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Conceptualization of a good end-of-life experience with dementia in Japan: a qualitative study

Published online by Cambridge University Press:  28 August 2019

Mayumi Nishimura Open the ORCID record for Mayumi Nishimura [Opens in a new window] ,
Ayako Kohno Open the ORCID record for Ayako Kohno [Opens in a new window] ,
Jenny T. van der Steen Open the ORCID record for Jenny T. van der Steen [Opens in a new window] ,
Toru Naganuma Open the ORCID record for Toru Naganuma [Opens in a new window]  and
Takeo Nakayama Open the ORCID record for Takeo Nakayama [Opens in a new window]
Mayumi Nishimura*
Affiliation:
Department of Health Informatics, School of Public Health, Kyoto University, Kyoto, Japan
Ayako Kohno
Affiliation:
Department of Health Informatics, School of Public Health, Graduate School of Medicine, Kyoto University, Kyoto, Japan
Jenny T. van der Steen
Affiliation:
Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands
Toru Naganuma
Affiliation:
Center for Innovative Research for Communities and Clinical Excellence (CiRC LE) Fukushima Medical University, Fukushima, Japan
Takeo Nakayama
Affiliation:
Department of Health Informatics, School of Public Health, Kyoto University, Kyoto, Japan Department of Health Informatics, School of Public Health, Graduate School of Medicine, Kyoto University, Kyoto, Japan
*
Correspondence should be addressed to: Mayumi Nishimura, Department of Health Informatics, School of Public Health, Kyoto University, Yoshida Konoe-cho Sakyo-ku, Kyoto city, Kyoto, 606-8501, Japan. Tel: +81-75-753-9477; Fax: +81-75-753-9478. Email: nishimura.mayumi.45w@kyoto-u.jp.
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Abstract

Objectives:

To conceptualize a “good end of life” for people with dementia from the perspectives of bereaved family caregivers in Japan.

Design and participants:

A qualitative study using in-depth, semi-structured interviews focused on the family caregivers’ perceptions of their loved one’s experiences. Family caregivers who had lost their relatives with dementia more than six months previously were recruited using maximum variation sampling by cultural subpopulation. A thematic analysis was conducted.

Results:

From 30 interviews held, four main themes emerged. A good end of life for people with dementia means experiencing a “Peaceful Death” while “Maintaining Personhood” at a “Preferred Place” allowing for feelings of “Life Satisfaction.” A “Preferred Place” emerged as a basic requirement to achieving a good end of life according to the three other themes, in particular, “Maintaining Personhood.” However, the interviewees experienced difficulties in ensuring that their loved ones stayed at a “Preferred Place.”

Conclusions:

Despite different cultural backgrounds, perceptions of a good end of life with dementia were remarkably similar between Japan and Western countries. However, recent societal changes in family structures and long-term care access in Japan may explain the theme of a comfortable place taking a central position. We suggest that these themes be considered and translated into care goals. They could supplement established end-of-life care goals for quality of life in dementia, which aim to maximize functioning and increase comfort.

TRIAL REGISTRATION NUMBER

Ethics Committee of the Graduate School and Faculty of Medicine, Kyoto University (R0808-2)

Keywords

qualitative researchdementiadeath and dyingpalliative carecarers
Type
Original Research Article
Information
International Psychogeriatrics , Volume 32 , Issue 2: Issue Theme: Psychological Promoters of Well-Being in Older Adults , February 2020 , pp. 255 - 265
Copyright
© International Psychogeriatric Association 2019 

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