Understanding the lived experience of couples across the trajectory of dementia

总结 阿尔茨海默病和相关疾病（ADRD）现在经常在早期阶段被诊断出来。除了 任何慢性疾病所带来的压力，老年夫妇保持关系完整的能力可能会 被ADRD的特定和进行性症状破坏。到目前为止，大多数社会心理学研究 痴呆症集中在患有ADRD的人或单独的照顾者身上。我们的研究将集中在 他们之间的关系。我们将从不同文化和种族的老年夫妇中招募样本 [300夫妇（600人）]，其成员将从认知正常到早期 基线痴呆。随访将每隔6个月进行一次，为期3年（6次评估），包括 夫妇双方成员通过ADRD的早期阶段，只有照顾者时，参与者 过渡到中后期。我们将认知正常的夫妇作为参考组， 使我们能够理解变化。我们的社会心理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，以及 过渡时间，如住宿照顾安置。我们获取的信息将用于 横向和纵向分析，发展关系的类型学，使我们能够调查 这些关系类型对结果的影响，如双方成员的情绪和身体健康， 这对夫妇，因为一个成员越来越受到ADRD的损害。随着时间的推移，我们将 能够跟踪关系风格的变化沿着认知、功能和行为状态的变化， 社会支持和健康成果。我们将根据基线开发尝试性的类型学和因果模型 数据纵向研究将使我们能够证实或完善模型，并阐明关系 最有可能保持夫妻双方幸福的风格和变化。最后一 为进行跟进评估，我们将与32对年长夫妇（64人）进行焦点小组， 关于他们关系的特点以及他们如何变化的数据，从双方的角度来看， 夫妻的成员。这种定性数据也将允许更密切地审查人际关系， 纵向观察到的变化或连续性可能发生的动力学。在我们之前的 经验，结果最强大的调解人是社会支持，我们计划看看它在其中扮演什么角色。 精神和身体健康的结果在这项研究中，以及。我们希望发现，随着痴呆症的进展， 好的配偶将不得不修改他或她对生病配偶的支持的期望，并且会有 如果她/他从其他人，特别是家庭成员那里得到更令人满意的情感支持，结果会更好。的 这项研究的结果将包括统计模型的发展，以及对 将使我们能够设计干预措施，以帮助夫妇成功地适应，并尽量减少负面影响， ADRD对他们的关系和健康结果和护理成本。

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.