A loved one's dementia will break your heart. Don't let it wreck your finances

90.5 WESA | By Sarah Boden

Published June 13, 2023 at 5:00 AM EDT

Sharon Gwinn holds a picture of her husband, who had Lewy body dementia toward the end of his life. Reckless financial behavior was one of the first signs of the disease. "It's what attacked his brain first," Gwinn says.

Sharon Gwinn had been married almost 30 years when she cleared out the savings and checking accounts that she shared with her husband, and then transferred that money into accounts that were only in her name. It felt horrible, like she was stealing. But short of losing everything, Gwinn was out of options.

That was some 20 years ago. Gwinn's husband was still working as a hospital orderly when he started to spend money erratically. One Thursday night he racked up a $3,000 tab at a Pittsburgh cop bar, buying rounds for strangers. Gwinn says she discovered his splurge — something totally out of character for him — when her credit card was declined at the grocery store.

That's when she realized that her husband was showing the first of a series of cognitive changes that eventually would be diagnosed as Lewy body dementia.

"He drove for years after his financial awareness was gone," Gwinn says. "It's just this one area. It's what attacked his brain first."

A growing body of research shows that people with dementia face worse financial outcomes. As NPR has reported, a 2020 study from Johns Hopkins University of 81,000 Medicare beneficiaries found that people with Alzheimer's and related dementias started to develop subprime credit up to six years before a formal diagnosis.

It is among a cluster of studies that point to financial problems as a possible warning sign — rather than just the fallout — of cognitive decline.

Carole Shepard, a self-employed geriatric care manager in suburban Pittsburgh, says it's best to start planning for the financial implications of dementia when people are still cognitively healthy: "It's about controlling your own destiny."

Though there are no perfect solutions, there are some steps you can take to protect yourself or your loved ones as you age. Here is advice from financial advisers and mental health professionals.

Put financial guardrails in place in advance

To avoid surprises, some financial advisers recommend having open conversations about money with loved ones and setting up tools that track your finances and flag any unusual patterns.

Sharon Gwinn was able to protect herself and her husband from financial ruin. But now, at 63 and a widow, Gwinn worries that if she, too, develops dementia, she could bankrupt herself before anyone notices: "I would hazard a guess, my children know way more about my finances than probably 90% of the people in my age group. They still don't know what my day to day is."

Experts say Gwinn's fear is a real possibility for millions of Americans, in part because the financial industry has been hesitant to enact changes that would protect the wealth of aging Americans. That leaves individuals and families to seek out safeguards.

The tech world offers some options to individuals and families who are seeking support. In 2020 the National Institute on Aging highlighted the work of SilverBills, a concierge service that makes sure bills are paid on time and inspects invoices for fraud and errors. The Cetera Financial Group has partnered with Carefull, an online company that monitors for fraud and financial errors, while also providing identity theft insurance.

And as the AARP notes, EverSafe scans accounts for unusual spending, such as the huge bar tab that Sharon Gwinn's husband tallied.

Sharon Gwinn doesn't want dementia to harm her finances if she should come down with it. She designated her oldest daughter as her power of attorney and set up a tool to flag any unusual financial behavior. This added protection makes Gwinn feel lighter."[My daughter] can hopefully help me nip things in the bud before I get myself into trouble," Gwinn says.

EverSafe says it can also help prevent financial fraud and exploitation — a major scourge for older Americans. The National Council on Aging estimates that seniors in the U.S. lose $36.5 billion every year due to elder financial abuse. (In comparison, last year Americans spent $45 billion in out-of-pocket costs on nursing home and other institutional care.)

"Those really smart scammers aren't just going to steal a huge amount from one account," says Liz Loewy, EverSafe's chief operating officer, as well as the former chief of the elder abuse unit at the New York County District Attorney's Office. "They usually are smart enough to start small and cover more than one account at more than one institution."

Not everyone can afford a service like EverSafe: packages range from roughly $7 to $26 a month. But such a service might have helped Gwinn, who couldn't prevent her husband from signing up for new credit cards even after she took control of the couple's finances. After consulting her four children, she decided to purchase the basic package for herself.

Now Gwinn's oldest daughter, who is designated as her power of attorney, will be notified if EverSafe flags anything unusual. This added protection makes Gwinn feel lighter.

"[My daughter] can hopefully help me nip things in the bud before I get myself into trouble," Gwinn says.

Work together to set up a collaborative plan with your family

Even more than financial monitoring, arguably the most important thing you can do is to involve your family or friends in a collaborative plan around aging and finances — ideally before any symptoms of dementia appear.

Carole Shepard, a geriatric care manager, and her husband both have family histories of dementia. They've drafted extensive financial plans and shared them with their adult children. "Hope is not a strategy," she says.

That's easier said than done, says Matt Lundquist, a New York City-based therapist who often works with families on issues around money — such as budgeting or caring for an elderly parent.

Money can represent stability, control, power, autonomy and safety, Lundquist notes. Therefore, addressing the financial safety concerns requires people to acknowledge the inevitability of death — their own and that of those they love — as well as the physical, mental and economic realities of aging. Even in the best of circumstances, money is a touchy subject — one that can raise discomfort and hackles, and one that is often considered no one else's business

It's crucial not to blindside family members with this big talk; instead, Lundquist advises that people give a heads-up that money issues need to be discussed: "It makes a difficult conversation much more likely to go well."

The conversation should cover topics such as selecting a financial power of attorney, how to safeguard against exploitation, and the responsibilities of day-to-day money management. A guide from the University of Minnesota offers a host of practical advice on everything from selecting a financial advocate to a list of important documents and how to complete a financial inventory.

Carole Shepard, the Pittsburgh-based geriatric care manager, warns that hard conversations are necessary and conflicts are inevitable, especially when they involve someone with progressive dementia. Too often, she sees her older clients in crisis because their hope had been that one day they'd peacefully die in their sleep without any of the humiliations of aging.

"Hope is not a strategy," she says.

That's why Shepard and her husband, both in their 60s and both with family histories of vascular dementia, have drafted extensive plans which they've shared with their adult children. They appointed their younger son as financial power of attorney and their older son as medical power of attorney. By making these decisions now, Shepard and her husband believe — hope — they're preserving their autonomy.

Shepard also hopes that being proactive will make it easier on her family, both emotionally and financially, as she and her husband continue to age.

Sharon Gwinn feels the same way: "I do not want my children to be responsible for taking care of me. What I have, I want my money to be spent for my care, and I don't want to burden them."

If dementia has already set in, include loved ones in decision-making as much as possible

Both Gwinn and Shepard know that if they do eventually develop dementia, all their planning won't protect their children from some degree of hardship. Symptoms are unpredictable and variable: depression, irritability, paranoia, impulsiveness. That creates a dilemma for adult children: Pushing help onto resistant parents incites strife; ignoring reality begets neglect.

"The truth is it's going to be difficult, and the chances of complete success are not very good," says Bob Levenson, a professor at the University of California, Berkeley who specializes in the emotional changes that accompany aging.

Levenson's best advice for caregivers and loved ones is to include the person with dementia in the decision-making process as much as possible. If a person can't articulate their desires, it's still important to consider the values and interests they held while healthy.

For example, perhaps a lifelong football fan is no longer capable of paying their own bills; the person in charge of their monthly budget could include a cable package that allows them to watch NFL games.

It's crucial to remember that the disease is the enemy, Levenson says: "Somehow, you have to try to find a way to stay on the same side with your loved one and not end up blaming each other."

Sarah Boden's reporting on dementia and financial decision-making is part of a fellowship with the Association of Health Care Journalists, supported by The Commonwealth Fund.