New $81M NIH grant will help U.S. answer urgent need for better dementia care

Watching a loved one suffer the slow decline of dementia is hard enough.

But trying to find care for them that’s high-quality, safe, available and affordable is nearly as difficult, as millions of American families have found out the hard way in recent years.

That lack of options stems from a combination of workforce shortages, payment policies and a lack of consistency in dementia care delivery and regulation, according to experts from the University of Michigan and the University of California, San Francisco and their colleagues.

Now, fueled by new five-year funding expected to total $81 million from the NIH’s National Institute on Aging or NIA, the team will work to improve understanding of the health care workforce that cares for people with dementia, through surveys and other methods that will produce data for clinicians, researchers, policymakers and others to use.

The new National Dementia Workforce Study will survey those who are paid to care for people with dementia in all settings, from their homes, assisted living facilities and nursing home memory care units, to hospitals and clinics.

“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,” says Donovan Maust, M.D., M.S., a geriatric psychiatrist and health care data researcher at U-M’s Michigan Medicine who leads 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.”

How it will work

Maust notes the key role of U-M’s Survey Research Center, part of the Institute for Social Research, and of the UCSF long term care research team led by co-principal investigator Joanne Spetz, Ph.D.

In addition, a wide range of partners will make the NDWS possible – including people with dementia and their family caregivers who, via the Alzheimer’s Association, will help shape the surveys that dementia care workers will take.

Every year starting in 2024, the NDWS aims to survey thousands of people who work as home health and personal care aides, nursing assistants, nurses of all licensing and practice levels, physicians, nurse practitioners, physician assistants, and clinical staff of facilities where people with dementia live.

Reaching such a large and diverse array of workers will make it possible to gather a truly representative picture of what dementia care is like today, says Spetz.

“Direct care workers who come to patients’ homes, and those who work on the front lines of long-term care, are often overlooked,” she said. “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.”