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

项目总结/摘要 在10年内，大多数患有阿尔茨海默病和相关痴呆症（AD/ADRD; PLWD）的人将 死亡，创造了1300多万新的丧失AD/ADRD照顾者。25%的AD/ADRD照顾者 临床上的“复杂的悲伤”，这几乎损害了他们生活的各个方面。AD/ADRD 即使没有临床症状的照顾者，数百万人仍然遭受着更严重的抑郁症状和孤独感。 以及降低的幸福感、身体功能、自我照顾和个人成长。研究人员可能会受到诱惑 将失去亲人的AD/ADRD护理人员视为同质群体，但关键亲属之间的丧亲之痛有所不同 配偶和成年子女的分组。不幸的是，如何丧亲不同的大家庭是困难的 去辨别这项研究的长期目标是制定干预措施，以满足丧亲者的需求 AD/ADRD护理人员。本提案的目的是测试丧失亲人的AD/ADRD的综合模型 照顾者的需要，并确定需要满足的经验，在关键亲属亚群，是适合未来 干预核心假设是，丧失亲人的AD/ADRD照顾者有一套共同的需求， 影响临床和亚临床结果，但亚组以不同方式满足这些需求， 来自自我决定理论的证据和10个月的观察丧失AD/ADRD照顾者。自主权， 能力和相关性被假设为形成临床和 丧失AD/ADRD照顾者的亚临床结局（目标2;在400例丧失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;在半结构化测试中进行测试） 与36-45名失去亲人的AD/ADRD护理人员的访谈）。通过量身定制的培训计划和世界知名的- 在全国最重要的公共卫生学校之一的专家指导，候选人将获得专业知识， 丧亲之痛、利益相关者参与、定性方法和混合方法，以促进完成 本研究的长期目标。作为研究小组的补充，一个社区咨询委员会（CAB） 失去亲人的AD/ADRD护理人员和利益相关者将为本项目和PI更广泛的研究提供建议 该计划旨在帮助失去亲人的AD/ADRD护理人员。CAB成员代表不同的种族，民族， 性别、性别、年龄、临床专业、痴呆类型、丧亲时间、社区 组织和地理位置。在获得该奖项后，CAB将帮助指导干预措施的制定 根据目标2和3的调查结果。拟议的研究在重点关注关键亚组方面具有创新性， 自我决定理论的应用，和不同的CAB集中在丧失AD/ADRD照顾者。的 工作将解决NIA的目标，以增加对丧失AD/ADRD照顾者需求的理解， 未来的干预措施，减少丧亲之痛的临床和亚临床后果。一起 综合研究战略和培训计划也将有助于成功过渡到独立， 研究人员致力于帮助PLWD和他们的照顾者在整个痴呆症治疗过程中茁壮成长。

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.