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Seniors Aging in Place Turn to Devices and Helpers, But Unmet Needs are Common

By Judith Graham

About 25 million Americans who are aging in place rely on help from other people and devices such as canes, raised toilets or shower seats to perform essential daily activities, according to a new study documenting how older adults adapt to their changing physical abilities.

But a substantial number don’t get adequate assistance. Nearly 60 percent of seniors with seriously compromised mobility reported staying inside their homes or apartments instead of getting out of the house. Twenty-five percent said they often remained in bed. Of older adults who had significant difficulty putting on a shirt or pulling on undergarments or pants, 20 percent went without getting dressed. Of those who required assistance with toileting issues, 27.9 percent had an accident or soiled themselves.

The study, by researchers from Johns Hopkins University, focuses on how older adults respond to changes in physical function — a little-studied and poorly understood topic. It shows that about one-third of older adults who live in the community — nearly 13 million seniors — have a substantial need for assistance with daily activities such as bathing, eating, getting dressed, using the toilet, transferring in and out of bed or moving around their homes; about one-third have relatively few needs; and another third get along well on their own with no notable difficulty.

For older adults and their families, the report is a reminder of the need to plan ahead for changing capacities.

“The reality is that most of us, as we age, will require help at one point or another,” said Dr. Bruce Chernof, president of the SCAN Foundation and chair of the 2013 federal Commission on Long-Term Care. Citing Medicare’s failure to cover so-called long-term services and supports, which help seniors age in place, he said, “We need to lean in much harder if we want to help seniors thrive at home as long as possible.” (KHN’s coverage of aging and long-term care issues is supported in part by the SCAN Foundation.)

Previous reports have examined the need for paid or unpaid help in the older population and the extent to which those needs go unmet. Notably, in 2017, the same group of Johns Hopkins researchers found that 42 percent of older adults with probable dementia or difficulty performing daily activities didn’t get assistance from family, friends or paid caregivers — an eye-opening figure. Of seniors with at least three chronic conditions and high needs, 21 percent lacked any kind of assistance.

But personal care isn’t all that’s needed to help older adults remain at home when strength, flexibility, muscle coordination and other physical functions begin to deteriorate. Devices and home modifications can also help people adjust.

Until this new study, it hasn’t been clear how often older adults use “assistive devices”: canes, walkers, wheelchairs and scooters for people with difficulties walking; shower seats, tub seats and grab bars to help with bathing; button hooks, reachers, grabbers and specially designed clothes for people who have difficulty dressing; special utensils designed to make eating easier; and raised toilets or toilet seats, portable commodes and disposable pads or undergarments for individuals with toileting issues.

“What we haven’t known before is the extent of adjustments that older adults make to manage daily activities,” said Judith Kasper, a co-author of the study and professor at Johns Hopkins’ Bloomberg School of Public Health.

The data comes from a 2015 survey conducted by the National Health and Aging Trends Study, a leading source of information about functioning and disability among adults 65 and older. More than 7,000 seniors filled out surveys in their homes and results were extrapolated to 38.8 million older Americans who live in the community. (Those who live in nursing homes, assisted living centers, continuing care retirement communities and other institutions were excluded.)

Among key findings: Sixty percent of the seniors surveyed used at least one device, most commonly for bathing, toileting and moving around. (Twenty percent used two or more devices and 13 percent also received some kind of personal assistance.) Five percent had difficulty with daily tasks but didn’t have help and hadn’t made other adjustments yet. One percent received help only.

Needs multiplied as people grew older, with 63 percent of those 85 and older using multiple devices and getting personal assistance, compared with 23 percent of those between ages 65 and 74.

The problem, experts note, is that Medicare doesn’t pay for most of these non-medical services, with some exceptions. As a result, many seniors, especially those at or near the bottom of the income ladder, go without needed assistance, even when they’re enrolled in Medicaid. (Medicaid community-based services for low-income seniors vary by state and often fall short of actual needs.)

The precariousness of their lives is illustrated in a companion report on financial strain experienced by older adults who require long-term services and supports. Slightly more than 10 percent of seniors with high needs experienced at least one type of hardship, such as being unable to pay expenses like medical bills or prescriptions (5.9 percent), utilities (4.8 percent) or rent (3.4 percent), or skipping meals (1.8 percent). (Some people had multiple difficulties, reflected in these numbers.)

These kinds of adverse events put older adults’ health at risk, while contributing to avoidable hospitalizations and nursing home placements. Given a growing population of seniors who will need assistance, “I think there’s a need for Medicare to rethink how to better support beneficiaries,” said Amber Willink, co-author of both studies and an assistant scientist at Johns Hopkins’ Bloomberg School of Public Health.

That’s begun to happen, with the passage last year of the CHRONIC Care Act, which allows Medicare Advantage plans to offer supplemental benefits such as wheelchair ramps, bathroom grab bars, transportation and personal care to chronically ill members. But it’s unclear how robust these benefits will be going forward; this year, plans, which cover 21 million people, aren’t offering much. Meanwhile, 39 million people enrolled in traditional Medicare are left out altogether.

“We’ve had discussions with the [insurance] industry over the last couple of months to explore what’s going to happen and it’s a big question mark,” said Susan Reinhard, director of AARP Public Policy Institute, which publishes a scorecard on the adequacy of state long-term services and supports with several other organizations.

So far, she said, the response seems to be, “Let’s wait and see, and is this going to be affordable?”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

Patients Turn to GoFundMe When Money and Hope Run Out

By Mark Zdechlik, Minnesota Public Radio

Although Fox couldn’t do anything medically, she knew there was a way to ease some of the burden of medical bills and costs associated with doctor visits. She turned to the website GoFundMe and set up a site for her friend.

Tammy Fox wanted to help after a friend took ill with a rare and difficult-to-diagnose autoimmune disorder that required many trips to the Mayo Clinic.

“You’ve got meals; you’ve got hotel stays,” she said. “And gas. So that all needed to be covered.”

Contributions came in from strangers, noted Fox, who lives in suburban Minneapolis. “It’s crazy cool how awesome people are and what they’re willing to give. People, when they come together, can just move mountains — and I think that’s awesome to see.”

GoFundMe, the largest online, crowdsourced fundraising platform, says contributors have raised more than $5 billion, all told, from 50 million donations in the eight years it has been in business.

Setting up a GoFundMe page has also become a go-to way for people in need of help to pay their doctors and other health providers. Medical fundraisers now account for 1 in 3 of the website’s campaigns, and they bring in more money than any other GoFundMe category, said GoFundMe CEO Rob Solomon.

“In the old paradigm you would give $20 to somebody who needed help,” Solomon said. “In the new paradigm, you’ll give $20, you’ll share that and that could turn into 10, 20, 50 or 100 people doing that. So, the $20 could turn into hundreds, if not thousands, of dollars.”

Stories of tragic illness and financial hardship — all of them with pictures of those suffering — are easy to find in GoFundMe’s medical section.

One such case is musician Carolyn Deal, from Marshall, N.C., who lost nearly all her hearing after a traumatic brain injury. Deal has raised nearly $25,000 for alternative treatments and procedures she would like to try that her health insurance won’t cover.

Americans’ confidence that they can afford health care is slipping, said Sara Collins, an economist at the Commonwealth Fund who studies American health care concerns. Even for conventional treatments covered under most health plans, the copays and high deductibles have left many people with health insurance they can’t afford to use.

Her organization recently surveyed working-age Americans, asking whether they felt they had the ability to pay an unexpected medical bill of $1,000 in 30 days. Nearly half said no.

“We find that underinsured people are nearly as likely to report problems paying their medical bills as people who don’t have any insurance,” she said. “And they also report not getting needed health care at rates that are nearly as high as those who are uninsured.”

So it shouldn’t be surprising that people are raising funds through crowdsourcing, Collins said. “But it really should be a deep concern for policymakers and providers.”

Solomon acknowledges that the challenges in understanding how health insurance works and the wide-ranging coverage landscape are driving interest in the site.

“There’s just a lot of cost associated with the medical space, and it has become a very important category on GoFundMe,” he said.

Until about a year ago, GoFundMe kept 5 percent of fundraising proceeds in addition to collecting a nearly 3 percent credit card processing fee. It still charges the credit card fee but no longer collects the 5 percent surcharge.

This story is part of a partnership that includes Minnesota Public Radio, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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