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. 2024 Dec 18;23(1):909.
doi: 10.1186/s12912-024-02588-3.

Striking a balance: health behaviour changes in Chinese spouses of people with dementia to manage dementia risk: a qualitative study

Shuyan Fang  1 , Wei Li  2 , Shizheng Gao  1 , Dongpo Song  1 , Shengze Zhi  1 , Yanyan Gu  1 , Jiao Sun  3
Affiliations

Striking a balance: health behaviour changes in Chinese spouses of people with dementia to manage dementia risk: a qualitative study

Shuyan Fang et al. BMC Nurs. .

Abstract

Background: Multiple studies have shown that spouses of people with dementia (PwD) are two to six times more likely to develop dementia compared to the general population. Encouraging healthy behaviours and addressing modifiable risk factors could potentially prevent or delay up to 40% of dementia cases. However, little is known about how health behaviours change when a spouse assumes the role of primary caregiver. Therefore, the aim of this study was to explore the shared lived experience of spousal caregivers of PwD, focusing on identifying the trajectory and key events of that shape health behaviour changes after their partner's diagnosis. These findings seek to inform strategies for adopting and sustaining healthy behaviours among spousal caregivers.

Method: A qualitative descriptive study was conducted. Using maximum variation and purposive sampling, 20 spouses of PwD who exhibited two or more risk factors were recruited for semistructured interviews. The interviews were transcribed verbatim and analysed using thematic analysis.

Results: We found that in traditional Chinese culture health behaviour changes for spouses and people with dementia coping with the challenges of dementia occurred in two directions; (a) priming-leaping-coping: becoming a "smart" caregiver and (b) struggling-trudging-silence: the process by which the self is "swallowed."

Conclusion: This study highlights how caregiving experiences influence spouses' health behaviors and dementia prevention, particularly in the Chinese context. The findings underscore the challenges of balancing caregiving with self-care. Culturally tailored, family-centered interventions are needed to support both caregivers and their long-term well-being.

Keywords: Dementia; Health behaviour; Qualitative studies; Risk factors; Spouses.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: All methods were performed in accordance with the relevant guidelines and regulations of the declaration of Helsinki (ethical approval and consent to participate). This study was approved by the ethics committee of Jilin university (No:2021121504)(Ethics Committee of School of Nursing, Jilin University). The aims and methods of the project were explained to all participants, and necessary assurance was given to them about the anonymity and confidentiality of their information and audio files. Informed consent was taken from all participants. The participants had the right to withdraw from the study during or at any other time. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Reflective memo sample. Reflective memos were added detailing the researcher’s experiences during the interviews and how these may have influenced the findings, conclusions and interpretations of the study
Fig. 2
Fig. 2
Trajectory of health behaviour changes in spouses of PwD. Figure 2 summarizes the trajectory of spouses’ health behavior changes and phased node events after the diagnosis of patients
See this image and copyright information in PMC

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