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

使用自决理论满足失智后痴呆症患者照顾者关键亚群的需求：混合方法

• 批准号: 10471350
• 负责人: Zachary G Baker
• 金额: $ 9.02万
• 依托单位: UNIVERSITY OF MINNESOTA
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2022-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10471350
• 关键词: Accounting; Address; Adult; Adult Children; Affect; Age; Alzheimer' s Disease; Alzheimer' s disease related dementia; Area; Award; Bereavement; Caregivers; Child; Clinical; Communities; Competence; Complement; Dementia; Development; Ensure; Ethnic Origin; Extended Family; Feedback; Funding; Future; Gender; Geographic Locations; Goals; Grief reaction; Impairment; Intervention; Interview; Leadership; Literature; Loneliness; Measures; Mentorship; Methods; Modeling; Motivation; Outcome; Pathologic; Personal Growth; Personal Satisfaction; Persons; Phase; Physical Function; Process; Public Health Schools; Qualitative Methods; Race; Research; Research Personnel; Sampling; Science; Self Care; Self Determination; Siblings; Source; Spouses; Structure; Subgroup; Surveys; Testing; Time; Training; United States National Institutes of Health; Work; base; caregiving; clinical risk; cognitive interview; community organizations; coping; dementia caregiving; depressive symptoms; design; ethnic minority; experience; innovation; medical specialties; member; novel; outreach; programs; racial and ethnic; recruit; satisfaction; secondary outcome; sex; stakeholder perspectives; theories; therapy development

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.

项目摘要 /摘要 在10年内，大多数患有阿尔茨海默氏病和相关痴呆症（AD/ADRD; PLWD）的人都会 死亡，创建13百万个新的丧亲广告/ADRD护理人员。有25％的丧亲广告/ADRD护理人员有 临床上“复杂的贪婪”，这会损害其生活的几乎所有方面。在丧亲的广告/adrd中 没有临床受损的护理人员，数以百万计的抑郁症状和孤独感仍然困扰 以及减少福祉，身体机能，自我保健和个人成长。研究人员可能会被诱惑 将丧亲的AD/ADRD护理人员视为同质群体，但丧亲之间有所不同 配偶和成年子女的亚组。不幸的是，大家庭的丧亲如何很难 辨别。这项研究的长期目标是制定干预措施以满足丧亲的需求 广告/ADRD护理人员。该建议的目的是测试一个丧亲的广告/ADRD的综合模型 护理人员的需求并确定可满足未来的主要亲属亚组的满足经验 干涉。中心假设是，丧亲的广告/ADRD护理人员有一系列共同的需求 影响临床和亚临床结果，但是该亚组以不同的方式满足这些需求 自决理论的证据和10个月观察丧亲的AD/ADRD护理人员的证据。自治， 假设能力和相关性构成对临床和 丧亲的广告/ADRD护理人员的亚临床结果（AIM 2；在对400个失去丧亲的AD/ADRD的调查中进行了测试 照顾者）。假设关键亚组以不同的方式满足这些需求（AIM 3；在半结构中测试 接受36-45个丧亲的广告/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 该国外国公共卫生之一的专家心态，候选人将获得专业知识 丧亲，利益相关者参与，定性方法和混合方法，以促进完成 这项研究的长期目标。补充研究团队，一个社区顾问委员会（CAB） 丧亲的广告/ADRD护理人员和利益相关者将为本项目和PI的更广泛的研究提供建议 旨在帮助丧亲的广告/ADRD护理人员的计划。出租车会员代表不同的种族，种族， 性别，性别，年龄，临床专业，痴呆症类型，丧亲以来的时间，社区 组织和地理位置。颁奖后，CAB将帮助指导开发干预措施 根据目标2和3的发现。拟议的研究是创新的，其重点是关键亚组， 自决理论的应用，以及专注于丧亲的AD/ADRD护理人员的潜水员。这 工作将解决NIA的目标，以提高对丧亲的广告/ADRD护理人员需求的了解，并告知 未来的干预措施减少了丧亲的临床和亚临床后果。在一起 综合研究策略和培训计划还将促进成功过渡到独立性 在整个痴呆症护理旅程中，研究人员致力于帮助PLWD及其护理人员持久。

项目成果

Open science in dementia care embedded pragmatic clinical trials.

• DOI: 10.1037/pag0000644
• 发表时间: 2022-03
• 期刊: Psychology and aging
• 影响因子: 3.7
• 作者: Baker ZG;Gustavson AM;Mitchell LL;Gaugler JE
• 通讯作者: Gaugler JE

Remote activity monitoring for family caregivers of persons living with dementia: a mixed methods, randomized controlled evaluation.

• DOI: 10.1186/s12877-021-02634-8
• 发表时间: 2021-12-18
• 期刊: BMC geriatrics
• 影响因子: 4.1
• 作者: Gaugler JE;Zmora R;Mitchell LL;Finlay J;Rosebush CE;Nkimbeng M;Baker ZG;Albers EA;Peterson CM
• 通讯作者: Peterson CM

Depressive Symptoms in Older African Immigrants with Mobility Limitations: A Descriptive Study.

行动不便的老年非洲移民的抑郁症状：描述性研究。

• DOI: 10.1080/07317115.2021.1976893
• 发表时间: 2023
• 期刊: Clinical gerontologist
• 影响因子: 2.8
• 作者: Nkimbeng,Manka;Nmezi,NwakaegoA;Baker,ZacharyG;Taylor,JanieceL;Commodore-Mensah,Yvonne;Shippee,TetyanaP;Szanton,SarahL;Gaugler,JosephE
• 通讯作者: Gaugler,JosephE

Delivering Personalized Recommendations to Support Caregivers of People Living With Dementia: Mixed Methods Study.

• DOI: 10.2196/35847
• 发表时间: 2022-05-03
• 期刊: JMIR AGING
• 影响因子: 4.9
• 作者: Cha, Jinhee;Peterson, Colleen M.;Millenbah, Ashley N.;Louwagie, Katie;Baker, Zachary G.;Shah, Ayush;Jensen, Christine J.;Gaugler, Joseph E.
• 通讯作者: Gaugler, Joseph E.