Our vast family care system for the elderly is at risk of collapse

"It's still not easy: Depression, helplessness and frankly plain ole boredom make it mentally taxing. I have to explain to mom several times a day that we are living through a pandemic right now, what coronavirus is, why we can't go … to the adult day program (which she calls 'school' in a good way). ... The mind of the caregiver is substantially, passively stressed. The daily mental torture is real."
Female caregiver, 57, California

"I am sure you have heard that my program ... is closing for good. Needless to say, this leaves a large hole in this important service. I am not sure how many champions are out there, but ever if there was a time, it is now. ... This isolation has been a disaster for older people."
30-year development director, adult day program, Minnesota

The COVID-19 pandemic has laid bare many social and public health inequities in the U.S. One of the most devastating is how we choose to care for older Americans with health needs.

The initial epicenter of the pandemic was a nursing home in Washington state. Although the relentless march of COVID-19 has affected people of all ages, older persons continue to bear the brunt. Those living in nursing homes are much more likely to die from COVID-19. Intersecting with age is race, with African Americans at every age, including those over 65, disproportionately affected and dying.

As applied gerontologists with scientific expertise in dementia care, we acknowledge the appalling conditions older persons and care staff in nursing homes face (particularly those who are underserved and underrepresented). However, little public health and media attention has considered those who provide the majority of long-term care in the U.S.: family caregivers.

More than 80% of older Americans with complex, chronic health needs receive help from unpaid caregivers, most commonly relatives. If family caregivers were to suddenly stop providing help to older Americans in need, the long-term care system of the U.S. would collapse.

Many family caregivers rely on a patchwork of community services that allow them to care for relatives at home while remaining employed, such as adult day programs. Adult day programs provide therapeutic services and social activity to older persons with a range of health needs, often during daytime hours.

Adult day services also offer vital respite to family caregivers so they can work, run errands or have time to recharge.

Staffed by nurses, social workers, health aides, activity specialists and other professionals such as occupational therapists, adult day programs serve a diverse clientele, with approximately one-third of users being Black, indigenous, or persons of color.

Limiting adult day services and other critical home and community-based services may increase the risk of nursing home admission for older clients, loss of employment for their family members and increased health risks for both.

In March 2020 we were in the midst of conducting a national study of adult day services funded by the National Institutes of Health when states across the U.S. made the decision to shut down adult day programs to contain the spread of COVID-19. Since then, we have heard an outpouring of anguish, grief, confusion and anger from families whose relatives can no longer access needed programs.

Program directors and staff in our study have made heroic efforts to continue to serve their clients (e.g., making toilet paper runs for clients to their homes; creating online activities), but the consequences of states classifying adult day programs as "non-essential" have been severe.

Many long-running adult day programs have been forced to close permanently, including one operated by the Amherst H. Wilder Foundation in St. Paul for 75 years.

Now, older persons are more isolated than ever and families are running out of options to sustain at-home care while balancing work or other responsibilities.

We strongly recommend that states do the following:

1) Reconsider adult day programs as essential services for older persons and those who care for them at home. COVID-19 has shone a harsh light on how the U.S. health care system is fragmented along the lines of acute care (often delivered in hospitals) and chronic care (nursing homes and community providers), with the majority of resources going to the former. Reimbursement mechanisms should incentivize and expand upon integrated models of acute and chronic disease care for older persons. Otherwise, we will continue to prioritize some types of health care services at the expense of others, and in the end older people with health needs and their family caregivers lose.

2) Pursue new ways to finance community-based long-term care options. The state of Washington has taken a bold policy step to provide its residents with an account to purchase community-based long-term care services such as adult day programs. There are many other innovative alternatives to consider such as public-private long-term care insurance partnerships.

New options to provide Americans with community-based long-term care options are desperately needed. Instead of shutting down adult day services, we should be integrating these necessary programs into the broader health care system landscape.

Joseph E. Gaugler is the Robert L. Kane endowed chair in long-term care and aging at the University of Minnesota School of Public Health. This article is also submitted on behalf of members of the adult day service plus research team: Laura N. Gitlin, Kathleen Marx, Holly Dabelko-Schoeny, Lauren Parker and Keith A. Anderson.