caregiving

Research

Retirees’ Need for Caregivers Varies Widely

Nothing causes dread in a retiree quite like the prospect of having to go into a nursing home someday or becoming dependent on someone who comes into the house to help with routine daily needs.

But media reports or studies with alarming predictions of infirmity in old age are not very useful to retirees or their family members. A new study provides a more nuanced picture of the various scenarios that can play out.

home care tableResearchers at the Center for Retirement Research estimated that roughly one in five 65-year-olds will die without using any care, and another one in five will need only minimal care.

But one in four will have such severe needs that they will require high intensity support for three years or more. The largest group of people – 38 percent – will fall somewhere in the middle: they are likely to need a moderate amount of care for one to three years. A strong indicator of how much assistance someone will require is whether they are healthy in their late 60s.

To determine future need, the researchers combined two dimensions of care: intensity and duration. The intensity of care varies widely. Many retirees can remain largely independent if they hire someone for a couple days a month to clean house or manage their finances, while others will need round-the-clock support.

The duration of care also varies. The researchers divided duration into three categories: less than a year, one to three years, and more than three years. Many retirees need assistance for only a few days or weeks after being released from the hospital. But others, including people who develop severe disabling conditions such as dementia, may need years of care.

The researchers used 20 years of biennial surveys of older Americans and data on caregivers to predict the share of 65-year-olds who will have minimal, moderate, or severe lifetime needs.Learn More

Helping hands

Field Work

An Appreciation of Professional Caregivers

My 85-year-old mother had been up a few times during a night in early June and still wasn’t feeling well in the morning. I called her doctor, who sent a prescription to her pharmacy, and went about my day’s work. But when I checked in that afternoon, mom was in a full-blown medical crisis that she and her 92-year-old male companion did not think was bad enough to tell me about.

I asked her companion to call the EMTs, who immediately dispatched mom to an emergency room a few miles from her Orlando retirement community. These events marked the start of my maiden voyage as my mother’s caregiver from 1,300 miles away in Boston. It was a high-stress affair that challenged all my organizational skills and stamina – an experience I am, no doubt, destined to repeat.

I’ve heard about the stresses of caring for an elderly parent but had only a vague sense of what that would be like. Nearly a week was consumed with keeping tabs on mom’s medical care at the hospital and what she needed, tracking down busy nurses and doctors – in a pandemic! – for updates on her condition (pneumonia) and treatment. Finally, upon mom’s hospital release on a Sunday, I wanted to make sure nothing else would go wrong at home.

The clouds started to lift when I hired three professional caregivers – Rachel, Nadine, and Rosa – to keep an eye on my mother for the first 24 hours at home. I developed a great appreciation for their kindness and efficiency and the unique talents each one brought to the job.

The hiring process wasn’t seamless, however, due to the COVID. My mother and her partner are fully vaccinated. But Florida has a much lower vaccination rate – 62 percent of adults have at least one dose, compared with 81 percent in Massachusetts – and I quickly learned that 35-year-old Rachel, the first caregiver assigned to mom, was among the unvaccinated.

I was about to cancel the contract with the company employing the caregivers when they offered to give Rachel a rapid COVID test. That worked for me. Having made my intentions crystal clear, the company texted me Nadine’s and Rosa’s vaccine cards for the later shifts. …Learn More

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

Money Culture

2.2 million Workers Left Out of Medicaid

The Affordable Care Act gives a carrot to states that expand Medicaid from a health insurance program mainly for poor people to one that also includes low-income workers.

Under the 2010 law, the federal government initially paid the full cost of adding more people to the Medicaid rolls, and a large majority of states have signed up. The federal funding for new expansions dropped a bit in 2020 to 90 percent and will remain there.

Yet 11 states are holdouts and haven’t expanded their programs, leaving nearly 2.2 million workers and family caregivers in what the Center for Budget and Policy Priorities calls the Medicaid coverage gap.

Medicaid Map

The workers falling in the gap, who would qualify for coverage if their states expanded Medicaid, do not have health insurance at their places of employment and can’t afford to buy subsidized insurance through the Affordable Care Act.

The bulk of the uncovered workers are in the South, with half in Texas and Florida. Missouri had been a holdout. But last week, the Missouri Supreme Court ordered the legislature to comply with a voter ballot initiative and fund expansion of the state’s Medicaid. Expansion was also controversial in Oklahoma, but it went into effect on July 1 after voters there approved the measure.

An analysis by the Center sketched a picture of who is in the gap, based on 2019 Medicaid data, the most recent available. People of color comprised about 40 percent of the working-age population but made up 60 percent of the people in the gap in the non-expansion states, the Center estimates.

Nationwide, one in four who lack access to Medicaid are lower-paid essential workers on the front lines during the pandemic. …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