Managing money is a challenge for families affected by dementia. A British debit card company set out to make financial independence safer for this growing segment of the population.
Jayne Sibley’s mother started spending money in unusual ways. She’d buy groceries when she had a fridge full of food. She’d take out cash and lose it or give it away. She’d fall victim to phone scams.
“That money was disappearing in ways it wouldn’t have had she not had dementia,” Sibley said.
Eventually, Sibley and her brother felt they needed to take away their mom’s debit card — a blow to her independence.
Sibley’s family’s experience led Jayne Sibley to launch Sibstar, a debit card system established in the United Kingdom in 2020 that aims to make it easier for families to handle money management challenges related to dementia.
Mismanagement of personal finances is a common experience for people living with dementia, which can have devastating consequences. While some tools and strategies can help families address the financial stress, experts say the issue requires more attention and vigilance.
Money management and dementia
Issues handling finances can emerge very early when someone is living with dementia. Dr. Lauren Nicholas, a health economist at the University of Colorado School of Public Health found in her research that people had adverse financial events, such as missing bill payments, years before a diagnosis.
“What’s tricky is that a lot of the mental capabilities that you lose first are those that have implications for financial well-being,” said Nicholas told Being Patient.
She noted that dementia’s symptoms including memory loss and changing risk perception can lead to significant financial problems. Many people forget or fall behind bill payments, she said. Some make duplicate purchases or donations. They might buy unnecessary things or mislay cash. Adults over 65 are also often the targets of financial scams by phone — and the problem is global. As of 2019, research in the U.S., for example, showed that a minimum of $3 billion each year is illegally obtained from older adults, according to the U.S. Department of Justice, while some sources suggest the number is closer to $36 billion.
“There’s just so many ways you can lose money out there,” Nicholas said. “I think dementia sort of increases the risk of all of them.”
Despite the concerns, she said that many people who are living with dementia are reluctant to give up control over finances.
“It’s also very difficult to give up these roles that you’ve maintained for a long time of your life,” she said. “So it’s a very tricky situation to negotiate.”
The importance of independence
There can also be a steep personal cost when family members make the decision to intervene and restrict a person’s control over their personal finances. Sibley said that when she and her brother decided to limit her mother’s control over her own bank account, her world shrank. Without financial independence, her mother would no longer go to the local shop, a regular excursion that would also be a chance to socialize with neighbors.
“It’s really important for people living with dementia to retain their familiar routines, their connection with their communities,” Sibley said. “And money is a key enabler of that.”
Sibley said her family struggled to find a good solution for her mother, experimenting with things like a prepaid debit card. But they failed to find a service that could adequately protect her money and her independence. So, Sibley, a marketing professional with no experience in banking, decided to give it a go herself. She developed an idea for a debit card connected to an app where a care partner can keep an eye on spending. Her idea got support through the Alzheimer Society’s accelerator program, and, in partnership with Mastercard, debuted in the UK in May.
For a person living with dementia, a Sibstar card functions like a normal debit card. But, through an app that can be managed by a care partner, guardrails can be set up to prevent common financial missteps.
Users can set daily or monthly spending limits. They can also set parameters for how the card can be used, for example restricting how much cash can be taken out at any one time. Certain types of transactions can be turned off; if someone tends to be susceptible to make charges over the phone or internet, those types of payments can be turned off.
Sibley said that the card was designed to be easily adjustable as users’ financial behaviors change over time. The settings on the app take effect immediately, so a family member can adjust settings to reflect the needs of the user living with dementia.
If a user hits their spending limit while out at a shop, the card will be declined, explained Sibley. However, the care partner will immediately get a notification with details of the transaction, enabling them to call and check in, or top up the card so the purchase can go through.
For now, the card is developed for use by families. But Sibley said that the company might consider ways the model could work with other partners, like an attorney or social worker.
Systemic change for a more dementia-inclusive society
A report published in October by the International Longevity Centre found that nearly one in four people with dementia give up shopping after a dementia diagnosis. At the same time, the report indicates, more than 60 percent of people with dementia believe shops aren’t doing enough to help people with this condition. The International Longevity Centre suggested some systemic initiatives that could make it safer for people living with dementia in the UK to continue to shop, like creating a system to accredit retailers who commit to providing a certain supports — such as better dementia-awareness training of staff.
Nicholas said that currently, many of the best strategies to try to protect the finances of people living with dementia involve giving primary financial control — or at least some type of surveillance — to a family member or another person, like a lawyer.
It’s important to make sure that family members of people living with dementia are vigilant to the potential financial risks. Family members or caregivers can set up duplicate copies of statements, and check the mail for envelopes in order to keep an eye on finances.
However, Nicholas said there are limits to the strategies. They rely on having a trustworthy family member or caregiver overseeing the accounts — notable because perpetrators of financial fraud against older people are often relatives.
Nicholas said that she often hears from people who have personal experience with a family member living with dementia who had significant issues related to their finances. She said that there is a need for better financial protection for people living with dementia.
“This is one of the few areas where we do have tools that could improve quality of life,” she said —”or at least prevent some of these catastrophic events from happening.”
Elizabeth Hewitt is an American journalist based in the Netherlands, reporting on aging, nature and culture. @emhew.