School of Medicine and Public Health, College of Health, Medicine and Wellbeing, University of Newcastle, Callaghan, Australia.
Equity in Health and Wellbeing Program, Hunter Medical Research Institute, New Lambton Heights, Australia.
PLoS One. 2023 Jun 12;18(6):e0286261. doi: 10.1371/journal.pone.0286261. eCollection 2023.
Future medical and financial planning is important for persons with dementia given the impact of the disease on capacity for decision making.
To explore from the perspective of carers of persons with dementia: (1) Participation in future medical and financial planning by the person they care for, including when planning was undertaken and the characteristics associated with having an advance care directive completed; (2) The type of healthcare providers who discussed advance care planning following diagnosis; and (3) Preferences for timing of discussions about advance care planning following diagnosis.
Recruitment and data collection took place between July 2018 and June 2020. Carers of persons with dementia aged 18 years and older were mailed a survey. Participants completed questions regarding completion of various future planning documents by the person they support, including time of completion and who discussed advance care planning following diagnosis. Participants were presented with information about the benefits and consequences of early and late discussions of advance care planning and asked when discussions about advance care planning were best initiated.
198 carers participated. Most participants were female (74%) and had been a carer for more than 2 years (82%). Most participants reported that the person with dementia they support had made a Will (97%) and appointed an Enduring Guardian (93%) and Enduring Power of Attorney (89%). Only 47% had completed an advance care directive. No significant associations were found between characteristics of persons with dementia and completion of an advance care directive. Geriatricians (53%) and GPs (51%) most often discussed advance care planning following diagnosis. Most carers thought that discussions about advance care planning should occur in the first few weeks or months following diagnosis (32%), at the healthcare provider's discretion (31%), or at the time of diagnosis (25%).
More than half of persons with dementia do not have an advance care directive. There is variability in preferences for timing of discussions following dementia diagnosis.
鉴于痴呆症对决策能力的影响，对痴呆症患者进行未来医疗和财务规划非常重要。
从痴呆症患者照顾者的角度探讨：（1）他们所照顾的人参与未来的医疗和财务规划，包括规划何时进行以及与完成预先护理指令相关的特征；（2）在诊断后讨论预先护理计划的医疗保健提供者的类型；（3）在诊断后讨论预先护理计划的最佳时间。
招募和数据收集于 2018 年 7 月至 2020 年 6 月进行。向痴呆症患者的照顾者邮寄了一份调查。参与者回答了关于他们支持的人完成各种未来规划文件的问题，包括完成时间和在诊断后与谁讨论预先护理计划。向参与者提供了有关早期和晚期讨论预先护理计划的好处和后果的信息，并询问何时最好开始讨论预先护理计划。
198 名照顾者参与了调查。大多数参与者是女性（74%），照顾者的时间超过 2 年（82%）。大多数参与者报告说，他们支持的痴呆症患者已经制定了遗嘱（97%），并任命了持久监护人（93%）和持久授权书（89%）。只有 47%的人完成了预先护理指令。痴呆症患者的特征与预先护理指令的完成之间没有显著关联。老年病学家（53%）和全科医生（51%）在诊断后最常讨论预先护理计划。大多数照顾者认为，在诊断后的最初几周或几个月内（32%），或在医疗保健提供者决定时（31%），或在诊断时（25%）进行预先护理计划的讨论。
超过一半的痴呆症患者没有预先护理指令。在诊断后讨论的时间偏好上存在差异。
