Vol. 25, No. 6 | End-of-Year 2023

At Year’s End: A Look Back 

The end of a year brings stock-taking, balance sheets, the best of this and that lists, all manner of predictions for the new year and copious wish lists. The end of 2023 brings us to the cusp of a momentous election year along with a growing sense of suspended animation in the political and policymaking spheres; for caregiving and caregivers the end-of-year balance sheet includes the proverbial assortment of welcome advances and disappointing setbacks. 

Some good news first: 

• An Alzheimer’s Disease Breakthrough (perhaps): 2023 saw the FDA greenlight the first anti-amyloid drug, Leqembi, for early-stage AD and signal approval for a second in the near future. The approval came with fairly stringent prescription, pretesting and post onset monitoring requirements. 

• Nursing home reforms: In the wake of Covid-19's disastrous impact on nursing home residents, 2023 saw the publication of proposed regulations aimed at improving the quality and quantity of long-term care staffing. Criticized by both industry representatives–too onerous–and patient advocacy groups–too lax–the proposal generated thousands of comments; CMS indicated it would finalize new standards in 2024. 

• A national caregiving strategy: in 2022 the RAISE Act’s Advisory Council delivered a lengthy and comprehensive compendium of goals and implementation opportunities to lessen caregivers’ struggle to maintain their hold on daily stability. The report has served as an impetus for efforts by governmental and private sector entities to turn the recommendations into concrete policies and programs. In September the Administration for Community Living (ACL), the focal point for federal caregiving initiatives, announced the award of $20 million to support implementation of the strategy. Through this initiative, ACL is awarding five four-year grants to support the development of state, community, and tribal family caregiver support programs aligned with the strategy’s principles and recommendations. 

As ACL’s administrator Allison Barkoff observed, “For decades, service providers have been struggling with a workforce shortage due to low pay, little respect, lack of benefits, and limited advancement opportunities. That shortage reached crisis levels during the pandemic. Today, some states report nearly 50 percent employee turnover rates, and nearly 80 percent of service providers are declining referrals or cutting services despite growing demand. Last year, we created the Direct Care Workforce Strategies Center to improve recruitment, retention, training, and advancement of direct care professionals. Later this year, the Strategies Center will launch a website to serve as a national hub of resources and best practices. When fully operational, the center also will support states in developing and leveraging partnerships, including among aging, disability, Medicaid, and workforce agencies; providers of direct care services; and disability, aging, and labor advocates.” 

• Caregiver Financial Support: January 1 will see Oklahoma become the first state in the nation to adopt an expansive caregiver tax credit with its Caring for Caregivers Act. The legislation, according to Georgetown University’s Ann Oldenburg, “will allow a tax credit up to 50 percent of eligible caregiver costs, capped at $2,000 per year for most participants and $3,000 per year for those caring for veterans or people with a dementia-related diagnosis. Eligible expenses range from big-ticket items, such as installing a ramp, to less costly expenses, such as a walker. Hiring a home care aide, respite care, adult day care, personal care attendants and health care equipment are other eligible expenditures.” In Utah, a bill was passed this year allowing for more caregivers to be compensated for their work — actual weekly pay going into their pockets. During the COVID-19 pandemic, when paid caregivers were not able to come into homes, the state expanded a Medicaid program for spouses to include parents and legal guardians to be paid for the work and services they provided. The state Legislature voted to make it a permanent fixture. This means that spouses and guardians of an individual using Medicaid waiver services can be paid for up to 40 hours per week to provide extraordinary direct care to their loved one. Over 1,000 families are now significantly benefiting from caregiver compensation in Utah,’ says Lisa Thornton, a lawyer and longtime advocate. Thornton struggled to find stable outside caregiver help for her severely disabled daughter and found that her own care was the most successful. Thornton now receives $593 a week for giving it.” 

• Professional Caregiver Training Payments: One of the seminal events in the efforts to focus attention on the plight of caregivers was AARP’s publication in 2012 of “Home Alone.” The report drove home the distress of family caregivers attempting to cope with loved ones post-hospital home care needs without backup or training to perform tasks of a medical nature. AARP was thus pleased to note CMS’ issuance of a final regulation in November to allow health care professionals to be paid solely for time spent training family caregivers. The decision means doctors, nurse practitioners, clinical psychologists, physical therapists and other health care professionals will be able to bill Medicare in some circumstances for time spent training caregivers to implement a loved one’s treatment plan.    

• HCBS Scorecard Gains: While disappointment lingered  from congressional failure to approve Pres. Biden’s proposal for a massive infusion of $400 billion into the provision of Medicaid HCBS, the scorecard on HCBS gains was not empty. Vice President Kamala Harris, speaking at a White House family caregiving event, announced that “the American Rescue Plan is helping to deliver about $37 billion in support across all 50 states for activities and investments that enhance, expand, and strengthen home and community-based services programs. All 50 states have taken advantage of this additional funding, with the majority of it helping providers retain, recruit, and train care workers and provide bonuses and pay increases for care workers. In addition, CMS is releasing new guidance outlining how states can use worker registries for HCBS to ensure beneficiaries have awareness of and access to qualified workers to deliver these critical services. Worker registries are an important tool – helping families that need care match with care professionals as well as helping workers find clients and build sustainable work schedules. ‘It’s critical that people, particularly older Americans and people with disabilities, are able to receive care in the setting of their choice,’ said CMS Administrator Chiquita Brooks-LaSure. ‘To achieve that vision, communities need clear links to the qualified professionals best trained provide that care. Helping states build and maintain worker registries will enable more people to find and receive high-quality, affordable, and person-centered care at home and in the community.’” 

On The Other Hand: 

• Medicaid Eligibility Redeterminations: After the end of the public health emergency in May, writes Politico’s Chelsea Cirruzzo, “states were required to review the eligibility of Medicaid enrollees. The subsequent unwinding saw nearly 3 million children, to date, losing coverage, according to the Georgetown University Center for Children and Families. In August, HHS sent letters to all states, warning that they might be running afoul of federal requirements, pointing to long waits at call centers, high number of disenrollments due to paperwork problems and a slow application. Now, in a letter to nine governors of states with the highest rates of children dropped from Medicaid, HHS Secretary Xavier Becerra urged that they do more to utilize options CMS has offered to ensure coverage. “Children are more likely than their parents to qualify for Medicaid due to higher income eligibility thresholds for children in Medicaid and CHIP,” said Becerra in his letter to Arkansas governor Sarah Huckabee Sanders. “This means that as children go through the renewals process, many children should still be Medicaid or CHIP eligible and should not be getting disenrolled. Many states have already taken steps to ensure eligible children stay enrolled. I am deeply alarmed that, as of September 2023, your data shows that children’s Medicaid and CHIP enrollment in your state has declined by 78,506 children or 18 percent compared to March 2023.” But, in statements to POLITICO, Cirruzzo reports, “spokespeople from Florida, Georgia and Texas pushed back on HHS, pointing to ways the states have managed the unwinding process. ‘A reminder that the Medicaid redetermination process is simply setting normal operations back in motion, like how it was before the pandemic, to ensure those accessing a safety net program in our state are those who truly qualify,’ Mallory McManus, the deputy chief of staff for Florida’s Department of Children and Families wrote in an email, adding that the state will be replying to the letter with ‘an accurate measure of the Medicaid redetermination process in Florida.’” 

• Dying Broke: The New York Times did not mince words when it published a wide-ranging series of articles driving home the growing burden of eldercare on American families. “Dying Broke” was how the Times titled the series, whose contents spanned nursing home care, home care, assisted living, long-term care insurance and the often desperate quest for home healthcare aides. Written by veteran reporters Reed Abelson and Jordan Rau, the articles, which paint an all too familiar picture to those caught up in the daily caregiving struggle, pack a considerable punch when viewed as an entire system failure. The articles’ titles tell the tale: “Facing Financial Ruin as Costs Soar for Elder Care;” “I Wish I Had Known that No One Was Going to Help Me;” “Why Long Term Care Insurance Falls Short for So Many;” “Extra Fees Drive Assisted Living Profits;” and “Desperate Families Search for Affordable Home Care.” 

• SNF Staffing Proposal Debate: As CMS works to finalize its SNF staffing proposal, the intensity of the ensuing debate emerges from the voluminous comments and other reactions precipitated by the proposal’s publication. Three Democratic senators voiced strong support for the proposal by way of a staff report entitled “Residents at Risk.” The rule that nursing homes with staffing levels below the proposed minimum staffing levels, the Senators concluded, have significantly lower overall ratings in CMS’s Five-Star Quality Rating System (2.7 out of 5) than the nursing homes that meet the proposed, higher standards, which have average ratings of 3.8 out of 5.   Nursing homes with lower staffing levels are: more likely than homes with higher staffing to be in or be a candidate for the CMS Special Focus Facility program, a program for homes that have a history of serious quality issues; have 50 percent more serious deficiencies in care that causes harm to patients, on average, compared to nursing homes that meet the higher CMS proposed staffing standards; and more likely than facilities with higher staffing to have instances of noncompliance related to patient abuse. Amplifying the Senators’ staff report, the Long Term Care Community Coalition has issued a White Paper entitled “Addressing the Nation’s Chronic Nursing Home Understaffing;” “The problem is not the amount of funds that nursing homes are paid but, rather, how these funds are being used. Studies have found that, rather than spending on resident care, too many nursing homes are devoting resources for items such as exorbitant administrative costs, unchecked related-party transactions, and excess profits.” 

At the same time, reports Modern Healthcare’s Alison Bennett, the CMS staffing proposal also appears to have generated considerable opposition across a wide range of political, industry and resident advocacy respondents. “The American Health Care Association and other industry groups reject the policy and demand CMS kill it. Among their arguments is that there simply aren’t enough registered nurses to hire and that skilled nursing facilities reliant on meager Medicaid reimbursements can't afford them anyway. Nursing homes will go out of business if CMS proceeds, the industry predicts. Nursing home and GOP opposition to staffing mandates is unsurprising. But an increasing number of Democrats are urging CMS to scale back or scrap the rule, making arguments that echo the industry’s. In addition, progressives and patient advocacy groups grouse that CMS’ plan is too weak to have a positive effect. ‘Some say that the proposed staffing levels are too tough. Some say that they’re not tough enough,’ said Priya Chidambara, senior policy analyst with the KFF Program on Medicaid and the Uninsured. ‘You’ve got these almost diametrically opposed viewpoints, so it’s going to be up to the Biden administration to kind of thread the needle and figure out how to move forward.’”

IN THIS SECTION

• HHS Updates National AD Planning
• GUIDE Model Targets Improved Dementia Care
• FDA Greenlights CRISPR Gene-Edited Sickle Cell Weapon
• Winter’s Onset Stokes Covid Cases and Deaths
• Journalist Chronicles Ravages of Long Covid
• Long Covid Impact: A Spreadsheet Tells the Tale

• HHS Updates National AD Plan 

HHS has published an updated 2023 “National Plan to Address Alzheimer’s Disease.” The 156-page document details cumulative developments across six major goals: 1) Prevent and Effectively Treat Alzheimer's Disease and Related Dementias by 2025; 2) Enhance Care Quality and Efficiency; 3) Expand Supports for People with Alzheimer's Disease and Related Dementias and their Families; 4) Enhance Public Awareness and Engagement; 5)  Improve Data to Track Progress; and 6) Accelerate Action to Promote Healthy Aging and Reduce Risk Factors for Alzheimer’s Disease and Related Dementias. The updated plan acknowledges the significant advent of anti-amyloid drugs, namely Leqembi, now fully FDA-approved, and the donanemab, likely to be approved in 2024. “While these drugs are not a cure, and may have serious side effects in some individuals, the plan notes, “they are an important step toward achieving the first goal of the National Plan, to prevent and effectively treat AD/ADRD by 2025, and they have spurred further private investments in other, including combination, therapies. (At the same time), there is a very large population that will not benefit from the currently approved treatments for various reasons such as their type of dementia, other health conditions that increase the likelihood of serious side effects, high out of pocket costs, or because their dementia is too advanced. Meeting the care and support needs of people living with dementia now has always been a central tenet of the National Plan.

• GUIDE Model Targets Improved Dementia Care 

To that end, on July 31, 2023, CMS announced the testing of a new model for dementia care through its Center for Medicare and Medicaid Innovation (Innovation Center). The Guiding an Improved Dementia Experience (GUIDE) Model, is a comprehensive care model designed to improve the quality of life for people with dementia, reduce caregiver strain, and delay or avert nursing home placement. The GUIDE model, the plan states, will include a comprehensive package of care management and coordination services, 24/7 access to a health care professional, a health care navigator, caregiver education and support, and some respite to help caregivers get a break. It is anticipated that testing this model could have a transformative effect on the delivery of care to people with dementia and offers hope for improved quality of life for the millions of people who want to remain in their homes and communities.” (Editor’s Note: The next meeting of the Advisory Council on Alzheimer's Research, Care, and Services will be held on Monday, January 22, 2024, from 9:30am to 4:30pm EST. The meeting will be a hybrid of in-person and virtual, and will be streamed live on http://www.hhs.gov/live. During the meeting, the Advisory Council will hear updates from the field on implementation of disease-modifying therapies for Alzheimer’s disease and outstanding research questions.)

• FDA Greenlights CRISPR Gene-Edited Sickle Cell Weapon 

It will cost about $1 million for each curative treatment and a very arduous path to receiving it, but for sufferers of sickle-cell disease, FDA’s December approval of Vertex Pharmaceuticals’ Casgevy offers the hope of relief from the disease’s crippling pain.  The drug, reports Politico’s Lauren Gardner and Katherine Ellen Foley, is the first-of-its-kind therapy produced by the gene-editing breakthrough CRISPR; it targets a rare, but debilitating, genetic disorder that disproportionately affects Black people. Patients will have stem cells drawn from their own bodies for the gene-editing process. They will undergo chemotherapy to kill older, sickled cells before the gene-edited, disease-free cells are transplanted back into their bodies. The process requires a hospital stay lasting weeks to months and renders patients infertile unless they choose to take preservation measures ahead of time.”  

Adds the Boston Globe’s Jonathan Saltzman: “Sickle cell was an obvious choice for scientists to tackle with CRISPR. It was the first human disorder understood on a molecular level, its underpinnings explained in a landmark 1949 paper written by Nobel laureate Linus Pauling. Yet progress against the disease was slow for decades afterward. Sickle cell affects hemoglobin, the oxygen-carrying protein in red blood cells. It causes the round, flexible blood cells to deform into a sickle shape and stick to vessel walls. That deprives tissues of oxygen, causing crushing pain that can often only be relieved with opioids and blood transfusions. Casgevy works by editing a patient’s bone marrow stem cells to make high levels of fetal hemoglobin — the healthy, oxygen-carrying form of hemoglobin produced during fetal development that is replaced by adult hemoglobin soon after birth. Unlike adult hemoglobin, fetal hemoglobin resists forming a crescent shape in sickle cell patients, and scientists had long searched for a way to restart it. From  Harvard Medical School’s Dean Dr. George Q.Daley, however, a word of caution: ‘While wealthy countries like the US have hospitals and doctors capable of preparing patients for the treatment and administering it, millions of people with sickle cell in sub-Saharan Africa don’t have those options. ‘This is a triumph of modern biomedicine. The major ethical concerns now are issues of cost and equitable distribution.’”

• Winter’s Onset Stokes Covid Cases and Deaths 

AARP’s most recent tracking data show that COVID-19 cases and deaths are climbing once again in U.S. nursing homes as vaccination rates hit new lows. These long-term care facilities have seen significant increases in infection since summer and are likely to see even more as the country reenters a historically troublesome period for COVID-19: winter. COVID-19 deaths among nursing home residents over a four-week period ending Nov. 19 were more than four times higher than those recorded over a four-week period ending June 25; roughly 1,000 residents died from the virus over that November period. Overall more than 185,000 nursing home residents have died from COVID-19 since it first appeared in the U.S. in 2020, accounting for roughly a sixth of the country’s entire COVID-19 death toll even though nursing home residents make up less than 1 percent of the total population. As cases among residents have risen, cases among nursing home workers have followed a similar trend; worker infections over the four-week period ending Nov. 19 were also quadruple those recorded over the four-week summer period. Approximately one staff member for every 37 residents tested positive in the most recent four-week period studied, with nearly half of all facilities nationwide reporting at least one case among staff. The worst is likely yet to come, according to AARP’s Ari Houser, coauthor of the analysis. “In each of the previous three years, the most severe COVID-19 impacts happened in late fall and early winter following the Thanksgiving, Christmas and New Year’s holidays. We expect to see an additional surge over the next several months.”

• Journalist Chronicles Ravages of Long Covid 

Meanwhile, two reports from the trenches depict the severe impact of long Covid on sufferers’ lives. Journalist Ed Jong writes in the New York Times that “As a science writer, I have written about many topics throughout my career. None have affected me more than long Covid. People infected by Covid can be pummeled by months or years of debilitating symptoms, including extreme fatigue, cognitive impairment, chest pain, shortness of breath and postexertional malaise — a state in which existing symptoms worsen after even minor physical or mental exertion. Dismissal and gaslighting — you’re just depressed, it’s in your head — are among the worst aspects of long Covid, and can be as crushing as the physical suffering. They’re hard to fight because the symptoms can be so beyond the realm of everyday experience as to seem unbelievable, and because those same symptoms can sap energy and occlude mental acuity. Journalism can be a conduit for empathy, putting words to the indescribable and clarifying the unfathomable for people too sick to do it themselves. Around the world, tens of millions of people are suffering from long Covid. Some might recover but most long-haulers don’t fully return to their previous base line. At the same time, the pool of newly sick people will continue to grow since our leaders have rushed us back to an era of unrestrained airborne pathogens and lax public health policies.”

• Long Covid’s Impact: A Spreadsheet Tells the Tale 

Giorgia Lupi knows all too well what living with long Covid is like. “At the beginning of my illness,” she writes in the New York Times, “I started logging all of my symptoms. I tracked everything in a huge spreadsheet: my symptoms’ intensity, whether they came on suddenly or gradually, when new symptoms appeared, the medications and supplements I was taking, the treatments I was trying, what I did that day, if I felt stressed, what I ate and drank and scores of biometrics from my newly bought smartwatch. But no matter how much data I collected or how many correlations I tried to draw, answers eluded me. Still my spreadsheet was the only thing I could control in a life I no longer recognized. Long Covid is a  chronic illness, a constant deluge of pain that slowly strips you of everything you used to be by taking away everything you used to do. 

In the past three years I have experienced and tracked more than 21 symptoms, seen 46 doctors at 233 doctor appointments, had my blood drawn 59 times, undergone multiple imaging and other tests --12 X-rays, 15 M.R.I.s, four CT scans, one PET scan (some of them admittedly very beautiful to look at), a tilt table test, an electromyogram, a skin biopsy, a carotid ultrasound, microclot and neuroinflammation tests -- been to the emergency room six times, participated in four research studies and one clinical trial, had 81 procedures done (injections, infusions, nerve ablations, immunotherapy) to try to reduce my symptoms, tried 63 medications and 95 types of supplements (some of which have been harmful), tried several diets (no gluten, no carbs, low histamine, paleo-autoimmune, low glycemic index), tried weekly physical therapy and acupuncture, osteopathic and chiropractic treatments, cranial sacral therapy, pain reprocessing psychotherapy, brain retraining, health coaching, cardiac rehab, and lymphatic massages, and, in the process, spent tens of thousands of dollars on medical bills. 

Even at my lowest moments, I remind myself that I am incredibly fortunate. I have a job that allows me to work from home. I am privileged to be under the care of excellent doctors. And I have good health insurance (even though I’ve spent tens of thousands of dollars out of pocket on various diagnostics, treatments and medical appointments). But not one day goes by — not one half-hour — that I do not feel sick. Always in the back of my mind is the fear that I will never again experience the uncomplicated, illness-free joy of the life I used to have.” 

ACL is seeking nominations for a new Advisory Committee on Long Covid that will bring perspectives from outside the government to make recommendations on research and innovation for a whole-of-government response to the longer-term impacts of COVID-19 and associated conditions. Nominations are due by January 16, 2024. People with multidisciplinary experience supporting and caring for those affected by Long COVID are encouraged to apply. HHS is specifically interested in receiving nominations of people who have had Long COVID and other disability stakeholders. Complete information is available here.

• Respite care is the focus of two reports from Arch, the national respite network. The first, “Respite Care Resource Guide,” contains links to a variety of state efforts to provide respite services and supports for family caregivers. The second, “Respite for Individuals with Autism,” addresses particular respite challenges facing this segment of the population. “An analysis of data from the 2009–2010 National Survey of Children with Special Health Care Needs (CSHCN) found that the prevalence of unmet respite care needs in parents of children with Autism was seven times higher than parents of CSHCN without Autism. The author concluded that screening all parents of CSHCN for unmet respite care needs is important, recognizing that parents of children with Autism, functional limitations and high caregiving demands are at highest risk for unmet respite care needs. Little is known about the respite needs among caregivers of adult children with Autism. However, as the availability of supports generally declines in adulthood while the caregiving demands for someone with Autism may not, assumptions can be made that respite remains a high unmet need.  

• From the Bold Public Health Center of Excellence on Dementia Caregiving comes a “Guide on Advanced Care Planning Resources” for people living with dementia and their care partners. The publication offers a very comprehensive range of tools, materials and information related to advanced care planning, including financial, housing, medical, legal, and palliative/hospice care assistance. 

• Justice in Aging focuses on Medicaid-funded assisted living in its guide to “Rights and Wrongs” for residents of those facilities. The contents include examples pertaining to autonomy and privacy, visitors, physical access and freedom to move and evictions. In addition, the organization recently hosted a related webinar discussing the subject; a transcript of the proceedings is available here. 

• Slides and video are available here from a late December LTCCC webinar on “Fighting for the Rights of Nursing Home Residence.”  

• The Bipartisan Policy Center has issued a lengthy analysis of the ongoing shortage of direct care workers including  personal care aides, certified nursing assistants, home health aides, residential care aides, psychiatric aides, and other occupations. The report includes bipartisan legislative and administrative federal policy solutions to (1) promote retention of direct care workers through reforms that encourage more supportive work environments, including assisting unpaid caregivers who incur significant financial burdens while relieving pressure on the paid workforce; (2) increase the number of workers through domestic and immigration policy reforms; and (3) improve standardized data collection and publicly available data on the direct care workforce to measure the effects of these efforts and inform evidence-based policymaking.

IN THIS SECTION

• A New Mother Navigates Infant and Intensive Care
• Clinicians Acknowledge Caregivers’ Anger
• Memory Centers Foster Caregiver Mentorship Programs
• Patti Davis Praises Justice O’Connor’s Marital Candor

• A New Mother Navigates Infant and Intensive Care 

Back at work after maternity leave, new mother and critical care physician Dr. Daniela J. Lamas reflects on “how this unexpectedly all-consuming love for my radiant daughter changes me as a doctor. This is not just about navigating my life as a physician alongside new motherhood. It is about how to acknowledge joy while experiencing loss. This is a balance that I navigate daily in the hospital, more so now than ever. I rush into the intensive care unit in the morning with the sweet smell of my baby still on me. I find myself reassuring a delirious patient with the same singsong rhyme I use to calm my child. A man just a few years older than me takes his final breaths, and when I leave his room I glance down at my phone to see a new photo from my nanny — my baby with her two little bottom teeth, beaming as she shakes a maraca. One night I returned home too late for dinner with the baby. It had been a hard day in the unit with a mother whose adult child had suffered a catastrophic brain injury years earlier and would never wake up. It is impossible for me not to think of my own child in those moments, to feel that chill that goes through me as I am reminded, once again, of how quickly good fortune can change. When I arrived home, my daughter was already in the bath, splashing about and babbling with her bath toys. I washed my hands, scrubbing away the layers of the day, and then I scooped her up from her bath, warm and beautiful and gentle in her baby bath towel. Maybe that is the best I can do. To be present both at home and in the hospital, in the joy and the loss. And to love, knowing it is all precarious.”

• Clinicians Acknowledge Caregivers’ Anger 

“There’s this myth of the loving caregiver,” said Allison Lindauer, an associate professor of neurology with the Oregon Health & Science University School of Medicine. But she and other experts, writes Catherine Pearson in the New York Times, say that anger and frustration are inevitable parts of the caregiver experience, and that it is important to normalize those feelings. ‘Allison Applebaum, the director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center and the author of the forthcoming book ‘Stand By Me,’ said that among the 4,000 or more caregivers she has worked with, she has yet to meet one who has not expressed some form of anger. Often just beneath that anger is a ‘deep well of sadness.’  Many caregivers feel powerless, she said, and take on the role out of necessity or a sense of duty. They have little control over what happens to the person they are caring for, or to themselves. Not everybody loves the person they care for.’ Dr. Applebaum advises caregivers to address the physical effects of anger, whether through breathing exercises, a hot shower or a run — whatever helps. Sometimes, she said, caregivers need a private place where they can just scream. Every person interviewed for this story also mentioned the power of peer support. Jennifer Levin, 42, started a Facebook support group for millennial caregivers seven years ago, after caring for her father. ‘You have the baseline of a common experience, and so you don’t have to explain where you’re coming from with this anger. Still, there is a limit to how comfortable some people feel sharing, even in a closed forum of peers. A lot of caregivers are afraid to express their anger, because they feel guilty.’”

• Memory Centers Foster Caregiver Mentorship Programs 

In Philadelphia, writes the New York Times’ Paula Span, the Penn Memory Center has “institutionalized peer support via a mentorship program for caregivers.” ‘Caregiving in general is hard, but caregiving for a person with dementia is harder,’ said Felicia Greenfield, Penn Memory’s executive director. ‘I remembered how absolutely terrified I was at the beginning,’ said Susan Jewett, 76, who first proposed the mentoring idea to Penn Memory after her husband’s death in 2020. Her pitch: ‘Maybe I could be useful to someone who is earlier in the process. Mentoring can benefit both parties, said Justin McBride, a senior administrator at Duet: Partners in Health and Aging, which began a similar program in Phoenix in 2016. ‘We hear all the time that supporting another person in need gives mentors a sense of purpose. It helps them make sense of their own journey.’ The relatively low cost of such volunteer programs could make them replicable in many locations. They operate on a small scale, however. Duet’s program, which like Penn’s involves screening and training mentors, has about 20 pairs enrolled. It requires a six-month commitment, but most mentoring relationships last a year or two. Penn’s newer Caring Collective, requiring a three-month commitment, has enrolled 20 mentors and 40 mentees. Mary Perkins, 76, who cares for her husband at their home in Lewes, Del., has been talking regularly with Susan Jewett. Her husband, Wes Perkins, 82, has vascular dementia and Alzheimer’s; at one point, when he required institutionalization for dementia psychosis, his care became particularly difficult. ‘I was a mess,’ Ms. Perkins said. ‘I needed to talk with someone who understood.’ Even more than advice on specific programs and strategies, Ms. Perkins said, she benefited from hearing Ms. Jewett’s own story. ‘I looked at her face on FaceTime, and I saw hope,’ Ms. Perkins said. ‘I knew she’d gone through hell and she was surviving, even thriving. If she could live through it, I could, too.’”

• Patti Davis Praises Justice O’Connor’s Marital Candor 

President Ronald Reagan’s daughter, Patti Davis, has written often about her family’s experience with the burdens of caregiving for an Alzheimer’s patient. On the occasion of the December passing of Justice Sandra Day O’Connor, Ms. Davis returned to the New York Times’ oped page. “The justice will long be remembered for breaking the gender barrier on the Supreme Court, a brave public victory that reverberated across the American judiciary, across the legal profession she had to fight so hard to join, across the nation’s workplaces. She also deserves credit, however, for having broken a second boundary: She spoke with rare candor about how Alzheimer’s disease plays out — with its heavy responsibility and complex ethical issues — within the private confines of her marriage to John O’Connor, diagnosed with AD in 1990. Justice O’Connor cared for him as best she could. ‘In the early days of my husband’s illness,’ she later told a Senate committee on aging, ‘I often took him to court with me because he could not be left alone. Alzheimer’s disease is a family disease.” In 2005, she announced that she would resign to spend more time with her husband. But by the next year, it became clear that he needed a different kind of care. The decision was made to place him in a facility. In 2007, she went even further, allowing her son Scott to disclose that John had fallen in love with a resident at the facility — and that he did so with the former justice’s blessing. She continued to visit him, though he no longer recognized her. People with Alzheimer’s lose connections, memories become frayed threads, but the desire for companionship runs deep — deeper than the disease. It’s fairly common for patients to develop new romantic, even sexual, relationships. But it’s something that few people feel comfortable talking about. (And then), a decade later, Justice O’Connor spoke again about dementia (but) this time, it was her own. A person’s legacy isn’t all about the grand sweep of history; sometimes it’s about quiet choices that touch the lives of others. We’ll never know how many people were affected by Sandra Day O’Connor’s candor, how many people she inspired to let their own husband or wife find a different kind of happiness than they once would have envisioned. She chose to stand firmly in love and happiness for the man she spent so many years with. That, too, deserves to be remembered.”

Former First Lady Rosalynn Carter, whose life ended in November, will be long remembered for her tireless efforts on behalf of family caregivers and individuals suffering from mental health disease. On May 26, 2011 she appeared before the Senate Special Committee on Aging and delivered what has become oft- quoted testimony. “Most frail, elderly and disabled people live at home; and about 90 percent of the care they need is provided by unpaid, informal caregivers, Mrs. Carter said. “Many of these caregivers are frail and elderly themselves. For many, the burdens of caregiving are enormous. Our nation’s family caregivers are enduring both physical and mental problems --- and even dying sooner – because of the responsibilities they have shouldered to care for their loved ones. Yet without them, where would our country be? The demand for institutional care would increase dramatically; and so would the overall costs. Our already over-taxed health care system would be hard pressed to find the work force necessary to deliver high quality institutionalized care. And millions more older people would have to live out their final days deprived of the comfort and security of being in their own homes. Less than a year after my father died, my grandmother passed away unexpectedly, and my grandfather came to live with us. As he grew older, his needs increased. My mother cared for him at home until he died at 95. During the last few years of his life, he was bedridden and totally dependent on her, me and other family members, neighbors and friends for all his needs. I like to say that there are only four kinds of people in the world- those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers. Valuing caregiving as a critical component of our nation’s healthcare system is the impetus behind the work that we do at the Rosalynn Carter Institute for Caregiving.”

• Are you a caregiver of an adult over 50 years old, and willing to try Routinify services at no cost?
• Are you or a loved one living with early symptoms of Alzheimer’s disease or mild cognitive impairment?
• Equity in Caregiving (Equidad en la prestación de cuidados)
• Inviting grandchildren, nieces/nephews, siblings, and step-kin to participate in a telephone-based dementia caregiving study
• Nationwide Study for Understanding and Improving Surgical Decision-Making for Persons Living with Dementia, their Family Caregivers, and their Providers – Patients and Caregivers Needed
• Participate in a Study About Dementia and Caregiver Stress
• Participate in a study about Understanding Informal Caregivers

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