Talking about Stigma in the Context of Dementia: A Systematic Review

Background and Purpose: Stigma associated with dementia greatly impacts the quality of life of people with dementia and their family members. However, the literature about stigma and dementia is scant and there is lack of evidence-based social work interventions for these vulnerable groups. This session will discuss a systematic review of empirical studies on stigma and dementia and answer the following research questions: (1) What are the manifestations of public stigma toward people with dementia and their families? What factors are associated with this type of stigma? (2) What are the manifestations of self-stigma of people with dementia and their families? What factors are associated with this type of stigma?

Methods: A systematic search of the literature was conducted in three databases: PubMed, Embase, and psycINFO using the following search string: [Dementia OR “Cognitive Impairment” OR "Cognitive dysfunction" OR “Alzheimer's Disease”] AND ["Social stigma" OR Discrimination OR Attitude OR Opinion OR Belief OR Perception]. No time restriction was applied in the search strategy.

This systematic review included journal articles which were: (1) empirically-based studies with the focus on defined stigma toward people with dementia and their families; and (2) published in English and available as full-length articles. The review excluded publications which: (1) did not primarily focus on either public stigma or self-stigma toward people with dementia and their families; (2) did not report on dementia as the main topic; (3) did not focus on human subjects; (4) were either review articles, conference presentations, discussion papers, or dissertations; and (5) were not available/accessible in full-length texts in English. The review adapted Corrigan et al.’s (2005) framework of public-stigma and self-stigma to synthesize the results.   

Results: The search strategy on the three major databases yielded 2663 records. After multiple rounds of deduping and screening the titles, abstracts, and full-texts, 26 articles, including 17 quantitative papers and nine qualitative papers, were selected for synthesis. The majority of the reviewed studies were conducted in the U.S., U.K., and Israel. 

Results suggest that there is consistently limited knowledge, as well as stereotypes (e.g., dangerousness), prejudice (fear), and discrimination (avoidance) of the public and healthcare professionals toward people with dementia and their caregivers. Participants’ demographic characteristics (age, gender, and educational level) were found to be associated with their stigmatizing level against dementia across studies. Self-stigma among people with dementia and their family caregivers was manifested as negative beliefs (incompetence) of themselves and destructive feelings (fear) which delayed their help-seeking. Psychological factors rather than sociodemographic factors shaped self-stigma of people with dementia and their families.

Conclusions and Implications: This systematic review provides understanding of public stigma and self-stigma of people with dementia and their caregivers which is important for social workers to advocate for these groups in public policy. The results also highlight the need for future studies in both public stigma and self-stigma in dementia research in different contexts and cultures, as well as the development of evidence-based and culturally competent social work interventions to ameliorate these barriers to quality of life and other outcomes.