Research

UI Benefits Can Get Caregivers Back to Work

Elderly coupleWhen older workers are laid off, the timing of the career disruption could not be worse – when they should keep working and saving for retirement. Their situation is even more precarious if a parent or spouse is in need of care.

A new study shows that people who become unemployed mid-to-late career are more vulnerable to being pulled into the demands of caregiving, which can derail their efforts to find another job.

Intensive caregiving spells usually kick in about four months after a job loss and can continue for up to 12 months – and possibly longer – according to the research, which was based on U.S. Census surveys of the unemployed prior to the pandemic.

“Family caregiving needs have the potential to turn short-term employment shocks into longer-run decreases in labor force participation, impacting the economic security” of future retirees, concluded Yulya Truskinovsky at Wayne State University.

But she also uncovered another factor in workers’ calculations: the generosity of unemployment benefits, which vary dramatically from state to state. The federal and state governments share the cost of the benefits, but states set the minimum and maximum benefit levels. During the pandemic, for example, the weekly maximum in Massachusetts was 3 1/2 times more than Mississippi’s, far exceeding the difference in the two states’ cost of living.

More generous unemployment benefits could cut one of two ways. They might give the worker enough income to support being a caregiver rather than returning to the labor force right away. The downside of taking so much time off is that it could be harder to eventually find a new job.

But the researcher finds that the opposite occurs: more generous benefits sharply reduce the likelihood that someone takes on caregiving duties after losing a job. Benefits that replace more of a worker’s earnings may make it easier to hire a professional caregiver or continue paying an existing one so the worker can focus on a job search. …Learn More

Elderly lady looking out the window

Research

Caregivers Lament Elderly’s COVID Isolation

The magnitude of the tragedy is unfathomable: Americans have lost nearly 187,000 family members living in nursing homes to COVID-19.

Even when residents survive outbreaks in the facilities, their family caregivers experience trauma. Barred from visiting residents during the lockdowns, caregivers observed – on Zoom, over the phone, or from the other side of a nursing home window – loved ones suffering from the devastating impact of isolation.

“To think in her final year[s] when she is most vulnerable and most in need of love and support from her children and was denied this for 6 months is in my opinion devastating,” one caregiver said in a survey of 518 caregivers, the vast majority of them women and mainly daughters.

Granted, nursing homes – and the entire country – were not prepared for a once-in-a-century pandemic that has been difficult to control, given that COVID-19 is often asymptomatic. The lockdowns were a health precaution. Many nursing homes were also put in an untenable position when COVID-19 created staff shortages as nursing assistants and other workers took time off after contracting the disease or simply quit their jobs. And perhaps better communication between nursing home staff and family members would have eased some of the concerns.

Nevertheless, the caregivers’ perceptions of what unfolded inside nursing homes are alarming. “Anger,” “helplessness” and “heartbreak” were common reactions, conveyed in the survey compiled in the Journal of Aging & Social Policy.

The situation became so untenable for 30 of the caregivers surveyed that they pulled their parent or family member out of a facility and brought them home to live with them.

Four themes pervaded their descriptions of what their loved ones were going through: social isolation, cognitive and emotional decline, inhumane care, and a lack of oversight at the long-term care facilities.

The source of many caregivers’ concerns were nursing homes’ decisions to confine residents to their rooms to prevent contagion. But one caregiver said that while her mother’s facility went to great lengths to keep her healthy, the staff did little to ease her isolation: “Almost no effort has been made to ensure [her] mental health due to the isolation. Staff rarely stay and visit with Mom, no special in-room activities or stimulation has been attempted.” …Learn More

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

Field Work

Get Help with Medicare Coverage Denials

The United States has a notoriously complex healthcare system, and Medicare is no different.

In the early months of the pandemic, the Medicare Rights Center received a large number of calls to its telephone help line from people over 65 who had suddenly been laid off and lost their employer coverage. Even when there isn’t a crisis, the center’s staff and volunteers answer all manner of questions about Medicare enrollment rules, insurance options, and what to do when an insurance company denies them coverage.

Sarah Murdoch is the center’s director of client services and oversees the helpline. She spoke with Squared Away about the common issues retirees face and how they can address them.

Question: Your helpline fielded 42,000 questions about Medicare in 2020 and 2021. How does that compare to past years?

It’s in that ballpark year to year – around 20,000 questions. But we saw, within that 42,000, a shift in the actual trends.

Throughout the pandemic, particularly in 2020 when there were lockdowns and people were getting laid off left and right, we got a lot of calls from people who unexpectedly had no income. We heard from people who had insurance through their job and that was not an option anymore. Or they were already on Medicare and were trying to figure out how to pay their costs, or they were laid off and had to figure out how to get into Medicare. That has eased up but was a big thing we saw in the beginning of the pandemic.

We also had questions related to benefits for low-income people. We told people who suddenly had zero income about the income requirements for the Medicare Savings Program, Medicaid, and the state pharmaceutical assistance programs – anything that can lessen the hardship.

In 2020 and 2021, nearly a third of the complaints on your helpline were about service denials by insurers that provide Medicare Advantage or Part D drug plans. Start with Advantage plan denials – are they a big issue for retirees?

The Medicare Advantage plans often have doctor and hospital networks, whereas original Medicare doesn’t have networks. People may be denied coverage by an Advantage plan if they have an out-of-network provider. It could also be a denial of a medical service or a prescription medication. We do see it more but it’s hard to tease that out from the fact that more people are just enrolled in Medicare Advantage.

Do Medigap supplements to Medicare have similar issues with denial of coverage?

Medigap is different – the plans are never making their own claim determinations. If something is approved by original Medicare, then Medigap is going to pay for it as long as the retiree has a Medigap plan that has that type of coverage. In the Medicare Advantage policies, however, insurers are making the claims determination. All of the insurance companies have their own claims adjusters making those decisions – as opposed to contractors who process claims for the Medigap plans on behalf of the Centers for Medicare and Medicaid Services. The Medigap insurer isn’t making any decisions as to whether something is covered or not – it has already happened at the government level. …Learn More

Field Work

Every Caregiver’s Challenge is Unique

Caregivers for loved ones with dementia experience their duties in ways that are unique to the individuals they’re caring for.

Some wrestle with the behavioral issues of the people in their care, while others must balance caregiving and work or struggle to navigate the Medicaid system, line up day care, or track down a reliable in-home professional.

“There is no one way to care for a loved one who has dementia,” says Amy Goyer, caregiver and author of “Juggling Life, Work and Caregiving.”

Goyer feels that every caregiver’s perspective could be useful to someone else going through the same thing. She recently hosted a webinar that opened a window on the lives of three Pennsylvania caregivers – one for a father, one for a husband, and one for a partner’s mother.

The three women had a couple things in common, including the stress of shouldering the burden and the strain on their finances of paying for the all-day care that family members required, especially in the later stages of dementia.

But the similarities ended there. To understand the variety and depth of each person’s experience, there is no substitute for hearing directly from them in this webinar, which was sponsored by AARP, the Alzheimer’s Association, and the Pennsylvania Association of Area Agencies on Aging.

Here are snippets of their stories:

Robin Madison and her son, Morgan Madison

Robin Madison and her son, Morgan Madison.

Robin Madison’s husband had Lewy body dementia, and Madison had four jobs: wife, mother, breadwinner, and caregiver. Her husband was 18 years older, and she was fully aware that she might one day have to take care of him. On the good days, he could be entertained by playing music on his tablet or watching television for hours. But he was often ill-tempered and difficult to manage.

Madison described her seven years of caregiving as a “battle” – a battle to get a diagnosis, to work at home while her husband roamed the house, and to secure consistent end-of-life caregivers for her husband, who died last year.

In the final months of his life, he was receiving in-home hospice, which proposed sending him to a facility close to home – for $10,000 a month. Should Madison pay that bill or pay for college for her son, Morgan? “I had to choose my son and his future,” she said. The pair shared caregiving duties.

Madison stressed that it was important to get something positive out of a very difficult time. Her son decided they should donate his father’s brain to science “to help somebody else,” she said. Madison is grateful to have emerged from the experience with a stronger bond with her son. “All we had was each other,” she said. Turns out that was a lot to have.

Diane Powell’s family could not afford professional care for her mother and father either. But one of the hardest things for Powell and her sister, who shared caregiving duties, came early in their father’s dementia, when they were “trying to figure out what is wrong.” Something was clearly amiss when her father, who owned a trucking company, would get lost on the road and couldn’t remember how to get home. A family member would figure out where he was and drive there to guide him home. …Learn More