A drawing of a hand holding a heart

Field Work

States Give Financial Help to Caregivers

On Jan. 1, Arizona residents caring for elderly or disabled family members became eligible for up to a $1,000 reimbursement from the state for expenses incurred in their caregiving responsibilities.

This is a trial program and the legislature allocated very little money – $1 million over two years – in a state with an estimated 800,000 residents caring for a disabled adult over 18.

But it’s a start.

Caregivers “aren’t asking for everything. They’re asking for a little bit to make their lives better,” said Elaine Ryan, vice president of government affairs for AARP, which has been on the forefront of advocating for such policies at the state level. “That’s the least we can do.”

Arizona’s program would defray a portion of caregivers’ spending. For older family members, this would cover technologies to aid older family members, such as hearing aids or computer programs, or shower grab bars and wheelchair ramps.

Graphic of caregiver expenses

Like Arizona, state governments around the country, as laboratories for policy experimentation, have passed a hodgepodge of programs to support caregivers. Other bills approved in recent years range from New Jersey’s tax credit for military families caring for wounded veterans to Oregon’s paid family leave program for workers taking care of aging spouses, parents and grandparents.

The programs are a tacit acknowledgment of the enormous financial strain caregivers face – a strain that is only expected to grow and, increasingly, to affect Millennials as their baby boomer parents age.

However, it’s not easy to pass bills that require states to approve financial assistance or tax credits, because the work done quietly by family caregivers is often invisible and under-appreciated by the general public and federal and state legislators. …Learn More

money tree

Behavior

Can Caregivers Help Seniors with Money?

When once-simple financial tasks become difficult or confusing, it can be the canary in the coal mine signaling that an elderly person is developing dementia.

Financial problems will soon follow once people with cognitive impairment start miscalculating and missing payments, forgetting and misplacing accounts, or falling victim to fraud.

But some good news has come out of a new study of Medicare recipients: the vast majority of the 5.5 million people over 65 with established dementia – usually, though not, always Alzheimer’s disease – are receiving help from family and other caregivers with balancing their checkbooks, depositing and withdrawing money, and conducting transactions.

Even better, they are actually benefitting from it. The seniors who receive assistance are more likely to be able to pay for their essential expenses like rent, food, prescriptions and utilities, according to researchers at the Center for Retirement Research, which also sponsors this blog.

There was bad news in the report too: a nontrivial share of the older Americans with established dementia – that is, dementia for at least three years – aren’t getting any help. This problem is expected to grow in future generations. One major reason is longer and longer life spans, which exponentially increase the risk of dementia. Nearly one in three people over 85 are in some stage of dementia. Compounding this is the fact that today’s older workers have fewer children and have divorced more, which shrank the pool of who would be willing to pitch in and help them.

Having a caregiver helping with money management wouldn’t necessarily make an elderly person better off financially. Suppose a daughter is unfamiliar with her mother’s finances or a husband isn’t good at managing his own money. In extreme cases, caregivers sometimes steal from the trusting seniors in their care. Even so, it turns out that it’s better to receive help than not. …Learn More

Field Work

Films about Dementia Help Us Understand it

“Supernova” does not have a happy ending. But that’s how stories about Alzheimer’s go, and the film, which recently began streaming, is worth watching.

It’s one of those occasional movies that come along and portray the emotional aspects of this disease with nuance. The films, by using big-name stars like Stanley Tucci and Colin Firth in “Supernova,” lift some of the stigma around dementia that can isolate its victims and their caregivers.

Dementiais still very much a taboo topic,” said Bobbi Matchar, who, as director of the Duke Dementia Family Support Program, facilitates group discussions for people with dementia and their families. “Having movies that more accurately portray the face of dementia is really helpful.”

The newest of these films, “The Father,” is in contention for an Oscar on Sunday, as is its star, Anthony Hopkins.

Julianne Moore also won an Oscar for the lead in the 2014 film, “Still Alice” about a spirited college professor coming to terms with a failing memory. The most powerful scenes are her first realizations – forgetting a class lecture or not recognizing the center of campus, where her jog has taken her. Her denial ends when she admits to her husband (played by Alec Baldwin), “I’ve got something wrong with me.”

In “Away from Her,” Julie Christie is an older woman with Alzheimer’s who wanders the woods near her home on Lake Ontario. For her safety, she and her husband (played by Gordon Pinsent) agree she will move into a nursing home. This movie is about the disintegration of a loving marriage when one partner’s memories fade and then go dark, forcing her husband to grieve while she is still alive.

“Supernova” examines the implications of Alzheimer’s for two men who remain partners until the bitter end. On a road trip, they struggle to communicate about what Tusker’s dementia means for each of them.

Tusker (Tucci’s character) is a writer. His partner, Sam (Firth), becomes angry after discovering Tusker is hiding the extent of his dementia – he finds indecipherable scribbles in a notebook – so as not to burden Sam. …Learn More

Research

Diverse Population Uses Nursing Homes Less

Son with father in wheel chair

Since the 1980s, the share of the U.S. population over 65 has grown steadily. At the same time, the share of low-income older people living in nursing homes has declined sharply.

New research by the University of Wisconsin’s Mary Hamman finds that this trend is, to some extent, being driven by an increasingly diverse population of Hispanic, Black, Asian, and Native Americans. They are more likely to live with an adult child or other caregiver than non-Hispanic whites, due, in some cases, to cultural preferences for multigenerational households.

Nursing home residence is also declining among older white Americans. However, in contrast to the Black population, whites are increasingly moving into assisted living facilities. This creates what Hamman calls a “potentially troubling pattern” of differences in living arrangements that might reflect disparities in access to assisted living care or perhaps discriminatory practices. Notably, the researcher finds that the Black-white gap in assisted living use persists even when she limits her analysis to higher-income adults.

Eight states have seen the biggest drops in nursing home use: Florida, Georgia, Louisiana, New Jersey, New Mexico, North Carolina, South Carolina, and Tennessee. Many of these states have experienced fast growth in their minority populations or have more generous state allocations of Medicaid funds for long-term care services delivered in the home.

Growing diversity is actually the second-biggest reason for lower nursing home residence, accounting for one-fifth of the decline, according to the study, which was funded by the U.S. Social Security Administration and is based on U.S. Census data.

As one might expect, the lion’s share of the decline – about two-thirds – is due to policy, specifically changes to Medicaid designed to encourage the home care that surveys show the elderly usually prefer. …Learn More

Research

Caring for a Parent Can Take Financial Toll

Parent and adult child with masks

Last spring, as COVID-19 tore through the nation’s nursing homes, many people agonized over whether to pull their elderly parents out and assume responsibility for the care.

The fall surge in the virus is no doubt causing more handwringing as adult children again weigh the challenges of home care against concerns about their parents’ physical and mental well-being.

One practical consideration is the impact on the work lives of parental caregivers, who are overwhelmingly women. Recent research has found that “there are long-term costs associated with caregiving reflected in [lower] earnings even long after caregiving has taken place.”

The research involved women in their 50s and 60s with at least one living parent or in-law, though they generally provided care to a parent rather than an in-law.

Workers sometimes downshift their careers in the years prior to retiring, but caregiving can affect whether older women work at all, the researchers found. Among the caregivers they followed, the share who were working fell by nearly 2 percentage points, to about 56 percent, after their duties began. And the caregivers who remained employed worked fewer hours after taking on a parent’s care.

Women also earned less over the long-term if they had spent time as a caregiver. They saw about a 15 percent decline in their earnings by the age of 65 – or nearly $1,800 per year, on average – according to an update of a study initially funded by the Social Security Administration with subsequent funding from the Sloan Foundation. …Learn More

Beware of scam

Field Work

Cognitive Decline Meets COVID-19 Scams

The federal government warns that older Americans are being targeted by a battery of financial scams, including telemarketers offering to do contact tracing – for a fee – or to reserve a slot for a future vaccine. Others are soliciting donations to charities purportedly helping people in need during the economic slowdown.

COVID-19 makes this a perilous time for people struggling with cognitive decline.

Few can escape a deterioration in their cognitive capacity as they age. It’s just a matter of degree and speed. But the faster it happens, the more damage it can do, the FINRA Investor Education Foundation concluded in a new study.

The study was based on surveys of more than 1,000 older residents in Chicago retirement communities and subsidized housing – average age, 80. The same people were periodically asked questions with varying degrees of difficulty about their general financial knowledge and investments and were asked to compare and calculate percentages.

The older people who either initially had less understanding of financial concepts or experienced a faster decline in their knowledge made poorer financial decisions in exercises that simulated real-world decisions.

This included a vulnerability to scams, which was assessed by asking the older people to agree or disagree with statements like this: “If a telemarketer calls me, I usually listen to what they have to say.” (Not recommended.) And this: “If something sounds too good to be true, it usually is” (Count on it.)

To prevent scams, older people – and their caregivers – need to anticipate the financial damage that cognitive decline can cause. …Learn More

Field Work

Caregiving Disrupts Work, Finances

What do groceries, GPS trackers, and prescription drug copayments have in common?

They are some of the myriad items caregivers may end up paying for to help out an ailing parent or other family member. And these are just the incidentals.

Graph of what caregivers gave upThree out of four caregivers have made changes to their jobs as a result of their caregiving responsibilities, whether going to flex time, working part-time, quitting altogether, or retiring early, according to a Transamerica Institute survey. To ease the financial toll, some caregivers dip into retirement savings or stop their 401(k) contributions. Not surprisingly, caregiving places the most strain on low-income families.

People choose to be caregivers because they feel it’s critically important to help a loved one, said Catherine Collinson, chief executive of the Transamerica Institute.

But, “There’s a cost associated with that and often people don’t think about it,” she said. “Caregiving is not only a huge commitment of time. It can also be a financial risk to the caregiver.”

The big message from Collinson and the other speakers at an MIT symposium last month was: employers and politicians need to acknowledge caregivers’ challenges and start finding effective ways to address them.

Liz O’Donnell

Liz O’Donnell was the poster child for disrupted work. As her family’s sole breadwinner, she cobbled together vacation days to care for her mother and father after they were diagnosed with terminal illnesses – ovarian cancer and Alzheimer’s disease – on the same day, July 1, 2014.

Her high-level job gave her the flexibility to work outside the office. But work suffered as she ran from place to place dealing with one urgent medical issue after another. She made business calls from the garden at a hospice, worked while she was at the hospital, and learned to tilt the camera for video conferences so coworkers wouldn’t know she was in her car.

“I felt so alone that summer,” said O’Donnell, who wrote a book about her experience. “We’ve got to do better, and I know we can do better.” …Learn More

Photo of Francey Jesson and her mother

Behavior

For Family, Caregiving is a Choice

Francey Jesson’s life took a dramatic turn in 2014 when she lost her job at Santa Fe, New Mexico’s airport after a dispute with the city. In 2015, she relocated to Sarasota, Florida to be close to her family. One day, her mother, who has dementia, started crying over the telephone.

Jesson had always known she would be her mother’s caregiver, and that time had arrived. She and her brother combined resources and bought a house in Sarasota, and Jesson and her mother moved in.

“It wasn’t difficult to decide. What was difficult was everything that came with it,” she said.

One reason for the rocky adjustment was that Jesson, who is single, had been preparing herself mentally to take care of her mother’s physical needs in old age. But Kay Jesson, at 88, is in pretty good health. She requires full-time care because she has cerebral vascular dementia, the roots of which can be traced back to a stroke more than 15 years ago.

She is still able to function and has not lost her social skills. Her muscle memory is also intact, allowing her to chop onions while her daughter cooks dinner. But she forgets to turn off the water in the bathtub, mixes up her pills, can’t remember who her great-grandchildren are, and is unable to distinguish fresh food from rotting food in the refrigerator.

She’s also developed a childlike impatience and constantly interrupts her daughter, who works from home for her brother’s online company. “When she’s hungry, she’s hungry,” Francey Jesson said about her mother.

“Nothing ever stops for me. I can’t sit in a room and not be interrupted,” she said. “Sometimes I just want to watch TV for an hour.”

One way she copes is to approach caregiving with a combination of love and bemusement. She uses “therapeutic fibbing” to protect her mother’s feelings, for example, telling her that a friend who died has moved instead to Kansas so she doesn’t grieve over and over again.  Francey Jesson also resorts to humor in a blog she writes about her day-to-day experiences. In one article, “Debating with Dementia,” she recounted a conversation about the best way to repair some bathroom floor tile: …Learn More