An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper.

BACKGROUND

Dementia involves a progressive decline in many functional areas. Policy and practice guidelines should cover the entire course of the disease from early detection to the end-of-life. The present study aimed to evaluate the contents of national dementia strategies with a focus on palliative care content.

METHODS

We employed qualitative content analyses. Sixteen national dementia strategies from 14 countries were reviewed. Using open coding, the contents were compared to the domains and recommendations of the palliative care in dementia white paper of the European Association for Palliative Care (EAPC).

RESULTS

Although palliative care was not explicitly referred to in eight of the 14 countries and only to a limited extent in three countries, a number of domains from the EAPC white paper were well represented, including "person-centered care, communication, and shared decision making"; "continuity of care"; and "family care and involvement." Three countries that referred to palliative care did so explicitly, with two domains being well represented: "education of the health care team"; and "societal and ethical issues." The strategies all lacked reference to the domain of "prognostication and timely recognition of dying" and to spiritual caregiving.

CONCLUSIONS

National dementia strategies cover part of the recent definition of palliative care in dementia, although they do not frequently label these references as "palliative care." In view of the growing numbers of people dying with dementia, preparation for the last phase of life should be added to national strategies.