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Bioethics Forum Essay

This Wasn’t the Plan: A Family Caregiver’s Recommended Readings from 2023

Work and life overlapped significantly for me in 2023. The timeframe for the latest project in the  Bioethics for Aging Societies portfolio—a Greenwall Foundation-funded analysis of ways to support aging through housing—coincided with changes in my 89-year-old mother’s health that by year’s end resulted in a change in her housing. As my mother says, no one “plans” to move to assisted living as an aspiration. Something happens. A fall, a stroke, the accrual of age-associated conditions within one life, or within a couple’s life. And so, life changes, yet again. I am reading reports and articles about aging and caregiving with a sharper perspective, reality-checking, looking for my mother, and for myself, in the stats and stories. Here’s a round-up of good reads from 2023.

An excellent New York Times/KFF Health News series with the less-than-cheerful title Dying Broke catalogs how impossible it is for many Americans to “plan” for a financially secure old age. The “choices” available to people who need care heavily depend on ability to pay for “options” outside the Medicare health insurance system for older Americans. This series makes admirably clear that in America, when we say “care,” this usually means family caregivers. That society in which people care for their elders? That’s this society, for better or worse. As the thousands of reader comments on this series make clear, what is missing from American society is a coherent and equitable system for financing care, comparable to Medicare and meeting the foreseeable needs of an aging population.

A report on financial longevity, from the University of Pennsylvania’s New Courtland Center for Transitions and Health in collaboration with the TIAA Institute, avoids the trap of reducing population aging to a personal or family problem and advising caregivers to “take care of themselves.” (Disclosure: I have written with New Courtland director Mary Naylor, a co-author of this report.) The authors present the useful concept of “financial caregiving,” reflecting data showing that nearly all family caregivers provide financial support or manage finances on behalf of the person they are caring for. The report’s recommendations in response to this intergenerational reality are targeted to employers and financial advisors of current and future caregivers. Employers are encouraged to offer flexible work, remote work, and paid family leave as part of standard benefits, given that 60% of family caregivers are employed. Financial advisors are encouraged to shift from “retirement” planning to “longevity” planning, talking more directly with clients about how population aging (longer lives and smaller families/future caregivers) affects them. The report also notes that the financial costs borne by family caregivers as a percentage of income are significantly higher among Black and Hispanic/Latino family caregivers, with implications for their financial security.

The slide-format infographics summarizing this report are especially helpful, and the limited use of cutesy phrases such as “sandwich generation” is refreshing. Caregiving is serious work. The renegotiation of self-determination as a shared project, involving the delegation of activities such as paying one’s own bills or doing one’s own taxes, involves mutual learning, patience, respect, and trust. For more on financial caregiving in the context of dementia, see this 2023 study from University of Michigan investigators, which analyzes how the incremental changes associated with this disease translate into increased care needs and out-of-pocket care costs.

My research colleague Jennifer Molinsky, who directs the Housing an Aging Society program at the Harvard-based Joint Center for Housing Studies, produces a crucial semiannual report on housing America’s older adults. (The link includes the full report, charts, data sources, and other tools.) In a post summarizing insights from the 2023 report, Molinsky explains how population aging intersects with the shortage of affordable housing in the U.S., and how the housing needs of older adults include–and go beyond–affordability.

In the next decade, people over 80 will become the fastest growing segment of the U.S. population. Due to age-associated health conditions and limits on mobility, people over 80 are foreseeably more likely to need accessible housing, and also services and supports provided in or near where they live. The cost of certain services and supports, such as hiring a live-in aide, are beyond the financial means of typical, nonwealthy, older adults. While greater options technically exist for older adults who are income-eligible for housing subsidies or dually eligible for Medicaid, actual access to these options is constrained by waiting lists and insufficient availability. Residential options such as assisted living usually rely on owning a home that can be sold to generate the funds needed to pay monthly fees. The supply of truly affordable housing designed for older adults, with attention to accessibility and to proximity to local services and opportunities for social connection, is severely limited. Result: older adults and their families are making do with housing that no longer works, while compensating for services that they cannot afford or that do not exist where they live. Steep inequalities associated with race and ethnicity reflect the consequences of longstanding barriers to homeownership and to living in communities with higher property values.

Molinsky (an advisor to my project) calls for a shift in how our nation thinks about housing, aging, and care. Our current approach, in which real options exist only for the wealthy, excludes most older adults and families from making choices based on existing housing stock. (Waiting lists are not a realistic strategy for people in their 80s.) We are missing opportunities for creativity in using housing to improve lives.

Other recent publications I found useful included updated research on the future of the forgotten middle of older adults who lack wealth and do not qualify for Medicaid or housing subsidies; an essay on “longevity-ready cities” as a framework for urban planning, shifting beyond the scale and individual focus of “age friendly” services; and the smart reporting of Atlantic staff writer Jerusalem Demsas on housing.

I learned a lot about Medicare this year. There is nothing like a discharge planning meeting to drive home the crucial distinctions between what Medicare pays for and what is recommended post-discharge but not covered by insurance. The website of Medicare Rights Center, a nonprofit that provides education, counseling, and advocacy to Medicare-insured individuals (including many younger people with disabilities), is a great resource. The website of the Family Caregiver Alliance includes a comprehensive section on “caring for another,” with details on how to be decent employer if you are considering hiring home-based care workers.

Finally, the most sustaining book I read in 2023 was about caregiving, although I didn’t realize that when I bought it. Breadsong is a superb book about baking, and is also a memoir, jointly told by a young woman and her father, about severe depression, family caregiving, and recovery, anchored by a strong sense of place: a village near Oxford, England. A memorable story about interdependence and creativity—and the recipes work.

Nancy Berlinger is a senior research scholar at The Hastings Center and a Hastings Center fellow.

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Hastings Bioethics Forum essays are the opinions of the authors, not of The Hastings Center.

  1. Berlinger’s post highlights critical changes occurring in society as it relates to, as was so well put, “longevity planning” in retirement and end-of-life. Bringing to the table my perspective as a Gen Z person, I recall my experience caring for my Baby Boomer father in his later years of life. Having suffered from idiopathic pulmonary fibrosis, he received a lung transplant in March of 2021. His health affected the lives of everyone in our little family as we were all, to some degree, required to contribute to his care needs due to the lack of social support services in our area. As a registered nurse, I was called upon quite frequently, often performed nursing care for him that I know many others do not have access to (wound care, makeshift physiotherapy, catheter irrigation, IV antibiotic administration in collaboration with our family doctor to name just a few tasks I completed). I routinely worked day shifts at the hospital while pulling night shifts at home for my father directly after. We managed to avoid frequent re-hospitalizations and a move to an expensive nursing home (which would’ve inevitably left my mother’s housing situation up in arms, as their home likely would’ve needed to be sold). To put it plainly, this was never in my parents’ retirement plans.

    My father unfortunately passed in September 2023 due to a COVID infection that destroyed his new lungs. It was a quick death and, of course, difficult to grasp after putting in so much work to keep him going over the years. However, the alternative was continued chronic illness that would’ve drained our family’s resources entirely. I am now of the opinion that we were lucky when I consider the situations many patients find themselves in, as referenced in Berlinger’s essay and as witnessed in my professional career.

    Nowadays, I often worry how my generation will ever be able to build adequate retirement funds for not only the years of life we will still be able to enjoy, but for the expensive years of life that come in old age when frequent hospitalizations begin to occur and nursing home care is considered. Young people need to be encouraged to enter the healthcare workforce to solve this issue, as our society is in dire need of either publicly funded or affordable home care and nursing home services for those in old age.

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