"I Wanted to be Proactive, but I Am Too Exhausted": Challenges and Stressors in Navigating End-of-Life Care for Older Parents Living with Dementia in China

Background and Purpose: China, where the world’s largest aging population resides, had roughly 15.07 million people over 60 years old living with dementia, accounting for a quarter of all dementia patients worldwide. Alongside population aging comes the challenge of providing respectful medical care to patients at the end of life. While hospice, as a Western concept, is rapidly developing in China, the services are mostly provided to and used by patients with cancer. The end-of-life experiences of persons living with dementia (PLWD) and their caregivers are largely overlooked in the current practice and literature. With the aim to provide policy and practice implications for developing a dementia-friendly and culturally-appropriate end-of-life care system, this study explored unique challenges and stressors that family caregivers experience when navigating end-of-life care for PLWD in China.

Methods: We collaborated with three community health centers in Shanghai, China. We conducted twenty-four in-depth, semi-structured interviews with 19 former caregivers of PLWD and five healthcare providers who have worked with them in the Department of Geriatrics, including 2 doctors, 2 nurses, and 1 social worker. Caregivers were recruited if they had provided care for PLWD within two years and had experienced PLWD’s death and dying process. Approximately two-thirds of the caregivers were adult children aged 45 and older, while one-third were spousal caregivers. Interviews were transcribed verbatim and coded thematically, guided by the three-step hybrid grounded theory model, which combines grounded theory and a conceptual framework in coding qualitative data.

Findings: Five themes emerged from the data describing multi-level challenges and stressors guided by the social-ecological theory. On the individual and interpersonal levels, emotional exhaustion of decision-making (theme 1) was most salient among caregivers, especially when there was a lack of communication between caregivers and healthcare professionals on required decision-making paperwork in emergency rooms. Caregivers also reported decisional conflicts among siblings (theme 2) and uncertainty about the validity of PLWD’s expressed wishes at the advanced dementia stage (theme 3). Caregivers thus tended to defer decisions to doctors and “signing whatever documents the doctor passed to us” because they were “too exhausted to make decisions”. On the mezzo level, a common theme emerged around the stigma towards hospice care for PLWD in the community (theme 4; as opposed to the acceptability of hospice for older adults with cancer), which prevents caregivers from seeking services and support for their dying loved ones. Dementia is considered a normal aging process in the Chinese community, while cancer is not; as such, seeking hospital-based hospice care (no home-based hospice is offered in China currently) for PLWD may be criticized as an unfilial behavior in the community. On the macro level, the lack of disease-specific end-of-life resources for PLWD (theme 5), which results in long waiting lists and increasing service prices, was a major challenge for caregivers to find care aligned with PLWD’s needs.

Conclusion and Implications: The findings highlight the need for multi-level interventions to address the individual, interpersonal, community, and policy-level challenges among caregivers who navigate end-of-life care for PLWD in China.