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.

项目总结/文摘: