Early-Onset Dementia

Memory and personality changes can be more than just stress.

By Tricia Dominik | March/April 2019

A while ago, TVO premiered the documentary Much Too Young. This insightful film follows the lives of young adult caregivers navigating through their parents’ journey with an unexpected diagnosis of early-onset dementia. It was aired appropriately on World Alzheimer’s Day. This incredibly raw and emotional documentary had me grabbing my Kleenex and crying the ugly cry, something I don’t do very often. If you have not watched it yet, I highly recommend investing the 90 minutes.

Approximately 16,000 Canadians under the age of 65 are diagnosed with some form of dementia. This diagnosis usually doesn’t come easy and many families spend months to years trying to figure out what is wrong with their loved one.

Early-onset dementia, defined as dementia before the age of 65, can be difficult to diagnose. Health care providers will first try to rule out other causes for changes in memory or behaviour. We don’t necessarily think about dementia affecting people in their 40s, 50s and 60s. The criteria for individuals to be seen by a senior’s mental health team usually includes being over the age of 65. The senior’s mental health team that I am a part of, does see people younger than 65 if there is a new onset of cognitive decline and changes in behaviour.

Before a referral is accepted, we ask that things such as untreated depression, thyroid problems and vitamin B12 deficiencies be ruled out first. If there are any medical issues that might be contributing to the decline, we like to make sure they are treated as well. Once all potential contributing factors are ruled out, we start our assessment. This process can be lengthy.

Early-onset dementia can be tricky to diagnose, not just because it’s not necessarily something we look for in young adults, but also because people can present atypically. People in their 40s and 50s are usually still working and they may have stressful jobs, kids living at home still, and financial worries. All of these things can be blamed for memory loss and trouble concentrating at times. So, when do we know that it is more than just stress?

Well for starters, if someone has a dementia such as Alzheimer’s, their symptoms will progress. They will usually have a functional decline which gets worse over time. Some individuals with early-onset dementia will present with changes in their behavior that are not in keeping with their personality. For example, a normally calm and collected mother may become agitated at the annual family reunion and yell at family members for no apparent reason. A father who normally drives the speed limit has started speeding and has acquired some speeding tickets.

These personality changes can be accompanied by some memory problems such as forgetting important appointments or misplacing common objects. They may have trouble with planning and organizing. Friends and family usually start to notice these along with changes in behaviour and memory loss.

People diagnosed at a young age face different challenges than individuals diagnosed later in life. Having been involved with families navigating through this disease, I have seen first-hand the difficult situations they have had to face. Oftentimes, the person diagnosed is still working or they have had to give up their work due to changes in their performance related to the dementia. If your family is counting on a full-time income to help pay the bills, losing a job can be devastating. Many families still have a mortgage to pay and children to put through post- secondary schooling. Most people don’t prepare for a loss of income at a young age.

I have also witnessed the grief that comes with the loss of a relationship. The partner often becomes the caregiver instead of the spouse. Family dynamics change. Adult children put their lives on hold to help. Imagine that you have been married for 25 years and you are looking forward to the retirement years with your spouse. You have planned trips and visits to the grandkids but now all that is gone and the future you thought you were going to have looks a lot different.

There are benefits to a timely diagnosis. For families and clients, they usually know something is wrong and when they finally get the diagnosis, they are often relieved. After months and sometimes years of uncertainty, they have answers. Once they know the diagnosis, they can access supports and can prepare and plan for the future.

Despite all of the challenges that can come along with a diagnosis of early-onset dementia, there is hope and there is support. As a society, we need to help reduce the stigma associated with all forms of dementia. We need to encourage families to talk openly about the unique challenges that accompany a diagnosis of early-onset. I would encourage anyone that has questions about dementia to link with their local Alzheimer’s Society.

Two of the most modifiable risks factors for dementia include physical activity and cognitive activity. Studies have shown that engaging in regular physical activity can be neuroprotective.The geriatric psychiatrist that I work with recommends 30 minutes of exercise at a moderate intensity level at least five times a week. We also have to exercise our brains as well. I use the term “use it or lose it” a lot in my work.

Without getting into the details around the brain and plasticity, the bottom line is you need to challenge yourself cognitively. Learn something new, but not just anything — it has to be something that you will enjoy and something that holds your attention. Another modifiable risk factor is your diet. Eat lots of fruits and vegetables every day.

The majority of people reading this won’t develop early-onset dementia. However, you most likely will know someone diagnosed with a dementia in your lifetime. If you can, be a good support for these individuals. It can be a very isolating disease and support is often what people need most.


Tricia Dominik is a nurse registered with the College of Nurses of Ontario and specializes in the field of Gerontology Nursing as a Nursing Case Manager for Senior’s Mental Health in the Kingston Frontenac Lennox and Addington region. With more than two decades of experience working as a community nurse, she is passionate about senior care and providing support to families and health- care providers to navigate the path of growing older. Tricia is also a member of the Kingston Alzheimer’s Society’s Board of Directors.