Addressing the Needs of Key Subgroups of Caregivers of Persons with Dementia After Loss Using Self-Determination Theory: A Mixed Methods Approach

项目摘要/摘要 在10年内，大多数患有阿尔茨海默病和相关痴呆(AD/ADRD；PLWD)的人将 死亡，创造了1300多万新的失去AD/ADRD照顾者。25%失去亲人的AD/ADRD照顾者 临床上的“复杂悲伤”，这几乎损害了他们生活的方方面面。在丧失的AD/ADRD中 没有临床损害的照顾者，数百万人仍然患有更高的抑郁症状和孤独感 以及幸福感、身体机能、自我照顾和个人成长的降低。研究人员可能会受到诱惑 将失去亲人的AD/ADRD照顾者视为同质群体，但关键亲属之间的丧亲不同 配偶和成年子女组成的小组。不幸的是，对于大家庭来说，丧亲之痛有何不同是困难的 去辨别。这项研究的长期目标是开发干预措施来满足失去亲人的人的需求 AD/ADRD照顾者。这项建议的目标是测试失去亲人的AD/ADRD的综合模型 照顾者的需求，并在关键的亲属子组中确定满足需求的体验，以适应未来 干预。中心假设是，失去AD/ADRD的照顾者有一套共同的需求， 影响临床和亚临床结果，但分组以不同方式满足这些需求，基于 来自自决理论的证据，以及对失去AD/ADRD照顾者的10个月的观察。自主性 能力和关联性被假设为形成一组对临床和 丧失AD/ADRD照顾者的亚临床结果(目标2；在400名丧失AD/ADRD的调查中进行测试 照顾者)。假设关键子组以不同的方式满足这些需求(目标3；在半结构化中进行测试 对36-45名失去AD/ADRD照顾者的采访)。通过量身定做的培训计划和世界知名的- 在全国最重要的公共卫生学院之一的专家指导下，候选人将获得以下方面的专业知识 丧亲、利益相关者参与、定性方法和混合方法，以促进完成 这是本研究的长期目标。作为对研究团队的补充，社区咨询委员会(CAB) 失去亲人的AD/ADRD照顾者和利益相关者将为本项目和PI更广泛的研究提供建议 旨在帮助失去AD/ADRD照顾者的计划。出租车成员代表不同的种族，民族， 性别、性别、年龄、临床特长、痴呆症类型、丧亲时间、社区 组织和地理位置。获奖后，CAB将帮助指导干预措施的发展 基于目标2和目标3的调查结果。拟议的研究在重点关注关键亚群方面具有创新性， 应用自决理论，并以失去亲人的AD/ADRD照顾者为重点的多样化CAB。这个 工作将解决NIA的目标，即增加对失去亲人的AD/ADRD照顾者的需求的了解，通知 未来的干预措施，以减少丧亲的临床和亚临床后果。团结在一起 综合研究战略和培训计划还将促进成功过渡到独立的 这位研究人员致力于帮助PLWD和他们的照顾者在痴呆症护理过程中茁壮成长。

Project Summary / Abstract Within 10 years, most persons living with Alzheimer’s disease and related dementias (AD/ADRD; PLWD) will die, creating 13+ million new bereaved AD/ADRD caregivers. 25% of bereaved AD/ADRD caregivers have clinically ‘complicated grief’, which impairs nearly all aspects of their lives. Among bereaved AD/ADRD caregivers who are not clinically impaired, millions still suffer from higher depressive symptoms and loneliness as well as reduced well-being, physical function, self-care, and personal growth. Researchers may be tempted to treat bereaved AD/ADRD caregivers as a homogenous group, but bereavement differs between key kin subgroups of spouses and adult children. Unfortunately, how bereavement differs for extended family is difficult to discern. The long-term goal of this research is to develop interventions to meet the needs of bereaved AD/ADRD caregivers. The objective of this proposal is to test a comprehensive model of bereaved AD/ADRD caregiver needs and identify need satisfying experiences within key kin subgroups that are amenable to future intervention. The central hypothesis is that bereaved AD/ADRD caregivers have a common set of needs that influence clinical and subclinical outcomes, but that subgroups meet those needs in different ways, based on evidence from self-determination theory and 10 months observing bereaved AD/ADRD caregivers. Autonomy, competence, and relatedness are hypothesized to form a common set of needs essential to clinical and subclinical outcomes for bereaved AD/ADRD caregivers (Aim 2; tested in a survey of 400 bereaved AD/ADRD caregivers). Key subgroups are hypothesized to meet these needs differently (Aim 3; tested in semi-structured interviews with 36-45 bereaved AD/ADRD caregivers). Through a tailored training plan and world-renowned- expert mentorship in one of the nation’s foremost schools of public health, the candidate will gain expertise in bereavement, stakeholder engagement, qualitative methods, and mixed methods to facilitate completion of the long-term goal of this research. Complementing the research team, a Community Advisory Board (CAB) of bereaved AD/ADRD caregivers and stakeholders will advise the present project and the PI’s broader research program aimed at helping bereaved AD/ADRD caregivers. CAB members represent different races, ethnicities, sexes, genders, ages, clinical specialties, types of dementia, time since bereavement, community organizations, and geographic locations. After this award, the CAB will help guide development of interventions based on the findings of Aims 2 and 3. The proposed research is innovative in its focus on key subgroups, application of self-determination theory, and diverse CAB focused on bereaved AD/ADRD caregivers. The work will address the NIA’s goal to increase understanding of bereaved AD/ADRD caregivers’ needs, informing future interventions that reduce the clinical and subclinical consequences of bereavement. Together the integrated research strategy and training plan will also facilitate a successful transition to independence for a researcher committed to helping PLWD and their caregivers thrive throughout the dementia caregiving journey.