How to manage your money and finances when living with young‐onset dementia

Thinking about money and the future can be stressful for many people, whether they are facing health changes or not.

Still, by doing some money planning early on in your young onset dementia journey, you can avoid heavier stresses later.

Everyone’s money approach will be different based on their income, assets, job type, employment status, benefit plans, abilities, knowledge, needs and contacts.

There is no one right or wrong way to approach money planning while living with young onset dementia.The approach needs to work for you and those closest to you.

The most important thing is to get started as soon as possible, while also being aware that this process can take time. Here are some guidelines to think about.

Learn more about the key steps you should take next

In April 2021, the CEO of the Alzheimer Society of Manitoba and a VP from IG Wealth Management created a video presentation about finances and dementia. It can be a good idea to get started by viewing that free one-hour video.

After the video, make a list of any outstanding questions you might have.

Reading and reviewing the Alzheimer Society webpage on planning for your future can also be helpful as an introduction to the range of actions to take in the coming weeks and months.

Your local Alzheimer Society may also be offering regular money workshops. Reach them at alzheimer.ca/find or contact our information and referrals line at info@alzheimer.ca or 1-855-705-4636 to get connected with a program near you.

Bring on at least one friend, family member or advisor to help with your money planning

It’s important, as you go through your money planning, to have support of someone who understands you and your diagnosis.

“Talk over with a friend or a family member to get your head around what you need to do in these situations,” advises Tina, who lives with young onset dementia in Winnipeg.

This trusted person could be helpful in filling out worksheets, joining you at appointments, and assisting in future with legal and financial documents.

This person (or people) should be someone you trust. It should be someone has your best interests in mind. It should also be who is familiar with your symptoms or diagnosis.

If you are having challenges locating such a person, a staff member at your local Alzheimer Society will be able to help. Just go to alzheimer.ca/find to get the contact info for your local society, or contact our information and referrals line at 1-855-705-4636 or info@alzheimer.ca to get linked up.

The non-profit agency Credit Canada also provides counselling to people facing life changes that impact their finances. Set up an appointment at creditcanada.com/contact-us or by calling 1-800-267-2272.

Ask your bank or credit union to set up some free, quickly implemented money-management tools

Some families living with young onset dementia find it’s easier to manage finances when all the bank and credit accounts are switched to a joint setting.

Take note: it is always recommended that you seek legal guidance before changing ownership of any accounts. If you are not in a position to adjust your accounts, then it is recommended that your trusted person review your activities or that they are present with you when you access your finances.

If a joint setting for accounts does make sense to you and your advisors, you could have a backup person—as long as it is a trusted backup person!—who could easily check on spending and bill payments to ensure that any thinking issues or memory problems don’t negatively affect your credit rating or financial status.

Some people also find it helpful to reduce the number of credit cards and debit cards they use. Some also put new limits on their credit and debit cards if they are concerned their symptoms could cause them to overspend.

Making sure any bill payments are processed automatically can be another helpful move.

The Government of Canada also has some information about banking while living with a disability that includes low-cost bank account access.

Next, fill out some worksheets to make sure all your current financial and legal info is in one place

Here are a few free worksheets and inventories to choose from:

• Financial and Legal Worksheet by the Alzheimer Society of Canada (adapted with permission from an American worksheet created by the Alzheimer’s Association)
• Personal Information Inventory by Ontario Securities Commission and GetSmarterAboutMoney.ca
• Worksheet: Organizing my Finances by Dementia Australia

Each of these worksheets is slightly different. Use whatever seems most friendly to you, or a combination of them. Keep them in the same place in your home and update them as you go through the following steps.

Using your worksheets, notes and trusted advisor, make an appointment to talk with your bank or credit union about your longer-term financial future

Feedback from your bank or credit union may help you determine what financial steps to take next: be it continuing to work with accommodations, using a workplace disability plan, taking early retirement, accessing government disability payments, or selling off assets.

It’s true that some people and families with young onset dementia choose to manage their financial situation in part by selling off a major asset such as a house or condo.

Chrissy Thelker, who lives with young onset dementia in Vernon, BC, fell into this category. She writes about making that decision with advice from her bank in her memoir For this I am grateful: Living with dementia.

“When I got sick, I was hoping that in a short time I would be well enough to return to work,” Chrissy writes. “However, things deteriorated, my medical costs were soaring, I had no income, some days I could barely make it across the room, most days I was really not functioning but I kept trying to keep things done [but]…. The money to do it was going towards health costs, I was watching all my hard-earned savings disappear.”

She continues: “I sat with my banker and talked about the long-range forecast, which was not good. He said looking after my health had to be my top priority…. [I decided] I needed to sell, to downsize, to stop pushing my already sick body.”

Whatever decision prioritizes your overall health, as Chrissy observes, needs to come first.

If you already work regularly with professionals like financial advisors and accountants, reach out to them too

Some people living with young onset dementia have already worked for many years with financial advisors and accountants.

If you are one of those people, now is a time to reach out and let those financial advisors know about your diagnosis, and get their professional perspective.

“I have an accountant who's a longstanding friend and who, you know, last year on my tax return, didn't mind getting in touch with me and said, ‘You've really screwed this up.’” says Mike, a person with young onset dementia in Western Canada. “And I had to say, yeah, sorry about that. This is what's going on.’ And he said, ‘I thought something wasn’t going right. It didn't seem to be [like] you.’”

And you don’t have to wait until your accountant or financial professional mentions something is amiss. Set up a meeting with them proactively. Then attend with your trusted advisor to take notes and consider their advice.

If you would like a finance-focused counsellor but don’t have one yet, the non-profit agency Credit Canada also provides counselling to people facing life changes that impact their finances. Set up an appointment at creditcanada.com/contact-us or by calling 1-800-267-2272.

Then, with your trusted friend, family member or other trusted individuals, talk through and make your decision about next steps

When Nancy Scott and her husband, who lives with young onset dementia, spent some time in the first year after diagnosis thinking through these many factors.

They knew that they wanted to remain in their home. They also knew that they were losing her husband’s work income, and that Nancy herself may need to cut back on work to provide care at home.

So together they decided to remortgage their Winnipeg house.

Before finalizing that decision, however, Nancy and her husband had their in-laws over to discuss the plan and get their feedback. For them, the in-laws acted as those trusted advisors.

“I talked to my in-laws and laid out our whole financial situation,” Scott says. She found their support helpful.

Nancy also took the opportunity to get even more stability along the way: “When I redid the mortgage I cancelled the mortgage at one bank and then got a much better rate at another bank,” says Scott. “And I added money to our mortgage so all our lines of credit and credit cards were paid off—so we had some emergency money sitting there, which was incredibly, incredibly helpful.”

If you are currently working, think about how you would like to keep working—or not

In 2021, the Alzheimer Society of Canada spoke with several families living with young onset dementia about how they handled work commitments early on in their symptoms and/or diagnosis.

Some people we spoke with decided to continue working. Some took early retirement or a leave. Some asked for accommodations or a different work role. And some had lost or left their job prior to diagnosis as a result of their (previously undiagnosed) symptoms.

All of these people found a way through what was happening in their work lives and related income. But taking time to plan can be an advantage.

One tool that might help as you think about finances in wider scope of work and the future is the Young Onset Planning Ahead Checklist created by the Alzheimer Society of Alberta and the Northwest Territories. Pages 4 and 5 of this checklist relate to work and finances in particular.

Also take a look at our article on “How to approach work when you are living with young onset dementia.”

If you have short-term and/or long-term disability insurance through your workplace, get familiar with those policies and benefits

Taking short-term and/or long-term disability can help provide important income in the near or distant future.

If you work in a place that provides these types of insurance, contact your Human Resources department or Employee Assistance program for details as soon as possible.

Add notes about these benefits, and how long they last for, to your worksheets.

For more considerations, read our related article “How to approach work when you are living with young onset dementia.”

Also learn about the range of disability benefits and caregiver benefits available in Canada

The Financial Consumer Agency of Canada has created a webpage of key information for people living with a disability in Canada.

This page includes an overview of disability benefits federally and regionally. It also has information on tax credits when living with a disability, and working when living with a disability.

Also included are some tools for managing your money when living with a disability.

If you have a caregiver in your family, they may also qualify for a range of benefits listed on the Government of Canada website.

The Benefits Finder tool on the Government of Canada website can also be helpful here. Add notes about the benefits you qualify for to your worksheets.

If you are an Indigenous person, it can also be a good idea to speak with your community or band office about relevant benefits that could be needed after your diagnosis. Programs to consider may include the On-Reserve Income Assistance program or the Non-Insured Health Benefits for First Nations and Inuit program.

If needed, research the costs of supportive housing and long-term care in your area

Many people living with dementia and other medical conditions do live at home until the end of their lives.

However, some also enter long-term care or supportive housing as their dementia progresses.

If long-term care or supportive housing are part of your future care plans, check to see how much supportive housing and long-term care might cost per month.

The costs of supportive housing and long-term care vary by province and territory. According to the Canadian Mortgage and Housing Corporation and MoneySense magazine, the rent on a retirement home space varied from an average of $1,700 per month in Quebec to an average of $3,800 a month in Ontario.

Subsidies may be available as well, which are worth researching too. As you research, add any relevant notes to your worksheet.

Don’t forget to set up or review your powers of attorney, and create or update your will—it doesn’t have to be expensive

A power of attorney tells people who will make choices about your medical care and finances when you can’t. And a will tells people who receives your money and property.

There are actually two types of power of attorney documents: one for personal care and one for property, which includes finances. The main duty of an attorney is to act in your best interests. (Find out more in our article “Why You Should Have Powers of Attorney” and this Government of Canada information page about powers of attorney.)

It’s also important to get your will created or updated. If you don’t have a will, it’s possible your money and property could be caught up in the court system later on. Find out more in our article “7 important reasons to make a will right now.”

Luckily, getting a will and power of attorney made isn’t as expensive as it used to be.LegalWills.ca is a low-cost option that offered will and power of attorney packages for $99 in February 2022. Likewise, the Canadian company Willful.co also offered a will and powers of attorney package for $149 in February 2022.

There are also some free, no-fee will-creation options out there—though some professionals advise against them, or advise to use them with caution. If you do need a free, no-fee option, LawDepot.ca can help you quickly create wills and powers of attorney for any province or territory in Canada. 

In some cases, you will want or need to get legal documents notarized. Notarization can cost $12 to $90 per document, depending on where you live in Canada. You can always ask the Alzheimer Society in your area for help finding a notary or other legal support that is affordable and/or trusted in the dementia sector. 

Continue to be aware of scams, and work with your trusted person

“There are a variety of scams and frauds happening in Canada—with new ones invented daily,” says the Canada Revenue Agency website. “Learn how you can protect yourself from scammers and be scam smart.”

Being scam smart is especially important when you are living with young onset dementia, since your thinking skills can be affected.

Visit Revenue Canada’s Scams and fraud webpage with your trusted person. Review the videos and tips there to keep yourself safe. Protecting your financial information is important.

Know that you are not alone, and that the Alzheimer Society is here to help

As we’ve said already, there are many factors to weigh when thinking about money matters—whether you are living with young onset dementia or not.

Also, each province and territory also has slightly different disability payment and support programs, labour laws and securities regulations, which can change the financial planning picture depending on where you live.

That’s why your local Alzheimer Society is here for you every step of the way. Their workers can help you figure out the next steps in money planning and management specific to the area where you live, recommend lawyers dealing with powers of attorney in your region, and more. Many local societies also run workshops about finances.

To connect with the experts at your local society, use their contact information available at alzheimer.ca/find.

Or, if it’s easier for you, email or call our national information and referrals line at info@alzheimer.ca or 1-855-705-4636, and the representatives there will link you up with the local experts in your area