Understanding the lived experience of couples across the trajectory of dementia

总结 阿尔茨海默病（AD）现在经常在其早期阶段被诊断出来。除了呈现的压力源之外， 任何慢性疾病，老年夫妇保持关系完整的能力可能会受到损害， AD的特异性和进行性症状。到目前为止，大多数痴呆症的心理社会研究都集中在 无论是对AD患者还是对护理者。我们的研究将集中在 他们我们将从32对老年夫妇（64人）中获得关于他们的特征的定性数据。 通过进行焦点小组讨论，从夫妻双方成员的角度探讨夫妻关系。然后我们将 招募不同文化和种族的老年夫妇样本[300对老年夫妇（600人）]， 其成员的范围从认知正常到基线时的早期痴呆。后续行动将 每隔6个月进行一次，为期三年（六次评估），包括夫妇双方， 阿尔茨海默病的早期阶段，只有照顾者，当参与者过渡到中期， 晚期我们把认知正常的夫妇作为参照组， 改变的力量我们的社会心理评估包括认知功能、日常生活活动和 行为，以及社会支持，应对，心理健康和自我评价的身体健康，以及时间， 过渡，如住宿照顾安置。我们获得的信息将用于进行交叉- 截面和纵向分析，发展关系的类型学，使我们能够调查的影响， 这些关系类型的结果，如夫妻双方的情感和身体健康， 因为其中一个成员越来越受到阿尔茨海默病的影响。通过长期跟踪这些夫妇， 将能够跟踪关系风格的变化，沿着认知、功能和行为的变化 地位、社会支持和健康结果。我们将根据以下内容开发尝试性的类型学和因果模型： 基线数据。纵向研究将使我们能够证实或完善模型，并阐明 关系的风格和变化，最有可能保持双方成员的夫妇的福祉。 在我们之前的经验中，最有力的结果调解人是社会支持，我们计划看看什么作用， 在这项研究中也起到了心理和身体健康的作用。我们希望发现， 进步，健康的配偶将不得不修改他或她对生病配偶支持的期望， 如果他/她能从其他人，特别是家人那里得到更令人满意的情感支持，结果会更好。 成员这项研究的结果将包括统计模型的发展，以及对 夫妇类型学，这将使我们能够设计干预措施，以帮助夫妇成功地适应和尽量减少 阿尔茨海默病对他们的关系、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.