Publications

Person-centered care (PCC) is the standard for the delivery of long-term services and supports (LTSS). In this article, we summarize the state of the science on meaningful outcomes and workforce development and discuss what is needed to ensure that person-centered LTSS becomes a universal reality. These 2 themes are intimately related: the dementia care workforce's capacity cannot be improved until care processes and outcomes that are significant to PCC are explicated. The LTSS workforce needs training in PCC as well as pragmatic measures to assess the quality of the care they provide. We conclude with several recommendations for future policy and practice-oriented workforce research.

There are more than 5 million people living with neurodegenerative diseases in the United States, conditions that have no cure and require ongoing services and supports to sustain a level of safety and function. Person-centered care (PCC) is the standard for the delivery of long-term services and supports (LTSS) to people living with dementia. PCC is characterized by shared decision-making between the individual and relevant providers where the person's values and preferences guide aspects of their health care and support the person's health and life goals. LTSS encompass a range of medical and personal care assistance when illness or disability interferes with self-care. LTSS is complex, provided by myriad agencies, organizations, and individuals, which often function independently of each other. The workforce delivering services is large, represents many different levels of training and formal education, and varies in its composition and adequacy across organizations and regions. Organization context, workforce and staffing, approaches to PCC, and outcomes are important domains to consider when developing LTSS programs to support thriving environments for people living with dementia.

The variability found within LTSS is matched by the growing racial and ethnic diversity of the US population, including people living with dementia. What has not kept up with this burgeoning and complex system is research that clearly identifies outcomes of greatest importance to the diverse groups of people living with dementia and their care partners, the LTSS processes and approaches that achieve their individual goals with a focus on remaining strengths rather than deficits, and the type of workforce that is needed to deliver these services.

In this article, we summarize meaningful outcomes and workforce development for dementia care and discuss what is needed to ensure that person-centered LTSS becomes a universal reality. These themes of outcomes measurement and the workforce are intimately related: the dementia care workforce's capacity cannot be improved until care outcomes and processes that are significant to impacting person-centered care are explicated. The LTSS workforce needs training in PCC as well as pragmatic measures to assess the quality of the care they provide. We conclude with several recommendations for moving the state of the science forward.