Affiliations: [a] Fudan University School of Nursing, Shanghai, China
| [b] Institute of Neurology, Huashan Hospital, Fudan University, Shanghai, China
| [c] National Center for Neurological Disorders, Huashan Hospital, Fudan University, Shanghai, China
| [d] National Clinical Research Center for Aging and Medicine, Huashan Hospital, Fudan University, Shanghai, China
| [e] Rory Meyers College of Nursing, New York University, NY, USA
| [f] NYU Aging Incubator, New York, NY, USA
Correspondence:
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Correspondence to: Bei Wu, PhD, FGSA, Rory Meyer College of Nursing, New York University, 433 1st Ave., New York, NY 10010, USA. E-mail: bei.wu@nyu.edu; ORCID: 0000-0002-6891-244X and Ding Ding, PhD, Institute of Neurology, Huashan Hospital, Fudan University, No.12 Middle Wulumuqi Road, Shanghai 200040, China. E-mail: dingding@huashan.org.cn; ORCID: 0000-0002-3260-7515
Abstract: Background: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. Objective: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. Methods: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. Results: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. Conclusion:Findings from this study highlight the significance of facilitating person-centered dementia care in home-based settings between PWD and their primary family caregivers.
Keywords: Dementia care, informal caregivers, person-centered care, theoretical model
