“Registered nurse Barbara Decelles made the best of it for 38 years at senior care centers in Wisconsin and Illinois. She quit last year. She’s done working 25-hour shifts, knowing she might be making mistakes, then, exhausted, driving off the road on her way home. She’s done choosing which call light to answer and which to ignore. She’s done asking for more help and being told it doesn’t fit the budget. She’s had it with owners appearing on a busy day to celebrate the staff’s heroic work with a goofy photo-op but not extending benefits to aides or awarding raises. But she can’t escape from the anger – that people she cared for daily declined faster and died sooner because of inadequate staffing. ‘Somehow, somebody is making money off of this, and it certainly isn’t the caregivers. I’m tired to my soul.’” (Jayme Fraser and Nick Penzenstadler, USA Today)

In the sports world scorecards and rankings record wins and losses, hits and misses, and successes and failures. Applied to the world of health policy and, in particular, family caregiving, 2022's lists of  pluses and minuses offer both significant achievements to celebrate and  disappointments to regret.

Publication in September of a national strategy to alleviate the burdens of caregiving. Driven by the mandate contained in the RAISE act, the Family Caregiving Advisory Council delivered a 148 page report setting forth overarching goals and detailed implementation steps targeting all levels of government and policymakers, as well as family caregivers. 

Alzheimer’s disease and dementia: on the plus side, the past year saw a number of intriguing developments related to earlier diagnoses utilizing blood and other test modalities in experimental settings. As the new year began, the FDA gave limited approval to the first medication demonstrating an ability to slow Alzheimer’s advance by targeting amyloid buildup in the brain. 

Covid-19: for much of 2022 the numbers were trending in the right direction: vaccination rates up, hospitalizations and deaths down, visitations restored. But the virus in its mutating manifestations remained a clear and present danger to the elderly, immunocompromised, and partially boosted. 

Nursing homes: in a landmark report published in April, the National Academy of Medicine provided both a vision and a roadmap for moving the nation’s long-term care options from dysfunctional and malfunctional to a quality-driven, person centered, well-trained and adequately staffed delivery system. The report landed in the midst of a severe crisis besetting the skilled nursing facility industry as it confronted the Covid pandemic’s devastating impact on the lives of residents, their families, and the availability of adequate professionals. The NAM study followed closely upon Pres. Biden’s State of the Union address in which he highlighted his plans to improve SNF care and set the stage for Medicare and Medicaid officials to propose the setting of minimum staffing requirements. 

Home and Community Based Services: perhaps the most disappointing 2022 long-term event came with the congressional failure to approve the Biden administration’s call for major new HCBS investments; in the closing days of the year, a $1.7 trillion budget passed minus HCBS’ requested $150 billion. 

What did make it into the statute books, as part of the massive Inflation Reduction Act, was a set of Medicare prescription drug measures that over the next several years will significantly decrease seniors out-of-pocket medication costs. 

The beginning of 2022 brought implementation of legislation targeting the sending of “surprise bills” to patients receiving care from out-of-network providers. The legislation sought to remove patients from reimbursement disputes involving doctors, hospitals and insurers. While there appear to be some glitches and dispute resolution backups affecting professional entities, the new year should indicate how patients’ finances–the main target of the legislation–have fared. 

Medical debt more broadly made considerable news in 2022, with major media revelations of severe debt collection methods being employed by some hospitals. At the same time, family relations of institutionalized SNF residents found themselves subjected to demands for reimbursement based upon prohibited contractual clauses. The exposure of these practices yielded both state and federal warnings and a tightening of bans already on the books. 

Diminished hearing capability afflicts many seniors and contributes to their loss of vital social contacts and cognitive function. The long-awaited FDA go-ahead for over-the-counter hearing aids promised greater access to affordable relief for a large number of hearing-impaired sufferers.  

Meriting a year-end mention is arguably one of the few positive outcomes of Covid 19; while not limited to caregiving or caregivers, the explosion of online webinars mobilizing the wizardry of Zoom and other platforms gave millions of Americans computerized access to information and collaborative tools unimaginable before Covid 19 suspended travel and meeting attendance. The development included the spread of telehealth consultations opening new modes of healthcare delivery. While Covid restrictions have eased, online communication channels seem certain to endure. 

Thus, on the one hand: a national caregiving vision and roadmap, progress in easing Covid 19 constraints, safeguarding cognitive function, new initiatives in affording America’s aging population a nurturing environment, tackling prescription drug costs, eliminating “surprise bills,” easing the medical debt burden, and the harnessing of communication technology; on the other hand: no let up in day-to-day family caregiving burdens, dementia breakthroughs still proving elusive, nursing home accommodations and available staff remaining critically threatened, HCBS funding failing to increase, Covid 19 illness variants continuing to afflict the vulnerable, and, given the dynamics apparent in the finally seated 187th Congress, the prospects for progress in 2023 most likely requiring state and local initiatives. 

Year-end statistics published by the Kaiser Family Foundation indicated an alarming drop in nursing home residents fully up to date on Covid 19 vaccinations. Less than half of them had received recommended booster shots while less than a quarter of staff had done so. The share of residents who are up to date ranged from 73 percent in South Dakota to 24 percent in Arizona. Among nursing home staff, the share ranged from 48 percent in California to 10 percent in Alabama. 

Bucks County Pennsylvania will be the location of a new National Institutes of Health initiative– the “Home Test to Treat” program --that will utilize telehealth technology to allow those who are sick with Covid-19 an alternative to venturing out for testing or treatment, potentially reducing the spread in the community. Telehealth services provider eMed will implement the program. Having administered millions of verified at-home telehealth sessions during the pandemic, eMed will host the user-friendly Home Test to Treat website, where participants can sign up for the program, report symptoms, receive telehealth and antiviral treatment delivery, and coordinate telehealth enabled test kits. 

What difference has rapid introduction of Covid 19 vaccines made? Commonwealth Foundation researchers built “a computer model of disease transmission to estimate hospitalizations and deaths averted through the end of November 2022. The bottom line estimates: From December 2020 through November 2022, the COVID-19 vaccination program in the U.S. prevented more than 18.5 million additional hospitalizations and 3.2 million additional deaths. Without vaccination, there would have been nearly 120 million more COVID-19 infections. The vaccination program also saved the U.S. $1.15 trillion in medical costs that would otherwise have been incurred. When compared to the actual values observed during this time period – 82 million infections, 4.8 million hospitalizations, and 798,000 deaths – without vaccination the U.S. would have experienced 1.5 times more infections, 3.8 times more hospitalizations, and 4.1 times more deaths. Omicron variants have been particularly immune-evasive and drove the largest surge in COVID-19 cases to date; the vaccines, however, provided broader and more durable protection against severe clinical outcomes. 

HHS has published its annual “National Plan to Address Alzheimer’s Disease (2022 Update).” The 132-page plan’s goals include: Preventing and effectively treating Alzheimer's Disease and Related Dementias (ADRDs) by 2025; enhancing care quality and efficiency; expanding supports for people with ADRDs and their families; enhancing public awareness and engagement; improving data to track progress; and accelerating action to promote healthy aging and reduce risk factors for ADRDs.  

Its chemical name is lecanemab, it will be sold to the public as Leqembi for $26,000 a year, and, as the Wall Street Journal’s Joseph Walker writes, it is “the first drug to clearly show that reducing amyloid results in clinical benefits to patients, though doctors say its effects are relatively modest and far from a cure. Use of the drug also raises the risk of side effects, including brain bleeding and swelling. The drug’s developers, Eisai and Biogen, said it would be available commercially by Jan. 23. The FDA said the drug should be used by patients with early-stage Alzheimer’s, defined as mild cognitive impairment or mild dementia and with brain amyloid confirmed by diagnostic tests. Eisai estimates that the drug delayed patients’ disease getting worse by about five months over 1.5 years of treatment. At least in the near-term, however, Leqembi and other anti-amyloid drugs will be out of reach for most patients because of a Medicare decision in April 2022 to deny routine coverage of such drugs. Under current Medicare rules, patients must be enrolled in approved clinical trials to get the drug paid for. No such studies are ongoing or planned, according to an Eisai spokeswoman. The Medicare limitation,” Walker points out, “was an outgrowth of the fierce controversy last year over FDA’s initial approval of adulelm and Medicare’s subsequent insertion of the clinical trial requirement. Medicare officials can reconsider their coverage decision, but the process could take as long as six to nine months.”  

While Big Pharma’s researchers and scientists pour immense effort and resources into the quest for a dementia/Alzheimer’s treatment, Loretta Veney, writes the Wall Street Journal’s Julie Halpert, is taking a somewhat different approach. Seeking to improve care for dementia sufferers, Ms. Veney has become a leading advocate of their playing with Legos. “‘When you put the Lego bricks out, it’s like they come alive again,’ she says of her experiences with people who have dementia. In the middle stages of her mother’s journey into dementia, when she couldn’t do much, her mother could still build with Legos and create a story. Last year, while giving a presentation at a senior-living center, Ms. Veney asked a resident with dementia to build her favorite vacation using Legos. The woman built a cruise ship that she went on with her niece 15 years ago. ‘All of a sudden,’ marveled Ms. Veney, ‘the woman started talking about the midnight buffet and line dancing on the cruise, and the niece burst out crying because the woman hadn’t talked in a long time.’” 

On the other hand, reports the Long Term Care Community Coaltion (LTCCC) in a lengthy report on “A Decade of Drugging,” SNF residents continued to receive too much of another kind of medication: antipsychotic (AP) drugs. “ More than one million people live in US nursing homes,” LTCCC’s report states, “and each week, one in five of them are given dangerous antipsychotic (AP) drugs. In most cases these drugs are administered without clinical justification. Understaffed and underenforced, nursing homes are too often turning to dangerous AP drugs instead of implementing the non-pharmacological approaches to dementia care that have been required for over 30 years. Troublingly, we find that some nursing homes are obfuscating the true number of residents receiving AP drugs to preserve their reputation and bottom lines. This practice is fostered by a federal government that provides minimal oversight and data transparency on antipsychotic drugs.” 

Justice and Aging has greeted the new year with an extensive list of proposals designed to achieve greater equity in health and long-term care services, major new investments in HCBS, expanded Medicare benefits for all beneficiaries, reductions in Medicaid estate recovery attempts, and greater availability of home healthcare. “Overwhelmingly, older adults prefernto live in their own homes where they can stay connected to their community. And COVID-19 continues to put residents in congregate care settings at grave risk for serious illness and death, with facilities that have more residents of color at highest risk. Yet, too many older adults with limited resources are forced into institutional settings to receive the care they need, particularly women, people of color, LGBTQ+ older adults, and individuals with Alzheimer’s or other dementias. To increase equitable and quality access to HCBS, Congress must take steps to end federal Medicaid and Medicare laws’ biases towards institutional services. The Administration must uplift HCBS and community integration as a priority across all divisions of Health and Human Services and increase coordination with Housing and Urban Development and other agencies.” 

An issue that garnered significant media attention in 2022–the growth of families’ medical debt burden–has elicited an innovative initiative. In the next few weeks, writes the New York Times’ Amanda Holpuch, “tens of thousands of people in Cook County, Ill., will open their mailboxes to find a letter from the county government explaining that their medical debt has been paid off. Officials in New Orleans and Toledo, Ohio, are finalizing contracts so that tens of thousands of residents can receive a similar letter in the coming year. In Pittsburgh on Dec. 19, the City Council approved a budget that would include $1 million for medical debt relief. More local governments are likely to follow as county executives and city councils embrace a new strategy to address the high cost of health care. They are partnering with RIP Medical Debt, a nonprofit that aims to abolish medical debt by buying it from hospitals, health systems and collections agencies at a steep discount. Cook County plans to spend $12 million on medical debt relief and expects to erase debt for the first batch of beneficiaries by early January. The $1 million in Pittsburgh’s budget could wipe out $115 million in debt, officials said.These initiatives are all being funded by President Biden’s trillion-dollar American Rescue Plan, which infused local governments with cash to spend on infrastructure, public services and economic relief programs.” 

“Family caregiving” might be considered an oxymoron for one segment of aging Americans. “Kinless” seniors. “An estimated 6.6 percent of American adults aged 55 and older,” writes the New York Times Paula Span, “have no living spouse or biological children. About 1 percent fit a narrower definition — lacking a spouse or partner, children and biological siblings. The figure rises to 3 percent among women over 75. Several demographic factors have fostered increased kinlessness. Baby boomers have lower marriage rates and higher divorce rates than their parents, and more have remained childless. The rise of so-called gray divorce, after age 50, also means fewer married seniors, and extended life spans can make for more years without surviving family. Of course, having family is no guarantee of help as people age. Estrangement, geographic distance and relatives’ own declining health can render them unwilling or unable to serve as caregivers. Still, ‘our system of caring for the aged has functioned, for better or worse, on the backs of spouses and, secondarily, adult children,’ said Susan Brown, a sociologist at Bowling Green State University. However governments, community organizations and health care systems begin to address the issue, there’s little time to waste. Projections indicate that kinlessness will increase greatly as the population cohorts behind the baby boom age. ‘Younger people are less likely to marry and have children, and they have fewer siblings as family sizes shrink,’ Dr. Brown said. ‘How will they navigate health declines? We don’t have a good answer. I’m not sure people are paying attention.’” 

CMS has responded to growing concerns about Medicare Advantage plans’ prior authorization requirements and marketing practices. In mid December, reports the New York Times’ Reed Abelson and Margot Sanger-Katz, “the agency proposed an extensive set of tougher rules governing private Medicare Advantage health plans, in response to wide-scale complaints that too many patients’ medical claims have been wrongly denied and that marketing of the plans is deceptive. Senate Democrats in November had issued a scathing report detailing some of the worst practices, including ads that appeared to represent federal agencies and ubiquitous television commercials featuring celebrities. The newly published proposed rule targets some of the practices identified in the Senate report that caused some consumers to confuse the companies with the government Medicare program. The proposal would also allow beneficiaries to opt out of marketing calls for plans and would limit how many times companies can contact a beneficiary after he or she fills out a form asking for information. Equally significant, the proposal would address MA plans’ use of techniques that require prior approval of certain care before it will be covered. Plans would be required to disclose the medical basis for denials and rely more heavily on specialists familiar with a patient’s care to be involved in the decision-making. Medicare has also established tighter time limits for answers on authorizations; patients now often wait up to 14 days.” 

One major provision, however, could threaten Medicaid coverage for millions of recipients. As the Wall Street Journal’s Stephanie Armour reports, “The coverage losses are expected because states that received extra Medicaid funding under a 2020 Covid-19 relief bill had to agree to pause beneficiaries’ eligibility verifications. The continuous enrollment in the state-federal program for the low-income and disabled was set to end when the health emergency is over, likely sometime in 2023. Instead, under the new federal budget bill, states can begin disenrolling people from Medicaid in April even if the public-health emergency designation remains in place. As many as 18 million people could lose coverage, according to estimates from the Urban Institute. Enrollment in Medicaid and its related children’s program had grown by almost 19 million people as of July 2022. It is now the largest single source of coverage in the U.S., with one in four Americans in Medicaid or its related children’s health program. Public-health advocates are concerned that the sheer volume of eligibility redeterminations will result in people being ousted from Medicaid even if they are eligible. They also worry that people will wind up uninsured because they aren’t aware of their eligibility for other coverage, such as employer-sponsored health insurance or Affordable Care Act plans.” 

The Center for Medicare Advocacy and Home Care and Hospice offer a new guide to Medicare hospice services, including an extensive list of questions to ask when choosing a hospice provider. The questions are separated into two categories – Hospice Screening Questions, which are intended to help patients and families identify which hospice they would like to elect hospice care from and should be asked prior to electing hospice care, and Hospice Care Questions, which are designed to be asked after the election of hospice care and the completion of a comprehensive assessment. Waiting until after election and the assessment will allow the hospice to answer the questions as they relate to an individual’s specific situation.  

PHI has created an online, interactive Direct Care Workforce State Index that shows how states’ public policies support direct care workers — and where they can improve. “Users,” according to McKnight’s Senior Living, “can rank and compare states based on policies enacted to support workers — including wages, training requirements, Medicaid expansion, paid leave, ‘Right to Work’ laws, LGBTQ+ protections and state-level earned income tax credits. The ranking also examines the economic status of the nation’s 4.7 million direct care workers — residential care aides, nursing assistants and home care workers — through median wage, wage competitiveness, median annual personal earnings, poverty, affordable housing and health insurance coverage.” 

“One day, sometime after my knee surgery, Andrea brought my 5-year-old granddaughter, Haley, for a visit. Haley showed up in a full nurse’s get-up with smock and plastic stethoscope. She handed me a small bell and told me to ring if I needed anything. I tried to play her game, but I wanted Haley to remember me as the grandma who taught her how to hit a tennis ball, not the grandmother lying weak on the couch. But while I was thinking these thoughts, it suddenly dawned on me—Haley didn’t care which grandma I was. She just wanted to be with me. I realized I had been so consumed with my fears of dependency and old age that I hadn’t appreciated that, like Haley, the people I cared about—my husband, kids, grandchildren and friends—just wanted to be with me, sick or healthy, independent or dependent. Only then did I begin to appreciate their kindness. I recognized how that was the circle of life. I had taken care of my mother through her demise. I’d reminded Mom’s attendants that she had been a wife, mother, schoolteacher and hiker, so that they would know she hadn’t always been the vacant person she had become. She wasn’t anonymous because I shared her history. And I had found purpose in the care I gave to my mother in her final days. Hopefully, my children would as well if the same need arose, and they would remind my caretakers of who I had been if I couldn’t—mom, grandmother, wife, sister, physician, writer, tennis aficionado.” (Sherry Mendelson, the Wall Street Journal) 

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Editor: Alan K. Kaplan (attorney and health policy consultant)

Contributors: Kathleen Kelly (executive director), Jenna Shankman (policy specialist)

Production: Calvin Hu

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