A qualitative study of family caregivers’ coping strategies of looking after people with dementia in China

Abstract

Background and aims Globally, two thirds of people with dementia are cared for by their families or friends. Family caregivers’ coping strategies of managing the caregiving burden of dementia have been studied widely in western literature. However, few attempts have been made to explore the experience of family caregivers’ coping strategies in China. The aim of this study was to explore the family caregivers’ coping strategies when caring for people with dementia in one city in the province of Shandong, China. Methods Fourteen family caregivers were individually interviewed, and interpretative phenomenological analysis was used to identify themes within different family members. Results Four key themes were found: (a) being filial; (b) changing self and self-care; (c) seeking help; and (d) having hope and continuing life. Conclusion The study illustrates the different strategies developed by family members in order to cope with their new roles when caring for a relative who has dementia. It shows that cultural belief of filial piety plays a large role across these various coping strategies. It highlights how responsibility has been maintained and influenced by the specific sociocultural context. The results provide a useful foundation for developing interventions that support family caregivers cope with the burden of caring in this population.

Help-Seeking in Informal Family Caregivers of People with Dementia: A Qualitative Study with iSupport as a Case in Point

“…The influence of cultural values and family norms on help-seeking behaviors is quite well established in the literature, and varies across countries [ 35 , 36 ]. A recent qualitative study [ 37 ] found that Chinese cultural belief of filial piety, the filial obligation to provide for and look after elderly parents, played a main role in coping strategies adopted by family caregivers of people with dementia. Partially consistent with our results, authors found that although it prevented them from from seeking support outside the family, filial piety motivated caregivers to accept their caring role and to adjust themselves to daily caring duties.…”

The experiences of East Asian dementia caregivers in filial culture: a systematic review and meta-analysis

“…Several studies highlighted that recognizing and adhering to filial culture among East Asian dementia CGs was common (35,50,53,54,56). For example, in a study by Koo (50), Chinese Singaporean CGs demonstrated deep filial piety and reciprocity for the following reasons: repayment for their parents' care, practicing a religious faith, and having a Chinese identity.…”

“…Several studies explored the impact of filial culture on the role transition of dementia CGs (35,50,(53)(54)(55)(56). In East Asia, filial piety is a cultural belief in which participants assume the caregiving role when their family member becomes impaired and needs assistance.…”

Living with dementia: Why I am thinking of ‘death’

“…Dementia is a major cause of disability and mortality amongst older people, and it is recognized as a global issue that impacts public health and creates socio-economic burden ( Park et al, 2013 ; Wolters & Ikram, 2018 ). Dementia has caused a great deal of physical and psychological pressure for the person with dementia and their family caregivers ( Brodaty & Donkin, 2022 ; Xiuxiang et al, 2020 ; Zhang et al, 2020b ). Studies found that rates of depression, stress and suicidal thoughts are higher in family caregivers who are looking after people with dementia ( O'Dwyer et al, 2016 ; Zhang et al, 2021 ).…”