What matters to you? A qualitative study on the lived experiences of community-living individuals with dementia

TL;DR

This study explores what matters to people with dementia living in the community to improve patient-centered care.

Contribution

The study identifies key themes for person-centered dementia care through direct input from individuals with dementia.

Findings

Participants emphasized the need for care that aligns with their personal preferences and daily-life activities.

There is a mismatch between what individuals with dementia need and the care they currently receive.

Participants expressed concerns about lost income, family burden, and lack of comprehensive dementia care supports.

Abstract

With Alzheimer’s Disease and Related Dementia (ADRD) increasing in the U.S., more research is needed to deliver patient-centered care. However, recruiting people with ADRD is challenging. This study examines what matters to individuals living with dementia in their community through the conceptual lens of person-centered care. We conducted seven qualitative interviews with individuals who have early or mid-stage dementia and live in the community. Two researchers used an inductive line-by-line approach to perform thematic data analysis independently and then as a team. The analysis revealed one overarching theme with four sub-themes. The overarching theme was holistic person-centeredness in dementia care. The four sub-themes were: (1) understanding the interplay between disease and daily-life activities; (2) participating in meaningful activities based on one’s preferences; (3) incongruence between the person with dementia’s preferences, needs, and the care received from healthcare providers; and (4) concerns of lost income due to job loss, burdening the family, and lack of comprehensive dementia care supports. There is a clear incongruence between individual preferences and needs and a demand to operationalize person-centeredness in dementia care, including the healthcare provider’s role. This group of participants wants the “incongruence” resolved to improve person-centered care. Healthcare providers should focus on encouraging individuals with dementia to participate in meaningful activities in daily routines. As a start to person-centeredness in care delivery, healthcare providers need to know and share resources based on their patients’ needs and preferences for care.