Continuity, coping and finding meanings in everyday life: Storytelling by family members of people with young onset dementia
DOI:
https://doi.org/10.20377/jfr-962Keywords:
family carer, narrative reconstruction, actantial model, dementia care, young onset dementia, qualitative longitudinal researchAbstract
Objective: This narrative study explores how family members readjust to young onset dementia (YOD) being a part of their everyday life during the first four years of their family member’s illness.
Background: Young onset dementia affects family relationships and challenges their life situation from the onset of the illness. It is therefore important to recognise and understand the family members’ supportive and resisting issues as well as their coping styles.
Method: The data was collected in Finland by conducting interviews with 16 family members of people with YOD and these were repeated once a year for four years (2019 to 2022). The actant model was used to carry out the analysis.
Results: Narrating the situation helps family members reconstruct their own story of their changed situation. Family members adjust their life situation at the beginning of the YOD diagnosis by retaining their daily continuity, coping, and by finding meanings. These require a recognition and an acceptance of the changes that YOD creates in relationships and daily living and may lead to a storyline that is broken, adaptive or alternative.
Conclusion: When family members engage in storytelling, this can result in an increased awareness of their situation and lead them to identify opportunities and problems and solve them. This also leads to their readjustment to dementia as a part of their own personal narrative.
References
Aarva, P., & Pakarinen, M. (2006). Studying the striving and opposing forces in newspaper journalism: The actantial model of health promotion. Health Promotion International, 21(2), 160–168. DOI: https://doi.org/10.1093/heapro/dal010
Atchley, R. C. (1989). A continuity theory of normal aging. The Gerontologist, 29(2), 183–190. DOI: https://doi.org/10.1093/geront/29.2.183
Bannon, S. M., Reichman, M., Popok, P., Grunberg, V. A., Traeger, L., Gates, M. V., Krahn, E. A., Brandt, K., Quimby, M., Wong, B., Dickerson, B. C., & Vranceanu, A.-M. (2022). Psychosocial Stressors and Adaptive Coping Strategies in Couples After a Diagnosis of Young-Onset Dementia. The Gerontologist, 62(2), 262–275. DOI: https://doi.org/10.1093/geront/gnab053
Baltes, B. B., & Rudolph, C. W. (2012). The Theory of Selection, Optimization, and Compensation. In M. Wang (Ed.), The Oxford Handbook of Retirement (p. 88–101). Oxford University Press. DOI: https://doi.org/10.1093/oxfordhb/9780199746521.013.0044
Butcher, H. K., & Buckwalter, K. C. (2002). Exasperations as Blessings: Meaning-Making and the Caregiv-ing Experience. Journal of Aging and Identity, 7(2), 113–132. DOI: https://doi.org/10.1023/A:1015439218276
Clemmensen, T. H., Busted, L. M., Søborg, J., & Bruun, P. (2019). The family’s experience and perception of phases and roles in the progression of dementia: An explorative, interview-based study. Dementia, 18(2), 490–513. DOI: https://doi.org/10.1177/1471301216682602
DiLauro, M., Pereira, A., Carr, J., Chiu, M., & Wesson, V. (2017). Spousal caregivers and persons with de-mentia: Increasing participation in shared leisure activities among hospital-based dementia support program participants. Dementia, 16(1), 9–28. DOI: https://doi.org/10.1177/1471301215570680
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. DOI: https://doi.org/10.1016/j.jaging.2007.02.003
Farran, C. J. (1997). Theoretical perspectives concerning positive aspects of caring for elderly persons with dementia: Stress/adaptation and existentialism. The Gerontologist, 37(2), 250–256. DOI: https://doi.org/10.1093/geront/37.2.250
Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. University of Chicago Press. DOI: https://doi.org/10.7208/chicago/9780226260037.001.0001
Frankl, V. E. (1979). Ihmisyyden rajalla (2. p.). Otava. Original book: From death-camp to existentialism. Finnish translation: Jokinen, O & Sandborg, E.
Frankl, V. E. (2005). Logoterapia—Avain mielekkääseen elämään. Lyhytterapiainstituutti; Suomen logoterapiayhdistys. Finnish translation: Viitanen, R.
Freeman, M. (2000). When the story’s over: Narrative foreclosure and the possibility of self-renewal. In The Uses of Narrative: Explorations in Sociology, Psychology and Cultural Studies (pp. 47–51). Routledge.
Freeman, M. (2008). Beyond Narrative: Dementia’s Tragic Promise. In Health, Illness and Culture (pp. 169–184). Routledge.
Giebel, C., Eastham, C., Cannon, J., Wilson, J., Wilson, J., & Pearson, A. (2020). Evaluating a young-onset dementia service from two sides of the coin: Staff and service user perspectives. BMC Health Services Re-search, 20(1), 187. DOI: https://doi.org/10.1186/s12913-020-5027-8
Greimas, A. J. (1980). Strukturaalista semantiikkaa / Sémantique structural. Gaudemus. Translated into Finnish: Tarasti, E.
Gwyn, R. (2001). Communicating Health and Illness, SAGE Publications, ProQuest Ebook Central. DOI: https://doi.org/10.4135/9781446219553
Halonen, U. (2023). Muistisairaiden omaishoitajat palvelujärjestelmässä. Family carers for people with memory disorders in the service system (includes English summary). University of Jyväskylä. Disserta-tions. http://urn.fi/URN:ISBN:978-951-39-9549-2 [retrieved May 25, 2023]
Hautsalo, K., Pirhonen, J., & Pietilä, I. (2021). Muistisairauteen sopeutumisen tarinatyypit työikäisenä sairastuneilla ja heidän läheisillään. Gerontologia, 35(2), 138–155. DOI: https://doi.org/10.23989/gerontologia.100584
Hillman, A., Jones, I. R., Quinn, C., M Nelis, S., & Clare, L. (2018). Dualities of dementia illness narratives and their role in a narrative economy. Sociology of Health & Illness, 40(5), 874–891. DOI: https://doi.org/10.1111/1467-9566.12729
Hvidsten, L., Engedal, K., Selbæk, G., Wyller, T. B., Šaltytė Benth, J., & Kersten, H. (2019). Quality of life of family carers of persons with young-onset dementia: A Nordic two-year observational multicenter study. PloS One, 14(7). DOI: https://doi.org/10.1371/journal.pone.0219859
Hydén, L.-C., & Nilsson, E. (2015). Couples with dementia: Positioning the “we.” Dementia, 14(6), 716–733. DOI: https://doi.org/10.1177/1471301213506923
Hänninen, V., & Koski-Jännes, A. (2010). Breaking of self-narrative as a means of reorientation? In Hyvarinen, M., Hyden, L-C., Saarenheimo, M. & Tamboukou, M. Beyond Narrative Coherence (pp. 103–119). John Benjamins Publishing Co. DOI: https://doi.org/10.1075/sin.11.07han
Johannessen, A., Engedal, K., Haugen, P. K., Dourado, M. C. N., & Thorsen, K. (2018). “To be, or not to be”: Experiencing deterioration among people with young-onset dementia living alone. International Journal of Qualitative Studies on Health and Well-Being, 13(1). DOI: https://doi.org/10.1080/17482631.2018.1490620
Jolanki, O., Eskola, P., & Aaltonen, M. (2023). People with memory illnesses and their spouses as actors in the hybrid care model. Journal of Family Research, 35, 326–344. DOI: https://doi.org/10.20377/jfr-892
Kalalahti, M., & Varjo, J. (2022). On the Pathway to an Unforeseeable Future: An Actantial Analysis of Ca-reer Designs of Young People. Young, 30(4), 327–343. DOI: https://doi.org/10.1177/11033088211057369
Latour, B. (2007). Reassembling the Social: An Introduction to Actor-Network-Theory (1st edition). Oxford Uni-versity Press.
Lockeridge, S., & Simpson, J. (2013). The experience of caring for a partner with young onset dementia: How younger carers cope. Dementia, 12(5), 635–651. DOI: https://doi.org/10.1177/1471301212440873
Martin, M., Peter-Wight, M., Braun, M., Hornung, R., & Scholz, U. (2009). The 3-phase-model of dyadic adaptation to dementia: Why it might sometimes be better to be worse. European Journal of Ageing, 6(4), 291–301. DOI: https://doi.org/10.1007/s10433-009-0129-5
McLennon, S. M., Habermann, B., & Rice, M. (2011). Finding meaning as a mediator of burden on the health of caregivers of spouses with dementia. Aging & Mental Health, 15(4), 522–530. DOI: https://doi.org/10.1080/13607863.2010.543656
Millenaar, J., de Vugt, M., Bakker, C., van Vliet, D., Pijnenburg, Y., Koopmans, R. & Verhey, F. (2016). The Impact of Young Onset Dementia on Informal Caregivers Compared with Late Onset Dementia: Results from the NeedYD Study. The American Journal of Geriatric Psychiatry, 24(6), 467–474. DOI: https://doi.org/10.1016/j.jagp.2015.07.005
Millenaar, J. K., Bakker, C., van Vliet, D., Koopmans, R. T. C. M., Kurz, A., Verhey, F. R. J., & de Vugt, M. E. (2018). Exploring perspectives of young onset dementia caregivers with high versus low unmet needs. International Journal of Geriatric Psychiatry, 33(2), 340–347. DOI: https://doi.org/10.1002/gps.4749
Møller, J. E., & Brøgger, M. N. (2019). How do residents perceive and narrate stories about communication challenges in patient encounters? A narrative study. BMJ Open, 9(6), e029022. DOI: https://doi.org/10.1136/bmjopen-2019-029022
O'Bryant, S., Waring S., Cullum C., Hall J., Lacritz L., Massman P., Lupo P., Reisch J. & Doody R. (2008). Staging dementia using Clinical Dementia Rating Scale Sum of Boxes scores: a Texas Alzheimer's re-search consortium study. Archives of neurology, 65(8): 1091–1095. DOI: https://doi.org/10.1001/archneur.65.8.1091
Quinn, C., & Toms, G. (2019). Influence of Positive Aspects of Dementia Caregiving on Caregivers’ Well-Being: A Systematic Review. The Gerontologist, 59(5), e584–e596. DOI: https://doi.org/10.1093/geront/gny168
Roach, P., & Drummond, N. (2014). “It’s nice to have something to do”: Early-onset dementia and main-taining purposeful activity. Journal of Psychiatric and Mental Health Nursing, 21(10), 889–895. DOI: https://doi.org/10.1111/jpm.12154
Ryan, B., Martinez Ruiz, A., Rivera-Rodriguez, C., Curtis, M., & Cheung, G. (2021). Sociodemographic and Clinical Characteristics of 1350 Patients With Young Onset Dementia: A Comparison With Older Pa-tients. Alzheimer Disease & Associated Disorders, 35(3), 200–207. DOI: https://doi.org/10.1097/WAD.0000000000000435
Sihto, T. (2018). Distances and proximities of care: Analysing emotio-spatial distances in informal caring. Emotion, Space and Society, 29, 62-68. DOI: https://doi.org/10.1016/j.emospa.2018.10.002
Simpson, C. (2010). Decision-making capacity and informed consent to participate in research by cogni-tively impaired individuals. Applied Nursing Research, 23, 221–226. DOI: https://doi.org/10.1016/j.apnr.2008.09.002
Törrönen, J. (2000). The Passionate Text. The Pending Narrative as a Macrostructure of Persuasion. Social Semiotics, 10(1), 81–98. DOI: https://doi.org/10.1080/103503300114568
Törrönen, J. (2014). Situational, Cultural and Societal Identities: Analysing Subject Positions as Classifica-tions, Participant Roles, Viewpoints and Interactive Positions. Journal for the Theory of Social Behaviour, 44(1), 80–98. DOI: https://doi.org/10.1111/jtsb.12029
Törrönen, J. (2021). Covid-19 as a Generator of Pending Narratives: Developing an Empirical Tool to Ana-lyze Narrative Practices in Constructing Futures. International Journal of Qualitative Methods, 20, 1–10. DOI: https://doi.org/10.1177/1609406921996855
Wawrziczny, E., Antoine, P., Ducharme, F., Kergoat, M.-J., & Pasquier, F. (2016). Couples’ experiences with early-onset dementia: An interpretative phenomenological analysis of dyadic dynamics. Dementia, 15(5), 1082–1099. DOI: https://doi.org/10.1177/1471301214554720
Werner, P., Shpigelman, C.-N., & Raviv Turgeman, L. (2020). Family caregivers’ and professionals’ stigmat-ic experiences with persons with early-onset dementia: A qualitative study. Scandinavian Journal of Car-ing Sciences, 34(1), 52–61. DOI: https://doi.org/10.1111/scs.12704
Williams, G. (1984). The genesis of chronic illness: Narrative re-construction. Sociology of Health & Illness, 6(2), 175–200. DOI: https://doi.org/10.1111/1467-9566.ep10778250
World Alzheimer Report 2022: Life after diagnosis: Navigating treatment, care and support. (2022). https://www.alzint.org/resource/world-alzheimer-report-2022/ [April 28, 2023]
