test Women’s narratives on caring for people living with dementia: Exploring challenges and resources|Homo Virtualis

Women’s narratives on caring for people living with dementia: Exploring challenges and resources


Sophia Adaliali
https://orcid.org/0009-0001-5548-9742
Resumen

Dementia is a growing global health issue, affecting not only those diagnosed, but also their close environment, particularly family members, most often women, who take on caring responsibilities. The present research aims to explore the experiences of women caring for people with dementia within the Greek sociocultural context, focusing on the difficulties they encounter, the strategies they adopt to cope. The study is grounded in the phenomenological paradigm, seeking to highlight the subjective experience as it is lived and given meaning by the participants themselves. The sample consisted of 12 women caregivers of different ages and social characteristics from three major Greek cities, who care for or have cared for relatives with dementia in the past. Data were collected through semi-structured interviews that integrated appreciative inquiry activities and multimodal methods, such as photo-elicitation and projective cards, which contributed to the emergence of symbolic meanings. Interpretative Phenomenological Analysis (IPA) was used, through which common themes was identified regarding the practical and emotional challenges of caregiving, its impact on relationships and roles, fears and existential concerns, loss management and personal sources of meaning and resilience. The study concludes that caring for people with dementia is a complex and multidimensional experience, and as such requires greater recognition and support at both social and institutional levels.

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Alves, L. C. de S., Monteiro, D. Q., Bento, S. R., Hayashi, V. D., Pelegrini, L. N. de C., & Vale, F. A. C. (2019). Burnout syndrome in informal caregivers of older adults with dementia: A systematic review. Dementia & Neuropsychologia, 13(4), 415–421. https://doi.org/10.1590/1980-57642018dn13-040008
Alzheimer’s Association. (n.d.). What is dementia? https://www.alz.org/alzheimers-dementia/what-is-dementia
Ayres, L. (2000b). Narratives of family caregiving: The process of making meaning. Research in Nursing and Health, 23, 424-434
Boss, P. (2007), Ambiguous Loss Theory: Challenges for Scholars and Practitioners. Family Relations, 56: 105-111. https://doi.org/10.1111/j.1741-3729.2007.00444.x
Brailas, A. (2020). Using Drawings in Qualitative Interviews: An Introduction to the Practice. The Qualitative Report, 25(12), 4447–4460. https://doi.org/10.46743/2160-3715/2020.4585
Brailas, A. (2025). The Appreciative Qualitative Interview: A Research Method for Empowering People. Methodology. European Journal of Research Methods for the Behavioral and Social Sciences. https://doi.org/10.5964/meth.15421
Brailas, A., Tragou, E., & Papachristopoulos, K. (2023). Introduction to Qualitative Data Analysis and Coding with QualCoder. American Journal of Qualitative Research, 7(3), 19–31. https://doi.org/10.29333/ajqr/13230
Budnick, A., Hering, C., Eggert, S. et al. Informal caregivers during the COVID-19 pandemic perceive additional burden: findings from an ad-hoc survey in Germany. BMC Health Serv Res 21, 353 (2021). https://doi.org/10.1186/s12913-021-06359-7
Gill S. L. (2024). About Research - Qualitative Data Collection: Photo Elicitation. Journal of human lactation: official journal of International Lactation Consultant Association, 40(4), 503–505. https://doi.org/10.1177/08903344241273863
Gérain, P., & Zech, E. (2019). Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Frontiers in Psychology, 10, Article 1748. https://doi.org/10.3389/fpsyg.2019.01748
Hazzan, A. A., Dauenhauer, J., Follansbee, P., Hazzan, J. O., Allen, K., & Omobepade, I. (2022). Family caregiver quality of life and the care provided to older people living with dementia: qualitative analyses of caregiver interviews. BMC Geriatrics, 22(1). https://doi.org/10.1186/s12877-022-02787-0
Issari, P., & Tsaliki, C. (2017). Stories of family caregivers of people with dementia in Greece: Implications for counselling. European Journal of Psychotherapy & Counselling, 19(3), 290–306. https://doi.org/10.1080/13642537.2017.1348378
Moreno-Cámara, S., Palomino-Moral, P. Á., Moral-Fernández, L., Frías-Osuna, A., Parra-Anguita, L., & del-Pino-Casado, R. (2019). Perceived needs of the family caregivers of people with dementia in a mediterranean setting: A qualitative study. International Journal of Environmental Research and Public Health, 16(6). https://doi.org/10.3390/ijerph16060993
Pinquart, M., & Sörensen, S. (2003). Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. The journals of gerontology. Series B, Psychological sciences and social sciences, 58(2), P112–P128. https://doi.org/10.1093/geronb/58.2.p112
Prunty, M. M., & Foli, K. J. (2019). Guilt experienced by caregivers to individuals withdementia: A concept analysis. International Journal of Older People Nursing, 14(2), e12227. https://doi.org/10.1111/opn.12227
Rising, K. L., Salcedo, V. J., Amadio, G., Casten, R., Chang, A., Gentsch, A., O’Hayer, C. V., Sarpoulaki, N., Worster, B., & Gerolamo, A. M. (2021). Living Through the Pandemic: The Voices of Persons With Dementia and Their Caregivers. Journal of Applied Gerontology, 41(1), 30-35. https://doi.org/10.1177/07334648211036399
Smith, J. A. (2017). Interpretative phenomenological analysis: Getting at lived experience. The Journal of Positive Psychology, 12(3), 303–304. https://doi.org/10.1080/17439760.2016.1262622
Tatangelo, G., McCabe, M., Macleod, A., & You, E. (2018). “I just don’t focus on my needs.” The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study. International Journal of Nursing Studies, 77, 8–14. https://doi.org/10.1016/j.ijnurstu.2017.09.011
Tuomola, J., Soon, J., Fisher, P., & Yap, P. (2016). Lived Experience of Caregivers of Persons with Dementia and the Impact on their Sense of Self: A Qualitative Study in Singapore. Journal of Cross-Cultural Gerontology, 31(2), 157–172. https://doi.org/10.1007/s10823-016-9287-z
Willig, C. (2013). Introducing Qualitative Research In Psychology. McGraw Hill Education, Open University Press
World Health Organization. (n.d.). Dementia. World Health Organization. https://www.who.int/health-topics/dementia#tab=tab_2
Wurm, R., & Stögmann, E. (2021). Epidemiology of dementia - the epidemic we saw coming. Wiener Medizinische Wochenschrift, 171 (7–8), 247–248. https://doi.org/10.1007/s10354-021-00838-6
Zarit, S. H. (2008). Diagnosis and management of caregiver burden in dementia. Handbook of Clinical Neurology, 89, 101–106
Ίσαρη, Φ., & Πουρκός, Μ. (2015). Ποιοτική Μεθοδολογία Έρευνας: Εφαρμογές στην Ψυχολογία και την Εκπαίδευση. ΣΕΑΒ (www.Kallipos.gr). http://dx.doi.org/10.57713/kallipos-473
Λυδάκη, Α. (2016). Αναζητώντας το χαμένο παράδειγμα: Επιτόπια έρευνα, κατανόηση, ερμηνεία. Παπαζήσης.