OBJECTIVES: This research explores how the representations and meanings of living with dementia are constructed by older adults. METHODS: Focus groups (N = 19) and in-depth interviews (N = 29) were conducted with older adults aged 65+ living in the Czech Republic, representing different levels of personal familiarity with care for an individual experiencing dementia. RESULTS: We identified 2 different discourses: (1) Tragedy discourse with two distinctive repertoires "dementia as a thief of personality" and "dementia as a thief of humanity." Within such discourse, dementia transcends mere medical terminology, serving as a symbolic representation of existential anxieties linked to aging and the perceived loss of control. (2) The discourse of Dementia as a specific way in which people approach the world was articulated mainly by caregivers, providing them with a coping mechanism and a means to reconstruct the agency of the person experiencing dementia. In older adults' representations, references to suffering among family members emerged as a primary association with dementia. Dementia was portrayed as "contagious" in its effect on the family members who were, in a sense, depicted as the primary sufferers of the disease. DISCUSSION: Dementia often serves as a symbolic tool for older adults to articulate concerns about advanced old age, extending beyond its clinical definition to convey deep-seated fears associated with aging. The experience of people surrounding those diagnosed with dementia and the permeability of the impacts of this disease between bodies represented crucial frameworks for conceptualizing dementia in the narratives of older adults.

Institute of Sociological Studies Faculty of Social Science Charles University Prague Czech Republic

Zobrazit více v PubMed

Anderson, L. A., Day, K. L., Beard, R. L., Reed, P. S., & Wu, B. (2009). The public’s perceptions about cognitive health and Alzheimer’s disease among the US population: A national review. Gerontologist, 49(S1), S3–S11. 10.1093/geront/gnp088 PubMed DOI

Andrews, S., McInerney, F., Toye, C., Parkinson C.-A., & Robinson, A. (2017). Knowledge of dementia: Do family members understand dementia as a terminal condition? Dementia, 16(5), 556–575. 10.1177/1471301215605630 PubMed DOI

Beard, R. L., & Neary, T. M. (2013). Making sense of nonsense: Experiences of mild cognitive impairment. Sociology of Health & Illness, 35(1), 130–146. 10.1111/j.1467-9566.2012.01481.x PubMed DOI

Behuniak, S. M. (2011). The living dead? The construction of people with Alzheimer’s disease as zombies. Ageing & Society, 31(1), 70–92. 10.1017/s0144686x10000693 DOI

Cahill, S., Clark, M., O’Connell, H., Lawlor, B., Coen, R. F., & Walsh, C. (2008). The attitudes and practices of general practitioners regarding dementia diagnosis in Ireland. International Journal of Geriatric Psychiatry, 23(7), 663–669. 10.1002/gps.1956 PubMed DOI

Casado, B. L., Hong, M., & Lee, S. E. (2018). Attitudes toward Alzheimer’s care-seeking among Korean Americans: Effects of knowledge, stigma, and subjective norm. Gerontologist, 58(2), e25–e34. 10.1093/geront/gnw253 PubMed DOI

Cipriani, G., & Borin, G. (2015). Understanding dementia in the sociocultural context: A review. The International Journal of Social Psychiatry, 61(2), 198–204. 10.1177/0020764014560357 PubMed DOI

Czech Statistical Office. (2022). Senioři v datech ČR—2022. Czech Statistical Office. https://www.czso.cz/csu/czso/seniori-v-cr-v-datech-rtm2xuji2o

Ezzy, D. (2002). Qualitative analysis. Practice and innovation. Routledge.

Farina, N., Page, T. E., Daley, S., Brown, A., Bowling, A., Basset, T., Livingston, G., Knapp, M., Murray, J., & Banerjee, S. (2017). Factors associated with the quality of life of family carers of people with dementia: A systematic review. Alzheimer's & Dementia, 13(5), 572–581. 10.1016/j.jalz.2016.12.010 PubMed DOI

George, D. R. (2010). Overcoming the social death of dementia through language. The Lancet, 376(9741), 586–587. 10.1016/s0140-6736(10)61286-x PubMed DOI

George, D. R., Whitehouse, E. R., & Whitehouse, P. J. (2016). Asking more of our metaphors: Narrative strategies to end the “War on Alzheimer’s” and humanize cognitive aging. The American Journal of Bioethics, 16(10), 22–24. 10.1080/15265161.2016.1214307 PubMed DOI PMC

Gilleard, C., & Higgs, P. (2010). Aging without agency: Theorizing the fourth age. Aging & Mental Health, 14(2), 121–128. 10.1080/13607860903228762 PubMed DOI

Golden, M. A., Whaley, B. B., & Stone, A. M. (2012). “The system is beginning to shut down”: Utilizing caregivers’ metaphors for dementia, persons with dementia, and caregiving. Applied Nursing Research, 25(3), 146–151. 10.1016/j.apnr.2011.02.001 PubMed DOI

Hall, M., & Sikes, P. (2017). “It would be easier if she’d died”: Young people with parents with dementia articulating inadmissible stories. Qualitative Health Research, 27(8), 1203–1214. 10.1177/1049732317697079 PubMed DOI PMC

Higgs, P., & Gilleard, C. (2014). Frailty, abjection and the ‘othering’ of the fourth age. Health Sociology Review, 23(1), 10–19. 10.5172/hesr.2014.23.1.10 DOI

Johnstone, M. J. (2013). Metaphors, stigma and the ‘Alzheimerization’ of the euthanasia debate. Dementia, 12(4), 377–393. 10.1177/1471301211429168 PubMed DOI

Kessler, E. M., Bowen, C. E., Baer, M., Froelich, L., & Wahl, H. W. (2012). Dementia worry: A psychological examination of an unexplored phenomenon. European Journal of ageing, 9(4), 275–284. 10.1007/s10433-012-0242-8 PubMed DOI PMC

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Open University Press.

Lane, H. P., McLachlan, S., & Philip, J. (2013). The war against dementia: Are we battle weary yet? Age and Ageing, 42(3), 281–283. 10.1093/ageing/aft011 PubMed DOI

Langdon, S. A., Eagle, A., & Warner, J. (2007). Making sense of dementia in the social world: A qualitative study. Social Science & Medicine (1982), 64(4), 989–1000. 10.1016/j.socscimed.2006.10.029 PubMed DOI

Latimer, J. (2018). Repelling neoliberal world-making? How the ageing–dementia relation is reassembling the social. The Sociological Review, 66(4), 832–856. 10.1177/0038026118777422 DOI

Levy, B. (2009). Stereotype embodiment: A psychosocial approach to aging. Current Directions in Psychological Science, 18(6), 332–336. 10.1111/j.1467-8721.2009.01662.x PubMed DOI PMC

Lingler, J. H., Nightingale, M. C., Erlen, J. A., Kane, A. L., ReynoldsC. F., 3rd, Schulz, R., & DeKosky, S. T. (2006). Making sense of mild cognitive impairment: A qualitative exploration of the patient’s experience. Gerontologist, 46(6), 791–800. 10.1093/geront/46.6.791. PubMed DOI

Lock, M. (2014). The Alzheimer conundrum: Entanglements of dementia and aging. Princeton University Press.

Low, L. F., & Anstey, K. J. (2009). Dementia literacy: Recognition and beliefs on dementia of the Australian public. Alzheimer's & Dementia, 5(1), 43–49. 10.1016/j.jalz.2008.03.011 PubMed DOI

Low, L. F., & Purwaningrum, F. (2020). Negative stereotypes, fear and social distance: A systematic review of depictions of dementia in popular culture in the context of stigma. BMC Geriatrics, 20(1), 1–16. 10.1186/s12877-020-01754-x PubMed DOI PMC

Marhánková, J. H. (2023). The role of dementia and Alzheimer’s disease in older adults’ representations of aging and anxieties regarding one’s own future. Journal of Aging Studies, 65, 101127. 10.1016/j.jaging.2023.101127 PubMed DOI

Mátl, O., Mátlová, M., & Holmerová, I. (2016). Zpráva o stavu demence 2015. Česká alzheimerovská společnost, o.p.s. https://www.alzheimer.cz/res/archive/004/000480.pdf?seek=1492589048

McParland, P., Kelly, F., & Innes, A. (2017). Dichotomising dementia: Is there another way? Sociology of Health & Illness, 39(2), 258–269. 10.1111/1467-9566.12438 PubMed DOI

Molden, J., & Maxfield, M. (2017). The impact of aging stereotypes on dementia worry. European Journal of Ageing, 14, 29–37. 10.1007/s10433-016-0378-z PubMed DOI PMC

Nagel, A. K., Loetscher, T., Smith, A. E., & Keage, H. A. (2021). What do the public really know about dementia and its risk factors? Dementia, 20(7), 2424–2440. 10.1177/1471301221997301 PubMed DOI

Peel, E. (2014). ‘The living death of Alzheimer’s’ versus ‘Take a walk to keep dementia at bay’: Representations of dementia in print media and carer discourse. Sociology of Health & Illness, 36(6), 885–901. 10.1111/1467-9566.12122 PubMed DOI PMC

Sontag, S. (1978). Illness as metaphor. Farrar, Straus & Giroux.

Souralová, A., & Šlesingerová, E. (2017). Post-socialist eldercare in the Czech Republic: Institutions, families, and the market. In Christensen K. & Pilling D. (Eds.), The Routledge handbook of social care work around the world (pp. 159–170). Routledge.

Strikwerda-Brown, C., Grilli, M. D., Andrews-Hanna, J., & Irish, M. (2019). “All is not lost”—Rethinking the nature of memory and the self in dementia. Ageing Research Reviews, 54, 100932. 10.1016/j.arr.2019.100932 PubMed DOI PMC

Sun, F., Gao, X., & Coon, D. W. (2015). Perceived threat of Alzheimer’s disease among Chinese American older adults: The role of Alzheimer’s disease literacy. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 70(2), 247–257. 10.1093/geronb/gbt095 PubMed DOI

Sweeting, H., & Gilhooly, M. (1997). Dementia and the phenomenon of social death. Sociology of Health and Illness, 19(1), 93–117. 10.1111/1467-9566.00042 DOI

Ústav zdravotnických informací a statistiky ČR. (2023). Psychiatrická ročenka. https://www.uzis.cz/res/f/008442/psych2022.pdf

Van Gorp, B., & Vercruysse, T. (2012). Frames and counter-frames giving meaning to dementia: A framing analysis of media content. Social Science & Medicine (1982), 74(8), 1274–1281. 10.1016/j.socscimed.2011.12.045 PubMed DOI

Woods, B., Arosio, F., Diaz, A., Gove, D., Holmerová, I., Kinnaird, L., Mátlová, M., Okkonen, E., Possenti, M., Roberts, J., Salmi, A., van den Buuse, S., Werkman, W., & Georges, J. (2019). Timely diagnosis of dementia? Family carers’ experiences in 5 European countries. International Journal of Geriatric Psychiatry, 34(1), 114–121. 10.1002/gps.4997 PubMed DOI PMC

Yun, S., & Maxfield, M. (2020). Correlates of dementia-related anxiety: Self-perceived dementia risk and ageism. Educational Gerontology, 46(9), 563–574. 10.1080/03601277.2020.1790103 PubMed DOI PMC

Zeilig, H. (2014). Dementia as a cultural metaphor. Gerontologist, 54(2), 258–267. 10.1093/geront/gns203 PubMed DOI