Department of Psychiatric Nursing, Tohoku University Graduate School of Medicine, Miyagi, Japan.
Research Center for Social Science & Medicine, Tokyo Metropolitan Institute of Medical Science, Tokyo, Japan.
BMC Palliat Care. 2022 Jun 27;21(1):114. doi: 10.1186/s12904-022-01008-0.
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.
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.
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.
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.
在 2019 年冠状病毒病大流行期间，痴呆症患者的预先护理计划的重要性有所增加。然而，家庭照顾者可能对与亲人进行预先护理计划的对话感到担忧，这可能会阻碍此类计划的启动。本研究调查了家庭照顾者对与居住在家中的痴呆症患者进行预先护理计划的担忧。
一项前瞻性横断面研究比较了已经启动预先护理计划的家庭照顾者和未启动的家庭照顾者之间的担忧程度。2021 年 6 月，对日本的痴呆症患者的家庭照顾者进行了基于互联网的问卷调查。招募了一家日本调查公司的注册会员；纳入标准为年龄在 40 岁或以上，并且是痴呆症家庭成员的主要非专业照顾者。受访者对与预先护理计划相关的六个担忧陈述表示同意的程度进行了评分。受访者还使用世卫组织-5 幸福指数报告了他们的心理健康状况。
总体而言，共有 379 名家庭照顾者参加了这项调查。其中，155 名（40.9%）报告说他们的亲人已经启动了预先护理计划，其中 88 名（56.8%）表示护理专业人员参与了预先护理计划的对话。当亲人开始讨论预先护理计划时，家庭照顾者的担忧程度明显较低。在调整了痴呆症患者及其照顾者的特征后，心理健康状况较低的家庭照顾者表现出更高的担忧水平。
家庭照顾者报告了对进行预先护理计划的担忧。需要教育和临床策略来鼓励专业人员满足家庭照顾者的心理需求。
