Conceptualization of a good end-of-life experience with dementia in Japan: a qualitative study.
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).
['Nishimura|Mayumi|M|0000-0001-8025-5211', 'Kohno|Ayako|A|0000-0001-7318-4742', 'van der Steen|Jenny T|JT|0000-0002-9063-7501', 'Naganuma|Toru|T|0000-0002-4864-8805', 'Nakayama|Takeo|T|0000-0002-7918-6252']
D000368:Aged D000369:Aged, 80 and over D017028:Caregivers D003210:Concept Formation D003704:Dementia D005260:Female D006801:Humans D007407:Interviews as Topic D007564:Japan D008297:Male D036301:Qualitative Research D011788:Quality of Life D013727:Terminal Care
dementia carers death and dying palliative care qualitative research