Stigma and Alzheimer’s disease

Year 2021, , 13 - 16, 30.05.2021

Nimet Emel Lulecı Seyhan Hıdıroglu

https://doi.org/10.5472/marumj.897863

Abstract

Alzheimer’s disease (AD) is a brain ailment that contains psychiatric and cognitive abnormalities. Stigma is the use of unwanted labels
to categorize a person with a disability or illness. Stigma about AD exists. Three types of stigma affect persons with AD dementia;
public stigma, self-stigma and spillover stigma. Stigma is often a major cause of distress to family members and care partners. Both
persons with AD and their family members are influenced by disinhibition and challenging social behaviours caused by AD. Younger
age, higher education, and familiarity with a person with AD were linked to lower levels of stigmatizing approaches. The National
Alzheimer’s Association Early Stage Advisory Group in US provided advice to persons with dementia to help them in overcoming the
stigma of dementia: be part of the solution, stay open and direct, talk the truths, seek support and join in, do not lose hope.
Public awareness and understanding of the disease is important for preventing people from stigmatizing AD. Education and public
policy might be able to lessen that stigma by creating more understanding.

Keywords

Alzheimer disease (AD), Stigma, Dementia, Discrimination, Prejudices

References

• Devi G, Williamson J, Massoud F, et al. A comparison of family history of psychiatric disorders among patients with early-and late onset Alzheimer’s disease. J Neuropsychiatry Clin. Neurosci 2004; 16: 57-62. doi: 10.1176/jnp.16.1.57
• Prince M, Albanese E, Guerchet M, Prina M. World Alzheimer Report 2014: Dementia and risk reduction: An analysis of protective and modifiable risk factors. London: Alzheimer’s Disease International, 2014:104.
• World Alzheimer Report 2015 the Global Impact of Dementia. An analysis of prevalence, incidence, cost and trends. 2015:23-24. https://www.alz.co.uk/research/ WorldAlzheimerReport2015.pdf Accessed: 23.10.2020
• Blay S.L, Pisa Peluso ET. Public stigma: The community’s tolerance of Alzheimer disease. Am J Geriatr Psychiatry 2010;18:163-171. doi: 10.1097/JGP.0b013e3181bea900
• Mahoney DF. Vigilance. Evolution and definition for caregivers of family members with Alzheimer’s disease. J Gerontol Nurs 2003;29: 24-30. doi: 10.3928/0098-9134.200.30801-07
• World Health Organization and World Psychiatric Association, Reducing Stigma and Discrimination against Older People with Mental Disorders. Geneva, Switzerland: WHO, 2002. http://apps.who.int/iris/bitstream/handle/10665/67380/ WHO_MSD_MBD_02.3_eng.pdf?sequence=1&isAllowed=y Accessed: 23.10.2020
• Goffman E. Stigma: Notes on the management of spoiled identity. London,UK: Penguin Books, 1990:31.
• Joachim G, Acorn S, Stigma of visible and invisible chronic conditions. J Adv Nurs 2000;32:243-8. doi: 10.1046/j.1365- 2648.2000.01466.x
• Goffman E. Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall, 1963.
• Werner P, Goldstein D, Buchbinder E. Subjective experience of family stigma as reported by children of Alzheimer’s disease patients. Qual Health Res 2010; 20: 159-69. doi: 10.1177/104.973.2309358330
• Chang E, Easterbrook S, Hancock K, Johnson A, Davidson P. Evaluation of an information booklet for caregivers of people with dementia: an Australian perspective. Nurs Health Sci 2010; 12: 45-51. doi: 10.1111/j.1442-2018.2009.00486.x
• Etters L, Goodall D, Harrison B. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract 2008; 20: 423-8. doi: 10.1111/j.1745- 7599.2008.00342.x
• Navab E, Negarandeh R, Hamid P, Navad P. Stigma among Iranian family caregivers of patients with Alzheimer’s disease: A hermeneutic study. Nurs Health Sci 2013;15:201-6.. doi: 10.1111/nhs.12017
• Larson JE, Corrigan P. The stigma of families with mental illness. Acad Psychiatry 2008; 32(2):87-91. doi: 10.1176/appi. ap.32.2.87
• Werner P, Mittelman MS, Goldstein D, Heinik J. Family stigma and caregiver burden in Alzheimer’s disease. Gerontologist 2012; 52:89-97. doi: 10.1093/geront/gnr117
• Woo B K P, Chung J OP. Public stigma associated with dementia in a Chinese-American immigrant population. J Am Geriatr Soc 2013; 61:1832-3. doi:10.1111/jgs.12472
• Adebiyi A O, Fagbola, MA, Olakehinde O, et al. Enacted and implied stigma for dementia in a community in south-west Nigeria. Psychogeriatric: the Official Journal of the Japanese Psychogeriatric Society 2010; 16: 268-73. doi:10.1111/ psyg.12156
• Werner P. Discriminatory behaviour towards a person with Alzheimer’s disease: Examining the effects of being in a nursing home. Aging Ment Health 2008; 12: 786-94. doi:10.1080/136.078.60802380649
• Corrigan PW, Rao S. On the self – stigma of mental illness: Stages, disclosure, and strategies for change. Can J Psychiatry 2012; 57:464-9. doi: 10.1177/070.674.371205700804
• Mak WW, Cheung R. Affiliate stigma among caregivers of people within intellectual disability or mental illness. J Appl Res in Intellect Disabil 2008; 21:532-45. doi:10.1111/j.1468 – 3148.2008.00426.x
• Werner P, Goldstein D, Karpas DS, et al. Help-seeking for dementia: A systematic review of the literature. Alzheimer Dis Assoc Disord 2014; 28: 299-310. doi:10.1097/ WAD.000.000.0000000065
• Werner P, Jabel H.A, Reuveni Y, et al. Stigmatic beliefs toward a person with Alzheimer ’s disease among highschool students: Does majority–minority status make a difference? Educ Gerontol 2017; 43: 609-18. doi: 10.1080/03601.277.2017.1376461
• Birenbaum A. Courtesy stigma revisited. Ment Retard 1992; 30:265-8.
• Corrigan PW, Watson AC, Miller RE. Blame, shame, and contamination: the impact of mental illness and drug dependence stigma on family members. J Fam Psychol 2006; 20:239-46. doi: 10.1037/0893-3200.20.2.239
• Chang C-C, Su J-A, Lin C-Y. Using the Affiliate Stigma Scale with caregivers of people with dementia: psychometric evaluation. Alzheimers Res Ther 2016; 8: 45. doi: 10.1186/ s13195.016.0213-y
• Lin C-Y, Wang J-D, Pai M-C, et al. Measuring burden in dementia caregivers: confirmatory factor analysis for short forms of the Zarit Burden Interview. Arch Gerontol Geriatr 2017; 68:8-13. doi:10.1016/j.archger.2016.08.005
• Rae HM. Managing courtesy stigma: the case of Alzheimer’s disease. Sociol Health Illn 1999; 21 (1): 54-70.
• Johnson R, Harkins K, Cary M, Sankar P, Karlawish J. The relative contributions of disease label and disease prognosis to Alzheimer’s stigma: A vignette-based experiment. Soc Sci Med 2015; 143:117-27. doi: 10.1016/j.socscimed.2015.08.031
• Prince M, Livingston G, Katona C. Mental health care for the elderly in low-income countries: a health systems approach. World Psychiatry 2007; 6: 5-13.
• Van Gorp B, Vercruysse T. Frames and counter-frames giving meaning to dementia: A framing analysis of media content. Soc Sci Med 2012; 74:1274-81. doi:10.1016/j. socscimed.2011.12.045,
• Vaala S E, Bleakley A, Hennessy M, Jordan AB.. Weight stigmatization moderates the effects of sugar-sweetened beverage related PSAs among U.S. parents. Media Psychol 2016; 19:534-60.. doi:10.1080/15213.269.2015.1121826.
• Batsch NL, Mittelman MS, (editors). World Alzheimer Report 2012, overcoming the stigma of dementia. London: Alzheimer’s Disease International (ADI), 2012.
• ( https://www.cdc.gov/aging/pdf/stigma-and-AD-brief-july- 2015.pdf) 5.09.2020