Fudan University School of Nursing, Shanghai, China.
Institute of Neurology, Huashan Hospital, Fudan University, Shanghai, China.
J Alzheimers Dis. 2022;86(3):1315-1322. doi: 10.3233/JAD-215612.
There has been a rich body of literature on informal caregivers of persons with dementia (PWD). However, little has been discussed on how to facilitate person-centered dementia care in home settings with spouses as primary caregivers. We tend to take it for granted that spouses provide person-centered care for PWD. However, being spouses of PWD and living with them for several decades does not necessarily mean that it is easier for them to provide person-centered dementia care and maintain valued and healthy relationships.
The current study aimed to explore dyadic experiences of PWD and their spousal caregivers and develop a culturally and contextually-sensitive understanding of person-centered dementia care in home-based settings.
A total of 20 dyads of PWD and their care partners were selected for this study. A trained qualitative interviewer conducted a one-on-one interview with each participant with dementia and their care partners separately. We adopted both conventional and directed content analyses.
Our findings provide examples of care partners provide person-centered care, resulting in a profound positive impact on their wellbeing. Adaptive leadership and collaborative work emerged as a key finding in facilitating person-centered dementia care. Cultural relevancy of person-centered dementia care was also interpreted from the data. The study findings provide implications for the evolving of person-centered dementia care model in home-based settings.
Findings from this study highlight the significance of facilitating person-centered dementia care in home-based settings between PWD and their primary family caregivers.
关于痴呆症患者(PWD)的非专业照护者的文献资料丰富,但关于如何在以配偶为主要照护者的家庭环境中促进以患者为中心的痴呆症护理,却鲜有探讨。我们往往认为配偶会为 PWD 提供以患者为中心的护理。然而,作为 PWD 的配偶并与他们共同生活几十年,并不一定意味着他们更容易提供以患者为中心的痴呆症护理,并维持有价值和健康的关系。
本研究旨在探讨 PWD 和他们的配偶照护者的双重体验,并对家庭环境中以患者为中心的痴呆症护理有一个文化和背景敏感的理解。
本研究共选择了 20 对 PWD 和他们的照护伙伴。一名经过培训的定性访谈员分别与每位痴呆症患者及其照护伙伴进行了一对一的访谈。我们采用了常规和定向内容分析。
我们的研究结果提供了照护伙伴提供以患者为中心的护理的例子,这对他们的幸福感产生了深远的积极影响。适应性领导和协作工作是促进以患者为中心的痴呆症护理的一个关键发现。数据还解释了以患者为中心的痴呆症护理的文化相关性。该研究结果为家庭环境中以患者为中心的痴呆症护理模式的发展提供了启示。
本研究的结果强调了在家庭环境中促进 PWD 和他们的主要家庭照护者之间以患者为中心的痴呆症护理的重要性。