Dementia Aware  

Young onset dementia

What you need to know about younger people with dementia (YOD)

Young onset dementia, also known as early onset dementia, describes any neurocognitive disorder (dementia) diagnosed in someone under 65.

Due to the population increase from the Baby Boomer generation, young people developing young onset dementia is becoming more common, with approximately one person in every 1,000 below 65 developing young onset dementia (Draper and Withall, 2016).

In 2016, approximately 200,000 people were diagnosed with young onset dementia in the United States, 42,325 in the United Kingdom, 25,938 in Australia, and 16,000 in Canada (Alzheimer Society, 2016).

While each person’s experience with dementia is different and although the symptoms of dementia are similar regardless of age, younger people with dementia have many different needs and challenges compared to the older person with dementia.

The most common types of young onset dementia include:

  • Familial Alzheimer’s disease (30 per cent)
  • Vascular dementia (18 per cent)
  • Frontotemporal dementia (12 per cent)
  • Alcohol related dementia (10 per cent)
  • Lewy Body dementia (10 per cent)
  • Rare and unusual dementia (20 per cent)
         • Down’s syndrome dementia
         • Creutzfeldt Jakob disease(CJD)
         • HIV-neurosyphilis
         • Corticobasal degeneration

Young onset dementia can be difficult to recognize and can mimic other illnesses — depression, anxiety, stress related illnesses, peri-menopause.

It is extremely important that any person suspected of having early onset dementia has a full assessment: cognitive and neurological assessment, blood work, and CT scan of head.

Some of the early signs are:

  • Memory loss
  • Easily stressed, frustrated or angered
  • Behaviour and/or personality change “does not seem like him/herself”
  • Changes in walking, balance, coordination
  • Subtle changes in communication — forgetting words, mixes up words

For the young person, the diagnosis of dementia is much harder to accept as it is completely unexpected; it is a life-changing moment for everyone in the family unit.

The person is usually in the prime of life, employed, supporting and caring for a family, socially outgoing, physically active and healthy, he/she may also be caring for older parents.

Now, the person, the entire family must adapt to a different way of life, to the changing circumstances, and to the changing roles and responsibilities.


The emotional impact upon hearing the diagnosis will be different for each person, and can range from disbelief, denial, frustration, anger, sadness, and depression. All these emotions are perfectly normal and to be expected.

Consider going to family counselling, the opportunity to share feelings and fears will help everyone as they try to understand the diagnosis, If the dementia is genetic, then counselling/testing may be necessary.

You may want to share the diagnosis with friends; it is your decision, but is a good idea for you to have a support network of people you trust who can help support you and your family.


It important to remember you can still do the things you enjoy and live a full life.

Yes, it will be different, you will likely have to make some changes; however, living well means adapting to changes as they occur. Continue to meet with friends, go out for dinner, hockey games, etc.

Unfortunately, many community programs for dementia support the older/retired person and may not be a good fit, so contact the Alzheimer Society of B.C. or Interior Health for information about resources and supports.

Financial and Legal Planning

The sooner you make decisions about your health care, your finances and your estate, the more in control you will feel and the better prepared you are for the future and ensuring your family are taken care of.

You should have:

  • Will
  • Filed income tax
  • Enduring Power of Attorney (financial/legal affairs) *
  • Representation Agreement (personal care/health care decisions) *
  • Advance Directive which is a written summary of your wishes and instructions for future health care*
  • If you are the ‘Breadwinner’ talk to a Financial Advisor/ Bank re: assets, mortgage, debts
  • For advice re: disability, financial aid, contact Interior Health for Social Worker support

​*For further information on Power of Attorney, Representation Agreements and Advance Care Planning see www.nidus.ca.


You may be able to continue working, however, if your job requires driving, operating machinery, or may affect safety, then your employer must be notified.

Depending on the work you do, some adjustments to work environment and/or work schedule may be necessary. Working will provide income, socialization, a sense of purpose/satisfaction, and a temporary distraction.

Daily Life

  • Follow a healthy diet, exercise, cognitive stimulation exercises
  • Continue to participate in sporting, social activities
  • Focus on your strengths, remain active and involved in family life and community activities
  • Initially, you may continue driving, however, over time, you may find it becomes more difficult and not safe. Talk with your doctor and family. If you wish to continue driving, you will be required to take a road safety test
  • If mobility or balance is worsening, consider using adaptive aids — shower stool, grab bars and request a home safety assessment from Interior Health Community Care
  • To help stay organized and remember appointments, keep a journal or diary, write important events on large calendar on wall or refrigerator, look at assistive technology options e.g. talking clock, medication reminders
  • Write letters, make videotape, compile a memory book for family and friends


www.uwaterloo.ca/ ..../young-onset-dementia-us-us-guide
First Link Dementia Helpline, 1-800-936-6033

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About the Author

Tracey Maxfield, RN, BSN, GNC(c), DDS, is a dementia educator, consultant and advocate with over 35 years working with dementia populations in the U.K. and Canada.

She has worked in a variety of heath-care settings: acute care, palliative care, community care, residential care, physicians offices and community health centres.

Tracey has appeared on the U.S. radio shows Caregivers With Hope and Alzheimer’s Speaks, and has a dementia column in an on-line medical and holistic magazine, The Scrutinizer. 

She is a the Purple Angel Dementia Ambassador for the Central Okanagan, and sits on the board of directors for Seniors Outreach Society, and is a committee member of the Better At Home program.

She can be reached at [email protected].

The views expressed are strictly those of the author and not necessarily those of Castanet. Castanet does not warrant the contents.

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