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: 10624351
• 负责人: Emily Largent
• 金额: $ 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/10624351
• 关键词: Address; Adoption; Adult; Affect; Age; Agreement; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Appointment; Attitude; Behavior Therapy; Behavioral Model; Belief; Bioethics; Caring; Clinical; Collaborations; Communication; Conflict (Psychology); Consensus; Consent; Decision Making; Development; Elder Abuse; Elderly; Elements; Ensure; Ethicists; Family member; Fostering; Freedom; Goals; Health; Impairment; Individual; Intellectual functioning disability; Intention; Intervention; Interview; Legal Guardians; Logic; Measures; Medical; Memory; Methods; Minor; Modification; Outcome; Parents; Patients; Personal Satisfaction; Persons; Process; Readability; Reporting; Research; Research Methodology; Resources; Role; Self Determination; Self Efficacy; Specific qualifier value; Structure; Supervision; Training; United States National Institutes of Health; Vulnerable Populations; Work; clinical encounter; help-seeking behavior; improved; innovation; insight; intervention delivery; medical appointment; mild cognitive impairment; neglect; 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.

项目摘要/摘要： 阿尔茨海默病和阿尔茨海默病相关痴呆症（AD/ADRD）不断受到影响 个人的决策能力。随着这些能力的下降，患有 AD/ADRD 的人经常会与其他人交往 人，通常是他们的护理伙伴，参与决策。在临床遭遇中，添加第三方， 临床医生，进一步使沟通和决策变得复杂。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。在支持性决策中，决策能力受损的成年人会进入一种 与他人达成的结构性协议；该协议确定了有障碍的成年人可以在其中进行的领域 决策能力需要并且想要决策帮助，并且它指定了寻求帮助的类型。这 然后，协议将指导受支持的决策过程。例如，根据协议， 其他人可能会谈论各种治疗方案的利弊，以帮助患有障碍的成年人 做出决定的决策能力。支持决策承认潜力 决策能力受损者的脆弱性，同时也提高他们参与自我决策的能力 决心，进而影响他们的福祉。支持决策越来越多地被年轻人使用 达到成年年龄（即不再有智力和发育障碍）的成年人（I/DD） 受到父母照顾的未成年人），有证据表明，支持性决策可以促进他们的福祉。 此外，许多州开始认识到支持决策是患有此类疾病的人的一种选择。 决策能力受损。然而，现有的受支持的决策资源没有特定于 AD/ADRD，并且 缺乏证据表明 AD/ADRD 患者的支持性决策的结果，他们的 护理伙伴或临床医生。在目标 1 中，我们将修改现有的支持决策工具以用于 AD/ADRD 听取了 Delphi 小组成员（包括患者、护理合作伙伴、临床医生和专家）的意见， 能力，并支持决策。在目标 2 中，我们将采访患者、护理合作伙伴和临床医生，以了解 了解与更大的使用意愿相关的态度、规范和自我效能信念 AD/ADRD 特定的支持决策工具包，以及其使用的感知障碍。在目标 3 中，我们将 与患者、护理合作伙伴和临床医生一起对 AD/ADRD 特定支持决策工具包进行试点测试 宾夕法尼亚记忆中心并评估干预后相对于平常的决策制定 关心。为了开发有效的、可扩展的行为干预措施来满足医疗决策需求 对于数百万患有 AD/ADRD 的美国人来说，我们必须增加对其机制的了解 底层支持决策并评估其改善福祉的能力。