Stewardship and Family Caregiving for People with Dementia in Shanghai

ABSTRACT

Technologies such as medical treatment, assistive care devices, and monitoring tools represent strategies for dealing with the progression of dementia. Drawing on ethnographic data from Shanghai, this study examines how family caregivers engage with technology to enhance their care performance. I argue for a stewardship approach to dementia care given that care is not only a moral experience but also an intellectual labor, which requires the competence of family caregivers. This stewardship approach contributes to our understanding of family caregivers’ efforts at coming to terms with the changing discourse on dementia and the broad social change in China.

KEYWORDS:

• China
• care
• stewardship
• dementia
• family caregiving
• technology

Acknowledgements

The study was conducted with Institutional Review Board approval from Case Western Reserve University (Protocol Number: IRB-2016–1737). I would like to thank the three reviewers and Dr. Rebecca Marsland for recommendations on the final version, and Dr. Jeanne Shea, Dr. Lihong Shi, and Dr. Arthur Kleinman on the early versions of this article.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

¹ Instrumental activities include dressing, shopping, transportation, and meal preparation as used on the Activities of Daily Living (ADL) and the Instrumental Activities of Daily Living (IADL) scales.

2. Routines are activities that are done without planning, such as meals that we eat on a regular basis; timing is about a particular point of time that something happens, such as injecting insulin for people with diabetes 15 minutes before meals.

3. See the website: https://www.merriam-webster.com/dictionary/technology.

4. In 2018, the gross domestic product (GDP) per capita in Shanghai exceeded 20,000 USD.

5. In 2017, the government had initiated long-term care insurance, which primarily focused on those aged 60 and above who required certain levels of assistance. Since 2018, the Shanghai government has expanded this program to all eligible senior citizens.

6. The fact that there were people with dementia symptoms, but without an official diagnosis can be attributed to the severe stigma associated with dementia in China. Even so, their family caregivers were fully aware of this illness and devoted a lot of attention to their kin.

7. Family caregivers shared a lot about the availability of drugs or their clinical phases either online or offline. In the memory clinic where I conducted my research, there was a physician directly in charge of the pilot treatment. Some early-stage patients actively got involved in the research.

8. In China, mental health care and general health care are structurally two different systems. Since mental disorders are severely stigmatized in China, people living with dementia and their families prefer treatments from neurology, gerontology, and memory clinics to psychiatric care.

9. 120 in China is equivalent to 911 in the US, i.e., the phone number of emergency medical care.

Additional information

Funding

This research was funded by the Wenner-Gren Foundation for Anthropological Research [#9361].

Notes on contributors

Yan Zhang

Yan Zhang is a postdoctoral research fellow at Harvard University. Her research focuses on dementia, disability, care, and technology.