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

调整支持性决策，以促进阿尔茨海默病和阿尔茨海默病相关痴呆症患者的福祉并改善其健康结果

• 批准号: 10437135
• 负责人: Emily Largent
• 金额: $ 54.51万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-06-01 至 2027-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10437135
• 关键词: Address; Adoption; Adult; Affect; Age; Agreement; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Appointment; Behavior Therapy; Behavioral Model; Belief; Bioethics; Caring; Clinical; Collaborations; Communication; Conflict (Psychology); Consensus; Decision Making; Development; Elder Abuse; Elderly; Elements; Ensure; Ethicists; Family member; Fostering; Foundations; Freedom; Goals; Health; Impairment; Individual; Intellectual functioning disability; Intention; Intervention; Interview; Legal Guardians; Logic; Measures; Medical; Memory; Methods; Minor; Modification; Outcome; Parents; Patient Care; Patients; Personal Satisfaction; Persons; Process; Readability; Reporting; Research; Research Methodology; Resources; Role; Self Determination; Self Efficacy; Specific qualifier value; Structure; Supervision; Training; Triad Acrylic Resin; United States National Institutes of Health; Vulnerable Populations; Work; abuse neglect; base; clinical encounter; consent capacity; dementia care; improved; innovation; insight; intervention delivery; medical appointment; mild cognitive impairment; novel; pilot test; research and development; shared decision making; therapy development; tool; treatment as usual; young adult

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.

项目概要/摘要： 阿尔茨海默病和阿尔茨海默病相关痴呆（AD/ADRD）无情地侵蚀受影响的 个人的决策能力。随着这些能力的下降，AD/ADRD患者通常会与另一个人接触， 人，通常是他们的护理伙伴，在决策。在临床接触中，第三方的加入， 临床医生，进一步复杂的沟通和决策。迫切需要确定 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。在辅助决策中，决策能力受损的成年人进入一个 与另一个人的结构化协议;该协议确定了有障碍的成年人 决策能力需要并想要决策帮助，并且它指定了所寻求的帮助类型。这 然后，协议指导支持的决策过程。例如，根据协议， 其他人可能会通过各种治疗方案的利弊，以帮助成年人受损 做出决定的能力。支持决策承认潜在的 决策能力受损的人的脆弱性，同时也促进他们参与自我的能力， 他们的幸福，也是他们的幸福。支持决策越来越多地用于年轻人 达到成年年龄的智力和发育残疾（I/DD）成年人（即，不再 受父母照料的未成年人），有证据表明，辅助决策促进了他们的福祉。 此外，许多州开始认识到，支持决策是残疾人的一种选择。 决策能力受损然而，没有现存的支持决策资源是AD/ADRD专用的， 缺乏关于AD/ADRD患者支持决策的结果的证据， 护理伙伴或临床医生。在目标1中，我们将修改现有的支持决策制定工具， AD/ADRD与德尔菲小组成员（包括患者、护理伙伴、临床医生和知情同意专家）的输入， 能力和支持决策。在目标2中，我们将采访患者、护理伙伴和临床医生， 理解态度，规范，和自我效能信念与更大的意图使用 与防治荒漠化和干旱有关的决策支持工具包，以及使用该工具包的已知障碍。在目标3中，我们 与患者、护理合作伙伴和临床医生一起对AD/ADRD特定支持决策工具包进行试点测试， Penn记忆中心，并评估干预后相对于平时的决策 在乎为了开发有效的，可扩展的行为干预措施，以满足医疗决策的需要， 在数百万患有AD/ADRD的美国人中，我们必须增加对这些机制的理解， 基本的支持决策，并评估其能力，以改善他们的福祉。