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

Miharu Nakanishi, Taeko Nakashima, Yumi Shindo, Yuki Miyamoto, Dianne Gove, Lukas Radbruch, Jenny T. Van Der Steen

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)1551-1561
Number of pages11
JournalInternational Psychogeriatrics
Volume27
Issue number9
DOIs
Publication statusPublished - 2015 Jan 9
Externally publishedYes

Keywords

  • dementia
  • end-of-life
  • national health policy
  • palliative care

ASJC Scopus subject areas

  • Clinical Psychology
  • Gerontology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health

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