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： 阿尔茨海默氏病和阿尔茨海默氏病与疾病相关的痴呆症（AD/ADRD）不断受到影响 个人的决策能力。随着这些能力的下降，广告/adrd的人经常参与另一个 在决策中，通常是他们的护理伙伴。在临床相遇中，增加第三方， 临床医生，进一步使沟通和决策复杂化。识别的迫切需要 干预措施有可能改善二元和三合会的交流。支持的决策是 这样的干预。在支持决策的支持下，具有决策能力受损的成年人进入 与他人的结构性同意；该协议确定成年人受损的域 决策能力需要并想要决策的帮助，并指定寻求的帮助。这 然后，协议指导支持的决策过程。例如，根据协议， 其他人可以通过各种治疗方案的利弊进行交谈，以帮助成年人患有受损 做出决定的决策能力。支持决策确认潜力 决策能力受损的人的脆弱性，同时还促进他们参与自我的能力 决心，反过来是他们的健康。支持的决策越来越多地与年轻一起使用 达到多数年龄的智力和发育障碍的成年人（I/DD）（即不再是 在父母护理下的未成年人）和证据表明，支持决策做出促进其福祉。 此外，许多州开始识别支持的决策作为有选择的人 决策能力受损。但是，没有现有支持的决策资源是广告/ADRD特定的，并且 缺乏证据表明对AD/ADRD的人的支持决策的结果，他们 护理伙伴或临床医生。在AIM 1中，我们将修改现有支持的决策工具 AD/ADRD与Delphi小组成员的投入有关，包括患者，护理伙伴，临床医生和同意专家， 能力和支持决策。在AIM 2中，我们将采访患者，护理伙伴和临床医生 了解与使用更大意图相关的态度，规范和自我效能感信念 广告/ADRD特定支持的决策工具包，以及其使用的障碍。在AIM 3中，我们将 试点测试与患者，护理伙伴和临床医生的广告/ADRD特定支持的决策工具包 宾夕法尼亚记忆中心和评估干预相对于通常的干预后的决策做出 关心。为了制定有效的可扩展行为干预措施以满足医疗决策需求 在数百万的AD/ADRD的美国人中，我们必须提高对机制的理解 基本支持的决策和评估其改善其福祉的能力。