What health-care workers need to know about young onset dementia

An estimated 28,000 people in Canada live with young onset dementia. That is, dementia affecting people between the ages of 20 and 64.

What’s more, thousands of other people—friends, family members and loved ones—are also impacted by the changes they experience in those diagnosed with young onset dementia.

Yet there is still a lack of awareness about young onset dementia in Canada’s health-care systems.

In fall 2021, the Alzheimer Society of Canada asked 33 people—both people living with young onset dementia and care partners—what they would like health-care workers in Canada to know.

Here is some of what they told us.

Dementia can happen to people in their 40s and 50s, and even younger

More than a few of the people we spoke with in fall 2021 told us that they or their caregivers had a difficult and frustrating time convincing doctors they might have young onset dementia.

Some told us that their doctors said they were “too young” for dementia.

Others told us that doctors were convinced their symptoms were solely due to depression, anxiety or some other mental health issue. Likewise, some people were told their problems were solely due to menopause.

Indeed, all of those things—depression, anxiety, mental health issues, and menopause—can affect thinking, memory and concentration.

But young onset dementia can affect those things too. And early diagnosis matters.

The fact is, dementia can happen to people in their 40s, 50s and 60s. Or even younger. When that happens, we call it young onset dementia.

Young onset dementia can present with a wide range of symptoms

More than 50 different diseases or conditions can be associated with young onset dementia. And even within a single disease or condition, initial symptoms can vary.

For instance, one person’s young onset dementia symptoms might be quite physical, relating to balance, walking and vision.

Another person’s young onset dementia symptoms might affect communication, relating to speaking and listening.

And another person’s young onset dementia symptoms might include changes in behaviour, temperament, mood or relationship style.

Dementia is not just or only about memory loss. It can present in all these other symptoms instead, or as well.

It's important for all health-care workers, not just doctors, to be aware

Because dementia can present so differently in different diseases and different people, family physicians aren't necessarily the first ones to be approached about symptoms.

If the symptoms are behavioural or emotional, for instance, patients might first approach a psychologist, psychiatrist or counsellor for help.

If the symptoms are physical, the health-care workers to be alerted first could be a chiropractor, physiotherapist, a personal support worker or an occupational therapist.

And if a patient has had problems with primary care physicians or biomedical approaches in the past, they might approach a different kind of care provider they trust—such as a naturopath, massage therapist or acupuncturist—with their initial symptoms.

Health care is a team effort, and it's important that all health-care workers are aware of young onset dementia.

It has often taken people with young onset dementia much longer to get a diagnosis

In September 2021, the World Alzheimer Report emphasized that early diagnosis is crucial for treatment of all dementias.

An early diagnosis can connect people to treatments, supports and programs when they are likely to be most effective. And an early diagnosis can help people living with dementia, families and friends better plan for the future.

Yet people with young onset dementia face more challenges than most in getting a timely diagnosis.

A Dutch study has shown it can take an average of 4.4 years for younger people to be diagnosed with dementia. This is 57% longer than it takes to diagnose dementia in older people. This delays access to treatment and support – and increases other risks in the meantime.

But good information now exists about how to diagnose young onset dementia more efficiently

In 2021, Toronto dementia specialist Dr. Mario Masellis, of the University of Toronto and Sunnybrook Institute, wrote an essay for the World Alzheimer Report about how to efficiently diagnose young-onset dementia.

Some key diagnostic points Dr. Masellis outlined are:

A good clinical history followed by a thorough general and neurological exam are the necessary first steps to an accurate diagnosis.
Special attention should also be paid to family history, as well as infectious (such as Human Immunodeficiency Virus [HIV]) and toxin (for example, heavy alcohol use) exposures.
Initial assessments should include
- Cognitive tests such as the Montreal Cognitive Assessment (MoCA) and/or Mini-Mental State Exam (MMSE)
- Basic blood work looking for potentially treatable causes of cognitive impairment (such as anaemia, vitamin B12 or other vitamin deficiencies, thyroid abnormalities)
- Brain imaging (preferably MRI but at minimum a CAT) “to rule out structural abnormalities, such as brain tumours, cerebrovascular disease, or infectious cysts and to identify neuroanatomical features of the different causes of dementia.”

Here are other key things to know about diagnosis, from Dr. Masellis and other sources:

Cognitive symptoms are not the sole thing to look for. “While a memory deficit is the most common clinical presentation of both early-onset sporadic and familial Alzheimer’s disease in the majority of cases," Dr. Masellis writes, symptoms of “visuospatial, language, or behavioural/executive problems occur more frequently than in late-onset forms.”
Even within a single disease type, there can be a wide range of symptoms. “Mirroring the diversity of human personality and behavior, the symptoms of FTD, which is actually a group of syndromes, are remarkably varied, spanning social, emotional, executive, behavioral, language, and even motor dysfunction,” says one report from the International Conference on Frontotemporal Dementias 2021.
UK researchers writing in 2019 about young-onset dementia diagnosis also recommend “caution when ascribing emotional and eating symptoms to mood disorders.” And they note any changes in behaviour can also in part be examined through use of a social cognition questionnaire.
Those same UK researchers also suggest looking for signs of apraxia, parkinsonism, upper and lower motor neuron symptoms and eye signs.

For more information, read Dr. Massellis' expert essay "What is the most efficient way to diagnose dementia in a young person?" on page 283 to 287 of the 2021 World Alzheimer Report.

Some dementia-like symptoms can actually be a sign of a reversible or treatable condition, especially in younger people

“While neurodegenerative diseases, such as Alzheimer’s disease, are still the most prevalent causes even in this age group,” writes Dr. Mario Masellis in Chapter 23 of the 2021 World Alzheimer Report, “reversible or treatable causes are relatively more prevalent in young-onset dementia compared to late-onset cases.”

These reversible or treatable causes of cognitive impairment can include, but are not limited to, the following:

early cases of Wernicke-Korsakoff Syndrome due to vitamin B deficiency, low nutrition and/or excessive alcohol consumption
HIV-associated dementia and neurocysticercosis
obstructive sleep apnea
autoimmune encephalopathies that are potentially steroid-responsive
Wilson’s disease presenting with dementia, parkinsonism and/or psychiatric symptoms

There are specialists and clinics that can help with diagnosis

If you are concerned your patient might have dementia, one option is to refer them to one or more of the following specialists as available in your area:

Memory clinic
Neurologist
Neuropsychologist
Neuropsychiatrist
Geriatrician
Geriatric psychiatrist
Psychologist

Some people we spoke with told us that their definitive diagnosis came from neuropsychological testing. Others say a full psychological assessment is what made the difference. And others say it was a neurologist who made the diagnosis.

The support of a family doctor or nurse-practitioner in providing the necessary referrals can be very helpful to people with young onset dementia symptoms.

After diagnosis, make sure to refer your patients to the Alzheimer Society's FirstLink program

This free program offers a spectrum of services, information, and support to people and families post-diagnosis.

See alzheimer.ca/firstlink for further information, or contact your local Alzheimer Society.

Beyond diagnosis, there are key ways you can show support to a person living with young onset dementia

Here are some ways to help folks with young onset dementia, and their families, beyond diagnosis itself:

Don't assume that you know for sure what dementia stage or symptoms someone is experiencing until a full assessment has been done or reviewed, and you have communicated with the person themselves (and, in some cases, their close contacts) about their current symptoms
Do know that many people with young onset dementia can live well and take good care of themselves with the appropriate supports and tools
Be patient and give folks time to speak or find their words; reduce distraction when communicating.
Take a compassionate approach in delivering diagnosis; a 2019 University of Manitoba young dementia study indicated that “Families spoke positively of health care providers who they felt delivered the diagnosis with compassion, took time to answer questions, and offered to connect them with supports."
Give people time to process a diagnosis, and “consider setting up a second appointment to discuss next steps and answer questions,” recommends that same Manitoba study.

Family knowledge and wider knowledge is also vital to honour and learn from. Here are some tips on how to do that:

Include family and trusted individuals in conversation with your patient.
Recognize younger caregivers—people who may be in their 20s while being primary caregiver to a parent, partner or elder. Make sure to include them in conversations or communications about referrals, medication changes and more, as many anecdotally report being excluded from such exchanges.

The Alzheimer Society is always here to support health-care workers, patients and families living with dementia

The Alzheimer Society of Canada works directly with various health-care organizations in order to help health-care workers better diagnose, understand, treat and care for people living with dementia.

Since 2021, we have also been working with the College of Family Physicians of Canada to create better resources for health care workers about dementia. As those resources get developed, and beyond, you local Alzheimer Society is also here for you to assist with any questions you might have about dementia.

And we are also here for your patients and families before, during and after diagnosis.

You or your patients can reach your local society today via alzheimer.ca/find. Or contact our national information and referrals line at 1-855-705-4626 or info@alzheimer.ca to get connected with the regional experts you need.