Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers.

ABSTRACT:

Background

The importance of palliative care and advance care planning in dementia is increasingly recognized. However, little is known about the distinct needs and preferences of people with young-onset dementia.

Aim

To explore how people with young-onset dementia and their family caregivers experience quality of life, and how these experiences shape their views on the future, palliative care needs, and advance care planning.

Design

A qualitative interview study, using inductive thematic analysis.

Setting/participants

Ten community-dwelling people with young-onset dementia and their family caregivers from the Netherlands.

Results

Four themes were found: sense of self, connection to others, acceptance versus resistance in the face of adversity, and orien

SUBMITTER: Maters J 

PROVIDER: S-EPMC12033381 | biostudies-literature | 2025 May

REPOSITORIES: biostudies-literature