Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), site Witten, Witten, Germany.
Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), site Rostock/Greifswald, Greifswald, Germany.
BMC Geriatr. 2022 Sep 1;22(1):723. doi: 10.1186/s12877-022-03310-1.
Most persons with dementia live at home and want to stay there as long as possible. In most cases, informal carers such as spouses or children care for them. Together with other family members and professional carers, they form care arrangements to address the complex needs of persons with dementia. One major aim of informal carers is to keep the care arrangement stable. The middle-range theory of 'stability of home-based care arrangements for people living with dementia' (SoCA-Dem theory) offers a theory to understand what constitutes and influences the stability of home-based care arrangements. Based on this theory, the aim of this study was to (1) uncover the underlying structures of differences and commonalities of home-based care arrangements for persons living with dementia, (2) construct types of these care arrangements, and (3) compare these types with regard to their stability.
This is a secondary analysis of data from a convenience sample of n = 320 care arrangements for persons with dementia obtained in the observational DemNet-D study. Data were analysed using multiple correspondence analysis and hierarchical cluster analysis. Sociodemographic data and variables related to the structure of the care arrangement (D-IVA), burden of the informal carer (BICS-D), dementia severity (FAST), and quality of life of the person with dementia (QOL-AD) were included.
The multiple correspondence analysis identified 27 axes that explained the entire variance between all care arrangements. The two axes 'dementia and care trajectory' and 'structure of the dyadic relationship' best distinguished care arrangements from each other and together explained 27.10% of the variance. The subsequent cluster analysis identified four types of care arrangements. Two types included spouse-centred care arrangements, and two types included child-centred care arrangements at different phases of the dementia and care trajectory. The types differ with regard to their stability.
The results highlight the heterogeneity and commonality of care arrangements for persons living with dementia. They contribute to a better understanding of informal dementia home care. Furthermore, the results can guide the development of tailored support for persons living with dementia and their caring families.
大多数痴呆症患者都在家中生活，并希望尽可能长时间地留在家里。在大多数情况下，配偶或子女等非专业照顾者会照顾他们。他们与其他家庭成员和专业照顾者一起，制定照顾安排，以满足痴呆症患者的复杂需求。非专业照顾者的主要目标之一是保持照顾安排的稳定。“痴呆症患者居家照顾安排稳定性的中程理论”（SoCA-Dem 理论）提供了一种理解构成和影响居家照顾安排稳定性的理论。基于该理论，本研究的目的是：（1）揭示痴呆症患者居家照顾安排的差异和共性的潜在结构；（2）构建这些照顾安排的类型；（3）比较这些类型的稳定性。
这是对便利样本中 n=320 名痴呆症患者居家照顾安排的 DemNet-D 观察研究数据的二次分析。使用多元对应分析和层次聚类分析对数据进行分析。纳入的社会人口学数据和与照顾安排结构相关的变量（D-IVA）、非专业照顾者的负担（BICS-D）、痴呆症严重程度（FAST）和痴呆症患者的生活质量（QOL-AD）。
多元对应分析确定了 27 个轴，这些轴解释了所有照顾安排之间的整个方差。“痴呆症和照顾轨迹”和“二元关系结构”这两个轴可以最好地区分彼此之间的照顾安排，共同解释了 27.10%的方差。随后的聚类分析确定了四种照顾安排类型。两种类型包括以配偶为中心的照顾安排，两种类型包括在痴呆症和照顾轨迹的不同阶段以子女为中心的照顾安排。这些类型在稳定性方面存在差异。
研究结果突出了痴呆症患者照顾安排的异质性和共性。它们有助于更好地理解非专业的痴呆症居家照顾。此外，研究结果可以为痴呆症患者及其照顾家庭提供量身定制的支持。
