Information on advance care planning on websites of dementia associations in Europe: A content analysis

Abstract

Objective To gain insight into the advance care planning (ACP) content provided on dementia associations’ websites in Europe. Methods We conducted a content analysis of dementia associations’ websites in Europe regarding ACP information, using deductive and inductive approaches and a reference framework derived from two ACP definitions. Results We included 26 dementia associations’ websites from 20 countries and one European association, covering 12 languages. Ten websites did not mention ACP. The information on the remaining 16 varied in terms of themes addressed and amount of information. Four explicitly define ACP. Several websites made multiple references to legal frameworks (n = 10, 705 excerpts), choosing legal representatives (n = 12, 274 excerpts), and care and treatment preferences (n = 14, 89 excerpts); while themes such as communication with family (n = 9, 67 excerpts) and professionals (n = 9, 49 excerpts) or identifying personal values (n = 9, 73 excerpts) were mentioned on fewer websites or addressed in fewer excerpts. Conclusion ACP content is non-existent in 10 out of 26 dementia associations’ websites. On those that have ACP content, legal and medical themes were prominent. It would be beneficial to include more comprehensive ACP information stressing the importance of communication with families and professionals, in line with current ACP conceptualisations framing ACP as an iterative communication process, rather than a documentation-focused exercise.