Self-stigma in people living with dementia in Chile: A qualitative exploratory study

References

• Alzheimer’s Association. (2020). 2020 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 16(3), 391–460. https://doi.org/10.1002/alz.12068
   Web of Science ®Google Scholar
• Bhatt, J., Stoner, C. R., Scior, K., & Charlesworth, G. (2021). Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia. BMC Geriatrics, 21(1), 1–12. https://doi.org/10.1186/s12877-020-01983-0
   PubMed Web of Science ®Google Scholar
• Batsch, N. L., & Mittleman, M. S. (2013). World Alzheimer Report 2012, Overcoming the Stigma of Dementia. Alzheimer’s Disease International.
   Google Scholar
• Blay, S. L., & Peluso, E. T. P. (2010). Public stigma: The community’s tolerance of Alzheimer disease. The American Journal of Geriatric Psychiatry : official Journal of the American Association for Geriatric Psychiatry, 18(2), 163–171. https://doi.org/10.1097/JGP.0b013e3181bea900
   PubMed Web of Science ®Google Scholar
• Corrigan, P. W. (2016). Lessons learned from unintended consequences about erasing the stigma of mental illness. World Psychiatry : official Journal of the World Psychiatric Association (WPA), 15(1), 67–73. https://doi.org/10.1002/wps.20295
   PubMed Web of Science ®Google Scholar
• Corrigan, P. W., & Fong, M. W. (2014). Competing perspectives on erasing the stigma of illness: What says the dodo bird? Social Science & Medicine (1982), 103, 110–117. https://doi.org/10.1016/j.socscimed.2013.05.027
   PubMed Web of Science ®Google Scholar
• Corrigan, P. W., Kerr, A., & Knudsen, L. (2005). The stigma of mental illness: Explanatory models and methods for change. Applied and Preventive Psychology, 11(3), 179–190. https://doi.org/10.1016/j.appsy.2005.07.001
   Web of Science ®Google Scholar
• Corrigan, P. W., & Rao, D. (2012). On the self-stigma of mental illness: Stages, disclosure, and strategies for change. Revue Canadienne de Psychiatrie [Canadian Journal of Psychiatry], 57(8), 464–469. https://doi.org/10.1177/070674371205700804
   PubMed Web of Science ®Google Scholar
• Corrigan, P. W., Watson, A. C., & Barr, L. (2006). The self–stigma of mental illness: Implications for self–esteem and self–efficacy. Journal of Social and Clinical Psychology, 25(8), 875–884. https://doi.org/10.1521/jscp.2006.25.8.875
   Web of Science ®Google Scholar
• Creswell, J. W., & Poth, C. N. (2016). Qualitative inquiry and research design: Choosing among five approaches. Sage Publications.
   Google Scholar
• Custodio, N., Wheelock, A., Thumala, D., & Slachevsky, A. (2017). Dementia in Latin America: Epidemiological evidence and implications for public policy. Frontiers in Aging Neuroscience, 9, 221 https://doi.org/10.3389/fnagi.2017.00221
   PubMed Web of Science ®Google Scholar
• Denzin, N. K., & Lincoln, Y. (2000). Qualitative research. Thousand Oaks.
   Google Scholar
• DiCicco-Bloom, B., & Crabtree, B. F. (2006). The qualitative research interview. Medical Education, 40(4), 314–321. https://doi.org/10.1111/​j.1365-2929.2006.02418.x
   PubMed Web of Science ®Google Scholar
• Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107–115. https://doi.org/10.1111/​j.1365-2648.2007.04569.x
   PubMed Web of Science ®Google Scholar
• Eriksen, S., Helvik, A. S., Juvet, L. K., Skovdahl, K., Førsund, L. H., & Grov, E. K. (2016). The experience of relations in persons with dementia: A systematic meta-synthesis. Dementia and Geriatric Cognitive Disorders, 42(5-6), 342–368. https://doi.org/10.1159/000452404
   PubMed Web of Science ®Google Scholar
• Farina, N., Suemoto, C. K., Burton, J. K., Oliveira, D., & Frost, R. (2021). Perceptions of dementia amongst the general public across Latin America: A systematic review. Aging & Mental Health, 25(5), 787–796. https://doi.org/10.1080/13607863.2020.1725738
   PubMed Web of Science ®Google Scholar
• Fernández Lorca, M. B., & Valenzuela, E. (2020). Religiosity and subjective wellbeing of the elderly in Chile: A mediation analysis. Journal of Religion, Spirituality & Aging, 32, 1–22. https://doi.org/10.1080/15528030.2020.1839624
   Google Scholar
• Gitlin, L. N., & Hodgson, N. A. (2018). Better living with dementia: Implications for individuals, families, communities, and societies. Academic Press.
   Google Scholar
• Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. Prentice-Hall.
   Google Scholar
• Górska, S., Forsyth, K., & Maciver, D. (2018). Living with dementia: A meta-synthesis of qualitative research on the lived experience. The Gerontologist, 58(3), e180–e196.
   PubMed Web of Science ®Google Scholar
• Hedman, R., Hellström, I., Ternestedt, B. M., Hansebo, G., & Norberg, A. (2018). Sense of self in Alzheimer’s research participants. Clinical Nursing Research, 27(2), 191–212. https://doi.org/10.1177/​1054773816672671
   PubMed Web of Science ®Google Scholar
• Herrmann, L. K., Welter, E., Leverenz, J., Lerner, A. J., Udelson, N., Kanetsky, C., & Sajatovic, M. (2018). A systematic review of dementia-related stigma research: Can we move the stigma dial? The American Journal of Geriatric Psychiatry : official Journal of the American Association for Geriatric Psychiatry, 26(3), 316–331. https://doi.org/10.1016/j.jagp.2017.09.006
   PubMed Web of Science ®Google Scholar
• Ingoldsby, B. B. (1991). The Latin American family: Familism vs. machismo. Journal of Comparative Family Studies, 22(1), 57–62. https://doi.org/10.3138/jcfs.22.1.57
   Web of Science ®Google Scholar
• Link, B. G., Cullen, F. T., Struening, E., Shrout, P. E., & Dohrenwend, B. P. (1989). A modified labeling theory approach to mental disorders: An empirical assessment. American Sociological Review, 54(3), 400–423. https://doi.org/10.2307/2095613
   Web of Science ®Google Scholar
• Livingston, J. D., & Boyd, J. E. (2010). Correlates and consequences of internalized stigma for people living with mental illness: A systematic review and meta-analysis. Social Science & Medicine (1982), 71(12), 2150–2161. https://doi.org/10.1016/j.socscimed.2010.09.030
   PubMed Web of Science ®Google Scholar
• Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., Brayne, C., Burns, A., Cohen-Mansfield, J., Cooper, C., Costafreda, S. G., Dias, A., Fox, N., Gitlin, L. N., Howard, R., Kales, H. C., Kivimäki, M., Larson, E. B., Ogunniyi, A., … Mukadam, N. (2020). Dementia prevention, intervention, and care: 2020 Report of the Lancet Commission. Lancet (London, England), 396(10248), 413–446. https://doi.org/10.1016/S0140-6736(20)30367-6
   PubMed Web of Science ®Google Scholar
• Ministerio de Salud de Chile. (2010). Reglamento aprobado Ley 20.120. https://www.bcn.cl/leychile/navegar?idNorma=253478
   Google Scholar
• Murphy, K., Jordan, F., Hunter, A., Cooney, A., & Casey, D. (2015). Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia (London, England), 14(6), 800–824. https://doi.org/10.1177/1471301213512489
   PubMedGoogle Scholar
• Nguyen, T., & Li, X. (2020). Understanding public-stigma and self-stigma in the context of dementia: A systematic review of the global literature. Dementia (London, England), 19(2), 148–181. https://doi.org/10.1177/1471301218800122
   PubMedGoogle Scholar
• Nitrini, R., Barbosa, M. T., Brucki, S. M. D., Yassuda, M. S., & Caramelli, P. (2020). Current trends and challenges on dementia management and research in Latin America. Journal of Global Health, 10(1), 010362. https://doi.org/10.7189/jogh.10.010362
   PubMed Web of Science ®Google Scholar
• Novek, S., & Wilkinson, H. (2019). Safe and inclusive research practices for qualitative research involving people with dementia: A review of key issues and Strategies. Dementia (London, England), 18(3), 1042–1059. https://doi.org/10.1177/1471301217701274
   PubMedGoogle Scholar
• Parisi, J. M., Roberts, L., Szanton, S. L., Hodgson, N. A., & Gitlin, L. N. (2015). Valued activities among individuals with and without cognitive impairments: Findings from the National Health and Aging Trends Study. The Gerontologist, 57(2), 144–318. https://doi.org/10.1093/geront/gnv144
   Web of Science ®Google Scholar
• van Gennip, I. E., W., Pasman, H. R., Oosterveld-Vlug, M. G., Willems, D. L., & Onwuteaka-Philipsen, B. D. (2016). How dementia affects personal dignity: A qualitative study on the perspective of individuals with mild to moderate dementia. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 71(3), 491–501. https://doi.org/10.1093/geronb/gbu137
   PubMed Web of Science ®Google Scholar
• Weiner-Light, S., Rankin, K. P., Lanata, S., Possin, K. L., Dohan, D., & Sideman, A. B. (2021). The role of spirituality in conceptualizations of health maintenance and healthy aging among Latin American Immigrants. The American Journal of Geriatric Psychiatry, 29(11), 1079–1088. https://doi.org/10.1016/j.jagp.2021.04.017
   PubMed Web of Science ®Google Scholar
• Prince, M. J., Wimo, A., Guerchet, M. M., Ali, G. C., Wu, Y.-T., Prina, M. (2015). World Alzheimer Report 2015 - The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International. http://www.alz.co.uk/research/world-report-2015
   Google Scholar
• Ran, M. S., Hall, B. J., Su, T. T., Prawira, B., Breth-Petersen, M., Li, X. H., & Zhang, T. M. (2021). Stigma of mental illness and cultural factors in Pacific Rim region: A systematic review. BMC Psychiatry, 21(1), 8–16. https://doi.org/10.1186/s12888-020-02991-5
   PubMed Web of Science ®Google Scholar
• Werezak, L., & Stewart, N. (2009). Learning to live with early dementia. Canadian Journal of Nursing Research, 41(1), 366–384. https://cjnr.archive.mcgill.ca/article/view/1750
   PubMedGoogle Scholar
• Werner, P. (2014). Stigma and Alzheimer’s Disease: A systematic review of evidence, theory, and methods. In P. W. Corrigan (Ed.), The stigma of disease and disability: Understanding causes and overcoming injustices (pp. 223–244). American Psychological Association.
   Google Scholar
• Wilson, R. S., Sytsma, J., Barnes, L. L., & Boyle, P. A. (2016). Anosognosia in dementia. Current Neurology and Neuroscience Reports, 16(9), 1–6. https://doi.org/10.1007/s11910-016-0684-z
   PubMed Web of Science ®Google Scholar
• World Health Organization (WHO). (2019). Dementia: Key facts. https://www.who.int/newsroom/fact-sheets/detail/dementia.
   Google Scholar
• World Medical Association. (2013). World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. JAMA, 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053
   PubMed Web of Science ®Google Scholar
• Zurique Sánchez, C., Cadena Sanabria, M. O., Zurique Sánchez, M., Camacho López, P. A., Sánchez Sanabria, M., Hernández Hernández, S., Velásquez Vanegas, K., & Ustate Valera, A. (2019). Prevalence of dementia in the elderly in Latin America: A systematic review. Revista Espanola de Geriatria y Gerontologia, 54(6), 346–355. https://doi.org/10.1016/j.regg.2018.12.007
   PubMedGoogle Scholar