Dementia often involves profound financial challenges for individuals and their families

By Zachary T. Rossi Last updated Jun 4, 2022

The beginning of Nancy and Randy Scott’s journey with Alzheimer’s began itself on a literal journey.

“We were on vacation in Vancouver in 2018, Randy’s hometown, and while I was driving he kept giving me directions where he said turn right but was pointing left,” says Nancy, 57. , Registered Nurse and Department Head for the Health-Career Training Program at Herzing College in Winnipeg.

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Nancy and Randy Scott

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Nancy and Randy Scott

“Most people will mix that up once, but he’s done it four times in a row.”

As Nancy explains, a typical diagnosis often occurs a few years after the onset of Alzheimer’s disease.

“We were lucky in a way because he had a clear sign of dementia right there: a language disorder.”

The journey from those early symptoms to diagnosis to day-to-day management of Alzheimer’s has posed many challenges, including finding ongoing care so Randy, 56, can stay home while Nancy continues to work. .

One of the hardest has been coping with the upheavals in financial life, says Nancy.

“We are really still in the middle of our lives.”

Randy is one of approximately 28,000 people in Canada diagnosed with the neurological disorder before the age of 65.

Not only does Alzheimer’s disease slowly erode their health, independence and sense of who they once were, it often disrupts their retirement plans.

Potential financial challenges are not lost on sponsors of the Alzheimer Society of Canada’s largest fundraising event, the IG Wealth Management Walk for Alzheimer’s Disease taking place today at St. Vital Park .

“It’s a huge problem in Canada,” says Aurèle Courcelles, assistant vice-president of tax and estate planning at IG Private Wealth Management.

<p>MIKAELA MACKENZIE / WINNIPEG FREE PRESS</p>
<p>Nancy Scott’s husband, Randy, was diagnosed with early Alzheimer’s disease.</p>
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<p>MIKAELA MACKENZIE / WINNIPEG FREE PRESS</p>
<p>Nancy Scott’s husband, Randy, was diagnosed with early Alzheimer’s disease.</p>
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<p>“More than 700,000 Canadians are living with dementia, and that number is expected to reach approximately one million by 2032.” </p>
<p>Not only are people with the disease affected; it is often their spouse and other family members as well. </p>
<p>Courcelles says early onset is especially difficult when individuals don’t have a financial plan in place to deal with “worst case scenarios” like early onset Alzheimer’s disease. </p>
<p>“When you’re healthy, you tend to think these things will never happen,” he adds. </p>
<p>At a minimum, individuals should include a will, power of attorney and living will in their basic financial plan. </p>
<p>A power of attorney and a living will – also called health care directives – are the most important things to have before people develop Alzheimer’s disease. </p>
<p>And for those who don’t, Courcelles recommends getting them in place as soon as possible while individuals are still able to choose someone they trust to manage their money and healthcare decisions. when they can no longer make these choices for themselves. </p>
<p>If they don’t, the families risk a longer and more complicated process that could involve the courts, he adds. </p>
<p>Other key considerations include a closer look at workplace disability insurance, assessing whether additional coverage may be warranted or, in the case of the self-employed, determining how much private coverage they can afford. allow. </p>
<p>Another useful planning strategy is to simply set up an emergency savings account. </p>
<p>“People think of a rainy day fund in case they lose their job or have their roof repaired,” Courcelles says. </p>
<p>This savings pool will not solve all the financial problems resulting from the early onset of dementia, but “at least the money could get people through this first difficult period”, he adds. </p>
<p>Indeed, there’s a lot to discover early on, says Erin Crawford, program director at the Alzheimer Society of Manitoba. </p>
<p>“It’s not just a matter of cost; you need a different type of financial plan in place to maximize quality of life now and in the future,” she says. </p>
<p>In Nancy and Randy’s case, their retirement plan was still taking shape when he was diagnosed. They were planning to retire around age 65, and they still had a mortgage, a car loan, credit card bills and a line of credit to pay off before then. </p>
<p>“There’s so much to learn so quickly,” says Nancy. </p>
<p>Randy, a carpenter, had disability insurance through an employer which, when combined with Canada Pension Plan disability, amounts to approximately $2,000 per month before taxes. </p>
<p>They also remortgaged to eliminate credit card debt and add some extra room for extra expenses. </p>
<p>Most people with an early diagnosis of dementia aim to stay in their homes as long as possible, and although “home care funded by Shared Health in the province is available, it is limited and often insufficient to people’s needs,” says Crawford. </p>
<p>Additionally, many people with dementia end up moving to a personal care home because they can live safely in their home longer. </p>
<p>Long-term care costs are based on income, but because couples are often separated, their household costs effectively double, Crawford says. </p>
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Home care was not suitable for Randy and Nancy, as Randy needed supervision while Nancy worked full time.

Instead, they chose a more robust but complex option offered by the Winnipeg Regional Health Authority, called the Self-Care and Family Program, and paid for by the province.

“It’s quite a process; there is so much to learn,” says Nancy. “You kind of have to become a business, register with the Canada Revenue Agency,” and that can involve hiring and training people, and even managing payroll.

Today, the couple is in a manageable, but still difficult situation.

With many caregiving and financial issues resolved, Randy and Nancy can now focus on maximizing their time together, which includes traveling as much as possible to visit family and friends, Nancy says.

“I felt it was really important for him to be able to do what he wants to do, so I asked him, ‘What’s on your to-do list? “”

Dementia often involves profound financial challenges for individuals and their families

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