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：
10270548
负责人：
Mary Sherman Mittelman
金额：
$ 5.68万
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/10270548
关键词：
Activities of Daily Living Address Adult Adult Children Affect Aging Alzheimer&apos s Disease Alzheimer&apos s disease risk Area Attention Back Behavior Behavioral Caregivers Caring Characteristics Child Chronic Disease Clinical Trials Design Cognition Cognitive Collaborations Counseling Couples Cross-Sectional Studies Custom Data Dementia Developed Countries Development Diagnosis Disease Elderly Emotional Family Family Caregiver Family member Focus Groups Formal caregiving Foundations Future Generations Goals Grief reaction Health High Prevalence Home Impaired cognition Impairment Incidence Individual Intervention K-Series Research Career Programs Learning Literature Longitudinal Studies Measures Mediator of activation protein Mental Health Mentorship Modeling New York Onset of illness Outcome Parent-Child Relations Parents Participant Personal Satisfaction Persons Play Psyche structure Psychosocial Assessment and Care Public Health Quality of life Race Reporting Research Research Methodology Research Personnel Residential Treatment Rewards Role Sampling Self Efficacy Social support Source Spouses Statistical Models Symptoms Time Training Translational Research Typology Universities Work aging population base care costs care recipients career caregiver interventions caregiving causal model cognitive function coping dementia care dementia risk disability ethnic difference expectation experience falls follow up assessment functional decline longitudinal analysis member mild cognitive impairment neuropsychiatric symptom offspring physical conditioning primary caregiver programs psychological distress psychosocial racial and ethnic racial difference racial diversity recruit satisfaction stressor telehealth therapy design trend

项目摘要

Summary Alzheimer’s disease and related disorders (ADRD) are 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 ADRD. Until now, most psychosocial research in dementia has focused either on the person with ADRD or on the caregiver separately. Our study will focus on the relationship between them. We will recruit a culturally and racially diverse sample of older adult couples [300 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 ADRD 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, 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 ADRD. 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. After the last follow-up assessment, we will conduct focus groups with 32 older couples (64 individuals) to acquire qualitative data about the characteristics of their relationship and how they have changed, from the perspective of both members of the couple. This qualitative data will also permit a closer examination of the interpersonal dynamics through which changes or continuity observed longitudinally may have occurred. 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 ADRD on their relationship and on health outcomes and care cost.

概括阿尔茨海默病及相关疾病 (ADRD) 现在经常在早期阶段被诊断出来。任何慢性疾病带来的压力，老年夫妇保持关系完整的能力可能会受到影响迄今为止，大多数心理社会研究都受到 ADRD 的具体和进行性症状的影响。痴呆症要么关注 ADRD 患者，要么关注护理人员，我们的研究将分别关注。我们将招募具有不同文化和种族背景的老年夫妇样本。 [300对夫妇（600个人）]，其成员范围从认知正常到早期基线痴呆症将每隔 6 个月进行一次，持续三年（六次评估），包括 ADRD 早期阶段的夫妻双方成员以及参与者时的护理人员我们将认知正常的夫妇作为参考组，以过渡到中后期。我们的社会心理评估包括认知功能的测量，日常生活活动和行为、社会支持、应对、心理健康和自评身体健康，以及我们获得的信息将用于进行过渡（例如寄宿护理安置）。横断面和纵向分析，发展关系类型，并使我们能够调查这些关系类型对双方成员的情绪和身体健康等结果的影响随着其中一名成员受到 ADRD 的损害越来越严重，随着时间的推移，我们将跟踪这对夫妇。能够跟踪关系风格的变化以及认知、功能和行为状态的变化，我们将开发基于基线的暂定类型和因果模型。纵向研究将使我们能够证实或完善模型并阐明其中的关系。最有可能维持夫妻双方幸福的风格和变化。后续评估，我们将对 32 名老年夫妇（64 人）进行焦点小组，以获取定性的从双方的角度了解他们的关系特征以及关系如何变化的数据这些定性数据也将允许对人际关系进行更仔细的检查。在我们之前观察到的变化或连续性可能发生的动态。经验中，最有力的结果调节因素是社会支持，我们计划看看它在其中发挥什么作用我们希望在这项研究中发现，随着痴呆症的进展，心理和身体健康的结果也会随之变化。健康的配偶必须改变他或她对患病配偶支持的期望，并且将会有如果他/她从其他人（尤其是家庭成员）那里得到更令人满意的情感支持，就会得到更好的结果。这项研究的结果将包括统计模型的开发以及对耦合类型的描述将使我们能够设计干预措施，帮助夫妇成功适应并尽量减少负面影响 ADRD 对其关系以及健康结果和护理成本的影响。