CHRC, NOVA Medical School, Faculdade de Ciências Médicas, Universidade NOVA de Lisboa, Lisbon, Portugal.
CHRC, NOVA National School of Public Health, Universidade NOVA de Lisboa, Lisbon, Portugal.
Dementia (London). 2024 Feb;23(2):210-233. doi: 10.1177/14713012231220759. Epub 2023 Dec 15.
Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches. A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis. Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., 'communication') may even improve after initial decline. 'Closeness' was consistently altered over time, from carers' perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that 'mixed feelings' (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services' assistance, seemed to facilitate positive (re)appraisals of the relationship. A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements.
亲密关系会影响痴呆症患者及其家属的健康和生活质量。然而，我们对不同关系领域的作用知之甚少，定量方法已被证明在这一研究领域存在局限性。我们旨在随着时间的推移研究这些关系领域，对比痴呆症患者及其主要照顾者的观点，同时利用定量和定性方法。我们采用了收敛混合方法设计，对来自欧盟 Actifcare 项目样本的 66 对葡萄牙社区居住的痴呆症患者及其主要照顾者的纵向数据（三年中的四个时间点）进行分析。定量评估使用了社会人口统计学和临床变量以及积极影响指数评分，并进行了描述性和推断性分析。通过个人和联合半结构化访谈收集的定性数据，使用主题分析进行了探索。定量和定性结果都表明，一些关系质量领域受到不同方式的影响，变化发生在不同阶段。一些（例如“沟通”）甚至可能在最初下降后有所改善。从照顾者的角度来看，“亲密感”随着时间的推移而不断变化，在机构化方面发挥着重要的保护作用。总体而言，痴呆症患者及其照顾者对关系质量的变化有不同的看法，这些不同的观点往往会导致紧张。定性数据显示，“混合情绪”（矛盾心理）涉及复杂的体验，与仅负面情绪相比，可能更难处理。此外，感知到的非正式支持，特别是来自大家庭的支持，以及获得正式服务的帮助，似乎有助于积极（重新）评估关系。随着痴呆症的进展，更深入地了解关系质量及其领域，可能有助于针对关系中可改变的方面量身定制干预措施，满足双亲和家庭的需求并珍惜其资源。及时评估可以识别处于风险中的关系和需要支持的关系，包括替代照顾安排。
