2021 wasn’t supposed to end as it did. Americans had been looking forward to normal, Covid-contained Christmas and New Year celebrations, while Democrats anticipated a joyous White House bill signing ceremony ushering in the Build Back Better Act a.k.a. New Deal 2.0. Instead, omicron, along with an unbridgeable intra-Democratic split, managed to sidetrack the celebrations.

The year began with arms outstretched, awaiting miraculous jabs promising coronavirus relief; it has ended with still too many unprotected and vulnerable individuals and caregivers, the impact of Covid-19 variations unclear, the nation divided by coronavirus protection protests, and government at the state and federal levels stymied by court battles over mandates. The end-of-year customary stock-taking, when many events can be remembered and assessed, seemed overwhelmed by pandemic fatigue.

Last September CMS sent a message to nursing home residents, family members and friends: you can come visit again. CMS’s latest guidance continues to stress family access, albeit with some slight wriggle room to permit limited exceptions. “While CMS is concerned about the rise of COVID-19 cases due to the Omicron variant,” the agency’s latest FAQ states, “we’re also concerned about the effects of isolation and separation of residents from their loved ones. Earlier in the pandemic we issued guidance for certain limits to visitation, but we’ve learned a few key things since then. Isolation and limited visitation can be traumatic for residents, resulting in physical and psychosocial decline. So, we know it can lead to worse outcomes for people in nursing homes. Furthermore, we know visitation can occur in a manner that doesn’t place other residents at increased risk for COVID-19 by adhering to the practices for infection prevention, such as physical distancing, masking, and frequent hand hygiene. There are also a variety of ways that visitation can be structured to reduce the risk of COVID-19 spreading. So, CMS believes it is critical for residents to receive visits from their friends, family, and loved ones in a manner that does not impose on the rights of another resident. (At the same time) while residents have the right to receive visitors at all times and make choices about aspects of their life in the facility that are significant to them, there may be times when the scope and severity of an outbreak warrants the health department to intervene with the facility’s operations. We expect these situations to be extremely rare and only occur after the facility has been working with the health department to manage and prevent escalation of the outbreak.”

“It’s beyond a crisis,” said Katie Smith Sloan, president of LeadingAge, an association of nonprofit long-term care facilities. “For many providers across the country, it’s a collapse.” The collapse Sloan was lamenting concerned overburdened hospital and nursing homes once again filling up with Covid-19 patients.

To the rescue: military medical personnel dispatched by the Biden administration. As the New York Times’ Andrew Jacobs reports, “None of their experiences prepared Private Shina Vang and his fellow Guard members for their latest deployment: collecting bedpans, clipping toenails and feeding residents at North Ridge Health and Rehab, a sprawling nursing home in suburban Minneapolis that is the largest in the state. ‘I’ve had protesters throw apples and water bottles at me but that doesn’t compare to the challenge of giving someone a bed bath,’ Private Vang said.

“A low-slung collection of brown and tan brick buildings, North Ridge has 320 beds, but 100 of those are empty at the moment because of staff shortages. The employees that remain have been running ragged as they work overtime, and on some days, administrators, dietitians and physical therapists help with making beds and filling water pitchers. ‘We do what we can because the show must go on,’ said Liz Ellenz, 37, the director of dining, who often works weekends and stays until 9 p.m. washing dishes. ‘Some days are really dark.’

“But on Thursday, Ms. Ellenz was positively giddy as five Guard members zipped around the kitchen with soldierly purpose and precision. They hosed down food carts, bagged trash and helped prepare the day’s lunch: ham and macaroni au gratin, stir-fried snow peas and citrus gelatin cubes.”

Health-care workers aren't quitting because they can’t handle their jobs, writes the Atlantic’s Ed Yong. They’re quitting because they can’t handle being unable to do their jobs.

“Even before COVID-19, many of them struggled to bridge the gap between the noble ideals of their profession and the realities of its business. The pandemic simply pushed them past the limits of that compromise. Health-care workers, under any circumstances, live in the thick of death, stress, and trauma. ‘You go in knowing those are the things you’ll see,’ said Cassandra Werry, an ICU nurse currently working in Idaho. ‘Not everyone pulls through, but at the end of the day, the point is to get people better. You strive for those wins.’

“COVID-19 has upset that balance, confronting even experienced people with the worst conditions they have ever faced and turning difficult jobs into unbearable ones. Most enter medicine ‘as a calling,’ Vineet Arora told me, which can push them to sacrifice ever more of their time, energy, and self. But that attitude, combined with taboos around complaining or seeking mental-health help, can make them vulnerable to exploitation, blurring the line between service and servitude.

“Between 35 and 54 percent of American nurses and physicians were already feeling burned out before the pandemic. Throughout the crisis, many have taken stock of their difficult working conditions and inadequate pay and decided that, instead of being resigned, they will simply resign.

“Several health-care workers told me that, amid the most grueling working conditions of their careers, their hospitals cut salaries, reduced benefits, and canceled raises; forced staff to work more shifts with longer hours; offered trite wellness tips, such as keeping gratitude journals, while denying paid time off or reduced hours; failed to provide adequate personal protective equipment; and downplayed the severity of their experiences.”

“Some of the largest U.S. hospital systems,” reports the Wall St. Journal, “have dropped their own Covid-19 staff mandates. Hospital operators including HCA Healthcare Inc. and Tenet Healthcare Corp, as well as nonprofits AdventHealth and the Cleveland Clinic are doing so. Labor costs in the industry have soared, and hospitals struggled to retain enough nurses, technicians and even janitors to handle higher hospitalizations in recent months as the Delta variant raged. 

Bowing to the widespread dismay at the asking price for the controversial AD drug aduhelm, Biogen announced just before Christmas that it was slashing the drug’s cost in half from $56,000 per year to $28,200. The price cut follows disappointing sales and refusals by some major insurers and providers to offer the treatment. A national Medicare coverage decision determining whether Medicare will pay for the treatment is expected to be announced by the spring of 2022.

A new test for dementia detection: a five-minute Artificial Intelligence test that can be performed on an iPad has been approved by the FDA and should be increasingly available in 2022. Developed by London-based Cognetivity Neurosciences, the test displays images at a rapid pace on the iPad screen and asks users to identify them as either animal or non-animal. That draws on humans’ strong intrinsic reaction to animal stimuli – sometimes referred to as the ‘food or fear’ response – and the ability of a healthy brain to process images of animals in less than 200 milliseconds. The test targets brain areas that are affected in the initial stages of cognitive disorders before severe memory symptoms become apparent.

Meanwhile, another diagnostic medium is nearing rollout, namely blood tests. Identifying Alzheimer’s, observes the Economist, “normally requires a brain scan, and perhaps a lumbar puncture (the insertion of a needle into the lower spine), to extract cerebrospinal fluid, so as to measure its levels of two proteins that build up in the brains of people with Alzheimer’s--beta-amyloid and tau.

Now, there is growing excitement over a simple blood draw that measures a form of tau called P-tau217 and can distinguish Alzheimer’s from other neurodegenerative conditions. Announced last year and likely to be validated for routine use within 12 months, the test has been found to predict Alzheimer’s with 96% accuracy. Furthermore, it is already possible using mass spectrometry to measure the level of beta-amyloid in the blood. But it is not certain how this relates to levels in the brain. The accuracy of the procedure rises to 94% if two other risk factors are considered: age and the presence of a form of the APOE gene, known as apoe4, which heightens the risk of developing Alzheimer’s (and also appears to increase vulnerability to heart disease and Covid). This can also now be detected by a blood test.

Near-infrared light can improve memory performance, according to the United Kingdom’s Durham University. Its study involved photobiomodulation therapy transmitted by a special helmet. It works by delivering infrared light from 14 fan cooled LED light arrays deep into the brain, focused by the skull, at a wavelength of between 1,060 to 1,080 nanometres delivering 1,368J of energy to the cranium during each six-minute treatment cycle. This stimulates the mitochondria that generate most of the chemical energy needed to power cells' biochemical reactions. In turn, this leads to a rise in the level of an organic compound called adenosine triphosphate (ATP), markedly decreased in dementia patients, that provides the energy to drive processes in living cells and help nerve cells to repair.

Could erectile dysfunction drug treatment be retargeted to treat AD? Perhaps, says new research into the application of sildenafil, better known as Viagra. Researchers at the Cleveland Clinic’s Genomic Medicine Institute, reports MedPage Today’s Judy George, “integrated genetic and other data to determine which of over 1,600 FDA-approved drugs might be effective in treating Alzheimer's disease, zeroing in on drugs that targeted both amyloid and tau.

“As the investigators narrowed the list of candidates, they looked for drugs with ideal brain penetration, positive in vivo findings in Alzheimer's mouse models, and sufficient patient data. Sildenafil, which has been shown to significantly improve cognition and memory in preclinical models, presented as the best drug candidate. Across 6 years of follow-up, sildenafil users were 69% less likely to develop Alzheimer's disease than non-sildenafil users, a large case-control analysis of insurance claims showed.

“To reduce the likelihood of confounding by indication, the researchers also evaluated four comparator drugs: losartan (Cozaar), an antihypertensive agent, metformin (Glucophage), a biguanide used to treat type 2 diabetes, diltiazem (Cartia), an antihypertensive and calcium channel blocker, and glimepiride (Amaryl), a sulfonylurea used to treat type 2 diabetes. Of the four comparators, losartan and metformin currently are in clinical trials for Alzheimer's disease. Sildenafil showed a 55% reduced risk of Alzheimer's compared with losartan, 63% compared with metformin, 65% compared with diltiazem, and 64% compared with glimepiride, after adjusting for age, sex, race, and disease comorbidities.”

HHS Sec. Xavier Becerra has unveiled a new national goal in the annual update to the National Plan to Address Alzheimer's Disease. For the first time, the Department will focus on work being done to promote healthy aging and reduce the risks that may contribute to the onset of Alzheimer's disease and related dementias. Although these diseases cannot yet be prevented, there is growing evidence that addressing certain risk factors for dementia, such as high blood pressure, physical inactivity, and chronic medical conditions such as diabetes and depression, may lower the chances of developing the disease or delay its onset.

Under the plan's new goal, the federal government will accelerate research on risk factors for Alzheimer's disease and related dementias, and strengthen the infrastructure needed to rapidly translate and disseminate information about risk factors, interventions to reduce the burden of risk factors, and related health promotion activities to health care providers, community-based providers, caregivers, and public health networks.

Established almost 40 years ago, California’s network of Caregiver Resource Centers (CRCs) are increasing their support to ever more strained family caregivers, according to a new report from the Family Caregiver Institute and Family Caregiver Alliance. “This study is one of the first in the nation that we're aware of with this size and this diversity, consistent with the diversity of California along many dimensions,” explained co-principal investigator Heather M. Young “In general, Black, Hispanic and Native American caregivers spend more time providing care with fewer resources. The eleven CRCs serve diverse communities, and the information we now have can help them to prioritize outreach and service for those most in need.” Young observed that COVID-19 increased caregiver stress, including changes in health, financial struggles, food and housing insecurity, alterations in employment demands, social distancing and home schooling for children. Among other findings: 72.9% spent more than 40 hours per week providing care; 35% reported worsening health over the past year; and 35% were lonely. Adding significantly to the Centers’ resources has been CareNav, an interactive platform to promote uniform quality and availability of core services statewide. CareNav™ includes a caregiver assessment, a record of CRC services provided, consumer information, and the capacity to develop individualized care plans and tailored resources, securely. All 11 sites use a common assessment tool, allowing researchers to combine data and better understand caregivers as a group, rather than having different measures at each of the sites. To hear more from the lead researchers, watch this video. For additional perspective from the Family Caregiver Alliance's executive director Kathy Kelly, click here. 

Assisted Dying: California has eased, slightly, its requirements for legally assisted dying, shortening the waiting period to receive required medications from 15 days to two. California is not alone, reports the New York Times’ Paula Span. “Similar bills died during the most recent legislative sessions in Hawaii, Washington and Vermont, but will be reintroduced. And in many states — including Delaware, Indiana, North Carolina, Virginia, Pennsylvania and Arizona — new aid-in-dying bills, if passed, will ease requirements for patients or expand the kinds of providers who may participate.”

But complexities abound. Two lawsuits are underway: one in Oregon challenges residency provisions that limit access to a state’s permissive medication statute; the other, a class-action, seeks to ban self-administration requirements. Residency requirements for aid in dying are alleged to violate two sections of the U.S. Constitution, one barring state laws that limit the ability of a nonresident to access medical care, and one prohibiting state laws that burden interstate commerce.

A separate federal class action suit claims that California’s law, which like others requires patients to self-administer the drugs that end their lives, discriminates against patients dying of neurodegenerative diseases that make it physically impossible to take medication without assistance. The plaintiffs, charging violation of the Americans With Disabilities Act and California law, include patients with multiple sclerosis and A.L.S., also known as Lou Gehrig’s disease, and their doctors.”

As Kaiser Health News’ Bernard J. Wolfson writes, “Medical aid in dying straddles the same political fault line as abortion and has long been opposed by many religious institutions and anti-abortion groups. It has also encountered resistance from some disability rights organizations that claim it belittles the lives of those who are physically dependent on others.”

The trickiest questions, opines the Economist, “arise when an individual’s capacity to make an informed choice is in doubt. Some people with mental disorders have suicidal thoughts that come and go. For them, the bar should be very high. Doctors must be sure they can distinguish between a temporary mental-health crisis and a sustained, considered wish to die. If in doubt, they should offer treatment aimed at helping the patient to live. Dementia poses the hardest problem of all. No rules in this area are perfect. All should be subject to revision in the light of new evidence about how they work in practice, or to take account of medical advances.

“The overall principle—that individuals are entitled to choose how they end their lives—is, we believe, a sound one. The evidence from countries that allow assisted dying is that abuses remain largely hypothetical, whereas the benefits are real and substantial. It relieves suffering and restores a measure of dignity to people at the end of their lives.”

The new year is slated to bring some welcome news to millions of Americans with mild to moderate hearing loss: the availability of over-the-counter hearing aids in stores or online without a prescription or medical examination. An FDA approved rule to that effect should be finalized in time for purchases to begin in the fall.

“Currently,” AARP bloggers Lina Walker and Claire Noel-Miller, write, “people typically need a hearing exam, a prescription from a doctor for a hearing aid, and a visit to an audiologist to get their device fitted to their ear. In addition, hearing aids can only be purchased through a hearing care professional’s office or in specialized stores. While this approach may still be necessary for some, having the option to purchase over-the-counter hearing aids will lower barriers to access and encourage greater availability of more affordable options through increased competition in the hearing aid market.

“At the same time, for many older adults with more severe hearing loss, most of whom tend to be in their 70s and 80s, an over-the-counter solution isn’t enough. The Build Back Better Act would expand traditional Medicare coverage to include a new hearing benefit under Medicare Part B (outpatient coverage), starting in 2023. Traditional Medicare would cover hearing exams, management, and treatment by audiologists. In addition, the new benefit would include coverage of hearing aids for people diagnosed with moderately severe, severe or profound hearing loss. Medicare would help pay for one hearing aid for each ear, every five years.”

Strong bipartisan support for permanent access to telehealth services was evident as House Ways and Means Health Subcommittee members introduced the Telehealth Extension Act. The legislation, writes mHealthIntelligence’s Victoria Bailey, “aims to lift geographic and site restrictions to allow Medicare beneficiaries to access telehealth no matter where they live. Certain policies limit telehealth access to patients living in rural areas and providers practicing in specific clinics. Waivers helped lift these restrictions during the COVID-19 pandemic, but they are set to expire when the public health emergency ends.

Permanently eliminating these restrictions would make it easier for all Americans to access telehealth services regardless of their location, according to a press release issued by subcommittee chair Rep. Lloyd Doggett’s office. The bill also incorporates recommendations from the Medicare Payment Advisory Commission (MedPAC) and would extend select COVID-19 emergency telehealth waivers for two years. The waivers permit Medicare coverage for telehealth services provided by specialty providers including speech language pathologists, occupational therapists, and physical therapists. Further, the temporary extension would allow critical access hospitals to keep providing outpatient behavioral therapy via telehealth and would ensure proper reimbursement for audio-only telehealth services.”

While a major infusion of federal funds into HCBS remains bottled up in the Biden Build Back Better imbroglio, CMS has moved to loosen the strings on existing state Medicaid financial eligibility standards. The gist of the December guidance, Justice and Aging reports: first, “In order to make it easier to qualify financially for HCBS, a state Medicaid program may choose to disregard specified amounts of an applicant’s income and/or resources; and, second, any disregard can be limited to apply only to HCBS (and not also to nursing facility services), or only to certain HCBS programs or benefits.

A state’s authority to apply disregards is broad. As a practical matter, a principal benefit to states is the discretion to limit disregards to certain amounts, categories of beneficiaries, programs, or HCBS benefits. A disregard for only HCBS, for example, is less expensive to a state than extending the disregard to both HCBS and nursing facility services.

The guidance gives several examples of allowable disregards. For example, a state could implement a disregard for persons who need HCBS waiver services but are currently on a waiver wait list. This disregard could allow these persons to receive non-waiver Medicaid services while waiting for an HCBS slot to open up. As another example, a disregard could allow a state to offer HCBS coverage to a married person without considering a spouse’s resources. Some states historically had followed this procedure—and had wanted to continue it—but until now have been required to consider both spouses’ resources under Medicaid’s spousal impoverishment protections.”

With interactive technology offering ever more enticing social connectivity opportunities, their application to seniors’ loneliness and isolation is expanding rapidly. In March, the Washington Post’s Matt Fuchs writes, “Sonja Bauman, 39, used an online platform called Papa, which offers ‘family on demand,’ to meet Mariela Florez, an 83-year-old retiree. Despite living with her adult children, Florez was bored and lonely when they left for work. Her recoveries from a stroke and broken hip were going slowly. Bauman began visiting twice per week; they take walks, strengthening Florez’s hip, and play games like Connect Four for mental stimulation. ‘It’s very important for me so I don’t feel lonely all day long,’ said Florez.

“Papa is one of a growing number of tech approaches to the problem of societal isolation among seniors, which has been exacerbated by the pandemic. Some of these services focus especially on deepening social connections between the generations — relationships that support the health of older and younger people alike. ‘We’ve evolved into a community for older adults who want to give back to the world,’ said Dana Griffin, CEO of Eldera, a site for video conversations between children and mentors age 60 and up. Other new tools for connection take the form of virtual reality apps (see Post article).”

Moving from social interaction to surveillance, reports Kaiser Health News’ Sofie Kodner, technological advances are also affecting how family caregivers “manage the relentless task of looking out for older adults with cognitive decline. Setting up an extensive monitoring system can be expensive — Weathers-Jablonski’s system from People Power Co. costs $299 for the hardware and $40 a month for use of the app. With scores of companies selling such gear, including SentryTell and Caregiver Smart Solutions, they are readily available to people who can pay out-of-pocket. But that’s not an option for everyone. While the technology is in line with President Biden’s plan to direct billions of dollars toward helping older and disabled Americans live more independently at home, the costs of such systems aren’t always covered by private insurers and rarely by Medicare or Medicaid. The systems do make it possible for many older people to stay in their home, which can cost them far less than institutional care.”

Adds the Washington Post’s Heather Kelly: “The devices, many of which grew out of security and surveillance systems, can take privacy and control away from a population that is less likely to know how to manage the technology themselves. The idea of using tech to help people as they age is not a problem, say experts, but how it’s designed, used and communicated can be. Done wrong or without consent, it is one-way surveillance that can lead to neglect. Done right, it can help aging people be more independent.

In Arizona, write New York Times investigative reporters, “a nursing home resident was sexually assaulted in the dining room. In Minnesota, a woman caught Covid-19 after workers moved a coughing resident into her room. And in Texas, a woman with dementia was found in her nursing home’s parking lot, lying in a pool of blood. State inspectors determined that all three homes had endangered residents and violated federal regulations. Yet the federal government didn’t report the incidents to the public or factor them into its influential ratings system. The homes kept their glowing grades.

“What will victory over this virus look like? I used to think that I would care for one final coronavirus patient, but I realize now that is not the case. This virus will become endemic, as some viruses do, and when each winter comes, I will see a few patients with Covid-19 who are sick enough to wind up in the intensive care unit, the unvaccinated or the immune-compromised or the unlucky. We will care for them using the protocols that we have honed over the past two years. No one will react with panic or fear or anger; it will be expected, as it is with influenza or a host of other respiratory viruses. That is not where we are yet. But we will get there.” (Dr. Daniela J. Lamas, the New York Times)

The California Caregiver Resource Centers (CRCs) provide regular educational and informative online events open to all family caregivers in California. This is a coordinated effort to offer a wide range of free programs in multiple languages and with topics of interest to family caregivers. You can view the calendar on the CRC website here.

¿Qué Pasa? boletín is a bimonthly newsletter from FCA for Spanish-speaking caregivers. Click here to subscribe. FCA is unique among national caregiver organizations by providing direct support to family and friend caregivers as the Bay Area Caregiver Resource Center, and is one of 11 caregiver resource centers in California.

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

Contributor: Kathleen Kelly (executive director)

Layout: Francesca Pera (communications specialist)

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