Sarah Boden: Dementia can cause financial disasters
Comedian and movie star Robin Williams (1951-2014) in 2011). His widow said he was diagnosed on autopsy with Lewy body dementia.
This article is from a partnership that includes WESA, NPR and KFF Health News.
NEW HAVEN, Conn.
Angela Reynolds knew that her mother’s memory was slipping, but she didn’t realize how bad things had gotten until she started to untangle her mom’s finances: unpaid bills, unusual cash withdrawals, and the discovery that, oddly, the mortgage on the family home had been refinanced at a higher interest rate.Looking back, Reynolds realizes her mother was in the early stages of Alzheimer’s disease: “By the time we caught on, it was too late.”
Reynolds and her mother are among a large group of Americans grappling with the financial consequences of cognitive decline.
A growing body of research shows money problems are a possible warning sign — rather than only a product — of certain neurological disorders. This includes a 2020 study from Johns Hopkins University of more than 81,000 Medicare beneficiaries that found people with Alzheimer’s and related dementias became more likely to miss bill payments up to six years before a formal diagnosis.
The reach of these conditions is enormous. One recent study found nearly 10% of people over age 65 have dementia; more than twice as many are living with mild cognitive impairment..
One weekday in the spring of 2018, Reynolds sat next to her 77-year-old mother, Jonnie Lewis-Thorpe, in a courtroom in downtown New Haven. She listened in discomfort as strangers revealed intimate details of their own finances in a room full of people waiting their turn to come before the judge.
Then it hit her: “Wait a second. We’re going to have to go up there, and someone’s going to be listening to us.”
That’s because the family home was in foreclosure. The daughter hoped that if she explained to the judge that her mother had Alzheimer’s disease, which had caused a series of financial missteps, she could stop the seizure of the property.
Reynolds can’t pinpoint when Alzheimer’s crept into her mother’s life. A widow, Lewis-Thorpe had lived alone for several years and had made arrangements for her aging, including naming Reynolds her power-of-attorney agent. But Reynolds lived a 450-mile drive away from New Haven, in Pittsburgh, and wasn’t there to see her mom’s incremental decline.
It wasn’t until Reynolds began reviewing her mother’s bank statements that she realized Lewis-Thorpe — once a hospital administrator — had long been in the grip of the disease.
Financial problems are a common reason family members bring their loved ones to the office of Robin Hilsabeck, a neuropsychologist at the University of Texas at Austin Dell Medical School who specializes in cognitive issues.
“The brain is really a network, and there are certain parts of the brain that are more involved with certain functions,” said Hilsabeck. “You can have a failure in something like financial abilities for lots of reasons caused by different parts of the brain.”
Some of the reasons are due to normal aging, as Reynolds had assumed about her mother. But when a person’s cognition begins to decline, the problems can grow exponentially.
Dementia’s Causes and Ruthless Impacts
Dementia is a syndrome involving the loss of cognitive abilities: The cause can be one of several neurological illnesses, such as Alzheimer’s or Parkinson’s, or brain damage from a stroke or head injury.
In most cases, an older adult’s dementia is progressive. The first signs are often memory slips and changes in high-level cognitive skills related to organization, impulse control, and the ability to plan — all critical for money management. And because the causes of dementia vary, so do the financial woes it can create, said Hilsabeck.
For example, with Alzheimer’s comes a progressive shrinking of the hippocampus. That’s the catalyst for memory loss that, early in the course of the disease, can cause a person to forget to pay their bills.
Lewy body dementia is marked by fluctuating cognition: A person veers from very sharp to extremely confused, often within short passages of time. Those with frontotemporal dementia can struggle with impulse control and problem-solving, which can lead to large, spontaneous purchases.
And people with vascular dementia often run into issues with planning, processing, and judgment, making them easier to defraud. “They answer the phone, and they talk to the scammers,” said Hilsabeck. “The alarm doesn’t go off in their head that this doesn’t make sense.”
Jonnie Lewis-Thorpe, a widow who now has Alzheimer’s disease, had made arrangements for her aging, including naming daughter Angela Reynolds as her power-of-attorney agent. But Reynolds lived 450 miles away and wasn’t there to see her mom’s incremental decline.
For many people older than 65, mild cognitive impairment, or MCI, can be a precursor to dementia. But even people with MCI who don’t develop dementia are vulnerable.
“Financial decision-making is very challenging cognitively,” said Jason Karlawish, a specialist in geriatrics and memory care at the University of Pennsylvania’s Penn Memory Center. “If you have even mild cognitive impairment, you can make mistakes with finances, even though you’re otherwise doing generally OK in your daily life.”
Some mistakes are irreversible. Despite Reynolds’ best efforts on behalf of her mother, the bank foreclosed on the family home in the fall of 2018.
Property records show that Lewis-Thorpe and her husband bought the two-bedroom Cape Cod for $20,000 in 1966. Theirs was one of the first Black families in their New Haven neighborhood. Lewis-Thorpe had planned to pass this piece of generational wealth on to her daughters.
Instead, U.S. Bank now owns the property. A 2021 tax assessment lists its value as $203,900.
Financial Protections Slow to Come
Though she can’t prove it, Reynolds suspects that someone had been financially exploiting her mom. At the same time, she feels guilty for what happened to Lewis-Thorpe, who now lives with her: “There’s always that part of me that’s going to say, ‘At what point did it turn, where I could have had a different outcome?'”
Karlawish often sees patients who are navigating financial disasters. What he doesn’t see are changes in banking practices or regulations that would mitigate the risks that come with aging and dementia.
“A thoughtful country would begin to say we’ve got to come up with the regulatory structures and business models that can work for all,” he said, “not just for the 30-year-old.”
But the risk-averse financial industry is hesitant to act — partly out of fear of getting sued by clients.
2018’s Senior Safe Act , the most recent major federal legislation to address elder wealth management, attempts to address this reticence. It gives immunity to financial institutions in civil and administrative proceedings stemming from employees reporting possible exploitation of a senior — provided the bank or investment firm has trained its staff to identify exploitative activity.
It’s a lackluster law, said Naomi Karp, an expert on aging and elder finances who spent eight years as a senior analyst at the Consumer Financial Protection Bureau’s Office for Older Americans. That’s because the act makes training staff optional, and it lacks government oversight. “There’s no federal agency that’s charged with covering it or setting standards for what that training has to look like,” Karp said. “There’s nothing in the statute about that.”
One corner of the financial industry that has made modest progress is the brokerage sector, which concerns the buying and selling of securities, such as stocks and bonds. Since 2018, the Financial Industry Regulatory Authority — a nongovernmental organization that writes and enforces rules for brokerage firms — has required agents to make a reasonable effort to get clients to name a “trusted contact.”
A trusted contact is similar to the emergency contact health care providers request. They’re notified by a financial institution of concerning activity on a client’s account, then receive a basic explanation of the situation. Ron Long, a former head of Aging Client Services at Wells Fargo, gave the hypothetical of someone whose banking activity suddenly shows regular, unusual transfers to someone in Belarus. A trusted emergency contact could then be notified of that concerning activity.
But the trusted contact has no authority. The hope is that, once notified, the named relative or friend will talk to the account holder and prevent further harm. It’s a start, but a small one. The low-stakes effort is limited to the brokerage side of operations at Wells Fargo and most other large institutions. The same protection is not extended to clients’ credit card, checking, or savings accounts.
Financial Industry Reluctant to Help
When she was at the Consumer Financial Protection Bureau, Karp and her colleagues put out a set of recommendations for companies to better protect the wealth of seniors. The 2016 report included proposals on employee training and changes to fraud detection systems to better detect warning signs, such as atypical ATM use and the addition of a new owner’s name to an existing checking account. “We would have meetings repeatedly with some of the largest banks, and they gave a lot of lip service to these issues,” Karp said. “Change is very, very slow.”
Karp has seen some smaller community banks and credit unions take proactive steps to protect older customers — such as instituting comprehensive staff training and improvements to fraud detection software. But there’s a hesitancy throughout the industry to act more decisively, which seems to stem in part from fears about liability, she said. Banks are concerned they might get sued — or at least lose business — if they intervene when no financial abuse has occurred, or a customer’s transactions were benign.
Policy solutions that address financial vulnerability also present logistical challenges. Expanding something as straightforward as use of trusted contacts isn’t like flipping a light switch, said Long, the former Wells Fargo executive: “You have to solve all the technology issues: Where do you house it? How do you house it? How do you engage the customer to even consider it?”
Still, a trusted contact might have alerted Reynolds much sooner that her mom was developing dementia and needed help.
“I fully believe that they noticed signs,” Reynolds said of her mother’s bank. “There are many withdrawals that came out of her account where we can’t account for the money. … Like, I can see the withdrawals. I can see the bills not getting paid. So where did the money go?”
Sarah Boden (@Sarah_Boden) is a WESA reporter.
#dementia
Judith Graham: How to make life easier for those with dementia and their caregivers
Alois Alzheimer's patient Auguste Deter in 1902. Hers was the first described case of what became known as Alzheimer's disease.
Imagine your doctor telling you have Alzheimer’s disease or some other type of dementia. Then, imagine being told, “I’m sorry, there’s nothing we can do. You might want to start getting your affairs in order.”
Time and again, people newly diagnosed with these conditions describe feeling subsequently overcome by hopelessness.
In their new book, Better Living With Dementia, Laura Gitlin and Nancy Hodgson — two of the nation’s leading experts on care for people with cognitive impairment — argue forcefully that it’s time for this “cycle of despair” to be broken.
“There is no cure for Alzheimer’s but there are many things that can be done to make life better for people with dementia and their caregivers,” said Gitlin, dean of the College of Nursing and Health Professions at Drexel University and chair of the Department of Health and Human Services advisory council on Alzheimer’s Research, Care and Human Services.
At a minimum, Gitlin and Hodgson suggest pointing people newly diagnosed with dementia to the Alzheimer’s Association, the Lewy Body Dementia Association, the Association for Frontotemporal Degeneration and the government’s website, alzheimers.gov — all valuable sources of information and potential assistance.
Also, individuals and families should obtain referrals to elder law attorneys, financial planners, adult day centers, respite services and caregiver support services, among other resources. But none of this happens routinely. Instead, “people are not given access to the resources they need to plan for the future,” said Hodgson, the Anthony Buividas endowed term chair in gerontology at the University of Pennsylvania. “They’re left on their own to find out even basic information.”
Most people with Alzheimer’s and other types of dementia live at home — an estimated 70 percent. But few professionals inquire about patients’ living conditions, even though these environments play a major role in shaping people’s safety and well-being. (The remainder live in nursing homes or assisted living residences.)
More often than not, professionals don’t help families anticipate what to expect as dementia progresses. Left to their own devices, individuals with dementia and their caregivers “tend to move inwards and away from their communities, which fosters isolation, which worsens their sense of despair,” Hodgson said.
Even small steps could help improve quality of life. In their book and subsequent phone conversations, Gitlin and Hodgson highlighted several strategies:
Attend to the home. As people with dementia become more impaired, attention to their home environment needs to become a priority.
In one study cited in Gitlin and Hodgson’s book, safety issues — cleaning agents under the sink, knives and other sharp objects, guns and ovens that can be turned on and left running, for instance — were discovered in 90 percent of homes where people with dementia lived. Another study found an average of eight hazards in these residences.
What can be done: Hire an occupational therapist, ideally with expertise in dementia, to do a home assessment and recommend modifications.
Common suggestions: Reduce clutter, which can contribute to disorientation. Install handrails along staircases and grab bars and shower seats in bathrooms to reduce the risk of falls. Put up visual cues that identify where common objects are stored — underwear and socks, for instance, or coffee mugs. Make sure lighting is adequate. Remove knobs from stoves and remove other potentially dangerous electronic devices.
“What you want to know is can a person with dementia find their way easily in the home? Are there sufficient cues? Is the environment too stimulating — is there too much noise from a television that’s left on during the day, for example — or not stimulating enough?” Gitlin said.
Create a routine. People with dementia need predictability and well-structured routines that minimize uncertainty and help them get through the day.
“A routine helps people with dementia know what to expect,” Hodgson said. “That lowers their anxiety and stress and makes it easier for them to negotiate their environments. If change is introduced regularly, they’re just not going to do as well.”
What can be done: Time activities through the day to match an individual’s physical and psychological rhythms.
Common suggestions: Most people are sharper, cognitively, in the morning, so that’s a good time to look through photo albums, do puzzles, reminisce about the past, play simple word games or go off to adult day care, Hodgson said.
After lunch, people may need to rest, but they shouldn’t nap too long. “You want to have some physical activity in the afternoon, as more and more research is showing the importance of exercise for people with dementia,” Hodgson noted.
Around sunset, it’s time for relaxation and helping people settle down. Playing music or lighting a scented candle can set the mood. Good sleep hygiene — no caffeine at the end of the day, darkness, quiet and comfortable temperatures in the bedroom — is recommended at night, as sleep problems are common in people with dementia.
An occupational therapist, who can evaluate the skills of people with dementia, can suggest appropriate activities. “You’ll need to learn how to understand if someone can initiate an activity on their own or follow a sequence needed for the activity,” Gitlin said. “If not, and this is common later on, you’ll have to learn how to set up the activity and cue the person.”
Know what to expect. Individuals with dementia and their caregivers will find their needs changing as their illness progresses.
What can be done: During every significant transition, reassess needs and how you’re going to get them met — with the help of an experienced social worker or care manager, if possible. “Who are the people who can help you? What resources are available? What alterations need to be made in the home and care arrangements? You’ll need a new plan of action,” Hodgson said.
At first, the most significant need may be obtaining a reliable diagnosis and learning more about the type of dementia your physician has identified. According to a new study by researchers at Johns Hopkins University, nearly 60 percent of people with dementia have not been diagnosed or are not aware of their diagnosis.
Gitlin and Hodgson recommend that people with dementia be involved in learning about treatment options and planning for their care, to the extent possible. “Talking over people or ignoring them or telling them what should happen, without soliciting their participation, is attack on personhood,” Gitlin said.
Depression and anxiety may need to be addressed, as people struggle with the reality of a diagnosis, withdraw from work or social activities and worry about the future. Finding ways to keep people engaged with meaningful activities starts to become a challenge.
When individuals progress to moderate dementia, they may need more supervision and assistance with dressing, bathing, grooming and taking medications. This is when families often hire caregivers, if they can afford it. Communication may become compromised and problematic behaviors such as wandering, agitation or aggression may emerge.
Often, someone with dementia is unable to express her needs and resorts to difficult behaviors. A person may be bored, afraid, in pain, constipated, overwhelmed or distressed, for example. To cope, caregivers are urged to try to understand the triggers for troublesome behaviors and take steps to address them.
Interactive Web-based systems that offer expert assistance to caregivers may become available going forward. Gitlin and colleagues at the University of Michigan and Johns Hopkins University have developed a comprehensive program, WeCareAdvisor, that is being tested. Another website featuring the DICE Approach is expected to debut in three months and include interactive training videos.
In the final stage, severe dementia, people need sensory stimulation — a foot massage, music they enjoy, a fragrant bouquet of flowers. Addressing distress, discomfort and pain are key care challenges. Even if the person with dementia can’t acknowledge it, the presence of family and friends remains important. Throughout every stage of this illness, “it’s important to let people with dementia know that they belong and surround them with a feeling of warmth and affection,” Hodgson said.
Judith Graham: @judith_graham