— Judith Graham, Kaiser Health News

— John Leland, writing in the New York Times about a

A very fresh look at patient safety issues has appeared 20 years after the Institute of Medicine’s seminal report To Err Is Human: Building a Safer Health System. In a 41-page document and related assessment tools and resource guide, 27 national organizations have jointly produced Safer Together: A National Action Plan to Advance Patient Safety — a plan dedicated to all patients, families, and health care workers who have been impacted by preventable health care harm. Observes the co-chairs of the National Steering Committee (NSC) for Patient Safety: “It’s been impossible to ignore news and research that continue to show unacceptably high rates of preventable harm related to health care, for both patients and the workforce. And that was before the COVID-19 pandemic, which has highlighted even more the importance of focusing on patient and workforce safety and reducing preventable harm in every health care setting, including long-term care and care at home.” For Susan Reinhard, director of AARP’s Public Policy Institute and NSC Steering Committee member, the fact that patient and family engagement constitutes one of the four main “Safer Together” subject categories speaks volumes about the evolution of patient safety concern since the IOM’s 2000 report. “If you want to know one area of health care and long-term services and supports that has undergone a seismic philosophical shift in the last 20 years (just in the last decade, really),” Reinhard blogs, “look no further than family engagement. Twenty years after the publication of the IOM report, family caregiving is now understood to be a central piece of the solution in improving the safety of patients. The care recipient’s family (or friends, also encompassed in the term family caregiver) plays a prominent role in the National Action Plan, with a full five of the 17 Recommendations to Advance Patient Safety coming out of our Patient and Family Engagement work. When I look at those recommendations, I see many notable manifestations of the work of family caregiving experts and advocates, including AARP and the AARP Public Policy Institute. For one, the very notion of family caregivers being acknowledged as care-team partners right along with health care professionals — a notion underpinning all of those recommendations — lies at the heart of the Caregiver Advise Record Enable (CARE) Act, state legislation that responds to the needs of family caregivers. The legislation, now law in 43 states and counting, calls for health care professionals to identify and properly instruct family caregivers prior to individuals being released from the hospital. This approach is crucial to care recipients’ safety, particularly with family caregivers now being assigned complex-care tasks that were once the exclusive domain of trained health care professionals.”

“Long haulers, brain fog, Survivor Corp, long-haul COVID fighters: Such are some recent additions to the COVID-19 lexicon of the pandemic’s widening, lingering, and devastating effects on many of those contracting the virus. “The pandemic,” writes The Washington Post’s Kelsey Ables, “has spared no one from loneliness. The sick survive or die away from their loved ones. The healthy converse through computer screens, smile under face masks from six feet away. But for ‘long-haulers’ who have suffered COVID-19-related symptoms for 30-plus days, the isolation runs layers deep. They face doctors who don’t believe them; media that often ignore them; friends and family who don’t understand why they aren’t better; and a virus that, with each passing month, pushes them deeper into the unknown. Being a long-hauler means being ‘displaced,’ says Melanie Montano, 32, a New Jersey-based administrator for the Slack group. ‘We’re not dead but we’re not living.’”

“‘Recovery will be on the order of months and years, not days or weeks,’ Dr. E. Wesley Ely, co-director of the Critical Illness, Brain Dysfunction and Survivorship Center at Vanderbilt University Medical Center, told Kaiser Health News’ Judith Graham. ‘Most likely,’ he speculated, ‘a year after fighting the disease at least half of the critically ill older patients will not have fully recovered.’ The aftereffects of delirium — an acute, sudden change of consciousness and mental acuity — can complicate recovery from COVID-19. Seniors hospitalized for serious illness are susceptible to the often-unrecognized condition when they’re immobilized for a long time, isolated from family and friends, and given sedatives to ease agitation or narcotics for pain, among other contributing factors. In older adults, delirium is associated with a heightened risk of losing independence, developing dementia and dying. It can manifest as acute confusion and agitation or as uncharacteristic unresponsiveness and lethargy. ‘What we’re seeing with COVID-19 and older adults are rates of delirium in the 70% to 80% range,’ said Dr. Babar Khan, associate director of Indiana University’s Center for Aging Research at the Regenstrief Institute’”

Offering some relief and release from the daily torment, COVID 19 online support groups are springing up. To the long-haulers connecting online, The Washington Post’s Ables writes, “what matters is that they’re suffering, physically and psychologically. Claire Hastie describes the 23,000-person Facebook group, Long COVID Support Group, which she started in May, as a ‘virtual joining of hands.’ In the group’s early days, Hastie recalls, long before it was getting over 200 posts per day and 1,000-plus new members a week, a ‘highflying’ chief-executive-type man posted about how he could not bring himself to tell his family about his persistent symptoms and that the group was the only support he had. ‘It’s humbling that we’ve been able to provide this safe space for this “alpha male,” for want of a better phrase, to share such vulnerable information that he is not sharing with anyone else,’ says Hastie, who’s 48 and based in the United Kingdom. Alexandria, Virginia-based long-hauler Cynthia Adinig, 35, finds it difficult to even explain her symptoms to people who haven’t experienced them. ‘How do you tell friends you’re too hoarse for a phone call? Or in too much of a brain fog to type coherent messages? With fellow long-haulers, You can just say, “Hey, today I can’t spell,” and it’s a nonissue. It doesn’t come with a whole set of questions,’ she says. The intimacy and goodwill fostered in these groups can be hard to preserve as they grow into a virtual town. An early Facebook group, Survivor Corps, has ballooned to over 100,000 members. Another, Long Haul COVID Fighters, split into two ‘rounds’ according to how long members have been symptomatic. Smaller Facebook groups have also appeared. When Ryan Brown, 42, joined the 350-person Utah-specific group and shared a dermatologic problem with founder Lisa O’Brien, she pointed to several members who might be able to help off the top of her head. ‘She seems to know everybody’s ailments at one time or another. It’s pretty incredible.’”

“Although social media groups provide validation,” cautions The New York Times Emma Goldberg, “there is also some risk. Groups that do not moderate their content can contribute to the spread of misinformation when users share unverified medical advice. (Survivor Corps requires people to link to trustworthy sources, and Body Politic deploys volunteers to moderate posts.) Support group members also sometimes inadvertently reinforce one another’s fears through detailed discussion of their own medical experiences, according to Jo Daniels, a psychologist at the University of Bath and an author of a recent study on COVID-19 and mental health.” Meanwhile, “across the country,” reports The New York Times’ Anahad O’Connor, “dozens of hospitals have begun catering to recovering patients with specialized clinics for post-COVID care, which connect them to physical therapists, pulmonologists, psychologists and other specialists. In San Francisco, for example, patients who are discharged from UCSF Health are referred to the hospital’s specialized post-COVID Optimal Clinic, where they undergo an hour-long evaluation — done virtually — of their lung health, physical abilities, and cognitive and mental health. Then they undergo what the clinic’s founder, Dr. Lekshmi Santhosh, calls a ‘brain wellness check’ to look for signs of psychological distress. At Penn Medicine’s Post-COVID Assessment and Recovery Clinic in Philadelphia, many patients experience anxiety caused by their persistent shortness of breath. ‘For some, the anxiety can be so crippling that they are afraid to leave their homes,’ said Dr. Benjamin Abramoff, a co-founder of the clinic and assistant professor of clinical physical medicine and rehabilitation. Patients are screened for a wide range of health issues and then enrolled in a program that incorporates physical and pulmonary therapy to build up their strength and endurance. They also learn techniques to manage their breathing and anxiety. Dr. Abramoff said there has been a lot of focus on ‘acute’ treatments for patients in the hospital, but not enough attention on treating patients over the long term.”

Previewed in the last issue of Caregiving Policy Digest, the Coronavirus Commission on Safety and Quality in Nursing Homes issued its final report in mid-September. The document, the Center for Medicare Advocacy summarized, “identifies 27 recommendations and more than 100 action steps that are organized into 10 themes. The recommendations address testing and screening, equipment and personal protective equipment, cohorting, visitation, communication, workforce ecosystem, workforce system, technical assistance and quality improvement, facilities, and data. Mark Parkinson, the head of the American Health Care Association, the trade group representing for-profit nursing homes, welcomed the report, reported The Washington Post’s Will Englund. “His organization has been energetically lobbying for more federal emergency assistance for nursing homes, on top of the $5 billion already dispensed. ‘We are pleased to see the commission acknowledge,’ Parkinson said, ‘what we have been saying from the beginning — there must be shared responsibility with public health officials prioritizing our residents in long-term care and helping facilities acquire necessary resources to combat this global pandemic. As we prepare for a potential rise in cases this fall, we must arm nursing homes and other long-term care facilities with a steady stream of resources to ensure they have adequate tests, personal protective equipment and staff support.’” For its part, CMA says, the report is “too generous to nursing facilities and the federal government. It essentially treats nursing facilities as having no responsibility for the tens of thousands of resident and staff deaths. Facilities are not blameless when research studies document that facilities with better staffing levels have fewer cases and fewer deaths; when some facilities have successfully contained COVID-19 and limited its spread; and when some facilities have never had any COVID-19 cases at all.” Furthermore, added Lori Smetanka, Commission member and executive director of the National Consumer Voice for Quality Long-Term Care, “The report does not go far enough in requiring action on the part of nursing homes, nor in emphasizing the importance of CMS’s oversight role in holding facilities accountable for meeting standards. None of the recommendations relate to survey activities, complaint investigations, or emphasizing adherence to quality care standards. For example, while the report recognizes the need for addressing staffing levels, staff training, workforce shortages, and working conditions, the recommendations around workforce and staffing issues do not require immediate action by CMS or nursing homes to address the critical issues that exist.”

The severe interpersonal deprivations brought on by the pandemic — manifested searingly in the early spring sudden lockout of nursing home family caregivers — received some welcome easing in CMS’s mid-September announcement of revised SNF visitation rules. As summarized by Skilled Nursing News’ Alex Spanko, “the new rules compel nursing homes to facilitate indoor and/or outdoor visits as long as each facility meets certain safety criteria — generally based on the level of COVID-19 positives in the surrounding community, and the lack of active outbreaks within the building. Operators will face citations and fines for non-compliance with the regulations, with CMS in particular citing the psychosocial toll that the visitation bans have taken on both vulnerable nursing home residents and their families. ‘CMS understands that nursing home residents derive value from the physical, emotional, and spiritual support they receive through visitation from family and friends,’ CMS official David Wright wrote in a memo laying out the rules.”

Editor’s Note: Several advocacy groups conducted a detailed webinar regarding the latest visitation rules October 2. The webinar slides and full one-hour recording are available here.

LeadingAge, which represents not-for-profit health and social service providers, has issued a new call to pay all direct care workers a living wage. In a 50-page report, LeadingAge observes that “every day some 3.5 million direct care workers go to work in residential care settings and homes to provide care for some of society’s most vulnerable members — people who are older, live with disabilities, or have complex medical needs. Despite the importance of direct care workers to our nation’s health and economy, however, direct care work remains undervalued and poorly compensated. Low pay, combined with difficult working conditions, leads to chronic staffing shortages in the direct care field. As a result, productivity and quality of care are lower than they could or should be. Low pay also contributes to financial instability for direct care workers, their families, and the communities in which they live. Raising pay so all direct care workers earn a living wage would result in: a modest overall price tag, few staffing shortages, and lower turnover and higher productivity.”

To borrow from a classic Peter, Paul and Mary song, where have all the rehab patients gone? Home, not SNFs, many of them. So reports AARP’s Andrew Soergel: “The coronavirus pandemic,” he writes, “has made nursing homes and the rehab centers that are attached to many of them less desirable places to recover after hospitalizations. ‘People want more than ever now to stay out of the nursing home,’ says Rachel Werner, M.D., executive director of the Leonard Davis Institute of Health Economics at the University of Pennsylvania. ‘The dangers and potential downsides have really been laid out to public viewing.’ The result is that at-home recoveries appear to be booming. Hospital discharge data analyzed by the Avalere Health consulting firm showed overall inpatient hospital discharges were down 12.7 percent in June from a year prior, as many patients postponed elective procedures. But discharges to home health services were up 4.6 percent, while discharges to skilled nursing facilities were down more than 25 percent, helping feed the surge in at-home recoveries. Medicare has relaxed guidelines for the kinds of patients eligible for services that make rehab at home possible, and many insurance plans now cover those services. ‘A lot of people don't realize, when you check into a hospital, you really need to check out what the discharge plan will be,’ says Elaine Ryan, vice president for state advocacy and strategy at AARP. ‘When you’re discharged, the question is: Can you receive in-home rehabilitation? And the answer is yes. You don’t have to go into those centers.’ That’s a problem for nursing homes, which for decades have depended on Medicare payments from short-term rehab patients. ‘For many, many years we’ve wanted to do virtual care and remote monitoring in new and innovative ways. But there have been some obstacles and barriers and regulations,’ says April Vogelsang, system senior vice president at the Illinois-based Carle Foundation Hospital & Health Alliance Medical Plans. ‘COVID has really lifted that and allowed us to implement things within days or weeks instead of years.’”

Further evidence of the expanding role of telehealth in the delivery of health care services has been emerging from a variety of sources including CMS and research and policy entities. For its part CMS has announced the addition of 11 new telehealth services to the list of Medicare-covered care, bringing the total to 144 covered services. At the same time:

 

Medicaid enrollment has been soaring as the pandemic wipes out jobs along with the health insurance coverage that came with them. The Washington Post’s Amy Goldstein focuses on Nevada, one of the hardest hit states in terms of job losses and the enrollment spike. “By the most recent count, the roster of Nevadans on Medicaid has climbed from fewer than 644,000 in February, the month before the state reported its first case of COVID-19 to about 731,000 through August. The spiraling demand for Medicaid is colliding with a diminished ability by the state to pay for it. With Nevada confronting a $1.2 billion deficit and a requirement to balance its budget, the legislature has taken steps to slow the program’s spending — notably, curbing payments to doctors, hospitals and others who care for Medicaid patients to save $53 million through next summer. That six percent rate cut is the largest so far in the nation. ‘Nevada is the extreme of what’s happening around the country,’ said Aviva Aron-Dine, vice president for health policy at the Center on Budget and Policy Priorities, who has been tracking Medicaid in the pandemic. ‘The fear is that it’s the leading edge.’”

With Medicaid expansion one of the critical elements of the national debate over the future of the Affordable Care Act and health services reform, the long simmering issue of Medicaid enrollee work requirements continues to generate news. While still awaiting word on whether the Supreme Court will review a Circuit Court’s invalidation of the original Arkansas work requirement, CMS has now approved a Nebraska plan to offer extra benefits to newly eligible Medicaid beneficiaries if they agree to follow work and wellness requirements. As Modern Healthcare’s Michael Brady reports, “The ‘prime’ tier will allow expansion enrollees to receive the same Medicaid benefits as Nebraska's traditional Medicaid population if they fulfill community engagement, personal responsibility and wellness activities. The ‘basic’ package would cover basic health services and prescription drugs but drop coverage for dental, vision and over-the-counter drugs. Medicaid expansion enrollees would receive basic benefits even if they don't fulfill any of the activities required for prime benefits. In the state’s proposal, Nebraska officials said almost a third of new enrollees would likely qualify for basic benefits only.” In light of the Circuit Court’s opinion stressing the need for state waivers to promote Medicaid objectives, CMS’ Nebraska approval letter takes great pains to paint the state’s plan as a path towards that end. In its approval letter, CMS said Nebraska’s demonstration is likely to promote Medicaid’s objectives because it: allows the expansion population to access additional benefits; tests whether the ability to opt into additional services lowers program costs; and tests whether the incentive structure improves health outcomes. Nebraska will have to develop a plan to evaluate the demonstration and have CMS approve it before the wellness and personal responsibility requirements take effect April 1. The work requirements go into effect in 2022. Meanwhile, Brady observes, “according to a recent Health Affairs study, Arkansas’ Medicaid work requirement for people age 30-49 did not increase employment. Researchers also found that most of Arkansas’ 2018 Medicaid coverage losses — about 18,000 people lost coverage after the work requirement went into effect — reversed after a federal judge shut down the state’s work requirement in April 2019. People who lost Medicaid coverage were more likely to report they had serious problems paying medical debt, put off necessary care or delay taking their medications because of cost.”

Changes in how Americans receive treatment for renal disease have been on HHS Sec. Alex Lazar’s agenda throughout his tenure. The department has now moved that agenda forward in a final regulation published in mid-September. Under the rule, writes MedPageToday’s Joyce Frieden, on January 1, 2021, “Medicare will implement a ‘mandatory model’ called the ESRD Treatment Choices (ETC) model. ‘About a third of all ESRD patients will be enrolled “in a system,”’Azar told reporters, ‘that rewards more convenient, comfortable options like home dialysis and incentivizes rather than discourages transplants. The rule also significantly expands support for living organ donation to include compensation for lost wages, child care, and elder care, because no generous American who wants to save a life by becoming a kidney donor should face barriers to doing so.’ He added that he had seen many kidney care challenges firsthand through his father, who died from chronic kidney disease in April. ‘I saw the progression of chronic kidney disease, and I saw how draining center-based dialysis could be. I also saw the unbelievable generosity of the living donor who gave him his kidney, but also the challenges that the living donor faced because of bureaucratic rules and restrictions.’ CMS Administrator Seema Verma noted that ‘the model increases home dialysis payment rates from 2021 to 2023 to incentivize a change. We will also increase or decrease the amount we pay dialysis facilities and nephrologists starting in July 2022 based on their relative performance increasing rates of home dialysis, transplant wait-listing, and living donor transplants. In addition, we’re expanding access to kidney disease education for beneficiaries by letting nephrologists and providers create a curriculum tailored to their patients. The payment model will be tested with about 30% of treatment providers and will affect an expected 120,000 beneficiaries with ESRD. CMS and the Health Resources and Services Administration also will operate a learning collaborative bringing together organ procurement organizations, transplant centers, large hospitals, and other stakeholders to share best practices for increasing availability and use of donor kidneys.’”

For a while it looked as though something might be done about “surprise” medical bills, but, as The New York Times Sarah Kliff reports, “although the plan to ban these kinds of bills was popular and bipartisan, and was backed by the White House, it fell apart at the 11th hour after private-equity firms, which own many of the medical providers that deliver surprise bills, poured millions into advertisements opposing the plan. Committee chairs squabbled over jurisdictional issues and postponed the issue. Then the pandemic struck. Air ambulance bills are often the most costly type of surprise medical bills. Dr. Karan Chhabra, a surgical resident at Brigham and Women’s Hospital, found a median charge of more than $38,000, leaving the typical patient responsible for more than $21,000 after the insurance payout. The prices are quickly increasing, too, rising about 15 percent each year since 2015. In recent years, numerous states have enacted laws that restrict surprise out-of-network billing similar to the one Congress nearly passed. But states cannot regulate air ambulance fees. Ground ambulances, another source of surprise bills for coronavirus patients, have also largely escaped billing regulations. California passed legislation in 2017 that barred most types of surprise medical bills, but it excluded ambulances. The congressional deal that nearly passed also did not include ambulances. Legislators may be reluctant to regulate ambulances because many are run by local and municipal governments, which rely on the charges for revenue.” Kaiser Health News’ Laura Ungar observes that “the COVID-19 pandemic has prompted temporary changes that could help some patients. For instance, ambulance services that received federal money from the CARES Act Provider Relief Fund aren’t allowed to charge presumptive or confirmed coronavirus patients the balance remaining on bills after insurance coverage kicks in. Also during the pandemic, the Centers for Medicare & Medicaid Services is letting Medicare pay for ambulance trips to destinations besides hospitals, such as doctors’ offices or urgent care centers equipped to treat recipients’ illnesses or injuries. But researchers and patient advocates said consumers need more, and lasting, protections. ‘You call 911. You need an ambulance. You can’t really shop around for it,’ said Christopher Garmon, an assistant professor at the University of Missouri-Kansas City.”

CMS has announced the availability of up to $165 million in supplemental funding to states currently operating Money Follows the Person (MFP) demonstration programs. This funding will help state Medicaid programs jump-start efforts to transition individuals with disabilities and older adults from institutions and nursing facilities to home and community-based settings of their choosing. “The tragic devastation wrought by the coronavirus on nursing home residents exposes America’s over-reliance on institutional long-term care facilities,” said Administrator Seema Verma. “Residential care will always be an essential part of the care continuum, but our goal must always be to give residents options that help keep our loved ones in their own homes and communities for as long as possible. Home and community-based care is not only frequently more cost effective, but is preferred by seniors and adults with disabilities seeking to maintain the dignity of independent living. This new federal investment will help states get our loved ones back home.” Each state is eligible to receive up to $5 million in supplemental funding for planning and capacity building activities to accelerate long-term care system transformation design and implementation, and to expand HCBS capacity.

The Veterans Affairs department is expanding its Program of Comprehensive Assistance for Family Caregivers (PCAFC). Previously, the VA states, the department required a connection between the need for personal care services and the qualifying serious injury. In addition to expanding to pre-1975 era Veterans, the enhanced PCAFC eliminates the need for such a connection. It also redefines serious injury to now include any service-connected disability — regardless of whether it resulted from an injury, illness or disease. Veterans and caregivers can find their local Caregiver Support Coordinator by calling the Caregiver Support Line at 1-855-260-3274 or using the Caregiver Support Coordinator locator tool at here.

AARP’s Public Policy Institute, in collaboration with the Scripps Gerontology Center at Miami University in Ohio, has created the Nursing Home COVID-19 Dashboard, a comprehensive monthly analysis of the infiltration of the virus into nursing homes and its impact on residents and staff, with the goal of identifying specific areas of concern at the national and state levels in a timely manner. The effort includes state-by-state fact sheets. AARP’ first analysis of the data indicates:

Adding to the emerging breakdown of COVID-19’s destructive force, the Kaiser Family Foundation has looked at whether nursing homes with relatively high shares of Black and Hispanic residents experienced a disproportionate burden of cases and deaths compared to those with lower shares of Black and Hispanic residents as well as a higher share of White residents. KFF’s finding: In 19 of the 21 states for which there were sufficient data, nursing homes with a relatively high share of Black or Hispanic residents were more likely to report one or more deaths than other nursing homes in the state. In some instances, these differences were relatively large, some with a gap of 20 percentage points or more. For example, in Florida, the share of nursing homes reporting one or more death due to COVID-19 was substantially higher among nursing homes with a high share of Hispanic residents than in other nursing homes (85% vs. 63%). A similar gap between nursing homes with high and low shares of Black residents was observed in five states (Illinois, Maryland, Michigan, New York, and Pennsylvania), where the gap in the share that reported at least one death was equal to or exceeded 20 percentage points. In Michigan, for example, 64% of nursing homes with a high share of Black residents reported 1 or more deaths, as compared to 35% in nursing homes with a low share of Black residents. The gap, however, was not as pronounced in all states; in Alabama, Florida, and Ohio, for example, it was fewer than 10 percentage points.

“The great pandemic of our era, COVID-19, has become the single most discussed topic among anyone with even a fleeting connection to the health care industry. At the same time, another massive epidemic, of loneliness, often goes unaddressed.” So write the authors of a Generations Journal article reviewing a number of efforts underway to reduce loneliness and isolation in older adults. Their major focus is on the “togetherness” program established by the CareMore and Aspire health care delivery system that provides care to more than 180,000 high risk, high need Medicare and Medicaid patients. “Patients are referred to the Togetherness program by an integrated care team and they can also self-refer. Recently the program has been extended to caregivers of patients. Based on this information, Social Care Partners (SCPs) determine whether patients who become members of the Togetherness program are at high-, medium-, or low-risk for loneliness. High-risk members typically have no social support system as well as complex health and psychosocial conditions such as congestive heart failure, cancer, and depression. Interventions are individualized and include connecting members with community resources, mental health and substance use disorder supports and services, and other health care services to address their barriers to socialization. At the core of the Togetherness program is the “Phone Pal” program, in which employee volunteers make weekly calls to older participants, trying to match Phone Pals by shared interests. Since the launch of Togetherness three years ago, more than 3,700 patients have enrolled in the program. Nearly 600 employee Phone Pals and Social Care Partners have made approximately 130,000 calls to members and more than 7,000 connections to community resources. A recent study compared the outcomes of 1,000 enrolled Togetherness participants to those of patients who were referred to the program but were not enrolled during the period studied. Lower rates of depression and loneliness were observed among program participants. The latest data also show 43 percent lower emergency room use and eight percent lower hospital admissions.”

Earlier this year the National Academy of Medicine (NAM) issued a major report titled Social Isolation and Loneliness in Older Adults: Opportunities for the Health Care System. The report appeared just before the onset of COVID 19; three of its major contributors have now addressed the “changed world” that the virus has spawned and offered a preliminary outline of proposed research priorities to inform strategies to mitigate the health effects of social isolation and loneliness during the COVID-19 pandemic and beyond. “We propose,” they write, five overarching questions to guide thinking about future priorities:

NAM is presenting the second of two webinars on advance care planning on November 2 from 12 noon to 12:30 p.m. (ET). Full registration information and the webinar agenda are available here.

Researchers from Chicago’s Northwestern Medicine Health System have punctuated the post-COVID 19 “long hauler” experiences discussed above with results from the largest study to date of neurological symptoms among coronavirus patients in an American hospital system. The study looked at the records of the first 509 coronavirus patients hospitalized, from March 5 to April 6, at 10 hospitals in the Northwestern Medicine health system in the Chicago area. After they were discharged, The New York Times’ Pam Belluck reports, “only 32 percent of the patients with altered mental function were able to handle routine daily activities like cooking and paying bills. In contrast, 89 percent of patients without altered mental function were able to manage such activities without assistance. Patients with altered mental function — the medical term is encephalopathy — were also nearly seven times as likely to die as those who did not have that type of problem. The researchers did not identify a cause for the encephalopathy, which can occur with other diseases, especially in older patients, and can be triggered by several different factors including inflammation and effects on blood circulation. There is very little evidence so far that the virus directly attacks brain cells, and most experts say neurological effects are probably triggered by inflammatory and immune system responses that often affect other organs, as well as the brain. Younger patients were more likely to develop neurological symptoms over all, except for encephalopathy, which was more common in older people. The researchers speculated that the younger people might have been more likely to seek hospital care for symptoms like muscle pain, headache or disease, or that doctors paid more attention to those symptoms in younger people because they were less worried about their risk of respiratory failure.”

In over 500 pages of design material and case studies, Alzheimer’s Disease International urges that dementia “be more overtly recognized by governments globally as a disability, including as part of national dementia plans, to help to ensure that the therapeutic benefits of good dementia design are felt by people living with dementia at home, in residential and daycare facilities, hospitals and public buildings and spaces. ADI’s chief executive, Paola Barbarino, says that dementia design provides an opportunity to adapt built environments in the same way that physical disability design has led to great innovation. ‘We need to apply design guidelines and principles for people living with dementia in the same way as design guidelines are provided for people living with a physical disability. When I was in my first job, I remember people saying that accessible lifts and ramps were impossible to install in old buildings but look at it now! If we can cater for those with visible disabilities, how can we refuse to cater for those with invisible disabilities? We need to start working now, with new builds, and consider this new way of thinking at planning stage, and also look at cost effective retrofit options for older buildings.’ Dementia design does not have to be a costly exercise and can be as simple as considering things like carpets and décor, the removal of hazards, reducing stimulation, clear wayfinding — measures that can reduce anxiety and agitation and improve social interactions. ‘It comes down to simple things. I recall during a site inspection of a venue for a conference, the black areas on colorful carpets could look like holes in the floor, people living with dementia might walk around them as they could be worried of falling into them. Things like mirrors on the walls can be an issue, as people with dementia can be disoriented by seeing their own reflection, especially at night. Design is effectively a non-pharmacological intervention, adding to the number of things we can do — in absence of a cure — to make the lives of those living with the condition easier and more fulfilling.’ Co-author of the World Alzheimer’s Report 2000 Richard Fleming adds, ‘We need more architects and designers who are switched on to the challenges of designing for people living with dementia. This means that they should be introduced to them in their training when they are looking for areas that inspire them. Designing for people living with dementia should be made an attractive option in the curriculum of every school of architecture and design.’”

Researchers led by University of Pittsburgh psychiatrist Richard Schulz have published an extensive synthesis of the literature on the impact of caregiving and intervention strategies for supporting caregivers. Schulz and other experts, writes The Washington Post’s Katherine Ellison, say that “other developed nations, including Germany, Japan and the Scandinavian countries, do a significantly better job than the United States in supporting family caregivers. A 2007 study by the AARP Public Policy Institute found that Germany’s universal health benefits protect families from out-of-pocket expenses that can be catastrophic for Americans. Germany’s family caregivers can count on a lot more direct support, including up to four weeks of respite per year and social security credits that protect future pensions. Germany, Norway, Sweden and several other industrialized countries even pay family members to be caregivers, which the United States will do only once the family is sufficiently impoverished to qualify for Medicaid. Schulz says that the most effective approach is to provide a comprehensive program offering caregivers skill-building workshops, stress-relief options and regular communication with health experts.

A leading example is a program called REACH (Resources for Enhancing Alzheimer’s Caregiver Health), which began in 1995 in six cities as a research effort. Studies show that its broad approach, later modified to become REACH II, improves the emotional and physical well-being of people who care for loved ones with dementia. It also improves their skill at managing loved ones’ stressful behaviors. REACH II has been adopted by several states, as well as the VA and the Indian Health Service. While that signifies some progress, Schulz points out that no comprehensive program for caregivers has been formally integrated into the health system on a national level.”

Editor’s Note: See more about the REACH program in the Latest news from Best Practice Caregiving in the following FCA Announcements section.

Some encouraging news about caregiving programs comes from the Center for Health Care Strategies (CHCS). Researchers looked at efforts in six states: Alabama, Idaho, Iowa, New Hampshire, South Carolina, and Virginia. Examples of the state’s efforts ranged across four elements: prioritizing cross-sector engagement; identifying leadership champions; collaborating on shared goals; and establishing robust data collection and exchange. “The importance of breaking down silos and working in partnership is of paramount importance to this work,” the authors conclude. “States reported their desire to continue to collaborate across state agencies and community organizations, knowing how much more can be done in partnership versus individually. Furthermore, the collaboration does not have to stop within a state — several states shared how invaluable it is to learn from other states that are grappling with the same challenges, and recommended trying to find opportunities to connect across state lines. The six states highlighted in this brief have forged a path ahead in making incremental progress toward improving family caregiving services and supports in their communities. Continuing to build and strengthen partnerships across state agencies, community organizations, the private sector, and the family caregiver community will ensure a much-needed robust support system for family caregivers moving forward.”

Kathleen Kelly, FCA’s executive director, has been selected with 99 others — including director of caregiving for AARP’s Public Policy Institute, Rita Choula, and Atlas of Caregiving project director, Rajiv Mehta — for the first-of-its-kind Care 100 list from The Holding Co. (“a lab to redesign how we care for each other in the 21st century” in collaboration with Pivotal Ventures and IDEO). To view the list visit care100list.com.

We’re excited to announce that we're accepting applications for this year’s Innovations in Alzheimer's Caregiving Awards. Now in its 13th year, the Awards spotlight innovative programs in three categories: Creative Expression, Diverse/Multicultural Communities, and Public Policy. One award of $20,000 will be given in each category.

The annual Innovations in Alzheimer’s Caregiving Awards program is made possible with support from The Rosalinde and Arthur Gilbert Foundation and the Helen Daniels Bader Fund, a Bader Philanthropy. Please note NEW deadline: 5 p.m. Pacific Time on Monday, November 16, 2020.

The latest Best Practice Caregiving (BPC) newsletter highlights the REACH Community dementia caregiving program, and offers details about the research aspect of all programs included in the resource.

To read the October newsletter, click here.

BPC is a web-based database developed for organizations that serve family and friend caregivers of those living with dementia. With more than 40 proven, vetted dementia caregiving programs, BPC is a rich resource for organizations looking to identify, compare and adopt best-fit programs. BPC is a collaboration between FCA,  Benjamin Rose Institute on Aging, and the The Gerontological Society of America, and was funded by The John A. Hartford Foundation, Archstone Foundation, and RFF Foundation for Aging. To learn more about this exciting new resource, visit bpc.caregiver.org and check out a recording of a webinar featuring leaders from FCA, Benjamin Rose Institute on Aging and The John A. Hartford Foundation. Click here. Please note that registration is required to view the recording.

Seeking your feedback. If you’ve already had a chance to use Best Practice Caregiving, we’d like to get your feedback on the resource. Please go to bpc.caregiver.org and click on the Survey link in the upper-right corner.

Join Family Caregiver Alliance (FCA) and the California Caregiver Resource Centers for a free online event for California caregivers in celebration of National Family Caregivers Month. Learn more about caregiving, how to find resources for your specific situation, and how to make sure you care for yourself in the process.

When: Thursday, November 19, 4 p.m. to 6 p.m. (Pacific Time)

Register: Click here

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

Contributor: Kathleen Kelly (executive director)

Layout: Francesca Pera (communications specialist)

Send your feedback and/or questions to [email protected] or [email protected].

Follow Family Caregiver Alliance / National Center on Caregiving @CaregiverAlly

and Executive Director Kathleen Kelly @KKellyFCA.

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