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BMC Palliative Care

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Open Access 01-12-2022 | Care | Research

Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan

Authors: Miharu Nakanishi, Taeko Nakashima, Yuki Miyamoto, Syudo Yamasaki, Atsushi Nishida

Published in: BMC Palliative Care | Issue 1/2022

Abstract

Background

The importance of advance care planning for people with dementia has increased during the Coronavirus Disease 2019 Pandemic. However, family caregivers may have concerns about having conversations regarding advance care planning with their loved ones, which may hinder the initiation of such planning. This study investigated family caregivers’ concerns regarding conducting advance care planning for home-dwelling individuals with dementia.

Methods

A prospective cross-sectional study compared the level of family-caregiver concern between those who had initiated advance care planning and those who did not. In June 2021, an internet-based questionnaire survey was administered to Japan-based family caregivers of persons with dementia. Registered members of a Japan-based survey company were recruited; inclusion criteria were being aged 40 years or older and having been a primary, non-professional caregiver of a family member with dementia. Respondents rated their level of agreement with six statements regarding advance-care-planning-related concerns. Respondents also reported their psychological well-being using the WHO-5 Well-Being Index.

Results

Overall, 379 family caregivers participated in this survey. Of these, 155 (40.9%) reported that their loved ones had initiated advance care planning, of whom 88 (56.8%) stated that care professionals were involved in the advance-care-planning conversations. The level of family-caregiver concern was significantly lower when the loved one initiated the conversation concerning advance care planning. After adjusting for the characteristics of persons with dementia and their caregivers, family caregivers with lower psychological well-being showed significantly higher levels of concern.

Conclusions

Family caregivers reported concerns regarding conducting advance care planning. There is a need for educational and clinical strategies that encourage professionals to address the psychological needs of family caregivers.

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Title: Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan
Authors: Miharu Nakanishi
Taeko Nakashima
Yuki Miyamoto
Syudo Yamasaki
Atsushi Nishida
Publication date: 01-12-2022
Publisher: BioMed Central
Keywords: Care
Dementia
Dementia
Published in: BMC Palliative Care / Issue 1/2022
Electronic ISSN: 1472-684X
DOI: https://doi.org/10.1186/s12904-022-01008-0

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan

Abstract

Background

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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