Department of Health Systems and Population Health, School of Public Health, University of Washington, Seattle, WA, USA.
Department of Rehabilitation Medicine, School of Medicine, University of Washington, Seattle, WA, USA.
Dementia (London). 2023 Nov;22(8):1695-1717. doi: 10.1177/14713012231193139. Epub 2023 Sep 1.
Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care. We conducted 61 qualitative interviews with two stakeholder groups: 24 persons with dementia, and 37 informal caregivers to explore supportive care decisions and associated decision-making factors from the perspectives of persons with dementia and their caregivers. We identified four main decisions that persons with dementia and their informal caregivers played a role in: (1) sharing household responsibilities; (2) limiting routine daily activities; (3) bringing in formal support; and (4) moving to a care facility. Based on our findings we developed a schematized roadmap of decision-making that we used to guide the discussion of our findings. Four crosscutting themes emerged from our analysis: unknowns and uncertainties, maintaining life as you know it, there's no place like home and resource constraints. These results will be incorporated into the development of instruments whose goal is to identify preferences of persons with dementia and their caregivers, in order to include persons with dementia in care decisions even as their dementia progresses.
关于寻求更多支持性护理的决策过程知之甚少。随着痴呆症的进展，痴呆症患者往往被排除在寻求更多支持性护理的决策之外。本文描述了 Alzheimer's Research 项目（DMAR）决策研究的结果，该研究调查了关于过渡到更多支持性护理的决策过程。我们对两个利益相关者群体进行了 61 次定性访谈：24 名痴呆症患者和 37 名非正式照顾者，从痴呆症患者和他们的照顾者的角度探讨支持性护理决策和相关决策因素。我们确定了痴呆症患者和他们的非正式照顾者可以发挥作用的四个主要决策：（1）分担家务责任；（2）限制日常活动；（3）引入正式支持；（4）搬入护理设施。基于我们的发现，我们制定了一个决策的示意路线图，用于指导我们的发现的讨论。我们的分析中出现了四个交叉主题：未知和不确定性、保持你所知道的生活、没有地方像家一样、资源限制。这些结果将被纳入仪器的开发中，其目标是确定痴呆症患者及其照顾者的偏好，以便即使在痴呆症患者的病情进展时，也能让他们参与护理决策。
