Ensuring there is an effective workforce to care for the growing population of people living with dementia is one of the biggest public health challenges facing the United States in the coming decades. In 2020, more than 6 million Americans had Alzheimer’s disease or related dementias, and by 2060 that number will more than double to nearly 14 million.
Despite the growing need, very little is known about this diverse workforce that includes millions of workers and has enormous influence on the quality and costs of care for this population. There is a vast body of research focused on family and other unpaid caregivers, but far less is known about the professional workforce and what causes issues such as the large variation in care processes and outcomes, and high employee turnover. The National Dementia Workforce Study (NDWS), sponsored by the NIH National Institute on Aging, is working to change that.
NDWS is conducting the first large, annual surveys of the dementia care workforce. The surveys will include clinicians, such as primary care physicians and mental health nurse practitioners, and other essential healthcare workers such as licensed nurses and personal care aides. They will focus on four different care settings: outpatient offices, nursing homes, assisted living facilities, and home health or home care agencies.
Surveys are underway and will continue annually over the next five years. The research generated by this project will help healthcare organizations, clinicians and workers improve retention, target training, and improve outcomes.
‘We hope to make it possible to find and address causes of burnout and quitting, including through federal workforce-related funding.’
NDWS is led by teams at the University of Michigan and the University of California, San Francisco, with several other university-based and nonprofit partners. The Alzheimer’s Association is also collaborating.
“Finding, training, and keeping workers is a key challenge for all parts of the healthcare industry right now,” said Dr. Donovan Maust, a geriatric psychiatrist and researcher at the University of Michigan Medical School, and an NDWS principal investigator.
“We hope to make it possible to find and address causes of burnout and quitting, including through federal workforce-related funding.”
The study plans to collect more than 75,000 surveys over five years. Staff surveys are designed to help researchers understand how the composition, training, and dementia care knowledge and practices of the workforce affect worker burnout and retention as well as healthcare outcomes. Administrator surveys will collect information about how each organization operates, including facility and resident characteristics, staffing, training, and care practices.
Invited clinicians, organizations and staff are encouraged to participate to increase an understanding of the challenges they face, and ultimately contribute to improved practice and policy to ensure quality dementia care. Administrators and staff can make a big impact by completing the surveys, which take less than 30 minutes. To encourage participation, participating facilities will receive a monetary token of appreciation, and employees will receive an electronic gift card.
Reaching a large and diverse array of workers will make it possible to gather a truly representative picture of what dementia care is like today.
“Direct care workers who come to patients’ homes, and those who work on the front lines of long-term care, are often overlooked,” said Joanne Spetz, PhD, economist and health workforce expert at the University of California, San Francisco, and NDWS co-principal investigator. “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.”
Surveys will be updated annually to include new questions from researchers and stakeholder groups. They also will include a longitudinal follow-up component to learn why workers leave their jobs.
Learn more about the study at www.ndws.org. We encourage ASA members who have been invited to please participate in this important study.
Martha Pennington is the communications specialist for the National Dementia Workforce Study, University of Michigan Medical School in Ann Arbor.
Photo credit: Shutterstock/Toa55
