Stigma and Alzheimer's Disease and Related Dementias: A Systematic Review of Relatives' Experiences
Published:
Jan 4, 2026
Keywords:
Alzheimer's disease Dementia Stigma Caregivers Relatives
Abstract
Objective: This systematic review examines the multifaceted stigma experienced by relatives of individuals living with Alzheimer's Disease and related dementias (ADRD).
Methods: A comprehensive search of the PubMed and Scopus databases was conducted, resulting in the identification of eighteen relevant studies published within the last five years. These studies were then subjected to rigorous analysis.
Results: The findings reveal that family, cultural, social, and psychiatric stigma have a significant impact on caregivers, leading to increased burden, social isolation, delayed help-seeking, and psychological distress. The analysis further underscores the pivotal role of cultural beliefs and societal norms in shaping the manifestation and intensity of stigma across diverse contexts, including collectivist societies and immigrant communities. The review also explores the complex relationship between diagnostic disclosure, particularly with the advent of biomarkers, and the potential for increased stigma. Additionally, the review designates the need for further research on the experiences of LGBT+ caregivers, who often face a heightened level of stigma.
Conclustions: This study concludes with an emphasis on the necessity of interventions, including public education and culturally sensitive support systems, to mitigate the detrimental effects of stigma on ADRD caregivers.
Article Details
- How to Cite
-
Provias, G., Karampasis , C., & Theofanidis, D. (2026). Stigma and Alzheimer’s Disease and Related Dementias: A Systematic Review of Relatives’ Experiences. Health & Research Journal, 12(1), 45–59. https://doi.org/10.12681/healthresj.41044
- Section
- Systematic Reviews
Copyright notice:
Authors retain copyright of their work and grant the Health and Research Journal the right of first publication.
License:
Articles are published under the Creative Commons Attribution 4.0 International License (CC BY 4.0). This license permits use, sharing, adaptation, distribution, and reproduction in any medium or format, including for commercial purposes, provided that appropriate credit is given to the author(s) and the original publication in this journal, a link to the license is provided, and any changes are indicated.
Attribution requirement:
Any reuse must include the article citation and DOI (where available), and indicate if changes were made.
Downloads
Download data is not yet available.
References
Oliveira D, Da Mata FAF, Mateus E, Musyimi CW, Farina N, Ferri CP, et al. Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: qualitative study. Ageing Soc. 2023 Feb 20;43(2):447–68.
Evans-Lacko S, Aguzzoli E, Read S, Comas-Herrera A, Fari-na N. World Alzheimer Report 2024: Global changes in at-titudes to dementia [Internet]. 2024. Available from: https://www.alzint.org/u/World-Alzheimer-Report-2024.pdf
Matthews KA, Xu W, Gaglioti AH, Holt JB, Croft JB, Mack D, et al. Racial and ethnic estimates of {Alzheimer}’s dis-ease and related dementias in the {United} {States} (2015–2060) in adults aged ≥65 years. Alzheimer’s & Dementia [Internet]. 2019 [cited 2021 Nov 2];15(1):17–24. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1016/j.jalz.2018.06.3063
Mathioudakis L, Dimovasili C, Bourbouli M, Latsoudis H, Kokosali E, Gouna G, et al. Study of Alzheimer’s disease- and Frontotemporal dementia- associated genes in the Cretan Aging Cohort. Neurobiol Aging [Internet]. 2022;(xxxx). Available from: https://doi.org/10.1016/j.neurobiolaging.2022.07.002
Kosmidis MH, Vlachos GS, Anastasiou CA, Yannakoulia M, Dardiotis E, Hadjigeorgiou G, et al. Dementia Prevalence in Greece: The Hellenic Longitudinal Investigation of Ag-ing and Diet (HELIAD). Alzheimer Dis Assoc Disord. 2018;32(3):232–9.
World Health Organization. World mental health report: transforming mental health for all. Geneva; 2022.
Andersen MM, Varga S, Folker AP. On the definition of stigma. J Eval Clin Pract. 2022 Oct 1;28(5):847–53.
Subramaniam M, Abdin E, Picco L, Pang S, Shafie S, Vaingankar JA, et al. Stigma towards people with mental disorders and its components - A perspective from multi- ethnic Singapore. Vol. 26, Epidemiology and Psychiatric Sciences. Cambridge University Press; 2017. p. 371–82.
O’Connor D, Mann J, Wiersma E. Stigma, discrimination and agency: Diagnostic disclosure as an everyday practice shaping social citizenship. J Aging Stud. 2018 Mar 1;44:45–51.
Stites SD, Largent EA, Schumann R, Harkins K, Sankar P, Krieger A. How reactions to a brain scan result differ for adults based on self‐identified Black and White race. Alz-heimer’s & Dementia [Internet]. 2024 Mar 29;20(3):1527–37. Available from: https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.13558
Tarnanas I, Tsolaki A, Wiederhold M, Wiederhold B, Tsolaki M. Five-year biomarker progression variability for Alzheimer’s disease dementia prediction: Can a complex instrumental activities of daily living marker fill in the gaps? Alzheimer’s and Dementia: Diagnosis, Assessment and Disease Monitoring. 2015 Dec 1;1(4):521–32.
Largent EA, Stites SD, Harkins K, Karlawish J. ‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others. J Law Biosci [Internet]. 2021 Apr 10;8(1). Available from: https://academic.oup.com/jlb/article/doi/10.1093/jlb/lsab004/6124576
Duodu PA, Simkhada B, Okyere J, Akrong R, Barker C, Gillibrand W, et al. Primary caregivers’ experiences of car-ing for people living with dementia in Ghana: a phenom-enological study. BMC Geriatr. 2024 Dec 1;24(1).
Warren A. The relationship between perceived stigma and perceived stress in cognitive decline: a survey of persons with mild cognitive impairment and their caregivers. Front Psychol [Internet]. 2023 Dec 7;14. Available from: https://www.frontiersin.org/articles/10.3389/fpsyg.2023.1293284/full
Frandsen TF, Bruun Nielsen MF, Lindhardt CL, Eriksen MB. Using the full PICO model as a search tool for systematic reviews resulted in lower recall for some PICO elements. J Clin Epidemiol. 2020 Nov 1;127:69–75.
AboJabel H, Werner P. The mediating effect of social support and coping strategies on the relation between family stigma and caregiver burden among Israeli Arab family caregivers of people with Alzheimer’s disease (AD). Aging Ment Health. 2022;26(8):1597–603.
Velilla L, Acosta-Baena N, Allen I, Lopera F, Kramer J. Analysis of family stigma and socioeconomic factors im-pact among caregivers of patients with early- and late-onset Alzheimer’s disease and frontotemporal dementia. Sci Rep. 2022 Dec 1;12(1).
Parker M, Barlow S, Hoe J, Aitken LM. The Bubble of Nor-malisation: A Qualitative Study of Carers of People With Dementia Who Do Not Seek Help for a Diagnosis. J Geri-atr Psychiatry Neurol. 2022 Sep 1;35(5):717–32.
Schlag KE, Vangelisti AL. Reflections on Dementia-Related Stigma and Direct Support Seeking by Family Caregivers as Mediating Associations Between Caregiver Stress, Burden, and Well-Being. Health Commun. 2023;
Knight BG, Sayegh P. Cultural values and caregiving: the updated sociocultural stress and coping model. J Geron-tol B Psychol Sci Soc Sci [Internet]. 2010 [cited 2025 Apr 5];65B(1):5–13. Available from: https://pubmed.ncbi.nlm.nih.gov/19934166/
Wang J, Leong IT, Johnson MK, Pei Y, Lee KH, Mittelman MS, et al. What Matters to Chinese and Korean American Dementia Caregivers: Navigating Cultural Influences in Dementia Care from Caregivers’ Perspectives. Journal of Alzheimer’s Disease. 2024 Mar 19;98(2):519–38.
Hammad SH, Daher-Nashif S, Kane T, Al-Wattary N. Soci-ocultural insights on dementia care-giving in Arab and Muslim communities: The perspectives of family care-givers. Ageing Soc. 2024 Feb 25;44(2):357–84.
Nguyen H, Nguyen T, Tran D, Hinton L. “It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam. PLoS One. 2021 Nov 1;16(11 November).
Griffiths KM, Carron-Arthur B, Parsons A, Reid R. Effective-ness of programs for reducing the stigma associated with mental disorders. A meta-analysis of randomized con-trolled trials. World Psychiatry [Internet]. 2014 Jun 1 [cited 2025 Apr 6];13(2):161–75. Available from: https://onlinelibrary.wiley.com/doi/full/10.1002/wps.20129
Dadashi-Tonkaboni N, Mahdizadeh M, Peyman N, Gholamnia-Shirvani Z, Tehrani H. Factors influencing the ability of family caregivers of Alzheimer’s patients within Iranian families to continue and persist in their caregiving roles: a qualitative study. BMC Nurs. 2024 Dec 1;23(1).
Chermahini MA, Parvizy S, Hajibabaee F, Navab E, Ha-ghani H. The Impacts of an Educational Program by Using Group Discussion on Perceived Stigma Among the Family Caregivers of People with Alzheimer’s Disease. Jundisha-pur Journal of Chronic Disease Care. 2021 Jul 1;10(3).
Longstreth M, McKibbin C, Steinman B, Slosser Worth A, Carrico C. Exploring Information and Referral Needs of Individuals with Dementias and Informal Caregivers in Rural and Remote Areas. Clin Gerontol. 2022;45(4):808–20.
Theresia I, Sani TP, Evans-Lacko S, Farina N, Augustina L, Turana Y. Experiences of caregivers of people with de-mentia in Indonesia: A focus group study. Int J Geriatr Psychiatry. 2023 Dec 1;38(12).
Withers M, Cortez-Sanchez K, Herrera J, Ringman JM, Segal-Gidan F. “My backpack is so heavy”: Experiences of Latino caregivers of family with early-onset Alzheimer’s. J Am Geriatr Soc. 2021 Jun 1;69(6):1539–47.
Corrigan PW, Watson AC. Understanding the impact of stigma on people with mental illness. World Psychiatry [Internet]. 2002 Feb [cited 2025 Apr 5];1(1):16. Available from: https://pmc.ncbi.nlm.nih.gov/articles/PMC1489832/
Zhang Q, Deng J, Luo H, Wang L. Senile dementia and psychiatric stigma among community health service pro-viders and relatives of diagnosed and suspected demen-tia patients: a cross-sectional study. PeerJ. 2023 Jan 11;11.
Jack CR, Bennett DA, Blennow K, Carrillo MC, Dunn B, Haeberlein SB, et al. NIA‐AA Research Framework: Toward a biological definition of Alzheimer’s disease. Alzheimer’s & Dementia [Internet]. 2018 Apr;14(4):535–62. Available from: https://alz-jour-nals.onlinelibrary.wiley.com/doi/10.1016/j.jalz.2018.02.018
Bolsewig K, Blok H, Willemse EAJ, Zwaaftink RBMG, Koois-tra M, Smets EMA, et al. Caregivers’ attitudes toward blood-based biomarker testing for Alzheimer’s disease. Alzheimer’s and Dementia: Diagnosis, Assessment and Disease Monitoring. 2024 Jan 1;16(1).
Cui X, Wang J, Tang X, Ding D, Wu B, Zhao Q, et al. Navi-gating the Journey of Living with Young-Onset Dementia: Experiences of Spousal Caregivers. Journal of Alzheimer’s Disease. 2024 Aug 27;101(1):197–209.
Fredriksen-Goldsen KI, Simoni JM, Kim HJ, Lehavot K, Walters KL, Yang J, et al. The Health Equity Promotion Model: Reconceptualization of Lesbian, Gay, Bisexual, and Transgender (LGBT) Health Disparities. Am J Orthopsychi-atry [Internet]. 2014 [cited 2025 Apr 5];84(6):653. Available from: https://pmc.ncbi.nlm.nih.gov/articles/PMC4350932/
Jablonski RA, Vance DE, Beattie E. The invisible elderly: lesbian, gay, bisexual, and transgender older adults. J Gerontol Nurs [Internet]. 2013 [cited 2025 Apr 5];39(11):46–52. Available from: https://pubmed.ncbi.nlm.nih.gov/24066784/
Anderson JG, Flatt JD, Jabson Tree JM, Gross AL, Rose KM. Characteristics of Sexual and Gender Minority Caregivers of People With Dementia. J Aging Health [Internet]. 2021 Dec 1 [cited 2025 Mar 15];33(10):838–51. Available from: https://journals.sagepub.com/doi/abs/10.1177/08982643211014767?src=getftr&getft_i ntegra-tor=mendeley&utm_source=mendeley
