Understanding the lived experience of couples across the trajectory of dementia

摘要 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。除了……之外 任何慢性病带来的压力，老年夫妇维持关系完好无损的能力可能是 由于ADRD的具体和渐进性症状而受到损害。到目前为止，大多数心理社会研究都是 痴呆症要么集中在ADRD患者身上，要么单独集中在照顾者身上。我们的研究将集中在 他们之间的关系。我们将招募文化和种族多元化的老年夫妇样本 [300对夫妇(600人)]，成员范围从认知正常到早期 痴呆症在基线水平。将在三年内每隔6个月进行一次跟踪(6次评估)，包括 夫妻双方成员都通过了ADRD的早期阶段，只有护理者才参与其中 向中后期过渡。我们包括认知正常的夫妇作为参照组，以 使人们能够理解变化。我们的心理社会评估包括认知功能的测量， 日常生活和行为活动、社会支持、应对、心理健康和自评身体健康 作为过渡的时间，如寄宿照料安置。我们获得的信息将被用于 横截面和纵向分析，发展了关系类型，并使我们能够调查 这些关系类型对两个成员的情绪和身体健康等结果的影响 这对夫妇，因为其中一名成员越来越受到ADRD的损害。通过随着时间的推移跟踪这些夫妇，我们将 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， 社会支持和健康结果。我们将开发试探性类型学和基于基线的因果模型 数据。纵向研究将使我们能够证实或完善模型，并阐明两者之间的关系 最有可能维持夫妻双方幸福的风格和变化。上一次之后 后续评估，我们将与32对大龄夫妇(个人)进行重点小组，以获得定性 从双方的角度来看，关于他们关系的特征以及它们如何变化的数据 这对夫妇的成员。这种定性的数据也将允许更仔细地检查人际关系 纵向观察到的变化或连续性可能发生的动态。在我们之前的 经验，对结果最有力的中介是社会支持，我们计划看看它在其中扮演什么角色 这项研究的心理和身体健康结果也是如此。我们希望发现，随着痴呆症的发展， 好的，配偶将不得不改变他或她对患病配偶的支持的期望，这将是 如果S从其他人，特别是家人那里得到更满意的情感支持，结果会更好。这个 这项研究的结果将包括统计模型的发展，以及对以下两种类型的描述 将使我们能够设计干预措施，帮助夫妇成功地适应并最大限度地减少 ADRD对他们的关系以及健康结果和护理费用进行了评估。

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.