"We feel like a family here": person-centered outcomes of adult day services use from the voices of people living with dementia and their caregivers.
Academic Article
Overview
abstract
BACKGROUND: As the number of persons living with dementia (PLWD) grows, there is a pressing need for person-centered long-term care solutions that prioritize their experiences. Adult day centers (ADCs) play a critical role in supporting PLWD, yet most research focuses on outcomes relevant to caregivers and payors rather than the voices of those receiving care. This study explores PLWD’s firsthand perspectives on their ADC experiences, using Kitwood’s (1997) person-centered dementia care framework which identifies five key psychological needs: inclusion, attachment, comfort, occupation, and identity. METHODS: Six focus groups were conducted with PLWD (n = 51) and their caregivers (n = 6) at four ADCs across the U.S. ADCs were purposively selected to represent a diverse range of racial/ethnic backgrounds, geographic locations, and urban and rural settings. Qualitative directed content analysis was guided by Kitwood’s framework to categorize the aspects of ADC care that participants found most meaningful. RESULTS: Findings revealed that PLWD were most impacted by inclusion, as participants consistently described ADCs as family-like environments where they built strong social bonds with both peers and staff which alleviated feelings of isolation. Attachment was also a key theme, with many PLWD referring to ADCs as a “second home,”—a place where they felt safe, secure, and supported. Participants expressed comfort with ADC staff, who provided consistent, personalized care and treated them with dignity. The need for occupation was fulfilled by the opportunity to leave home, engage in structured activities, and maintain a sense of purpose and routine. Lastly, ADCs helped PLWD maintain their identity by respecting their individual preferences, cultural backgrounds, and autonomy. Some participants described newfound confidence and self-worth as a result of their participation, highlighting the importance of person-centered care. CONCLUSIONS: This study amplifies the voices of PLWD, highlighting ADCs as environments that foster person-centered outcomes by addressing fundamental psychological needs. Findings emphasize the necessity of centering PLWD’s lived experiences in ADC programming, policy development, and outcome measurement to ensure alignment with what truly matters to them. Future research should focus on translating these insights into scalable person-centered care practices in ADCs and other long-term care settings. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-025-13436-8.
