Disabled elderly man in a wheelchair at the hospital looking upset - healthcare and medicine
(Credit: andresr / Getty Images)

A recent study seeking to uncover the largely “hidden circumstances” preceding and following older adults’ transition into residential care settings called out the need to strengthen long-term services and supports.

Assisted living and nursing home residents experienced severe disabilities and escalating help at home, usually from unpaid caregivers, in the year leading up to a move into a long-term care setting. That’s according to an examination of 10 years of data from the National Health and Aging Trends Study, said researchers from the University of California, San Francisco; the San Francisco VA Health Care System, University of Colorado School of Medicine, Rocky Mountain Regional VA Medical Center and the VA Eastern Colorado Geriatrics Research Education and Clinical Center. 

Along with improving LTSS for older adults and their families, the authors also suggested the data would help clinicians understand when home supports approach a breaking point.

The study, published in JAMA Internal Medicine, found assisted living residents, who reportedly received 18 hours of caregiving per week, move when they are less disabled. But they approach disability levels similar to nursing home entrants within two years of admission. 

The average nursing home entrant received 27 hours of caregiving per week before moving, and only one-third of those individuals had paid caregivers, leaving the burden to unpaid caregivers. The authors said the data help inform decisions on how much HCBS may be needed to facilitate aging in place with dignity. 

“If HCBS programs cannot support 27 or more hours of care per week per person, we must acknowledge long-term care facilities provide substantial relief for caregivers and ensure nursing homes and assisted livings are staffed to support and maintain quality of life in severely disabled residents,” the authors wrote.

The researchers noted that residents and family caregivers want healthcare professionals to provide more guidance around disability and long-term care planning during later stages of life, with specific information on when more care is needed and how circumstances will change for both residents and caregivers once someone transitions to long-term care. 

Conversely, healthcare professionals admitted to lacking evidence to make unbiased and evidence-based recommendations for care settings for older adults. 

“We hope these findings help clinicians better understand ‘who lives where’ to inform long-term care facility decision-making and estimate when home supports are critically strained,” the authors wrote. 

They also hoped their findings inform policy, noting that with only one-third of nursing home and assisted living entrants having any paid caregiver, home- and community-based services programs may be underutilized. 

A window into disability, caregiving dynamics

In commentary on the study, researchers from the Johns Hopkins Bloomberg School of Public Health and the University of Michigan said the study is important because understanding of the dynamics of late-life function, care needs and transitions across residential settings is limited. 

In fact, they said, less than 2% of older adults move to residential care each year. And in 2020, roughly 80% of the 7.5 million adults aged 70 and older receiving help with self-care or mobility activities were living in the community. State strategies to rebalance Medicaid spending away from institutional settings and into HCBS likely will shift even more care into community settings.

They said the study provides a window into the disability and caregiving dynamics of older adults transitioning from the community to a residential care setting, including “precipitating care needs, limited use of paid help, and extensive hours of uncompensated care.” 

“Understanding the high levels of family caregiving to older adults, regardless of whether a residential transition is imminent, is an important step to establishing policies and practices that promote person- and family-centered care,” they wrote.