Understanding the lived experience of couples across the trajectory of dementia

了解患痴呆症的夫妇的生活经历

基本信息

批准号：
10015193
负责人：
Mary Sherman Mittelman
金额：
$ 58.73万
依托单位：
NEW YORK UNIVERSITY SCHOOL OF MEDICINE
依托单位国家：
美国
项目类别：
财政年份：
2019
资助国家：
美国
起止时间：
2019-09-15 至 2024-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10015193
关键词：
Activities of Daily Living Affect Alzheimer&apos s Disease Behavior Behavioral Caregiver well-being Caregivers Characteristics Chronic Disease Cognitive Couples Cross-Sectional Studies Data Dementia Development Diagnosis Disease Disease Progression Elderly Elements Emotional Evaluation Exogenous Factors Family member Feedback Focus Groups Future Goals Health Impairment Individual Institutionalization Intervention Learning Longitudinal Studies Measures Mediator of activation protein Mental Depression Mental Health Modeling Outcome Participant Personal Satisfaction Personality Persons Play Prevention Process Psyche structure Psychosocial Assessment and Care Public Health Research Residential Treatment Risk Role Sampling Social support Spouses Statistical Models Stress Structure Symptoms Testing Time Typology Writing base care costs causal model cognitive function coping evidence base expectation experience family support functional decline high risk improved longitudinal analysis member mild cognitive impairment personalized strategies physical conditioning programs psychosocial racial diversity recruit response role model stressor therapy design

项目摘要

Summary Alzheimer’s disease (AD) is now frequently diagnosed in its early stages. In addition to the stressors presented by any chronic disease, an older couple’s ability to keep their relationship intact may be undermined by the specific and progressive symptoms of AD. Until now, most psychosocial research in dementia has focused either on the person with AD or on the caregiver separately. Our study will focus on the relationship between them. We will acquire qualitative data from 32 older couples (64 individuals) about the characteristics of their relationship from the perspective of both members of the couple by conducting focus groups. We will then recruit a culturally and racially diverse sample of older adult couples [300 older adult couples (600 individuals)], the members of which will range from cognitively normal through early dementia at baseline. Follow-ups will occur at 6 month intervals for three years (six assessments) and include both members of the couple through the early stage of Alzheimer’s disease and only the caregivers when participants transition to the middle and late stages. We include cognitively normal couples to serve as a reference group, to enable an understanding of change. Our psychosocial assessment includes measures of cognitive function, activities of daily living and behavior, as well as social support, coping, mental health and self-rated physical health, as well as time to transitions such as residential care placement. The information we obtain will be used to conduct both cross- sectional and longitudinal analyses, develop typologies of relationships, and enable us to investigate the effect of these relationship types on outcomes such as emotional and physical health of both members of the couple, as one member becomes increasingly impaired by Alzheimer’s disease. By following the couples over time, we will be able to track changes in relationship style along with change in cognitive, functional and behavioral status, social support and health outcomes. We will develop tentative typologies and a causal model based on baseline data. The longitudinal study will enable us to corroborate or refine the model and elucidate the relationship styles and changes that are most likely to maintain the well-being of both members of the couple. In our prior experience, the most powerful mediator of outcome is social support, and we plan to see what role that plays in mental and physical health outcomes in this study as well. We expect to find that as dementia advances, the well spouse will have to modify his or her expectations for support from the ill spouse, and that there will be better outcomes if s/he has more satisfactory emotional support from others, particularly family members. The results of this study will include the development of statistical models, and descriptions of couple typologies that will enable us to design interventions to help couples to adapt successfully and minimize the negative effects of Alzheimer’s disease on their relationship and on health outcomes and care cost.

概括阿尔茨海默氏病（AD）现在经常在早期阶段被诊断出。除了给出的压力源通过任何慢性病 AD的特定且进行性症状。到目前为止，大多数痴呆症的心理社会研究都集中在对拥有AD的人或看护者分别对。我们的研究将集中于他们。我们将从32对年长的夫妇（64个人）中获取有关其特征的定性数据从这对夫妇的两个成员的角度通过进行焦点小组的角度。然后我们会招募一个在文化和种族上多样化的老年夫妇样本[300名老年夫妇（600个人）]，其成员的范围从认知正常到基线早期痴呆症。后续行动会以6个月的间隔发生三年（6个评估），并包括这对夫妇的两个成员阿尔茨海默氏病的早期阶段，仅当参与者过渡到中间和晚期。我们包括认知正常的夫妻作为参考组，以使理解能够理解变革。我们的社会心理评估包括认知功能的衡量，日常生活的活动和行为以及社会支持，应对，心理健康和自我评估的身体健康以及时间居民护理安置等过渡。我们获得的信息将用于进行交叉分段和纵向分析，发展关系的类型，使我们能够研究效果在这些关系类型的结果中，夫妻俩的情感和身体健康等结果随着一个成员越来越受到阿尔茨海默氏病的损害。随着时间的流逝，我们跟随夫妻将能够跟踪关系风格的变化以及认知，功能和行为的变化地位，社会支持和健康成果。我们将开发基于基线数据。纵向研究将使我们能够证实或完善模型并阐明该模型关系风格和变化最有可能维持夫妻俩的福祉。根据我们先前的经验，最有力的结果调解人是社会支持，我们计划看看角色这在本研究中也表现出精神和身体健康的结果。我们希望发现这是痴呆症进步，井配偶将不得不修改他或她对病情配偶的支持的期望，并且如果他/她有更多的满意厂的情感支持，尤其是家庭，将会有更好的结果成员。这项研究的结果将包括开发统计模型和描述夫妇类型学可以使我们能够设计干预措施，以帮助夫妻成功适应并最小化阿尔茨海默氏病对他们的关系以及健康结果和护理成本的负面影响。