“Dementia” and “Good Dementia Care” in Denmark: Implications for Danish-Chinese Dementia Care Collaboration

Abstract

As countries around the world grapple with how to provide effective dementia care to aging citizens, there is tremendous opportunity for both constructive cross-cultural collaboration and ineffective attempts at transplanting care models into cultural contexts where they do not meet local needs. In response to increasing interest and investment in Danish-Chinese elder care and dementia care collaborations, this study draws on qualitative data collected in Denmark and long-term ethnographic research in China to explore the limitations and potentials of these collaborations. Specifically, this study explores (1) Danish understandings of what dementia is and (2) how understandings of “good dementia care” are influenced by those conceptions of dementia. In Denmark, semi-structured interviews (n=13) and direct, naturalistic observations at two care sites (n=3) were carried out in the Fall of 2016. Analysis in this project also draws on 16 months of ethnographic fieldwork carried out in Sichuan, China primarily in 2017-2018. Results of this study revealed that participants tended to understand “dementia” in terms of how it was experienced by individuals, how it fit into individuals’ existing relationships to the Danish state, and as a condition with shifting associations to stigma. “Good dementia care” was described in terms of its complexity, the way it required caregivers to use new forms of communication, its relationship to specialized caregiving spaces and institutional environments, its reliance on a “professional” workforce, and the idea that “good dementia care” is an ideal that is limited by real world constraints in practice. Differences in expectations of family member involvement in dementia care sites, in volunteerism, and in political economic activism among older adults were identified as potentially limiting factors in successful collaborations. Infrastructure and systems support were also found to be potential barriers for partnerships. In contrast, collaborations around caring for violent or difficult residents, addressing the limitations of a person-centered care approach, and finding ways to strengthen non-state-provided dementia care systems and support family caregivers offered more promise. This study raises important issues for consideration when evaluating or developing Danish-Chinese elder care collaborations and suggests developing new care frameworks, engaging and supporting family caregivers, and finding new ways to manage difficult or violent residents offer especially promising areas for such partnerships.