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Empirical Studies

Living with a person with young onset dementia – spousal experience

ORCID Icon, &
Article: 2330233 | Received 26 Apr 2023, Accepted 11 Mar 2024, Published online: 17 Mar 2024

References

  • Alzheimer’s Disease International (ADI). (2014). World Alzheimer report 2014. Dementia and risk reduction – An analysis of protective and modifiable factors. https://www.alzint.org/u/WorldAlzheimerReport2014.pdf
  • American Psychological Association. (n.d.). APA dictionary of psychology. Resilience. https://dictionary.apa.org/resilience
  • Anantapong, K., Davis, N., & Sampson, E. L. (2022). Communication between multidisciplinary team and families regarding nutrition and hydration for people with severe dementia in acute hospitals: A qualitative study. Age and Ageing, 51(11), 1–13. https://doi.org/10.1093/ageing/afac230
  • Bannon, S., Reichman, M., Popok, P., Wagner, J., Gates, M., Uppal, S., LeFeber, L., Wong, B., Dickerson, B., & Vranceanu, A.-M. (2020). In it together: A qualitative meta-synthesis of common and unique psychosocial stressors and adaptive coping strategies of persons with young-onset dementia and their caregivers. Gerontologist, 62(2), 123–139. https://doi.org/10.1093/geront/gnaa169
  • Binford, S., Wallhagen, M. I., & Leutwyler, H. (2023). Role identity transition: A conceptual framework for being the spouse of a person with early onset dementia. Journal of Gerontological Nursing, 49(8), 27–34. https://doi.org/10.3928/00989134-20230707-03
  • Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217–228. https://doi.org/10.31887/DCNS.2009.11.2/hbrodaty
  • Cations, M., Withall, C. M., Horsfall, R., Denham, N., White, F., Trollor, J., Loy, C., Brodaty, H., Sachdev, P., Gonski, P., Demirkol, A., Cumming, R G., & Draper, B. (2017). Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study. PLoS One, 12(7), 1–15. https://doi.org/10.1371/journal.pone.0180935
  • Doyle, L., McCabe, C., Koegh, B., Brady, A., & McCann, M. (2020). An overview of the qualitative descriptive design within nursing research. Journal of Research in Nursing, 25(5), 443–455. https://doi.org/10.1177/1744987119880234
  • Draper, B., & Withall, A. (2015). Young onset dementia. International Medicine Journal, 46(7), 779–786. https://doi.org/10.1111/imj.13099
  • Granheim, U. H., Lindgren, B.-M., & Lundman, B. (2017). Methodological challenges in qualitative content analysis: A discussion paper. Nurse Education Today, 56, 29–34. https://doi.org/10.1016/j.nedt.2017.06.002
  • Granheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112. https://doi.org/10.1016/j.nedt.2003.10.001
  • Greenwood, N., Pound, C., Brearley, S., & Smith, R. (2019). A qualitative study of older informal carers’ experience and perception of their caring role. Maturitas, 124, 1–7. https://doi.org/10.1016/j.maturitas.2019.03.006
  • Grunberg, V. A., Bannon, S. M., Reichman, M., Popok, P. J., & Vranceanu, A.-M. (2022). Psychosocial treatment preferences of persons living with young-onset dementia and their partners. Dementia, 21(1), 41–60. https://doi.org/10.1177/14713012211027007
  • Hatfield, E., Utne, M. K., & Traupmann, J. (1979). Equity theory and intimate relationships. In R. L. Burgess & T. L. Huston (Eds.), Social exchange in developing relationships (pp. 99–132). Academic Press Inc.
  • Hendriks, S., Peetoom, K., Bakker, C., van der Flier, W. M., Papma, J. M., Koopmans, R., Verhey, F. R. J., de Vugt, M., Köhler, S. (2021). Global prevalence of young-onset dementia. JAMA Neurology, 78(9), 1–11. https://doi.org/10.1001/jamaneurol.2021.2161
  • Holthe, T., Jentoft, R., Arntzen, C., & Thorsen, K. (2017). Benefits and burdens: Family caregivers’ experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD). Disability and Rehabilitation: Assistive Technology. https://www.tandfonline.com/doi/abs/10.1080/17483107.2017.1373151?journalCode=iidt20
  • Hoppe, S. (2019). Shifting uncertainties in the pre-diagnostic trajectory of early-onset dementia. Dementia, 18(2), 613–629. https://doi.org/10.1177/1471301216687436
  • Johannessen, A., & Möller, A. (2011). Experiences of persons with early-onset dementia in everyday life: A qualitative study. Dementia, 12(4), 410–424. https://doi.org/10.1177/1471301211430647
  • Kaiser, S., & Panegyres, P. (2007). The psychosocial impact of young onset dementia on spouses. American Journal of Alzheimer’s Disease & Other Dementias, 21(6), 398–402. https://doi.org/10.1177/1533317506293259
  • Kilty, C., Cahill, S., Foley, T., & Fox, S. (2023). Young onset dementia: Implications for employment and finances. Dementia, 22(1), 68–84. https://doi.org/10.1177/14713012221132374
  • Kimura, N. R. S., Simoes Neto, J. P., Santos, R. L., Rourinho Baprista, M. A., Porugal, G., Johannessen, A., Barca, M. L., Engedal, K., Laks, J., Marinho Rodrigues, V., & Dourado, M. C. N. (2019). Resilience in carers of people with young-onset Alzheimer disease. Journal of Geriatric Psychiatry and Neurology, 32(2), 59–67. https://doi.org/10.1177/0891988718824039
  • Kobiske, K. R., & Bekhet, A. K. (2018). Resilience in caregivers of partners with young onset dementia: A concept analysis. Geropsychological Nursing, 39(5), 411–419. https://doi.org/10.1080/01612840.2017.1400625
  • Koedam, E. L. G. E., Lauffer, V., Van der Vlies, A. E., Van der Flier, W. M., Scheltens, P., & Pinjnenburg, Y. A. L. (2010). Early- versus late-onset Alzheimer’s disease: More than age alone. Journal of Alzheimer’s Disease, 19(4), 1401–1408. https://doi.org/10.3233/JAD-2010-1337
  • Larochette, C., Wawrziczny, E., Papo, D., Pasquier, F., & Antoine, P. (2020). An acceptance, role transition, and couple dynamics-based program for caregivers: A qualitative study of the experience of spouses of persons with young-onset dementia. Dementia, 19(8), 2714–2731. https://doi.org/10.1177/1471301219854643
  • Leggett, A. N., Choi, H., Chopik, W. J., Liu, H., & Gonzalez, R. (2020). Early cognitive decline and its impact on spouse’s loneliness. Research in Human Development, 17(1), 78–93. https://doi.org/10.1080/15427609.2020.1750293
  • Lester, J. N., & O’Reilly, M. (2021). Introduction to special issues quality in qualitative approaches: Celebrating heterogeneity. Qualitative Research in Psychology, 18(3), 295–304. https://doi.org/10.1080/14780887.2021.1931734
  • Lincoln, Y. S., & Guba, E. (1985). Naturalistic inquiry. Sage Publications.
  • Lindauer, A., & Harvath, T. A. (2014). Pre-death grief in the context of dementia caregiving: A concept analysis. Journal of Advanced Nursing, 70(10), 2196–2207. https://doi.org/10.1111/jan.12411
  • Mendez, M. F. (2006). The accurate diagnosis of early-onset dementia. The International Journal of Psychiatry in Medicine, 36(4), 401–412. https://doi.org/10.2190/Q6J4-R143-P630-KW41
  • Millenaar, J. K., Bakker, C., Koopmans, R. T. C. M., Verhey, F. R. J., Kurz, A., & de Vugt, M. E. (2016). The care needs and experiences with the use of services of people with young-onset dementia and their family caregivers: A systematic review. International Journal of Geriatric Psychiatry, 31(12), 1261–1276. https://doi.org/10.1002/gps.4502
  • Molloy, D. W., Alemaychu, E., & Roberts, R. (1991). Reliability of standardized mini-mental state examination compared with traditional mini-mental state examination. American Journal of Psychiatry, 148, 102–105. https://doi.org/10.1176/ajp.148.1.102
  • The National Board of Health and Welfare. (2017). National guidelines for dementia care (nationella riktlinjer för vård och omsorg vid demenssjukdom). https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/nationella-riktlinjer/2017-12-2.pdf
  • The National Board of Health and Welfare. (2021). Family caring or supporting somebody close (anhöriga som vårdar eller stödjer någon de står nära). https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/ovrigt/2021-6-7464.pdf
  • Pang, R. C. K., & Lee, D. T. (2019). Finding positives in caregiving: The unique experience of Chinese spousal caregivers of persons with young-onset dementia. Dementia, 18(5), 1615–1628. https://doi.org/10.1177/1471301217724026
  • Polit, F. D., & Beck, C. T. (2018). Essentials of nursing research appraising evidence for nursing practice (19th ed.). Wolters Kluwer.
  • Roach, P., & Drummond, N. (2014). ‘It’s nice to have something to do’: Early-onset dementia and maintaining purposeful activity. Journal of Psychiatric and Mental Health Nursing, 21(10), 889–895. https://doi.org/10.1111/jpm.12154
  • SFS 2009:549. Socialtjänstlag. Kommunens Ansvar. https://www.riksdagen.se/sv/dokument-lagar/dokument/svensk-forfattningssamling/socialtjanstlag-2001453_sfs-2001-453#K2
  • Spreadbury, J. H., & Kipps, C. (2019). Measuring young onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers. Dementia, 18(2), 579–598. https://doi.org/10.1177/1471301216684401
  • Stamou, V., La Fontaine, J., Gage, H., Jones, B., Williams, P., O’Malley, M., Parkes, J., Carter, J., & Oyebode, J. (2020). Services for people with young onset dementia: The ‘Angela’ project national UK survey of service use and satisfaction. International Journal of Geriatric Psychiatry, 36(3), 411–422. https://doi.org/10.1002/gps.5437
  • Vliet, D., Vugt, M. E., Bakker, C., Koopmans, R. T. C. M., & Verhaey, F. R. J. (2010). Impact of early onset dementia on caregivers: A review. International Journal of Geriatric Psychiatry, 25(11), 1091–1100. https://doi.org/10.1002/gps.2439
  • 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. https://doi.org/10.1177/1471301214554720
  • Wawrziczny, E., Pasquier, F., Ducharme, F., Kergoat, M.-J., & Antoine, P. (2017). Do spouse caregivers of young and older persons with dementia have different needs? A comparative study. Psychogeriatrics, 17(5), 282–291. https://doi.org/10.1111/psyg.12234
  • Williams, C., Newman, D., & Hammar Marmstål, L. (2017). Preliminary psychometric properties of the verbal and nonverbal interaction observational measure for communication in persons with dementia. Issues in Mental Health Nursing, 38(5), 381–390. https://doi.org/10.1080/01612840.2017.1279248
  • Williams, C., Newman, D., & Hammar Marmstål, L. (2018). Preliminary study of a communication intervention for family caregivers and spouses with dementia. International Journal of Geriatric Psychiatry, 33(2), 343–349. https://doi.org/10.1002/gps.4816
  • World Alzheimer Report. (2022, September 21). Life after diagnosis: Navigating treatment, care and support. https://www.alzint.org/resource/world-alzheimer-report-2022/
  • World Health Organization. (2012). Dementia: A Public Health Priority. Retrieved September 29, 2023 http:///C:/Users/tanhak/Downloads/9789241564458_eng.pdf
  • World Health Organization. (2022). Dementia. https://www.who.int/news-room/fact-sheets/detail/dementia
  • World Health Organization. (2023). Dementia. https://www.who.int/news-room/fact-sheets/detail/dementia