Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan
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 initiat...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-06-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-022-01008-0 |
| _version_ | 1818235576260755456 |
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| author | Miharu Nakanishi Taeko Nakashima Yuki Miyamoto Syudo Yamasaki Atsushi Nishida |
| author_facet | Miharu Nakanishi Taeko Nakashima Yuki Miyamoto Syudo Yamasaki Atsushi Nishida |
| author_sort | Miharu Nakanishi |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-12T11:56:10Z |
| format | Article |
| id | doaj.art-e98b0121f1364d8c9117729a8397e246 |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-12-12T11:56:10Z |
| publishDate | 2022-06-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-e98b0121f1364d8c9117729a8397e2462022-12-22T00:25:12ZengBMCBMC Palliative Care1472-684X2022-06-0121111010.1186/s12904-022-01008-0Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in JapanMiharu Nakanishi0Taeko Nakashima1Yuki Miyamoto2Syudo Yamasaki3Atsushi Nishida4Department of Psychiatric Nursing, Tohoku University Graduate School of MedicineDepartment of Social Healthcare and Business, Nihon Fukushi UniversityDepartment of Psychiatric Nursing, Graduate School of Medicine, The University of TokyoResearch Center for Social Science & Medicine, Tokyo Metropolitan Institute of Medical ScienceResearch Center for Social Science & Medicine, Tokyo Metropolitan Institute of Medical ScienceAbstract 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.https://doi.org/10.1186/s12904-022-01008-0Advance care planningAttitudesDementiaFamily caregiverPsychological well-beingPalliative care |
| spellingShingle | Miharu Nakanishi Taeko Nakashima Yuki Miyamoto Syudo Yamasaki Atsushi Nishida Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan BMC Palliative Care Advance care planning Attitudes Dementia Family caregiver Psychological well-being Palliative care |
| title | Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan |
| title_full | Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan |
| title_fullStr | Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan |
| title_full_unstemmed | Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan |
| title_short | Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan |
| title_sort | family caregivers concerns about advance care planning for home dwelling people with dementia a cross sectional observational study in japan |
| topic | Advance care planning Attitudes Dementia Family caregiver Psychological well-being Palliative care |
| url | https://doi.org/10.1186/s12904-022-01008-0 |
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