Cognitive and emotional attitudes towards dementia and persons withdementia in family carers and individuals with no experience in caring
DOI:
https://doi.org/10.12923/2353-8627/2026-0009Keywords:
dementia representation, caregiving, feelings about persons with dementiaAbstract
Introduction: Perception of dementia and direct contact with individuals with dementia seem to be important factors modifying attitudes towards the patient group. The study aims were formulated to assess: (1) the difference between carers for a family member with dementia and those with no experience in caring for a chronically ill person in terms of their perceptions of dementia, competence and warmth ratings of persons with dementia and feelings about them, (2) the influence of dementia representation and experience of caring on warmth, competence ratings and feelings about persons with dementia.
Material and methods: A total of 57 individuals participated in the study, including: 27 family carers (Cg) and 30 controls without caregiving experience (C). The Revised Illness Perception Questionnaire (IPQ-R) and experimental tasks of our own design were used to assess attitudes to dementia itself and persons with dementia.
Results: The study showed significant differences between groups and specific profiles of each group in the range of dementia representation and perception of individuals with dementia. The significant associations between various aspects of dementia perceptions and attitudes towards people with dementia were obtained. Experiences in caring for individuals with dementia partially explained the perception of their efficiency.
Conclusions: Family carers highlight self-confidence as a dominant characteristic of individuals with dementia, which may reflect some dementia deficits. Pity as a substantial characteristic in emotional attitude towards persons with dementia prevails in individuals with no experience in caring, whereas anxiety predominates in family carers.
References
1. World Health Organization (WHO). Dementia Key Facts; 2025 [updated June 26, 2026]. Accessible at: https://www.who.int/news-room/fact-sheets/detail/dementia
2. Low LF, Purwaningrum F. Negative stereotypes, fear and social distance: a systematic review of depictions of dementia in popular culture in the context of stigma. BMC Geriatr. 2020;20:477. https://doi.org/10.1186/s12877-020-01754-x
3. Putland E, Brookes G. Visualizing dementia and stigma: a scoping review of the literature. Vis Commun. 2024:14703572241245587. https://doi.org/10.1177/14703572241245587
4. O’Connor ML, McFadden SH. A Terror Management Perspective on Young Adults’ Ageism and Attitudes Toward Dementia. Educ Gerontol. 2012;38(9): 627–643. https://doi.org/10.1080/03601277.2011.595335
5. von dem Knesebeck O, Angermeyer MC, Lüdecke D, Kofahl C. Emotional reactions toward people with dementia–results of a population survey from Germany. Int Psychogeriatr. 2014;26(3):435-441. https://doi.org/10.1017/S1041610213002056
6. Quinn C, Jones IR, Martyr A, Nelis SM, Morris RG, Clare L. Caregivers' beliefs about dementia: findings from the IDEAL study. Psychol Health. 2019;34(10):1214-1230. https://doi.org/10.1080/08870446.2019.1597098
7. Calia C, Johnson H, Cristea M. Cross-cultural representations of dementia: an exploratory study. J Glob Health. 2019;9(1): 011001. https://doi.org/10.7189/jogh.09.011001
8. Leventhal H, Brissette I, Leventhal EA. The self-regulation of health and illness behaviour. In: Cameron LD, Leventhal H. eds., Self-regulation, health, and illness: An overview. The self-regulation of health and illness behaviour. 2003;42:1-15.
9. Leventhal H, Phillips LA, Burns E. The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management. J Behav Med. 2016;39:935–946. https://doi.org/10.1007/s10865-016-9782-2
10. Shinan-Altman S, Werner P. Is there an association between help-seeking for early detection of Alzheimer’s disease and illness representations of this disease among the lay public? Int J Geriatr Psychiatry. 2017;32(12):e100–e106. https://doi.org/10.1002/gps.4661
11. Parveen S, Peltier C, Oyebode JR. Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise. Health Soc Care Community. 2017;25(2):734-742. https://doi.org/10.1111/hsc.12363
12. Shinan-Altman S, Werner P. Illness representations of dementia: a scoping review. Clin Interv Aging. 2019;18(14):179-193. https://doi.org/10.2147/CIA.S193316
13. Glidewell L, Johnston M, Thomas R. Shared understandings of dementia? An application of the Common Sense Self-Regulation Model to a case study. Dementia. 2012;11(2): 217-250. https://doi.org/10.1177/1471301211416611
14. Roberts JS, Connell CM. Illness representations among first-degree relatives of people with Alzheimer disease. Alzheimer Dis Assoc Disord. 2000;14(3):129-136, Discussion 127-8. https://doi.org/10.1097/00002093-200007000-00003
15. Quinn C, Jones IR, Clare L. Illness representations in caregivers of people with dementia, Aging Ment Health. 2017;21(5): 553-561. https://doi.org/10.1080/13607863.2015.1128882
16. Cuadrado F, Antolí A, Fernández-Calvo B, Vacas J. How to improve attitudes towards dementia? Reframing as a tool to overcome the stigma around Alzheimer’s disease. Patient Educ Couns. 2023;115:107897. https://doi.org/10.1016/j. pec.2023.107897
17. Langdon SA, Eagle A, Warner J. Making sense of dementia in the social world: A qualitative study. Soc Sci Med. 2007;64(4): 989¬1000 https://doi.org/10.1016/j.socscimed.2006.10.029.
18. Blay SL, Toledo Pisa Peluso E. Public stigma: the community's tolerance of Alzheimer disease. Am J Geriatr Psychiatry. 2010;18(2):163-71. https://doi.org/10.1097/JGP.0b013e3181bea900
19. Werner P, Heinik J. Stigma by association and Alzheimer's disease. Aging Ment Health. 2008;12(1):92-9. https://doi.org/10.1080/13607860701616325
20. Werner P, Mittelman MS, Goldstein D, Heinik J. Family stigma and caregiver burden in Alzheimer's disease. Gerontologist. 2012;52(1):89-97. https://doi.org/10.1093/geront/gnr117
21. Werner P. Stigma and Alzheimer's disease: A systematic review of evidence, theory, and methods. In: Corrigan PW. ed., The stigma of disease and disability: Understanding causes and overcoming injustices. American Psychological Association; 2014: 223–244. https://doi.org/10.1037/14297-012
22. Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol. 2001;27(1): 363-385. https://doi.org/10.1146/annurev. soc.27.1.363
23. Devlin E, MacAskill S, Stead M. ‘We're still the same people’: developing a mass media campaign to raise awareness and challenge the stigma of dementia. Int. J. Nonprofit Volunt. Sect. Mark. 2007;12:47-58. https://doi.org/10.1002/nvsm.273
24. Graham N, Lindesay J, Katona C, Bertolote JM, Camus V, Copeland JR. Reducing stigma and discrimination against older people with mental disorders: a technical consensus statement. Int J Geriatr Psychiatry. 2003;18(8):670-8. https://doi.org/10.1002/gps.876
25. Lundquist TS, Ready RE. Young adult attitudes about Alzheimer's disease. Am J Alzheimers Dis Other Demen. 2008;23(3):267-73. https://doi.org/10.1177/1533317508317818
26. O'Connor ML, McFadden SH. Development and Psychometric Validation of the Dementia Attitudes Scale. Int J Alzheimers Dis. 2010;22:454218 https://doi.org/10.4061/2010/454218
27. Cohen M, Werner P, Azaiza F. Emotional reactions of Arab lay persons to a person with Alzheimer's disease. Aging Ment Health. 2009;13(1):31-7. https://doi.org/10.1080/13607860802154440
28. Cuddy AJ, Fiske ST. Doddering but dear: Process, content, and function in stereotyping of older persons. In; Nelson TD. ed., Ageism: Stereotyping and prejudice against older persons. Cambridge MA; The MIT Press: 2002: 3–26.
29. Cuddy AJ, Norton MI, Fiske ST. This Old Stereotype: The Pervasiveness and Persistence of the Elderly Stereotype. J Soc Issues. 2005;61:267-285. https://doi.org/10.1111/j.1540-4560.2005.00405.x
30. De Paula Couto MCP, Koller SH. Warmth and competence: Stereotypes of the elderly among young adults and older persons in Brazil. Int Perspect Psychol. 2012;1:52–62. https://doi.org/10.1037/a0027118
31. Diekfuss JA, De Larwelle J, McFadden SH. Diagnosis makes a difference: Perceptions of older persons with dementia symptoms. Exp Aging Res. 2018;44(2):148-161 https://doi.org/10.1080/0361073X.2017.1422475
32. Fiske ST, Cuddy AJ, Glick P, Xu J. A model of (often mixed) stereotype content: Competence and warmth respectively follow from perceived status and competition. J Pers Soc Psychol. 2002;82:878–902. https://doi.org/10.1037/0022-3514.82.6.878
33. Link BG, Yang LH, Phelan JC, Collins PY. Measuring mental illness stigma. Schizophr Bull. 2004;30(3):511–541. https://doi.org/10.1093/oxfordjournals.schbul.a007098
34. Alzheimer’s Disease International. World Alzheimer Report: Attitudes to Dementia; 2019 [updated June 26, 2026]. Accessible at: https://www.alzint.org/u/WorldAlzheimerReport2019.pdf.
35. Wearing S. Deconstructing the American family: figures of parents with dementia in Jonathan Franzen’s the corrections and A.M. Homes’ may we be forgiven. In: Swinnen A, Schweda M. eds. Popularizing dementia: public expressions and representations of forgetfulness. Germany; Transcript-Verlag: 2015: 43–68.
36. Brookes G, Harvey K, Chadborn N, Dening T. “Our biggest killer”: multimodal discourse representations of dementia in the British press. Soc Semiot. 2018;28(3):371–95.
37. Werner P, Davidson M. Emotional reactions of lay persons to someone with Alzheimer's disease. Int J Geriatr Psychiatry. 2004;19(4):391-397. https://doi.org/10.1002/gps.1107
38. Rüsch N, Angermeyer MC, Corrigan PW. Mental illness stigma: concepts, consequences, and initiatives to reduce stigma. Eur Psychiatry. 2005;20(8):529-39. https://doi.org/10.1016/j.eurpsy.2005.04.004
39. Cheng ST, Lam LCW, Chan LCK, Law ACB, Fung AWT, Chan WC, et al. The effects of exposure to scenarios about dementia on stigma and attitudes toward dementia care in a Chinese community. Int. Psychogeriatr. 2011;23:1433–1441.
40. Moss-Morris R, Weinman J, Petrie KJ, Hornec R, Cameron LD, Buick D. The Revised Illness Perception Questionnaire (IPQ-R). Psychol Health. 2002;17: 1–16. https://doi.org/10.1080/08870440290001494
41. Wojtyna E. Poznawcze, afektywne i społeczne uwarunkowania stosowania się do zaleceń lekarskich przez chorych na cukrzycę typu 2. Praca doktorska. Katowice; Uniwersytet Śląski: 2011.
42. Leventhal H, Rabin C, Leventhal EA, Burns E. Health risk behaviours and aging. In: Birren R, Schaie W. eds., Handbook of the Psychology and Aging. 5th Edition. San Diego; Academic Press: 2001: 186-214.
43. Benyamini Y, Medalion B, Garfinkel D. Patient and spouse perceptions of the patient's heart disease and their associations with received and provided social support and undermining. Psychol. Health. 2007;22(7):2007765-785. http://dx.doi.org/10.1080/14768320601070639
44. Bedyńska S, Książek M. Statystyczny drogowskaz: praktyczny przewodnik wykorzystania modeli regresji oraz równań strukturalnych. Warszawa; Wydawnictwo Akademickie Sedno: 2012.
45. Field A. Discovering statistics using SPSS: Book plus code for E version of text (Vol. 896). London; SAGE Publications Limited: 2009.
46. Baines T, Wittkowski AA. Systematic Review of the Literature Exploring Illness Perceptions in Mental Health Utilising the Self-Regulation Model. J Clin Psychol Med Settings. 2013;20: 263–274. https://doi.org/10.1007/s10880-012-9337-9
Downloads
Published
Issue
Section
License
Copyright (c) 2026 Ewa Zawadzka, Łucja Domańska (Author)
This work is licensed under a Creative Commons Attribution 4.0 International License.
