Tensions in dementia care in China: An interpretative phenomenological study from Shandong province

Abstract

Aims:The study aims to analyse the tensions and the challenges of dementia care that are experienced by people with dementia and their family caregivers in China.Background: China has the largest dementia population in the world; however, dementia care services and related support services are still developing. Caring for a person with dementia is very challenging, as evidenced by many studies. As the majority of people with dementia are looked after by their family in their homes in China, it is very important to understand what people with dementia and their family caregivers are experiencing in the context of dementia care services that are in the process of developing. Design: Interpretative phenomenological analysis (IPA) was used. Method: Semi-structured individual interviews with 24 participants (10 people with dementia and 14 unrelated family caregivers) recruited from a mental health centre in Shandong Province. Findings: Three main themes emerged that highlighted unmet need: (a) Lack of support services, (b) Insufficient institutional care and (c) Social attitude and social stigma towards dementia. Conclusions: These themes reveal the challenges that the participants face in the context of dementia care services that are in the process of development in China;and how their lived experiences have been affected by the constraints of social support, public services, healthcare access, long-term care services and social stigma. Implications for practice:This study highlights the tensions that are identified by people with dementia and family caregivers. The research recommends that more support services would be beneficial for this group and would also enhance family support dementia care in China. Looking after an older family member is a culturally, socially and legally embodied norm in Chinese society, so it is important to address education for dementia awareness and the sustainability of family support care services in China by providing dementia services and resources to support both people with dementia and family caregivers.

Met and unmet care needs of home‐living people with dementia in China: An observational study using the Camberwell Assessment of Need for the Elderly

“…As age increases the risk of dementia, population aging will contribute to a rise in the number of people suffering from any forms of dementia. In China, the number of PWD is estimated to be >9 million, and is expected to exceed 40 million by 2050 21 . However, dementia care services and related support services are still developing.…”

“…However, dementia care services and related support services are still developing. Influenced by traditional Chinese culture, >90% of PWD live at home and are cared for by their families, whereas only those individuals with mild symptoms and from high‐income households have access to formal care at nursing institutions 21 . As home care and treatment for disabled and semi‐disabled older persons are not covered by basic health insurance, 22 such families, especially single‐child families, are under tremendous financial, physical and psychological pressure.…”

“…Up to 2019, there were 4452 employees in these institutions, with just 611 professional and technical staff 25 . Although the community organizes free medical checkups for older adults aged >65 years every year, the outcomes have not been followed up properly, and risk factors have not been effectively controlled 21 …”

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

“…Previous studies show that family caregivers are less likely to show negative psychological symptoms if they satisfied with their social interactions (Schulz andMartire, 2004, Brodaty andDonkin, 2009). This suggests that more formal support services in communities, such as family/dementia support group to provide sufficient social networks, are important in order to increase social connection and reduce F o r P e e r R e v i e w psychological stress and isolation for this group (Zwaanswijk et al, 2013, Chen et al, 2015, Zhang et al, 2019b.…”

Understanding dementia care in care home setting in China: An exploratory qualitative study

“…Owing to an ageing population, the prevalence of dementia in China is projected to surge with a 2.5fold increase, reaching 23.3 million by 2030 (Xu et al, 2017). A trend for seeking care home services for aged parents has been observed due to the one-child policy and urbanisation (Wong & Leung, 2012;Zhang et al, 2020). Statistics have shown that 8%-37% of 7.45 million residents in care homes in China have a diagnosis of dementia in 2017 (Song et al, 2014;Xinhua, 2019).…”