While most of the news in 2023 regarding Alzheimer’s disease and other forms of dementia has focused on pharmaceutical developments, CMS has announced a new initiative targeting care and support for Medicare beneficiaries living with cognitive impairment and their unpaid caregivers. The “Guiding an Improved Dementia Experience Model” aims to improve the quality of life for people living with dementia, reduce strain on unpaid caregivers, and help people remain in their homes and communities through a package of care coordination and management, caregiver education and support, and respite services. The GUIDE Model will be tested by the Center for Medicare and Medicaid Innovation, and feature an alternative payment for participants who deliver key supportive services to people with dementia, including comprehensive, person-centered assessments and care plans, care coordination, and 24/7 access to a support line. The model will provide a link between the clinical health care system and community-based providers to help people with dementia and their caregivers access education and support, such as training programs on best practices for caring for a loved one living with dementia. Model participants will also help caregivers access respite services, which enable them to take temporary breaks from their caregiving responsibilities. CMS will release the application for GUIDE, a voluntary, nationwide model, in Fall 2023. Prior to the application release, interested organizations are encouraged to submit Letters of Intent to CMS by September 15, 2023. The model will run for eight years beginning July 1, 2024. 

FDA’s July 6 approval of the Esai-Biogen anti-amyloid drug leqembi (decanemab) has sparked a series of follow-up developments related to its insurance coverage, prescription and administration requirements, and fundamental benefit-cost concerns. Medicare, reports StatNews’ Rachel Cohrs, “will cover most patients eligible for Leqembi. The drug, which has modest benefits, has potentially serious side effects for some patients including brain swelling and bleeding. Tests including MRIs to diagnose such side effects, cerebrospinal fluid analysis, or other tests to detect the presence of amyloid plaques that the drug is designed to eliminate, and genetic testing for a certain mutation proven to increase the risk of adverse side effects are all coverable now. In this connection, one amyloid PET scan per lifetime is also currently covered, but the agency has proposed ending this restriction in order to detect the presence of amyloid plaques. As a condition of coverage, Medicare also rolled out a new patient registry to collect more information from physicians prescribing Leqembi. Information is supposed to be submitted every six months. Physicians who had previewed the registry said it appeared to function, though many clinics are still finalizing protocols for prescribing Leqembi.”  

While leqembi begins its rollout, detailed trial results of its likely competitor–Eli Lilly’s donanemab– were published in JAMA. The drug, reported StatNews’ Adam Feuerstein, “showed a 35% slowing of Alzheimer’s disease progression relative to placebo in a clinical trial that enrolled 1,700 patients with early-stage disease. Numerically, that’s a modest, 3.3-point improvement on a 144-point survey, called the Integrated Alzheimer’s Disease Rating Scale, or iADRS, that combines measures of cognition and function, such as driving, managing finances, or carrying on conversations. There was a similar benefit when donanemab’s efficacy was assessed using a more common measure of cognition called the Clinical Dementia Rating-Sum of Boxes, or CDR-SB. On that scale, the Lilly drug showed a 36% slowing of cognitive decline relative to placebo, or 0.68 points on an 18-point scale. The positive outcome of the study was tempered by a serious type of brain swelling and bleeding called amyloid-related imaging abnormalities, or ARIA. Thirty-seven percent of the participants treated with donanemab experienced ARIA-related side effects. David Knopman, a neurologist at the Mayo Clinic, said donanemab and Leqembi offer a similar, small benefit for patients, with perhaps donanemab looking slightly better on efficacy but with more concerning safety risks. From the perspective of absolute numbers, donanemab’s ability to show ‘slightly less worsening’ of cognition and function is ‘minimally clinically relevant,’ wrote Eric Widera, a geriatrician at the University of California, San Francisco. ‘However, slowing progression by a quarter to a half a year as seen with donanemab allows for someone to remain in MCI [mild cognitive impairment] or mild-stage dementia for just that much longer. For some, this can be considered clinically and personally meaningful.’ When the FDA granted full approval to Leqembi earlier this month, the agency added a black-box warning, the agency’s strongest caution, to its label, noting that the class of amyloid-targeting medicines to which it belongs is associated with brain swelling or bleeding that can be fatal in rare cases. If, or when, approved, donanemab’s prescribing label will carry the same black-box warning.” 

Amid all the clinical concerns raised by the onset of the anti-amyloid era, cost considerations loom. As Kaiser Family Foundations Arthur Allen reports, “Medicare and Medicaid patients will make up 92% of the market for leqembi. In addition to the drug’s $26,500 annual price tag, treatment could cost U.S. taxpayers $82,500 per patient per year, on average, for genetic tests and frequent brain scans, safety monitoring, and other care, according to estimates from the Institute for Clinical and Economic Review (ICER). About 1 million Alzheimer's patients in the U.S. could qualify to use it. ‘In the history of science, it's a significant achievement to slightly slow down progression of dementia,’ said John Mafi, a researcher and associate professor of medicine at the David Geffen School of Medicine at UCLA. ‘But the actual practical benefits to patients are very marginal, and there is a real risk and a real cost.’ Whatever its price, patients may be delayed getting access to Leqembi because of the relative shortage of specialists capable of managing the drug, which will require genetic and neuropsychological testing as well as a PET scan to confirm a patient's eligibility. ‘Time is of the essence for the neuropsychological testing,’ Mafi said, because once a patient's cognitive ability declines below a certain threshold, they become ineligible for treatment with the drug, which was tested only in patients in the earliest stages of the disease. Mafi's study estimates that patients without supplemental Medicare coverage will have to pay about $6,600 out-of-pocket for each year of treatment. That could put it out of reach for many of the 1 in 7 ‘dual eligible’ Medicare beneficiaries whose income is low enough to simultaneously qualify them for state Medicaid programs. This poses a serious health equity issue because ‘dual eligibles are low-income patients with limited opportunities and education, and at higher risk of chronic illnesses including dementia,’ noted Soeren Mattke, director of the Center for Improving Chronic Illness Care at the University of Southern California. ‘Yet many doctors may not be willing to treat them. The idea of denying access to this group is just appalling.’" 

Taking all of the elements of the leqembi debate into account, University of Pennsylvania AD and dementia expert Dr. Jason Karlawish has proposed that FDA implement a Risk Evaluation and Mitigation (REMS) strategy in order to foster a drug-specific balance between access and safety. “The measures of the benefits of a treatment for Alzheimer’s disease are difficult to translate into practice. In dementia treatment, survival has never been measured as a benefit. Instead, we speak of living longer in a certain state of mind. The measures we use — cognition and day-to-day function — and the significance of changes in them aren’t readily understandable. Let’s take stock: The workup of mildly symptomatic presentations of memory loss is tricky and time-intensive, biomarker testing carries nuance, the drugs’ risks can be serious and are associated with a gene for Alzheimer’s disease and may be heightened in persons on anti-coagulants, the measures of value are difficult to translate into clinical practice and policy, Medicare wants patients enrolled in a registry, the drugs’ costs are notable, and there are lots of patients and not enough clinicians to accurately diagnose and treat them. Finally, the risks are vivid, and they happen within the first few months of treatment. The benefits of disease slowing, in contrast, are far less evident.” 

One collateral area of research that the AD drug approval is accelerating: the quest for a “silver bullet” blood test to detect its onset at its earliest stage. “Currently,” writes StatNews’ Brittany Trang, “diagnosing Alzheimer’s is slow. But A glut of new blood tests — some used in clinical trials for Leqembi and donanemab — have received FDA breakthrough device designation, though none have been authorized yet. Newer tests and biomarkers are even trying to diagnose patients before they develop Alzheimer’s symptoms. As the market for these diagnostics opens up and researchers and clinicians increasingly lean upon these biomarkers to diagnose disease, it’s also causing researchers and neurologists to question what exactly Alzheimer’s is. At the Alzheimer’s Association International Conference in July, the National Institute on Aging and the Alzheimer’s Association presented new guidelines proposing that Alzheimer’s should be defined biologically, not based on clinical symptoms. The working group said the updates responded to many changes in the Alzheimer’s landscape in the last five years, mainly advances in blood-based biomarkers as well as the arrival of approved treatments for the disease. Right now, blood tests are ‘rule-out’ tests, tests that make sure that the wrong people aren’t getting further testing and treatment. But the holy grail would be a rule-in test, said experts. ‘This is so like a puzzle. We have many small pieces we tried to put together, but the whole picture is still not there,’ said Tamas Fülöp, a professor of medicine and geriatrics at the University of Sherbrooke in Canada. ‘Our aim is to find something for the patient! So it’s not a theoretical debate. This is very, very important [when] I have a patient in front of me and he’s asking me, ‘What can I do?’” 

Not all of this summer’s cognition-related news has concerned AD drug therapy and the development of diagnostic blood tests. The Alzheimer’s Association, in conjunction with the CDC, has published its fourth “roadmap” in its Healthy Brain Initiative series, this latest one looking ahead to 2027. The overarching vision of the HBI is that everyone deserves a life with the healthiest brain possible. To help achieve this vision, the HBI Road Map details 24 specific actions organized under four agenda items: Strengthening Partnerships and Policies; Measuring, Evaluating and Utilizing Data; Building a Diverse and Skilled Workforce; and Engaging and Educating the Public.

Two and a half years and $1 billion spent to date, the National Institutes of Health has finally launched clinical trials for the often debilitating “long” Covid syndrome. But, reports StatNews’ Betsy Ladyzhets, “both scientists who study long Covid and patients who have struggled with it say the trials are unlikely to deliver meaningful treatments, suggesting the federal government’s landmark Covid research effort may have been wasted. Among the trials announced so far, the NIH’s long Covid initiative, called RECOVER, is studying only a handful of pharmaceutical treatments, along with several behavioral options. These treatments will not address the underlying biological issues of long Covid, say scientists and patient advocates who reviewed the newly public details about the studies. Scientists also expressed concerns about how the RECOVER studies will measure the way the treatments affect patients. Without study designs that account for unique long Covid symptoms, such as delayed fatigue after exertion, the trials may miss positive impacts — or harmful side effects — of the treatments. Potential errors in the trials could have been avoided through transparency and better engagement with patients, experts and advocates say. The NIH allocated the vast majority of its funds to research aimed at better understanding long Covid symptoms, according to the budget document. This includes $537 million to set up and study patient cohorts, $149 million for studying biological samples and health records, $122 million for following patients in the future and $56 million for administrative tasks provided by consulting firms RTI International and Deloitte. One reason for the lack of promising treatments among RECOVER’s trials is the initiative’s overall failure to learn from past research in other chronic diseases that share symptoms with long Covid, said Todd Davenport, a professor and rehabilitation expert at University of the Pacific. Davenport has studied myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition that is now a common diagnosis for long Covid patients. Scientists on the RECOVER team ‘have parachuted into post-infectious illness and are now trying these things for the first time, to them,’ Davenport said. ‘But it’s clear they haven’t done the reading.’” 

“The United States has always been a terrible place to be sick and disabled. Ableism is baked into our myths of bootstrapping and self-reliance, in which health is virtue and illness is degeneracy. It is long past time for a bedrock shift, for all of us. We desperately need access to informed care, new treatments, fast-tracked research, safe spaces and disability protections. We also need a basic grasp of the facts of long covid. How it can follow anywhere from 10 to 30 percent of infections. How infections accumulate risk. How it’s not anxiety or depression, though its punishing nature can contribute to both those things. How children can get it; a recent review puts it at 12 to 16 percent of cases. How long-haulers who are reinfected usually get worse. How as many as 23 million Americans have post-covid symptoms, with that number increasing daily. More than three years later, I still have long covid. I can write again, but my fatigue is worse. I’m grateful to all those who have accepted the new me without making me beg. Some days, long covid feels manageable. Others, it feels like a crushing mountain on my chest. I yearn for the casual spontaneity and scope of my old life. I miss the friends and family who have moved on. I grieve those lost forever. So how long am I going to do this? Until indoor air is safe for all, until vaccines prevent transmission, until there’s a cure for long covid. Until I’m not risking my family’s future on a grocery run. Because the truth is that however immortal we feel, we are all just one infection away from a new life.” (Madeline Miller, the Washington Post) 

The extent of lost Medicaid coverage resulting from the post-covid redetermination process began to emerge in July with the release of the first statistics from 18 states. The CMS report, reported the Washington Post Amy Goldstein, “evaluated what happened with 2.2 million beneficiaries whose status was scheduled to be reviewed. It found that 46 percent remained on Medicaid or the Children’s Health Insurance Program, 32 percent were removed from the program, and 22 percent of the reviews had not been completed. Of those removed, 79 percent were for procedural reasons. Considerable variation emerges regarding how many people have been cut off — and the rate at which people lose coverage for paperwork reasons. Michigan and Pennsylvania are doing comparatively well, with most beneficiaries who have come up for renewal remaining on Medicaid. Florida has severed the second-most people, after Texas — slightly more than 300,000, two-thirds for procedural reasons. And CMS says Florida has been the only state unwilling to discuss with the agency how to minimize removing people for the wrong reasons. ‘It’s a total failure, this unwinding,’ said Craig Robinson, the executive director of Cabin Creek Health Systems, a network of a half-dozen clinics in West Virginia. Every day, he said, people arrive for appointments or for medicine at each clinic, unaware that their Medicaid coverage has stopped. Cabin Creek is not alone. At West Virginia Health Right, a Charleston clinic with 43,000 patients at three sites, the number covered by Medicaid fell by about 1,600 in May and June, the first two months of that state’s unwinding, according to Angie Settle, the clinics’ chief executive. Settle said the unwinding is putting a strain on the staff as new people show up for medical services they can no longer afford — and a strain on finances as more people show up for medications for which no one else is paying the costs. Responding to the performance data, CMS has ordered a half-dozen as yet unidentified states to pause the removal of people for paperwork reasons and to reinstate some whose coverage had been denied — up to tens of thousands of people, depending on the state. The agency is conferring with about a dozen other states regarding potential violations.” 

California, reports Justice in Aging (JinA), will become the first state to completely eliminate its asset limit for all the state’s Medicaid programs, following recent approval from the Centers for Medicare and Medicaid Services (CMS). Beginning on January 1, 2024, income-eligible individuals will be able to access the Aged and Disabled program, Medicare Savings Programs, and Long-Term Care programs regardless of assets. Until now, in California, as in most states, older adults have been required to deeply impoverish themselves by “spending down” most of their assets in order to access coverage. To learn more about this change and the broader matter of Medicaid eligibility expansion in general, see the issue brief, “Expanding Health Care Affordability for Older Adults and People with Disabilities: A Guide for State Medicaid Advocates” and FAQ on the Asset Elimination.  

The devastating impact of daycare staff shortages is portrayed in Jayson Laughlin’s Boston Globe report on Massachusetts’ inability to meet the needs of individuals with complex disabilities. “Tyler Bourne born with a rare chromosomal disorder that caused profound developmental disabilities, attended for about 12 years a day habilitation program, or day hab, in Mashpee five days a week, six hours a day. But over the past three years, he has been allowed back only rarely. Bourne is among roughly 2,000 individuals, most of them people with complex medical or behavioral needs, who have been effectively exiled from day hab since the start of the pandemic, placed on waiting lists for a service that is much more than just day care. The programs also provide skilled nursing, physical therapy, speech therapy, group outings, and opportunities to socialize. But they are currently so understaffed, according to state officials and providers, that some are finding it difficult to provide one-to-one care for everyone who needs it. Consequences for families are devastating. Bourne’s mother, Betsy Bourne, is among the many caregivers who have had to sacrifice, and even leave jobs, to care for disabled loved ones. Walking was never easy, but now, even with assistance, he can barely cross the living room of the family’s Barnstable home without collapsing. His mobility is so diminished his mother can’t get him into her car. ‘In a sense, the rest of society has gone back to work, school, and activities in their lives, and then people with these higher support needs . . . they’re kind of stuck in conditions that are close to COVID-like quarantine,’ said Dunn Stanisz, of the Disability Law Center. Despite Betsy Bourne’s dedication, her son continues to decline. ‘Every night, I come downstairs and cry for what he’s lost, what I’ve lost,’ Bourne said. ‘That our lives are just so different.’”  

The National Respite Coalition has issued a call to lobbying action regarding the coming fall Congressional appropriations agenda. In May, Congress agreed to cap FY 2024 domestic spending at FY23 levels in exchange for lifting the debt ceiling. Unfortunately, the House leadership drastically reduced overall non-defense discretionary spending allocations, leading to alarming reductions of up to 25 percent for many programs. The Senate has taken a more bipartisan approach, providing an allocation closer to level funding for most programs. The Senate bill includes increases for important family caregiver supports, including: $11.5 million for the Lifespan Respite Care Program ($1.5 million increase); $210 million for the National Family Caregiver Support Program ($5 million increase); and $5 million “to support demonstration grants that develop, test, and scale models that implement commitments and recommended actions from the National Strategy to Support Family Caregivers.”

The hospital-at-home option is expanding and, along with its attractive advantages over full-scale hospitalization, reports NPR’s Kat MacGowan, family members must step up to the plate, “ready or not. For decades, hospital-at-home was a small-scale experiment. During the COVID pandemic, the idea went mainstream. Today, 290 hospitals in 37 states have signed up. Diagnoses often include chronic obstructive pulmonary disease, heart failure, pneumonia, or an infection. In addition to twice-daily nurse visits and daily telemedicine sessions with a doctor, services like physical therapy or blood tests can be brought to the house. A nurse is available for advice via tablet computer. Oxygen machines, drugs and infusions can be delivered. For a caregiver, hospital-at-home eliminates the hardship that comes with a loved one's stint in the hospital. But it brings new concerns. These programs don't ask caregivers to handle medical tasks like dealing with an IV. But they might need to bring glasses of cold water in the middle of the night, help a weak person turn over in bed, change clothes, or get to the bathroom. In the hospital, nursing aids do those tasks. It could be part of the reason why between 10 and 62 percent of people turn down the option to participate in these new programs. ‘The family caregivers are completely invisible,’ says AARP’s Public Policy Institute Director Susan Reinhard. ‘They're not turning to wife, daughter, or husband, and saying: Can you handle this? That's the discussion we think needs to happen.’ Currently, that's not a federal requirement but CMS is considering adding rules to clarify caregivers' responsibilities. ‘CMS makes it very clear that during the hospital-at-home stay, hospitals are not to use family members, support persons, or caregivers to provide care that would otherwise fall to nurses or other hospital staff during an inpatient admission,’ said CMS chief medical officer Lee Fleisher. ‘Caregivers should have time to focus on a patient's emotional needs and overall well-being throughout the healing process.’”

Dr. Sunita Puri has penned a sobering and cautionary look at “The Hidden Harms of CPR.” Writing in the New Yorker, Puri observes that “CPR has a life of its own. Training for the public is ubiquitous; in thirty-eight states, students are required to learn the procedure before graduating high school. Unlike colonoscopies, gastric bypass surgery, and cardiac angiograms, CPR has also been glamorized, for decades, on television and in movies. Onscreen, the vast majority of patients survive these charades and return, unscathed, to their regular lives. But it is an open secret in medicine that CPR is both brutal and rarely effective. The procedure begins at death, when someone loses a pulse. CPR is designed to keep blood flowing to the brain in these situations. It requires a hundred chest compressions per minute, two inches deep, to the beat of the song “Stayin’ Alive,” and using a defibrillator to deliver an electric shock to the chest. The result, done correctly, is akin to assault. The force of compressions can shatter ribs and breastbones, puncture lungs, bruise the heart, and cause major blood vessels to rupture. Repeated electrical shocks can burn flesh. Even if the procedure restores a heartbeat, brain damage—whether mild memory loss or a vegetative state—occurs in forty per cent of hospitalized patients. Nonetheless, CPR has become an expectation rather than an exception, a treatment meant for a few but applied to all. Any patient admitted to a hospital is automatically considered to be ‘full code,’ meaning they’ll receive CPR if their heart stops. It’s the rare medical procedure for which consent is assumed; you have to sign a form for a blood transfusion, but not for a treatment that can deprive you of a peaceful death. The alternative to CPR, usually called a do-not-resuscitate (D.N.R.) order, tends to inspire fear rather than trust. (A newer phrase, “allow natural death” (AND), avoids the suggestion that other treatments are being withheld.). Uncertainty,” Puri concludes, “is the most wrenching part of medical decision-making. It’s hard not to wonder whether the patient in the I.C.U. is the next heartwarming exception. In these situations, widening the lens of the conversation, partly by asking people what quality of life they hope CPR will restore, may offer clarity. A person who would never risk brain damage might choose differently than one who believes a heartbeat is evidence of a life worth living.”

Tucked away in CMS’s proposed physician fee schedule for next year: a significant payment for caregiver training services. “CMS,” the agency stated, “is proposing to make payment when practitioners train and involve caregivers to support patients with certain diseases or illnesses (e.g., dementia) in carrying out a treatment plan. We are proposing to pay for these services when furnished by a physician or a non-physician practitioner (nurse practitioners, clinical nurse specialists, certified nurse-midwives, physician assistants, and clinical psychologists) or therapist (physical therapist, occupational therapist, or speech language pathologist) under an individualized treatment plan or therapy plan of care. “This is a huge step forward for America’s 48 million family caregivers and their loved ones,” said Nancy LeaMond, AARP’s chief advocacy and engagement officer. “It recognizes the critical role that family caregivers play, creates incentives for providers to engage with them and integrate them into the broader care team, and most important, provides them with the training and support they need.”

Researchers led by Johns Hopkins David Newman-Tucker have produced an estimate of deaths and permanent disability caused by misdiagnoses. The conclusion, reports StatNews’ Annalisa Merelli: “An estimated 371,000 people die every year following a misdiagnosis, and 424,000 are permanently disabled — a total of 800,000 people suffering ‘serious harm,’ said David Newman-Toker, professor of neurology at Johns Hopkins School of Medicine and director of its Center for Diagnostic Excellence. Settling on an exact number is hard because many cases of misdiagnosis go undetected. It could be fewer than his study identified, or more — between half a million and a million — though in any event it would be the most common cause of death or disability due to medical malpractice. Newman-Toker likens the issue of misdiagnosis to an iceberg, saying cases leading to death and disability are but a small fraction of the problem. ‘We focused here on the serious harms, but the number of diagnostic errors that happen out there in the U.S. each year is probably somewhere on the order of magnitude of 50 to 100 million,’ he said. “If you actually look, you see it’s happening all the time.’ But misdiagnoses typically don’t lead to severe consequences, because most times people aren’t visiting the doctor with a serious condition. That’s different, though, for the minority of people who walk into the doctor’s office with serious, potentially fatal, conditions. For them, the study found, the risk of death associated with misdiagnosis is 4%, and the risk of severe disability 11%. 

With SNF staffing levels expected to be the subject of a CMS proposed regulation in the near future, the Kaiser Family Foundation has taken a look at how health facilities might meet any new requirements. The Foundation “analyzed data from 14,575 nursing facilities (97% of all facilities, serving 1.17 million or 98% of all residents) that reported staffing levels in June 2023.” Staffing levels and requirements are often specified as direct care “hours per resident day” (HPRD), which equals the total number of hours worked by each type of nursing staff (nurse aides, registered nurses, and licensed practical nurses) divided by the total number of residents. Key takeaways include:

Is there a “knight in shining armor” emerging on the horizon to rescue understaffed long-term care services? Skilled Nursing News’ Zahida Siddiqi sketches the explosion of Artificial Intelligence (AI) technology and tools that are increasingly making their presence felt in the SNF and home care spaces. “From clinical decision support, to improving staff engagement and the resident experience, to assessing risk for falls and pressure ulcers, to having robots serve food and clean, AI-powered tools are making their way into nearly every facet of nursing home operations. And while the technology is still developing — and the risks and limits of AI are real — the tech is helping drive improvements in care while addressing bottom lines and staffing challenges. Pressure ulcers, wound management, hypertension, congestive heart failure (CHF) and diabetes are some of the more common conditions in nursing homes, and AI tools are being used to manage these diseases and more, according to Majd Alwan, a digital health and aging services technology expert. Predicting and diagnosing pressure ulcers – a condition often missed on darker skins due to being difficult to visually detect in early stages of development – is one such example, said Alwan, who has observed the wide successes of AI at Asbury Communities, a leading not-for-profit system of continuing care retirement communities (CCRCs). ‘All the nurse needs to do now is connect a camera to a computer and take a picture of the patient’s back, and it will identify exactly where the pressure points are,’ said Alwan of the AI tools used to detect pressure ulcers. ‘You are preventing [a pressure ulcer] from developing into stage one, and maybe even stage two pressure ulcer which would be much, much harder and costlier to treat.’ Such AI-enabled tools are also being used to manage CHF patients.”

As more Americans have turned to hospice care for support during the final stage of life, what began as a compassionate, non-profit movement has evolved, as Politico’s JoAnne Kenen writes, into “an industry dominated by publicly-traded companies and private equity firms -- and the subject of critical government reports and withering exposes. Today, with half of all Americans dying in hospice care, some doctors believe its challenges are in urgent need of fixing. In a recently published six-page ‘call to action’, 325 prominent doctors in this field wrote that ‘in recent years, we have observed an increasing prevalence of serious deficiencies in hospice care and high variability in quality of care.’ The journal essay cited a litany of wrongs — not enough physician involvement in patient care, unmanageably large nurse caseloads and inadequate, interdisciplinary care teams. The nurses, doctors, social workers, chaplains and others who are the core of hospice care, which generally takes place in patients’ homes, are overworked or not properly trained. They also said some hospices don’t have the required backups for emergencies, such as intense pain or difficulty breathing that families can’t take care of themselves. That means families dial 911, and patients end up back in the very hospitals that they chose hospice to avoid. Demurring slightly, Dr. Holly Yang, president of the American Academy of Hospice and Palliative Care and a practicing palliative care physician in San Diego, said she doesn’t think hospice’s challenges revolve so much around nonprofit vs for-profit ownership, but about the Medicare hospice benefit itself. ‘A lot has changed since Congress added hospice to Medicare in 1982 — how we age and die, and where and how families live and work and who is available to stay home and care for a dying relative. The hospice benefit has not changed with the times,’ said Yang. ‘Hospice in its early days was very focused on cancer, which had a more predictable and shorter course than it does with today’s treatments. And more people in hospice have conditions like dementia or congestive heart failure, where the trajectory is uncertain.’”

For want of a $12 antibiotic, blocked by record and insurance problems at her pharmacy, Dr.Chavi Karkowsky’s pregnant patient found herself in dire straits in an obstetrics triad unit facing a possible serious kidney infection. The event brought home to Dr. Karkowsky the “overlooked reason our healthcare system crushes patients: the administrative burden of health care. It’s composed of work that is almost always boring but sometimes causes tremendous and unnecessary human suffering. On a recent average Wednesday, I saw several patients who had been unable to get crucial supplies or medications, or who missed appointments because of administrative burden. One had taken a precious morning off from work to ferry documents between a Medicaid office and her pharmacy to prove that she did not, in fact, have alternate insurance, and therefore her diabetic supplies should be covered. Administrative burden can work as a technique to keep costs down. However, part of the problem, said Andrew Friedson, the director of health economics at the Milken Institute, is that we don’t count the burden to patients, and so it doesn’t factor into policy decisions. My patient with the kidney infection stayed in the hospital for several days of IV antibiotics. Her vital signs improved and her contractions stopped. She was willing to initiate her discharge only once she had her outpatient prescriptions, those antibiotic pills, in her possession. She said that she trusted us, the medical team in the hospital. She felt we had saved her life and kept her baby safe. She just wasn’t sure she could trust the rest of the system to do the same.”

CMS is requesting public input on a list of eight questions about access to Medicare-covered home health aides. The request is contained in the agency’s recent proposed rule for home healthcare, and responses will be accepted until August 29. The questions cover issues such as declining utilization of home health aides, specific services availability for individuals with multiple comorbidities; obstacles to health agency recruitment and retention of home health aides, and the disparity in hourly wages or total pay for equivalent hospital or SNF-based care. The Center for Medicare Advocacy has provided lengthy comments that can serve as a guide for other responders. The Request for Information can be found on pages 43671-43672 of the Federal Register notice. 

Arch (the National Respite Network) has published a white paper entitled “Redefining the Value of Respite.” The document seeks to provide an in-depth description of the current challenges related to measuring the economic value of respite and to offer a new framework for research and evaluation.

The University of Minnesota’s BOLD Center on Dementia Caregiving invites participation September 8 in a virtual Roundtable highlighting Tennessee’s successful implementation of a state-wide, innovative, and integrative approach to advancing its dementia caregiving goals. Registration is available here.  

Seventeen years ago PBS’s FRONTLINE broadcast a documentary on America’s “Living Old” geriatric population. The program, now made available on Frontline’s YouTube channel, underscores how little has changed since it first aired. “When Maria Paunescu was 96, she was dealing with the ramifications of multiple shingles infections on her legs, severe arthritis and heart and vascular disease. She could no longer walk, and it was impossible for her to sit up or get out of bed without help from her daughter, Lucia Paunescu. Committed to keeping Maria out of a nursing home and the hospital, Lucia cut back her work to about 10 hours a week so that she could care for her mother. ‘I give her everything I have, but I don’t know what to do,’ Lucia told FRONTLINE.” That interview was conducted over 15 years ago; today, America’s geriatric population is still growing and still facing many of the same challenges. People at their most advanced age continue to deal with many of the same chronic conditions that those interviewed in Living Old battled, with families grappling with similar difficult decisions and a shortage of care for their loved ones. 

(Editor’s Note: The death of American entertainment icon Tony Bennett in July prompted a look back at a Policy Digest item posted in April 2021, after the Bennett family revealed the singer’s AD condition. In the item, journalist John Colapinato recounted his spellbinding experience at a very intimate Bennett performance):   

The Rosalinde and Arthur Gilbert Foundation, Bader Philanthropies, Inc., and Family Caregiver Alliance recognize three organizations that are delivering dynamic programs addressing the needs of family and friend caregivers and those they care for living with Alzheimer’s disease or a related condition.

Learn more about the awards, read the awards FAQs and find details about awardees from previous years. 

The application window will be open from September 6 through October 6, 2023. Please note, the application period will not be extended beyond this date.

Check the main Innovations in Alzheimer’s Caregiving Awards page for full details after that date. 

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

Contributor: Kathleen Kelly (executive director)

Production: Calvin Hu

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