Stigma Toward Alzheimer's Disease and Related Dementia Among Chinese Older Adults

Background and Purpose: Alzheimer’s disease and related dementia (ADRD) is a global epidemic. It affects over 47 million people in the world, and almost one fifth of them live in Mainland China. While 27 countries have launched national strategic plans to address the challenges of ADRD, China has not yet developed such plan. Stigma attached to mental illness and beliefs of memory loss associated with normal aging comprise the two prevalent principles that affect Chinese people’s attitude toward ADRD. Consequently, ADRD is among the most feared and misunderstood diseases in the China. Guided by synthesized perspectives drawn from medical and folk models, this study examined stigma associated with ADRD in a group of urban Chinese older adults, and explored the effects of knowledge of ADRD, health, and family factors on perceived stigma of ADRD.

Method: This study was based upon survey data collected with 518 adults aged 60 and older in one urban community in Wuhan, China in 2016. Perceived stigma toward ADRD was measured by the 10-item Perceived Stigma Scale that has been validated in Chinese older population; and AD knowledge was measured by the adapted AD Knowledge Scale developed by Carpenter et al. (2009). Mental health factor was assessed through the Center for Epidemiological Studies Depression (CES-D). Cognitive health factor was measured by the Montreal Cognitive Assessment (MoCA). Family factors included elder neglect by family members measured using a 3-item scale, and family intimacy measured assessed through a 10-item scale adapted from the Traditionality–Modernity subscale of the Chinese Personality Assessment Inventory.

Results: Stigma toward AD was salient in this sample. In a hypothetical situation, 31.9 % of participants considered they would feel useless and 19.1% would believe that others would avoid them if they had ADRD. Multivariate regression analyses found that higher levels of stigma were predicted by higher levels of depressive symptoms, lower level of cognitive status, experience of family neglect, less family intimacy, and higher level of AD knowledge. Additionally, family intimacy tended to moderate the effect of AD knowledge on perceived stigma. AD knowledge was more robust in increasing perceived stigma of AD in older adults who had lower levels of family intimacy than in those with higher levels of family intimacy.

Discussion: Promoting AD knowledge does not necessarily result in reduction of AD stigma. Given actual knowledge such as AD is a non-curable disease and no medications available for AD might trigger anxiety in people. Programs aimed to eliminating AD stigma should include an effort to address older adults’ poor mental health and negative family experiences through provision of training, support, or linkage to services. Programs should also involve family members who can be a source of support as well as the driving force for changes in older adults.