Article Abstract

The advance care planning experiences of people with dementia, family caregivers and professionals: a synthesis of the qualitative literature

Authors: Tony Ryan, Karwan M-Amen, Jane McKeown


There exists compelling evidence that advance care planning (ACP) remains a key factor in the delivery of appropriate end of life care and facilitates the timely transition to palliative care for people with dementia. Take up of ACP within the dementia population is low, especially when compared with other conditions. Quantitative research has helped in iden-tifying some of the key factors in enabling or inhibiting the use of ACP within the dementia population. Qualitative research can, however, shed further light upon the experiences of all. We carried out a search of the qualitative literature addressing the ACP experiences of people with dementia, family caregivers and professionals. An approach to qualitative synthesis involving coding of original text, developing descriptive themes and generating analytical themes was utilized. We identified five papers and subsequently five analytical themes: breadth and scope of future planning; challenges to ACP; postponing ACP; confidence in systems and making ACP happen for people with dementia. The synthesized findings shed light on the ongoing challenges of the use and further development of ACP in the population of people with dementia. In particular attention is drawn to the difficulties in the timing of ACP and the preference for informal approaches to planning within the families of people affected by dementia. The ACP capacity of the workforce is also addressed. The paper reveals considerable complexity in undertaking ACP in a context of dementia. It is suggested that the preference for informal approaches and the timing of initial conversations be con-sidered and that the skills of those involved in initiating discussions should be given primacy.