Early onset dementia: How to care for your spouse and yourself

A dementia diagnosis is upsetting at any age, but for those who develop the disease earlier in life, it presents a host of unique issues that impact the entire family.

“People diagnosed with early onset dementia are typically still in the workforce, they still have a mortgage, and kids living at home or in university. In some cases, they might also have a parent living in their home,” says Mary Schulz, education director at the Alzheimer Society of Canada. “This presents a myriad of stressors for both the person with dementia and their spouse, both of whom are at the peak of their most productive years.”

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Early onset dementia (sometimes referred to as young onset dementia) accounts for approximately two to eight per cent of dementia cases — about 16,000 Canadians have it — and it typically affects people in their early 50s (although there are rare cases of it manifesting itself in people as young as 30). There are currently more than half a million Canadians living with dementia (including Alzheimer’s disease, the most common form of dementia), and there are 25,000 new cases diagnosed each year.

Yet, Canadians still attach a stigma to the disease. In an exclusive Ipsos poll conducted for Global News, one in three Canadians say they’d rather not know if they had dementia or Alzheimer’s, and nearly half said they’d rather lose their body than their mind. However, 63 per cent said they were concerned a family member could be developing the disease.

“The waters are muddied when we talk about mental health in Canada,” says Jennifer Macey, vice-president of Ipsos Public Affairs. “We use off-colour terms like ‘demented,’ and we joke about it. There’s a pride issue, too: we have pride in a spouse who was always taking care of the bills or of the house, and now they can’t anymore. There’s fear there.”

What are the warning signs of early onset dementia?

Schulz says that many people make the erroneous assumption that dementia manifests itself first and foremost as memory loss, but that’s not always the case, especially with early onset dementia.

“There’s a higher likelihood that early dementia won’t be Alzheimer’s, but another form like frontotemporal dementia that affects a different part of the brain and could lead to difficulties with things like problem-solving or executive functioning,” she says.

Other forms of dementia could cause sudden behavioural changes that cannot be explained, like volatility or uncontrollable anger.

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“If you have a 55-year-old partner and you notice that he’s coming home from work really agitated, he’s easily angered or he’s suddenly very volatile when he’s behind the wheel, that could be a warning sign.”

Unfortunately, Schulz says, doctors are not quick to consider dementia as a diagnosis, and many patients go through a harrowing diagnostic progress where their signs are chalked up to stress, menopause or hormonal changes. Although all these conditions could be at the heart of major behavioural shifts, it’s important to seek medical attention as soon as possible and undergo the necessary tests to determine if these shifts aren’t, in fact, a sign of dementia.

What to do when you have a diagnosis

Firstly, know that this doesn’t mean your spouse will change from one day to the next.

“We know people can live fairly well for a while with this disease. Some medications are primarily designed for Alzheimer’s and they’re particularly helpful for a period of time,” Schulz says. “It can help them hold on to some abilities longer, like dressing themselves or brushing their teeth.”

Reach out to a local society who can help you through every stage of the disease, from helping you tell your kids, to planning for a future where your spouse won’t be working and you could go down to a single-income home.

She also says to start thinking about getting your family finances in order. Establish a power of attorney and write out a will, if your spouse runs a business, think about succession planning. If your spouse has an employer, speak to them about making arrangements to accommodate your situation.

“Look at employee assistance programs and talk to their employer for possible accommodations. If your spouse had cancer, you’d be asking for the same thing. This is no different.”

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It’s also important to stay active socially. Joining a support group is helpful not just for being able to talk to others in the same situation, but it also allows you to socialize in a safe environment where you won’t feel as though you need to keep up appearances for the sake of others.

“Some people are frightened by dementia because it involves the brain, which is what makes us human, but people with dementia are still whole people, they just have a medical condition that attacked their brain,” Schulz says. “If I had cancer, I wouldn’t be excluded from my book club, my friends wouldn’t stop inviting me to the movies. This is a disease like any other, and isolation can make it worse.”

It’s also vital that the caregiver takes care of themselves. Research has shown that dementia caregivers experience higher levels of stress, depression and anxiety, as well as poor physical outcomes including high levels of stress hormones, compromised immune response, greater medication use and greater cognitive decline.

Create a support network for yourself and accept help when it’s offered. Stay healthy and engaged by eating properly, getting sleep and exercise, and ensuring you carve time out for yourself to pursue your own interests. Above all else, try not to take things personally.

“We know that caregivers are at a higher risk of health problems themselves,” Schulz says. “Be mindful that making time for yourself is not a choice, but a necessity.”

These are some of the findings of an Ipsos poll conducted from Dec. 10 to Dec. 14, 2017, exclusively for Global News. A sample of 2,098 Canadians aged 18+ was sampled via the Ipsos I-Say panel and non-panel sources. Quotas and weighting were employed to ensure that the sample reflects that of the Canadian population by region, age and gender according to Canadian census information. The precision of Ipsos online polls is measured using a credibility interval. In this case, the results of the poll are considered accurate to within +/- 2.4 percentage points, 19 times out of 20, of what the results would be had all Canadian adults been polled. Credibility intervals are wider among subsets of the population.