What's different about Young Onset Dementia?

Young Onset Dementia

Young Onset Dementia, or YOD (aka Early-onset dementia) is dementia that comes on before the age of 65 and accounts for between 40 and 100 of every 100,000 cases of dementia. The most common cause of YOD is Alzheimer's but that only accounts for 35% of early-onset dementia so there are many other causes In addition to Alzheimer's as mentioned above other causes like vascular dementia alcohol related dementia and front temporal dementia can come cause major neurocognitive disorder in a person's 50s or even earlier.


The diagnosis of young onset dementia has particular pitfalls:

1. The diagnosis of dementia in a younger person may be delayed. Symptoms in early dementia can be very nonspecific including things like mood changes trouble with concentration and short-term memory changes which can often be explained by other medical conditions. Oftentimes in younger patients we would take a longer time to rule out other reversible conditions before settling on a diagnosis of dementia. Other conditions can resemble dementia but aren’t. Learn more in my video ”Dementia Mimics”.

2. Those with young onset dementia may have young families. Their children may need to become caregivers and young caregivers are probably the smallest of the caregiver groups often overlooked in traditional caregiver supports.

3. People living with dementia that has come on at a young age are probably still in the workforce. There's so much stigma attached with mental health issues in general and dementia in particular that accommodation for cognitive changes in the workforce is uncharted territory for most employers. We know that for people living with dementia work can be very meaningful and therapeutic but accommodating progressive changes in brain function is difficult.

Risk factors for Young Onset Dementia

·         Genetic causes are more common in YOD, but account for less than 10% of all cases of YOD.

·         Autosomal dominant Alzheimer’s disease usually affects 3 or more family members with YOD, with symptoms arising  between the ages of 30 and 60. The genetic syndromes affect genes for amyloid precursor protein (APP), presenilin-1 (PSEN-1) and presenilin-2 (PSEN-2).

·         Down syndrome or Trisomy 21 is associated with Alzheimer’s disease, with symptoms starting in the 40’s or 50’s.

·         Risk factors for stroke increase the risk of Vascular dementia (VaD)



Other medical conditions that can cause dementia in a younger person:

·         Infections (like HIV and Herpes simplex virus),

·         Inflammatory conditions (like Multiple Sclerosis or an autoimmune encephalopathy),

·         Traumatic brain injury

·         Alcohol abuse

·         Other neurodegenerative disorders like Parkinson’s disease and Huntington’s disease

Once the dementia mimics have been ruled out and the diagnosis of YOD is made, treatment is similar to that in an older adult with dementia. Physical activity, socialization, general health maintenance and consideration of medication for dementia are the mainstays of therapy.

To learn more about the cognitive enhancers, watch my video on YouTube, here. Cognitive Enhancers - When to Start, What to Expect, When to Stop.

Specialized supports for those living with YOD may include:

·         Peer support for care partners of those with YOD

·         Day programs that are targeted to younger individuals

·         Workplace accommodation for the person with YOD and their spouse

·         Monitoring driving and financial management

·         Making a financial plan for children who may still be in school or at home

·         Fighting the stigma and misunderstanding of dementia that comes on earlier in life than usual

To learn more, visit my YouTube channel where we have a playlist of over 35 videos about dementia and related topics. 

Other resources:

The film “Much Too Young” follows four families with a parent living with early onset dementia.

Alzheimer Society of Canada has an article about Young Onset Dementia with links to resources about driving, planning ahead, and how to talk to teens and children about dementia.