Qualitative evaluation of advanced care planning in early dementia (ACP-ED)

PLoS One. 2013 Apr 10;8(4):e60412. doi: 10.1371/journal.pone.0060412. Print 2013.


Background: End-of-life-care is often poor in individuals with dementia. Advanced care planning (ACP) has the potential to improve end-of-life care in dementia. Commonly ACP is completed in the last six months of life but in dementia there may be problems with this as decision-making capacity and ability to communicate necessarily decrease as the disease progresses. Choosing the right time to discuss ACP with people with dementia may be challenging given the duration of the illness may be up to nine years.

Aims: To explore the acceptability of discussing ACP with people with memory problems and mild dementia shortly after diagnosis.

Methods: In-depth interviews were conducted with 12 patients and eight carers who had participated in ACP discussions and six staff members from a memory clinic and a community mental health team who had either conducted or attended the discussions for training purposes.

Results: Patients and carers found ACP a positive intervention that helped them think about the future, enabled people with dementia to make their wishes known, and resulted in their feeling relieved and less worried about the future. The importance of sharing the ACP documentation between health service providers was highlighted.

Conclusions: This qualitative evaluation of ACP in early dementia has encouragingly positive results which support the wider application of the intervention in memory services and community mental health teams. Strategies are suggested to support the implementation of ACP further in clinical practice.

Publication types

  • Evaluation Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Advance Care Planning*
  • Communication Barriers
  • Dementia / therapy*
  • Disease Progression
  • Humans
  • Motivation
  • Patient Acceptance of Health Care
  • Professional Competence
  • Terminal Care
  • Time Factors

Grant support

This project was funded by the Modernisation Initiative End of Life Care Programme 2008-2011. Funded by Guy's and St Thomas' Charity with support from the King's College Hospital Charity and South London and Maudsley NHS Foundation Trust Charitable Funds, the Modernisation Initiative is a partnership between local people, acute and primary health and social care, voluntary and independent sector organisations to deliver exceptional end of life services in Lambeth and Southwark. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.