What is Young Onset Dementia?

In Alberta, an estimated 2700 people are living with young onset dementia, and an estimated 5,600 people will be living with young onset dementia by 2050.

Watch Jag share his experience caring for his partner with young-onset dementia.

What is young onset dementia?

There is a wide variety of different types of dementia, each with its own set of challenges, life changes, and adjustments that need to be made. Young onset dementia is one of the types, and it can affect anyone between the ages of 18 and 64.

Because young onset dementia is such a diverse condition, it’s essential to highlight the different causes, what it might look like living with young onset dementia, key factors surrounding it, as well as the differences from other types of dementia.

Arming yourself with evidenced-based information regarding young onset dementia could make a difference as you advance with your own diagnosis or potentially help someone that you know.

What causes young onset dementia?

Various diseases are the cause of young onset dementia. Dementia is often referred to as an “umbrella” term because of the multiple types.

Similarly, young onset dementia has more than 50 different diseases or conditions that are associated with it. Some of them include:

-Frontotemporal Dementia (FTD)

-Alzheimer’s disease

-Lewy Body Dementia

-Vascular Dementia

-Hungtington Disease

-Wernicke-Korsakoff Syndrome

-Down syndrome

-Creutzfeldt-Jakob disease

-Multiple Sclerosis

-Niemann-Pick disease type C

-Normal pressure hydrocephalus

-Parkinson’s disease

-Posterior cortical atrophy

-Progressive supranuclear palsy

-Traumatic brain injury

What makes young onset dementia diverse?

Young onset dementia affects different people in different ways and can result from various diseases. Each disease responsible for leading to young onset dementia affects the brain, leading to changes in how we think, remember, move, and function in daily life. This could look like difficulty speaking and writing, difficulty with balance and muscle function, and the need to adjust how we carry out everyday tasks.

The impact that young-onset dementia has on an individual will differ from person to person and could affect many parts of life that a person without a similar diagnosis may not realize. These include stigma surrounding the diagnosis, how it will impact someone’s employment and finances, family dynamics, quality of life, and legal considerations.

Someone living with early onset dementia in their 20s, 30s, or 40s may experience different challenges versus someone who receives a diagnosis later in life. Some affected individuals could be in the middle of post-secondary education, starting families, have young children, or be employed full-time. Because of these factors, it’s essential to provide access to support to the families and care partners of individuals living with young-onset dementia.

Young-onset dementia does not discriminate against those who may or may not develop it. It’s important to note that there is no set way to live with or care for someone with young-onset dementia.

Who does young onset dementia affect?

Anyone can be diagnosed with a dementia diagnosis. This diagnosis is made by healthcare professionals when problems become significant enough to affect someone’s ability to move, remember things, think, or connect with others. When these symptoms are present, it’s often because of changes in the brain and how it works.

When dementia is evident in someone between the ages of 18 and 64, it’s referred to as young-onset dementia. This is most common with people in their 40s, 50s, and early 60s. People often wonder what the youngest age you can get dementia is. Although less common, early-onset dementia can be present in people in their late teens, 20s, and 30s.

What is the difference between young-onset dementia and early-stage dementia?

Dementia is often separated into stages: early stage, middle stage, and late stage. The term “early-stage dementia” is used when someone begins to show signs of dementia regardless of their age, while the term “young onset dementia” is used when the person is under the age of 65.

Is there a cure for young-onset dementia?

The evidence isn’t definite about why some dementias are permanent and others are not. For this reason, it’s essential to consult a physician to determine precisely which disease could be causing young-onset dementia and which therapies and treatments are available.

Because some types of dementias are related to alcohol use disorders or nutrition deficits, those types of dementias can be reversed if caught and addressed early.  Conditions like brain tumors, brain bleeds, and some infections can cause dementia-like symptoms and can also be reversed with the proper treatment.

Some dementias, such as Alzheimer’s disease and frontotemporal dementia, are caused by changes to brain cells and, unfortunately, cannot be reversed at this time.

Can an individual with young-onset dementia live a fulfilled life?

Because young-onset dementia affects each individual differently, it’s difficult to gauge how quickly dementia will progress. Research has shown that some individuals living with young onset dementia have lived prosperous lives for more than 20 years before they begin to require more support, such as home care.

For some individuals, it’s the opposite, and they need increased support within a few years. It’s vital to note that with the appropriate supports in place, an individual with young-onset dementia can continue to live well.

Not only has research been underway to try and understand why some dementias progress quicker than others, but also to investigate how more individuals living with young onset dementia can live as complete of a life as possible, even while wading through the struggles that this diagnosis can bring.

How can the Alzheimer Society of Alberta and NWT help?

The Alzheimer Society of Alberta and Northwest Territories is available to help everyone in Alberta who may be affected by dementia.

To find programs and support groups in your community, or for more information, contact us at 1-866-950-5465 or help@alzheimer.ab.ca


Take a moment to hear the stories of people living with dementia, caregivers and families. You'll quickly see that it's not an "old person's disease." And it doesn't signal the end of a life. What's true is it happens in stages, but what is always constant is that there are still lives to be lived, dreams to pursue and people to love.

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