2024 Advancing Research on Care and Outcome Measurements (ARCOM)

Measuring What Matters: Incorporating Person-Centered Outcomes in Adult Day

How can person-centered care improve the quality of life for individuals with dementia using adult day services?

Tina Sadarangani, Ph.D., R.N.
New York University
New York, NY - United States

Background

According to the 2024 Alzheimer’s Association Facts and Figures report, an estimated 70% of older adults with Alzheimer’s or other dementias live in the community. Most people with Alzheimer’s or other dementias who live at home receive unpaid help from family members and friends, but some also receive community-based services, such as adult day services (ADS). Although approximately 30% of individuals using ADS have Alzheimer’s or other dementias, ADS are understudied and not uniformly regulated at the federal or state levels. 

Dr. Tina Sadarangani and colleagues partnered with the National Adult Day Services Association (NADSA) to identify and implement a set of measures to evaluate outcomes associated with ADS. However, these initial measures are limited and do not necessarily reflect the values or priorities of people living with dementia and their caregivers. 

Person-centered dementia care is a way of providing care focused on knowing the unique person through respectful close relationships that foster normalcy, choice, purpose, belonging, security, and strengths. Studies show that this form of care can reduce disease symptoms and improve the mental health of people living with Alzheimer’s and other dementias. Dr. Sadarangani and colleagues believe that more person-centered outcomes can supplement current problem-focused measures to deepen our understanding of how ADS can improve the quality of life for people living with dementia.

Research Plan

Dr. Sadarangani and team will work with invested individuals and experts to develop a set of person-centered outcome measures to supplement measures that NADSA is already collecting. First, they will conduct focus groups with people living with dementia and their informal caregivers at four ADS sites nationwide. The researchers will ask the participants open-ended questions about aspects of quality of life that are most impacted by ADS. They will use these findings to develop a core set of person-centered quality of life measures for collection in ADS. Then the researchers will survey groups of experts (including ADS management and administration professionals, ADS clinical staff, researchers, and policy advocates) on these measures until they reach a consensus on their validity, reliability, and feasibility. 

Finally, in partnership with NADSA, the researchers will pilot test and refine a process for collecting these person-centered, dementia-focused outcome measures in ADS on a national scale.

Impact

This study may establish reliable and feasible outcome measures for use with individuals with dementia in adult day services. A focus on person-centered care may improve the health and quality of life of people living with dementia in the community and their informal caregivers.