1,958
Views
1
CrossRef citations to date
0
Altmetric
Articles

Dignity humiliation as experienced by wives caring for a home-dwelling husband with dementia

ORCID Icon, ORCID Icon & ORCID Icon
Pages 1315-1336 | Received 20 Mar 2022, Accepted 03 Apr 2022, Published online: 15 Apr 2022

References

  • Alzheimer’s Disease International. (2015). Women and dementia. A global research review. https://www.alzint.org/resource/women-and-dementia-a-global-research-review/
  • Alzheimer’s Society. (2014). Dementia UK: Second edition – Overview. http://eprints.lse.ac.uk/59437/1/Dementia_UK_Second_edition_-_Overview.pdf
  • Baillie, L., Gallagher, A., & Wainwright, P. (2008). Defending dignity: Challenges and opportunities. Royal College of Nursing. https://www.dignityincare.org.uk/_assets/RCN_Digntiy_at_the_heart_of_everything_we_do.pdf
  • Bergbom, I., Nåden, D., & Nyström, L. (2021, October 5). Katie Eriksson’s caring theories. Part 1. The caritative caring theory, the multidemensional heath theory and the theory of human suffering. Scandinavian Journal of Caring Sciences, 00, 1–9. https://doi.org/10.1111/scs.13036
  • Boylstein, C., & Hayes, J. (2012). Reconstructing marital closeness while caring for a spouse with Alzheimer’s. Journal of Family Issues, 33(5), 584–612. https://doi.org/10.1177/0192513X11416449
  • Brinkmann, S. (2015). Interviews: Learning the craft of qualitative research interviewing (3rd ed.). SAGE Publications Inc.
  • Chiari, A., Pistoresi, B., Galli, C., Tondelli, M., Vinceti, G., Molinari, M. A., Addabbo, T., & Zamboni, G. (2021). Determinants of caregiver burden in early-onset Dementia. Dementia and Geriatric Cognitive Disorders Extra, 11(2), 189–197. https://doi.org/10.1159/000516585
  • Clemmensen, T. H., Lauridsen, H. H., Andersen-Ranberg, K., & Kaae, H. (2021). ‘I know his needs better than my own’ – carers’ support needs when caring for a person with dementia. Scandinavian Journal of Caring Sciences, 35(2), 586–599. https://doi.org/10.1111/scs.12875
  • Dunham, C. C., & Cannon, J. H. (2008). They’re still in control enough to be in control”: Paradox of power in dementia caregiving. Journal of Aging Studies, 22(1), 45–53. https://doi.org/10.1016/j.jaging.2007.02.003
  • Eriksson, K. (1992). Nursing: The caring practice ‘being there. In D. A. Gaut (Ed.), The presence of caring in nursing (pp. 201–210). National League for Nursing Press.
  • Eriksson, K. (1997). Caring, spirituality and suffering. In M. S. Roach (Ed.) Caring from the heart. The convergence of caring and spirituality (pp. 68–84). Paulist Press.
  • Eriksson, K. (2002). Caring science in a new key. Nursing Science Quarterly, 15(1), 61–65. https://doi.org/10.1177/089431840201500110
  • Eriksson, K. (2006). The suffering human being. Nordic Studies Press.
  • Eriksson, K. (2013). Jäg var där, jag såg, jag vittnade och jag blev ansvarlig – den vårdande etikens mantra [I was there, I saw, I witnessed and became responsible – the mantra of caring ethos]. In H. Alvsvåg, Å. Bergland, & O. Førland (Eds.), Nødvendige omveier [Necessary detours] (pp. 69–85). Cappelen Damm Akademisk.
  • Eriksson, K. (2018). Vårdvetenskap: vetenskapen om vårdandet – Om det tidlösa i tiden. Samlingsverk av Katie Eriksson. Caring Science. [The science about the Essence of Care About the Timeless in Time. A collection by Katie Eriksson]. Liber AB.
  • Erol, R., Brooker, D., & Peel, E. (2016). The impact of dementia on women internationally: An integrative review. Health Care for Women International, 37(12), 1320–1341. https://doi.org/10.1080/07399332.2016.1219357
  • Friedemann, M.-L., & Buckwalter, K. C. (2014). Family caregiver role and burden relatedto gender and family relationships. Journal of Family Nursing, 20(3), 313–336. https://doi.org/10.1177/1074840714532715
  • Gadamer, H. G. (2004). Truth and method (2nd rev. ed.). Bloomsbury Academic.
  • Gilbert, P. (1997). The evolution of social attractiveness and its role in shame, humiliation, guilt and therapy. British Journal of Medical Psychology, 70(2), 113–147. https://bpspsychub.onlinelibrary.wiley.com https://doi.org/10.1111/j.2044-8341.1997.tb01893.x
  • Global Dignity. (2021). Global dignity day. https://globaldignity.org/global-dignity-day/
  • Guba, E. G., Lincoln, Y. S., & Denzin, N. K. (1994). Competing paradigms in qualitative research. In Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 105–117) Sage.
  • Hammar, L. M., Williams, C. L., Meranius, M. S., & McKee, K. (2021). Being ‘alone’ striving for belonging and adaptation in a new reality – The experiences of spouse carers of persons with dementia. Dementia, 20(1), 273–290. https://doi.org/10.1177/1471301219879343
  • Hiles, D., & Čermák, I. (2007, July 3–6). Qualitative research: Transparency and narrative oriented inquiry. Paper presented at 10th ECP, Prague, Czech Republic. https://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.492.634&rep=rep1&type=pdf
  • Johansson, M. F., McKee, K. J., Dahlberg, L., Williams, C. L., Summer Meranius, M., Hanson, E., Magnusson, L., Ekman, B., & Marmstål Hammar, L. (2021). A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data. BMC Geriatrics, 21(1), 338. https://doi.org/10.1186/s12877-021-02264-0
  • Kierkegaard, S. (2000). On my work as an author (August 1851). The point of view for my work as an author (written 1848, published 1859). In H. V. Hong & E. H. Hong (Eds.), The essential Kierkegaard (pp. 460). Princeton University Press.
  • Kim, H., Chang, M., Rose, K., & Kim, S. (2012). Predictors of caregiver burden in caregivers of individuals with dementia. Journal of Advanced Nursing, 68(4), 846–855. https://doi.org/10.1111/j.1365-2648.2011.05787.x
  • Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Sage.
  • Lindborg, R. (Ed.) (1974). Om människans värdighet : med några kapitel om humanism och mystik och naturfilosofi under renässansen/Giovanni Pico della Mirandola [About human dignity: with some chapters on humanism and mysticism and natural philosophy during the Renaissance/Giovanni Pico della Mirandola]. In Skrifter utgivna av Vetenskapssocieteten i Lund (Vol. 71). Science Society in Lund.
  • Lindström, U. Å. (1994). Psykiatrisk vårdlära [Textbook in psychiatric care]. Liber Utbildning.
  • Lindström, U. Å., Lindholm, L., & Zetterlund, J. E. (2018). Theory of caritative caring. In M. R. Alligood (Ed.), Nursing theorists and their work (9th ed., pp. 140–163). Elsevier.
  • Margalit, A. (1996). The decent society (pp. 115). Harvard University Press.
  • Nåden, D., & Eriksson, K. (2000). The phenomenon of confirmation: An aspect of nursing as an art. International Journal of Human Caring, 4(3), 23–28. https://doi.org/10.20467/1091-5710.4.3.23
  • Nåden, D., & Eriksson, K. (2002). Encounter – A fundamental category of nursing as an art. International Journal of Human Caring, 6(1), 34–40. https://doi.org/10.20467/1091-5710.6.1.34
  • Nåden, D., & Eriksson, K. (2004). Understanding the importance of values and moral attitudes in nursing care in preserving human dignity. Nursing Science Quarterly, 17(1), 86–91. https://doi.org/10.1177/0894318403260652
  • National Dignity Council (UK). (n.d.). Dignity in care campaign. https://www.dignityincare.org.uk/About/National_Dignity_Council/
  • Norwegian Ministry of Health and Care Services. (2010). Verdighetsgarantiforskriften, Forskrift om en verdig eldreomsorg (verdighetsgarantien) [Regulation concerning dignified care for older people (The dignity guarantee)]. https://lovdata.no/dokument/SF/forskrift/2010-11-12-1426
  • Polit, D. F., & Beck, C. (2010). Essentials of nursing research: Appraising evidence for nursing practice. Wolters Kluwer/Lippincott Williams & Wilkins.
  • Potgieter, J. C., & Heyns, P. M. (2006). Caring for a spouse with Alzheimer’s disease: Stressors and strengths. South African Journal of Psychology, 36(3), 547–563. https://doi.org/10.1177/008124630603600307
  • Sagbakken, M., Nåden, D., Ulstein, I., Kvaal, K., Langhammer, B., & Rognstad, M.-K. (2017). Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers. BMC Health Services Research, 17(1), 432. https://doi.org/10.1186/s12913-017-2378-x
  • Statman, D. (2000). Humiliation, dignity and self-respect. Philosophical Psychology, 13(4), 523–540. https://doi.org/10.1080/09515080020007643
  • Thorsen, K., & Johannessen, A. (2021). Metaphors for the meaning of caring for a spouse with dementia. Journal of Multidisciplinary Healthcare, 14, 181–195. https://doi.org/10.2147/JMDH.S289104
  • Tranvåg, O., Nåden, D., & Gallagher, A. (2019). Dignity work of older women caring for a Husband with dementia at home. Health Care for Women International, 40(10), 1047–1069. https://doi.org/10.1080/07399332.2019.1578780
  • Tranvåg, O., Petersen, K. A., & Nåden, D. (2015). Relational interactions preserving dignity experience: Perceptions of persons living with dementia. Nursing Ethics, 22(5), 577–593. https://doi.org/10.1177/0969733014549882
  • Tranvåg, O., Petersen, K. A., & Nåden, D. (2016). Crucial dimensions constituting dignity experience in persons living with dementia. Dementia (London, England), 15(4), 578–595. https://doi.org/10.1177/1471301214529783
  • United Nations. (1948). Universal declaration of human rights. https://www.un.org/en/about-us/universal-declaration-of-human-rights
  • van Gennip, I. E., Pasman, H. W. P., 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
  • World Health Organization and Alzheimer’s Disease International. (2012). Dementia: A public health priority. https://www.who.int/publications/i/item/dementia-a-public-health-priority
  • World Health Organization. (2017). Global action plan on the public health response to dementia 2017-2025. https://apps.who.int/iris/bitstream/handle/10665/259615/9789241513487-eng.pdf?sequence=1&isAllowed=y
  • World Health Organization. (2021). Dementia. https://www.who.int/news-room/fact-sheets/detail/dementia
  • World Medical Association. (2013). Declaration of Helsinki. Ethical principles for medical research involving human subjects. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/