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Shedding light on early onset dementia in adults under the age of 65

Currently, at least 28,000 Canadians under the age of 65 are living with young onset dementia. However, this number could be a lot higher due to young onset dementia being harder to diagnose.

What comes to mind when you think of a person with dementia? If you're like most people, you might envision an elderly individual navigating the labyrinthine maze of memory loss, their twilight years marked by the challenges of cognitive decline.

While this image does capture the most common face of dementia, there's a side to this condition that often escapes our collective awareness. Dementia, it turns out, doesn't discriminate by age. It can stealthily creep into the lives of individuals in their 50s, 40s, and even as early as their 30s and 20s. This lesser-known facet of dementia is known as "young onset dementia" and accounts for an estimated 2 to 8% of all dementia cases.

Here in Canada, this condition affects a significant number of individuals. According to the Alzheimer Society of Canada, currently, at least 28,000 Canadians under the age of 65 are living with young onset dementia. The notion that dementia only targets the elderly is being reshaped, and it's crucial for us to shed light on this underrepresented aspect of the disease.

Young onset dementia is a diverse condition. Dozens of different diseases can cause it. The main thing those diseases have in common is that they affect the brain. And those brain changes then change the way we remember, think, move and connect daily. According to the Alzheimer Society of Canada, more than 50 different diseases or conditions are associated with young onset dementia. 

It's important to see a doctor to determine which disease is causing someone's young onset dementia, as they will be able to prescribe different medicines and therapies to treat the different diseases. 


Some young onset dementia conditions are reversible, and others are not

One significant distinction lies in the potential for reversibility. Some forms of young onset dementia can be traced back to causes that, if detected early, offer a glimmer of hope. Conditions linked to nutritional deficiencies or alcohol use disorders fall into this category. With timely intervention, these types of dementias can be reversed, offering affected individuals a chance at recovery. Similarly, dementia-like symptoms triggered by factors such as brain tumors, brain bleeding, or specific infections can also be reversed under certain circumstances.

However, the story is not as promising for others, like Alzheimer's disease and frontotemporal dementia. These conditions are characterized by irreversible changes in brain cells, presenting a challenge that medical science has yet to overcome.

Young onset dementia varies in timespan and length

Beyond the question of reversibility, young onset dementia is a puzzle with many pieces. It exhibits remarkable diversity in its progression. In Canada, individuals have shown resilience in their battle against the condition, living well for two decades or more, defying the odds and expectations. On the flip side, some experience a swifter decline, with dementia progressing over a mere two or three years. These individuals may require more immediate home care and support to navigate the challenges that come their way.

Alzheimer Society of Canada

Signs and symptoms to look out for:

  • Are you under the age of 65?
  • Do you feel like you are losing items around the house more often? (e.g., car keys, cell phone, wallet etc.)
  • Have family and friends expressed they are feeling concerned about your health?
  • Are you having problems managing money?
  • Are you having trouble reading or doing other mental tasks?
  • Do you have issues judging distances when walking or driving?
  • Do you find that you have issues with coordinating your body? For example, playing sports?
  • Do you ever lose your balance when walking?
  • Have you noticed any changes to your personality, mood and/or behaviour?
  • Have you been forgetting meetings or colleagues’ names at work?
  • Have you ever been unable to find your way home?
  • Do you ever feel disoriented or get lost when in a familiar place?
  • Do you often find it challenging to find the right words?
  • Have you been struggling to learn new things or adapt to changes?
  • Have you lost interest in activities that used to excite you?
  • Have you been withdrawing from social interactions?
  • Do you sometimes have trouble sleeping at night?
  • Do you find you say the same things often by accident?
  • Do you ever have blurred or double vision?
  • Have you been having issues keeping up with work at your job or learning new systems there?
  • Have coworkers expressed to you any concerns about your work performance or health?
  • Are you feeling less mentally focused than in the past?
  • Do you forget names and faces of people that you know?
  • Is your speech more hesitant, vague or over-detailed?
  • Do you find it difficult to stay focused when you are speaking?
Photo by Esther Ann on Unsplash

Diagnosis for young onset dementia:

As per the Alzheimer Society of Canada's latest statistics, a staggering 28,000 individuals in Canada grapple with the complexities of young onset dementia. However, the true extent of this issue may be even more profound than these figures suggest.

Why is this the case? Young onset dementia often hides in plain sight, concealed by a shroud of misdiagnosis. The Alzheimer Society of Canada says doctors frequently misinterpret the early symptoms, attributing them to more commonplace concerns like depression, stress, or even menopause. The result? A significant underestimation of the prevalence of young onset dementia and a delay in the critical access to treatment and support for those affected.

A compelling Dutch study revealed that younger individuals struggling with dementia often endure an excruciating journey to diagnosis, with an average waiting period of 4.4 years. Astonishingly, this period is 57% longer than the time taken to diagnose dementia in older individuals.

These extended diagnostic delays only serve to exacerbate the challenges faced by those living with young onset dementia and their loved ones, further emphasizing the urgency of increased awareness and early detection.