Effects of Self-Identification as a Caregiver on Expectations of Public Stigma of Alzheimer's Disease

J Alzheimers Dis Rep. 2021 Jan 16;5(1):31-39. doi: 10.3233/ADR-200206.


Background: As a result of caring for a person with dementia, caregivers of persons with Alzheimer's disease (AD) may be uniquely aware of public stigma for persons with AD.

Objective: The purpose of this study was to compare self-identified caregivers and non-caregivers' expectations of public stigma experienced by persons living with dementia.

Methods: Analysis of data from a survey of 910 adults (median age = 49 years) who read a vignette about a man with mild stage dementia. Multivariable ordered logistic regression was used to examine how AD caregiver status associated with responses on a modified Family Stigma in Alzheimer's Disease Scale (FS-ADS).

Results: 9%(n = 82) of respondents self-identified as a current or former primary caregiver of a person with AD, about the same as the national estimate of informal caregivers (8.8%). Compared to non-caregivers, AD caregivers were more likely to report stronger reactions on all seven domains of the FS-ADS (all p < 0.05). As compared to AD caregivers with less factual knowledge about caregiving, AD caregivers with more knowledge expected the person with dementia to experience less social distance (p < 0.05). In addition, female AD caregivers reported fewer negative aesthetic attributions than male AD caregivers (p < 0.05).

Conclusion: Compared to non-caregivers, respondents who self-identified as an AD caregiver gave responses that suggest they perceived more stigma of dementia among members of the public. Their reactions were attenuated by AD knowledge and being female. The findings have key implications for interventions to reduce AD stigma.

Keywords: Alzheimer’s disease; caregivers; public survey; stigma.