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

Published online by Cambridge University Press:  13 February 2015

Miharu Nakanishi*
Affiliation:
Mental Health and Nursing Research Team, Tokyo Metropolitan Institute of Medical Science, Setagaya-ku, Tokyo, 156-8506, Japan
Taeko Nakashima
Affiliation:
Department of Economics, Rutgers University, the State University of New Jersey, Camden, NJ 08102, USA
Yumi Shindo
Affiliation:
Division of Research, Tokyo Dementia Care Research and Training Center, Suginami-ku, Tokyo, 168-0071, Japan
Yuki Miyamoto
Affiliation:
Department of Psychiatric Nursing, Graduate School of Medicine, the University of Tokyo, Bunkyo-ku, Tokyo, 113-0033, Japan
Dianne Gove
Affiliation:
Alzheimer Europe, Luxembourg, L-1417, Luxembourg
Lukas Radbruch
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, 53127, Germany Palliative Care Centre, Malteser Hospital Bonn/Rhein-Sieg, Bonn, 53123, Germany
Jenny T. van der Steen
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, 1081BT, Amsterdam, the Netherlands
*
Correspondence should be addressed to: Miharu Nakanishi, PhD, RN, PSW, Mental Health and Nursing Research Team, Tokyo Metropolitan Institute of Medical Science, 2-1-6 Kamikitazawa, Setagaya-ku, Tokyo, 156-8506, Japan. Phone: +81-3-6834-2292. Email: mnakanishi-tky@umin.ac.jp.

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.

Type
Research Article
Copyright
Copyright © International Psychogeriatric Association 2015 

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