Understanding the lived experience of couples across the trajectory of dementia

摘要 阿尔茨海默病(AD)现在经常在早期阶段被诊断出来。除了呈现的压力源之外 由于任何慢性病，老年夫妇维持关系完整的能力可能会受到 阿尔茨海默病的特定和进行性症状。到目前为止，大多数关于痴呆症的心理社会研究都集中在 或者对患有AD的人或单独对照顾者。我们的研究将集中在两者之间的关系 他们。我们将从32对年龄较大的夫妇(个人)那里获得关于他们特征的定性数据 从夫妻双方成员的角度出发，通过开展焦点小组活动。到时候我们会的 招募文化和种族多样化的老年夫妇[300对老年夫妇(600人)]， 其成员范围从认知正常到基线的早期痴呆症。后续行动将 每隔6个月进行一次，为期三年(六次评估)，包括夫妻双方通过 阿尔茨海默病的早期阶段和只有照顾者当参与者过渡到中期和 后期阶段。我们包括认知正常的夫妇作为参照组，以便能够理解 变化的力量。我们的心理社会评估包括认知功能、日常生活能力和 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 过渡，如寄宿照料安置。我们获得的信息将被用来进行交叉- 横向和纵向分析，发展关系类型，并使我们能够调查其影响 这些关系类型对夫妻双方的情感和身体健康等结果的影响， 随着一名成员因阿尔茨海默氏症而变得越来越虚弱。通过随着时间的推移跟踪这些情侣，我们 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、社会支持和健康结果。我们将开发试探性类型学和基于以下内容的因果模型 基线数据。纵向研究将使我们能够证实或完善模型，并阐明 最有可能维持夫妻双方幸福的关系风格和变化。 在我们之前的经验中，对结果影响最大的中介是社会支持，我们计划看看它在其中扮演什么角色 这在这项研究中也对心理和身体健康结果起到了作用。我们预计会发现这是痴呆症 预付款，健康的配偶将不得不改变他或她对来自患病配偶的支持的期望，并且 如果S从他人，特别是家人那里得到更多令人满意的情感支持，结果会更好 会员。这项研究的结果将包括统计模型的发展，以及对 夫妇类型，这将使我们能够设计干预措施，帮助夫妇成功地适应并尽量减少 阿尔茨海默病对他们的关系以及对健康结果和护理费用的负面影响。

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.