Understanding the lived experience of couples across the trajectory of dementia

总结 阿尔茨海默病 (AD) 现在经常在早期阶段被诊断出来。除了所呈现的压力源之外 由于任何慢性疾病，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 要么针对 AD 患者，要么针对护理人员。我们的研究将集中于两者之间的关系 他们。我们将从 32 对老年夫妇（64 人）那里获取关于他们的特征的定性数据。 通过开展焦点小组活动，从夫妻双方的角度来了解关系。我们随后将 招募具有文化和种族多样性的老年夫妇样本 [300 名老年夫妇（600 人）]， 其成员的范围从基线时认知正常到早期痴呆。后续将 三年内每隔 6 个月进行一次（六次评估），并包括夫妻双方 阿尔茨海默氏病的早期阶段，只有参与者过渡到中期和中期时的照顾者 后期阶段。我们将认知正常的夫妇作为参照组，以便能够理解 的变化。我们的心理社会评估包括认知功能、日常生活活动和 行为，以及社会支持、应对、心理健康和自评身体健康，以及时间 过渡，例如寄宿护理安置。我们获得的信息将用于进行交叉 截面和纵向分析，开发关系类型，并使我们能够调查效果 这些关系类型对夫妻双方成员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病而变得越来越受损。通过长期跟踪这对夫妇，我们 将能够跟踪关系风格的变化以及认知、功能和行为的变化 状况、社会支持和健康结果。我们将开发试探性类型学和基于因果模型 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福祉的关系方式和变化。 根据我们之前的经验，影响结果最有力的中介因素是社会支持，我们计划看看社会支持扮演什么角色 在这项研究中，这也影响心理和身体健康结果。我们期望发现痴呆症 进步，健康的配偶将不得不改变他或她对患病配偶支持的期望，并且 如果他/她从他人，尤其是家人那里获得更令人满意的情感支持，将会有更好的结果 成员。这项研究的结果将包括统计模型的开发以及对 夫妻类型学将使我们能够设计干预措施，帮助夫妻成功适应并最大限度地减少 阿尔茨海默病对他们的关系、健康结果和护理成本的负面影响。

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.