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Informal caregivers provide two extra “shifts” of care per resident weekly in assisted living communities, equating to 65 hours per month per resident, according to the authors of a study recently published in Health Affairs.

The findings challenge the assumption that a move into assisted living reduces the burden of care on a resident’s family and friends. The authors conclude that it is time to reconsider long-term care policies to support informal caregivers through payment and formal training.

The burden on family caregivers after admission, according to the researchers, was greater in assisted living than in nursing homes, where informal caregivers provide one extra shift’s worth of care every week, equating to 37 hours per month per resident.

Using data from the Health and Retirement Study and the National Health and Aging Trends Study, Norma B. Coe, PhD, and Rachel M. Werner, MD, PhD, from the University of Pennsylvania found that informal caregivers — whom they called the “invisible workforce” — provide “substantial” amounts of care even after loved ones move to a community or facility that has paid staff members.

In a research update for the Penn Leonard Davis Institute of Health Economics, the authors noted that people living in residential care facilities are more likely to need care than their community-dwelling counterparts. But they said they were surprised to learn the extent to which informal family and friends caregivers continued to provide care once their loved ones moved into those communities.

Although the authors could not determine whether the level of informal care was based on preference or low staffing levels, they said it raises questions about how residents without such informal caregivers have their needs met. 

Visitor bans during the pandemic, which essentially eliminated this “invisible workforce,” contributed to the burnout in long-term care facilities due to increased care demands on staff members on top of the “extra work” they needed to perform related to COVID-19 protocols and infections, the investigators said.

Another study looks at family caregivers

In a separate Health Affairs study, researchers from the University of California, San Francisco, and the University of Montana analyzed the potential need for personal care aides compared with the supply of aides across the country, particularly in rural communities. 

Along with recommending increased wages and benefits and improved training and career development options, the authors also suggested adding flexibility to state Medicaid waiver programs to pay family caregivers to provide personal care services for adults with self-care disabilities.