The National Dementia Workforce Study: Development of Questionnaires for Home Care, Assisted Living, and Nursing Home Settings

The growing aging population and rising prevalence of dementia are driving increased demand for long-term care services and supports in the United States. People with dementia require substantial support and care, often from direct care workers in private homes, assisted living communities, and nursing homes. Despite their crucial role, these workers receive highly variable training, particularly in dementia care, and face significant work-related challenges including stress, injury, and burnout. The National Dementia Workforce Study (NDWS), sponsored by the National Institute on Aging, was designed to include large-scale, nationally representative annual surveys of staff and administrators providing care to individuals with dementia in home care, assisted living, and nursing homes, and of community clinicians practicing across settings. NDWS will capture workforce demographics, training adequacy, job satisfaction, and their impact on dementia care quality. This report describes NDWS’s rigorous process for questionnaire design for the initial wave of home care, assisted living, and nursing home surveys. Our survey development methods integrated literature reviews, validated questionnaire items, expert consultations, and cognitive interviews to ensure instrument reliability and validity. Resulting survey data will be available to researchers seeking to examine workforce conditions, training, and worker knowledge, and their impact on care for people with dementia. NDWS infrastructure will also allow researchers to link survey responses with administrative and medical claims data to examine how workforce dynamics and organizational factors are associated with outcomes for people with dementia over time, enabling insights into policies to improve dementia care training, workforce retention, and care delivery.