. We were fortunate to not have had any direct experience because dementia did not exist in our family. We were so unaware of this new world topic." - Keith.
Sharing the news of your diagnosis with your family is a crucial step for any person living with dementia. Particularly if you have young onset dementia and have children; it's important to reassure them that you’re still here and that you understand how this can be difficult.
Your children may want to help you in any way they can. They also 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.
If you’re still working
“There was definitely a drastic cut in our finances, I was fortunate to have private disability that we (still) get today, and I also get CPP as well…I applied for Canada Pension Plan even though I’m only 50 years old.” – Mary Beth.
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.
“Once you have that diagnosis, it’s something that you can grab onto. There’s something there that you can fight against. That’s the way I looked at it and I wasn’t going to let it get me down. I wasn’t going to just sit there and roll over and let things happen... And I still look at things like that today.” – Faye.
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.
Be safe and know your limits
"People CAN live well with dementia if there’s a spirit of understanding in all people around them and a collaborative approach in supporting the person living with dementia, while focusing on what they CAN do and not what they CAN’T do." – Keith.
If you’re unsure about your driving abilities, start thinking about other ways to get around. However, if you're in the early stage of dementia, you may still be able to drive without risk to yourself and others.
Stay independent longer by adapting your home for your changing abilities. An occupational therapist may be able to help.
Share your story
“I’m a fighter and I’m very stubborn… I just thought, ‘No, I can get around this, I can beat this, I can do something.’… [So] I started doing a lot of advocacy work. Over the last two years in particular, I’ve seen the ability of what happens when people [living with dementia] who are empowered as individuals join forces... to push things like policy forward.” – Mary Beth.
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.
"Talk about dementia. Learn about it. Arm yourself with knowledge, not stigma." – Mary Beth.
Living with young onset dementia can be very challenging – but help is available. The Alzheimer Society can help you get the information and support you need.
Contact your local Society to find out about services for people with young onset and resources available in your community.
More information and resources
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 healthcare 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).
- National Initiative for the Care of the Elderly (NICE) guides on young onset dementia:
- Early Onset Dementia: Advice for Couples
- Early Onset Dementia: Advice for Caregivers
- When Dementia is in the House: Advice for Parents
- *Note that these guides are no longer accessible online; the NICE website sells these guides in minimum orders of 20. However, multiple-page previews are available for each guide.
- 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