Attitudes toward advance care planning among people with dementia at different stages of the disease: A qualitative study.

BACKGROUND

Although advance care planning improves end-of-life care, participation is low. For dementia, attitudes must be studied by disease stage to capture changes and better understand patient engagement.

PURPOSE: To explore how people with mild-to-moderate dementia described their attitudes toward advance care planning following diagnosis, during disease progression, and when anticipating advanced dementia and end-of-life circumstances.

METHODS

This qualitative study used maximum variation purposive sampling to recruit 18 people with dementia from the neurology department of a tertiary hospital in Northeastern China. Data were analyzed using Braun and Clarke's thematic analysis.

DISCUSSION: In the early stage of the disease, patients generally held a negative attitude toward future planning, focusing on their current quality of life rather than future uncertainties, and denying the importance of advance care planning. As the disease progressed, they regarded the ability to live normally as the core of a dignified life. However, they made future decisions more out of concern for their children than for themselves, often expressing wishes with restraint and showing hesitation toward participating in advance care planning. When anticipating advanced dementia and end-of-life circumstances, faced with physical decline and limited external support, many patients felt that while advance care planning could help express personal wishes, such plans were unlikely to be meaningfully realized without adequate support systems, leading them to adopt a passive attitude of "letting nature take its course."

CONCLUSION

These findings provide a basis for developing stage-specific and culturally sensitive advance care planning interventions.