Adapting supported decision making to promote wellbeing and improve health outcomes for persons living with Alzheimer's disease and Alzheimer's disease related dementias

项目摘要/摘要： 阿尔茨海默病和阿尔茨海默病相关痴呆(AD/ADRD)受到无情的侵蚀 个人的决策能力。随着这些能力的下降，患有AD/ADRD的人通常会与另一个 个人，通常是他们的护理伙伴，在决策中。在临床会诊中，第三方的加入， 临床医生，使沟通和决策进一步复杂化。迫切需要找出 有可能改善二元和三元沟通的干预措施。支持的决策是 这样的干预。在支持性决策中，决策能力受损的成年人进入 与另一个人达成的有组织的协议；该协议确定了成年人受损的领域 决策能力需要和想要决策帮助，它规定了所寻求的帮助的种类。这 然后，协议将指导所支持的决策过程。例如，根据协议，这 其他人可能会讨论各种治疗方案的利弊，以帮助成年人受损 作出决定的决策能力。支持的决策承认了潜在的 决策能力受损的人的脆弱性，同时也促进了他们从事自我生活的能力 决心，进而也是他们的幸福。支持性决策越来越多地被年轻人使用 达到成年年龄的智力和发育残疾成年人(I/DD)(即不再 受父母照顾的未成年人)，而且有证据表明，得到支持的决策促进了他们的福祉。 此外，许多州开始认识到，支持决策是符合以下条件的人的一种选择 决策能力受损。然而，现有得到支持的决策资源都不是AD/ADRD专用的，而且 缺乏证据表明AD/ADRD患者的支持性决策结果，他们的 护理伙伴或临床医生。在目标1中，我们将修改现有支持的决策工具，以用于 AD/ADRD由德尔福专家小组成员提供意见，包括患者、护理合作伙伴、临床医生和同意方面的专家， 能力，并支持决策。在目标2中，我们将采访患者、护理伙伴和临床医生，以 理解态度、规范和自我效能信念与更大的使用意向相关 特定的AD/ADRD支持的决策工具包，以及对其使用的明显障碍。在《目标3》中，我们将 与患者、护理合作伙伴和临床医生一起试运行AD/ADRD支持的决策工具包，网址为 宾夕法尼亚记忆中心和评估在实施干预措施后的决策制定 关心。为了开发有效的、可扩展的行为干预以满足医疗决策需求 对于数百万患有AD/ADRD的美国人，我们必须增加我们对这些机制的了解 潜在的支持决策，并评估其改善其福祉的能力。

Project Summary/Abstract: Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) relentlessly erode affected individuals' decision-making abilities. As these abilities decline, persons with AD/ADRD often engage another person, typically their care partner, in decision making. In clinical encounters, the addition of a third party, the clinician, further complicates communication and decision making. There is a critical need to identify interventions with the potential to improve dyadic and triadic communication. Supported decision making is such an intervention. In supported decision making, an adult with impaired decisional abilities enters into a structured agreement with another person; this agreement identifies domains in which the adult with impaired decisional abilities needs and wants decision-making help, and it specifies the kinds of help sought. This agreement then guides the supported decision-making process. For example, based on the agreement, this other person may talk through the pros and cons of various treatment options to aid the adult with impaired decisional abilities in reaching a decision. Supported decision making acknowledges the potential vulnerabilities of persons with impaired decisional abilities while also promoting their ability to engage in self- determination and, in turn, their wellbeing. Supported decision making is increasingly being used with young adults with intellectual and developmental disabilities (I/DD) who reach the age of majority (i.e., are no longer minors under parental care), and evidence suggests that supported decision making promotes their wellbeing. Moreover, many states are beginning to recognize supported decision making as an option for persons with impaired decisional abilities. Yet, no extant supported decision-making resources are AD/ADRD-specific, and there is a lack of evidence on the outcomes of supported decision making for persons with AD/ADRD, their care partners, or clinicians. In Aim 1, we will modify existing supported decision-making tools for use in AD/ADRD with input from Delphi panelists including patients, care partners, clinicians, and experts in consent, capacity, and supported decision making. In Aim 2, we will interview patients, care partners, and clinicians to understand the attitudinal, normative, and self-efficacy beliefs associated with greater intention to use the AD/ADRD-specific supported decision-making toolkit, as well as perceived barriers to its use. In Aim 3, we will pilot test the AD/ADRD-specific supported decision-making toolkit with patients, care partners, and clinicians at the Penn Memory Center and assess decision making following delivery of the intervention relative to usual care. In order to develop potent, scalable behavioral interventions to meet the medical decision-making needs of the millions of Americans with AD/ADRD, we must increase our understanding of the mechanisms underlying supported decision making and assess its ability to improve their wellbeing.