A five-year, $81 million federal grant will fund a study to better understand the workforce caring for assisted living residents and others who are living with dementia in hopes of helping with recruitment and retention of workers and improving care.
The study will create a database of information to aid in future research and policy decisions.
The National Dementia Workforce Study will survey direct care workers in assisted living community and nursing home memory care units, hospitals, clinics and home care. Each year, starting in 2024, the NDWS, led by the University of Michigan and the University of California, San Francisco, will survey thousands of personal care and home health aides, nursing assistants, nurses and other staff members who work where people with dementia live.
“Direct care workers who come to patients’ homes and those who work on the front lines of long-term care are often overlooked,” Joanne Spetz, PhD, co-principal investigator and director of the UCSF Philip R. Lee Institute for Health Policy Studies, said in a statement. “But the high turnover in these low-wage jobs, which often don’t require advanced training, is a major factor in the current crisis in dementia care.”
Forty-two percent of assisted living residents have dementia diagnoses, according to the Centers for Disease Control and Prevention’s National Center for Health Statistics.
By focusing on direct care workers, the researchers said, the survey could help agencies promote more coordinated care. Workers who leave a company after completing their first survey will be asked to continue participating in subsequent years.
The information is expected to enable the building of a secure data infrastructure that other researchers can tap into and use in their work. Researchers also will be able to propose new survey questions and receive funding to fuel their research using NDWS data.
State and federal agencies that regulate or pay for dementia care also will have access to the data, with the hope that new models will result that incentivize industry and nonprofit organizations to better coordinate care.
“We can’t overstate the urgency of gathering this information and harnessing it in ways that can help the 6 million Americans already living with dementia and the millions more who will be diagnosed in years to come as new tests and treatments for early-stage dementia become available,” said Donovan Maust, MD, a geriatric psychiatrist and healthcare data researcher at U-M’s Michigan Medicine and leader of the NDWS team. “This investment will fill the gaps in knowledge that stand in the way of better care and make it possible to use resources more wisely.”
The researchers said that the NDWS data could reveal important differences between state practices, care coordination and outcomes due to wide variation in state regulations and different scopes of practice for licensed workers.
“In many cases, we suspect, there are systems problems — not individual problems — behind high turnover, nonstandard care and poor outcomes,” said Maust, also a member of the U-M Institute for Healthcare Policy and Innovation and the VA Center for Clinical Management Research. “Finding, training and keeping workers is a key challenge for all parts of the healthcare industry right now, and we hope to make it possible to find and address causes of burnout and quitting, including through federal workforce-related funding.”
Other partners in the NDWS include the Alzheimer’s Association, the University of North Carolina, the University of Pennsylvania, Brown University, Yale University and Mathematica Inc. AMDA–The Society for Post-Acute and Long-Term Care Medicine and PHI are serving as consultants on the project.
Funding comes from a specialized center cooperative agreement from the National Institutes on Aging, part of the National Institutes of Health.
