One of the scariest things about Alzheimer’s disease, besides the obvious physical changes, is the uncertainty it brings for the family. This is especially true about the financial costs that we don’t always think about.

The Alzheimer’s Association sent over some information that could prove to be helpful for those like me who care for a family member with the disease. In my case, I’ve been a caregiver for my husband, Tony, since he was diagnosed with early-onset Alzheimer’s disease in 2015.

Tony is one of the estimated 255,600 individuals here in Illinois who are living with Alzheimer’s. He’s one of the more than 7 million in the nation who are doing so.

Since January is Financial Wellness Month, the Alzheimer’s Association is encouraging individuals and families to take proactive steps toward financial planning. This is key to providing a sense of security in the event of a caregiving crisis related to Alzheimer’s or another form of dementia.

“Six in 10 Americans are working while also managing Alzheimer’s caregiving responsibilities,” Delia Jervier, executive director of the Alzheimer’s Association Illinois Chapter, said in a news release. “Many are forced to reduce their work hours, adjust schedules, take unpaid time off or leave the workforce altogether. The resulting loss of income can have a profound impact on a family’s overall well-being.”

How great of a toll? Consider these statistics from the “2025 Alzheimer’s Association Alzheimer’s Disease Facts and Figures” report:

• The lifetime cost of care for a person living with dementia averages $392,874.
• Dementia caregivers face nearly twice the out-of-pocket expenses of nondementia caregivers ($12,388 compared to $6,667).
• Nearly half (48%) of caregivers must cut back on necessities such as food, transportation and medical care to afford dementia-related expenses, while many rely on personal savings or retirement funds.
• Nearly two-thirds of Americans mistakenly believe that Medicare covers nursing home care or are unsure whether it does.

Here in Illinois, about 314,000 people like me provide unpaid care for a family member or friend living with Alzheimer’s disease. As care needs grow over time, families often face increasing costs for services and support.

“Financial literacy is especially important for caregivers,” Jervier said in the release. “It gives them the tools and confidence to manage their own financial health while supporting someone living with Alzheimer’s.”

To help families navigate these challenges, the Alzheimer’s Association has launched a free online education program, “Managing Money: A Caregiver’s Guide to Finances.” It can be found here.

The program offers practical guidance, including:

Plan early: Early financial planning benefits both caregivers and individuals living with the disease.

Start the conversation: Involve trusted family members and friends to discuss financial wishes and plans.

Protect against fraud: People living with dementia are at high risk for financial exploitation and may struggle with decision-making.

Organize finances: Take inventory of assets and resources, including savings, insurance, retirement benefits, government assistance and VA benefits. Financial planners or elder law attorneys can help.

Create a backup plan: Designate a trusted backup agent for power of attorney and consider sharing responsibilities among multiple people.

For more information and financial planning resources, visit the Alzheimer’s Association “Plan for Your Financial Future” webpage (alz.org/help-support/i-have-alz/plan-for-your-future/financial_planning) or go to alz.org.

Some of these recommendations were things that Tony and I stumbled our way upon at the beginning of his dementia journey. This kind of resource back then would have been very useful.

• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.