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

BackgroundMultiple 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.MethodA 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.ResultsWe 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."ConclusionThis 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.