“Sometimes it feels like thinking in syrup” – the experience of losing sense of self in those with young onset dementia

References

• Atkins, K. (2006). Autonomy and autonomy competencies: A practical and relational approach. Nursing Philosophy : An International Journal for Healthcare Professionals, 7(4), 205–11.
   Google Scholar
• Attia, M., & Edge, J. (2017). Be(com)ing a reflexive researcher: A developmental approach to research methodology. Open Review of Educational Research,4(1), 33–45. doi:10.1080/23265507.2017.1300068
   Google Scholar
• Benbow, S. M., & Kingston, P. (2016). ‘Talking about my experiences … at times disturbing yet positive’: Producing narratives with people living with dementia. Dementia, 15(5), 1034–1052.
   PubMedGoogle Scholar
• Benzein, E., Olin, C., & Persson, C. (2015). “You put it all together” - families’ evaluation of participating in family health conversations. Scandinavian Journal of Caring Sciences, 29(1), 136–144.
   Web of Science ®Google Scholar
• Braun, V., Clarke, V., Hayfield, N., & Terry, G. (2018). Thematic analysis. In P. Liamputtong (Ed.), Handbook of research methods in health social sciences (1st ed. pp. 843–860). Singapore: Springer Singapore. doi:10.1007/978-981-10-5251-4_103
   Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. doi:10.1191/1478088706qp063oa
   Google Scholar
• Buber, M. (1997). Jeg og du. Hans Reitzel, Denmark.
   Google Scholar
• Busted, L. M., Nielsen, D., & Birkelund, R. (2019). The experience of being in the family of a person with early-stage dementia  – a qualitative interview study. European Journal for Person Centered Healthcare, 7(1):145–154.
   Google Scholar
• Cabote, C. J., Bramble, M., & McCann, D. (2015). Family caregivers’ experiences of caring for a relative with younger onset dementia. Journal of Family Nursing, 21(3), 443–468.
   PubMed Web of Science ®Google Scholar
• Clemerson, G., Walsh, S., & Isaac, C. (2014). Towards living well with young onset dementia: An exploration of coping from the perspective of those diagnosed. Dementia, 13(4), 451–466.
   PubMedGoogle Scholar
• Draper, B., & Withall, A. (2016). Young onset dementia. Internal Medicine Journal, 46(7), 779–786.
   PubMed Web of Science ®Google Scholar
• Evans, D. (2019). An exploration of the impact of younger-onset dementia on employment. Dementia, 18(1), 262–281.
   PubMedGoogle Scholar
• Fukui, T., Yamazaki, T., & Kinno, R. (2011). Can the ‘head-turning sign’ be a clinical marker of Alzheimer’s disease? Dementia and Geriatric Cognitive Disorders Extra, 1(1), 310–317.
   Google Scholar
• Gjødsbøl, I. M., & Svendsen, M. N. (2018). Recognizing dementia: Constructing deconstruction in a Danish memory clinic. Medical Anthropology Quarterly, 32(1), 103–119.
   Web of Science ®Google Scholar
• Greenwood, N., & Smith, R. (2016). The experiences of people with young-onset dementia: A meta-ethnographic review of the qualitative literature. Maturitas, 92, 102–109.
   PubMed Web of Science ®Google Scholar
• Harris, P. B., & Keady, J. (2009). Selfhood in younger onset dementia: Transitions and testimonies. Aging and Mental Health, 13(3), 437–444.
   PubMed Web of Science ®Google Scholar
• Heggestad, A. K. T., Nortvedt, P., & Slettebø, Å. (2013). The importance of moral sensitivity when including persons with dementia in qualitative research. Nursing Ethics, 20(1), 30–40.
   PubMed Web of Science ®Google Scholar
• Johannessen, A., & Möller, A. (2013). Experiences of persons with early-onset dementia in everyday life: A qualitative study. Dementia, 12(4), 410–424.
   PubMedGoogle Scholar
• Jørgensen, K. (2019). Hvor hyppig er demens blandt yngre? Retrieved from http://www.videnscenterfordemens.dk/forskning/forskningsnyheder/2019/06/hvor-hyppig-er-demens-blandt-yngre/
   Google Scholar
• Kristiansen, P. J. L., Normann, H. K., Norberg, A., Fjelltun, A.-M., & Skaalvik, M. W. (2017). How do people in the early stage of Alzheimer’s disease see their future? Dementia, 16(2), 145–157.
   PubMedGoogle Scholar
• Kvale, S., & Brinkmann, S. (2015). Interview - Det kvalitative forskningsinterview som håndværk (3rd ed.). Copenhagen: Hans Reitzels Forlag.
   Google Scholar
• Kvello-Alme, M., Bråthen, G., White, L. R., & Sando, S. B. (2019). The prevalence and subtypes of young onset dementia in Central Norway: A population-based study. Journal of Alzheimer’s Disease, 69(2), 479–487.
   PubMed Web of Science ®Google Scholar
• Lyon, D. (1995). The electronic eye: The rise of the surveillance society. Wiley Blackwell (Vol. 24). Minneapolis: University of Minnesota Press. doi:10.2307/2077688
   Google Scholar
• Malterud, K., Siersma, V. D., & Guassora, A. D. (2016). Sample size in qualitative interview studies: Guided by information power. Qualitative Health Research, 26(13), 1753–1760.
   PubMed Web of Science ®Google Scholar
• Mazaheri, M., Eriksson, L. E., Heikkilä, K., Nasrabadi, A. N., Ekman, S. L., & Sunvisson, H. (2013). Experiences of living with dementia: Qualitative content analysis of semi-structured interviews. Journal of Clinical Nursing, 22(21–22), 3032–3041.
   PubMed Web of Science ®Google Scholar
• McKeown, J., Clarke, A., Ingleton, C., & Repper, J. (2010). Actively involving people with dementia in qualitative research. Journal of Clinical Nursing, 19(13–14), 1935–1943.
   PubMed Web of Science ®Google Scholar
• Monforte-Royo, C., Villavicencio-Chávez, C., Tomás-Sábado, J., Mahtani-Chugani, V., & Balaguer, A. (2012). What lies behind the wish to hasten death? A systematic review and meta-ethnography from the perspective of patients. PLoS One, 7(5), e37117.
   PubMed Web of Science ®Google Scholar
• Moser, A., & Korstjens, I. (2018, January 4). Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. European Journal of General Practice, 24, 9–18.
   PubMed Web of Science ®Google Scholar
• Olsson, A., Engström, M., Skovdahl, K., & Lampic, C. (2012). My, your and our needs for safety and security: Relatives’ reflections on using information and communication technology in dementia care. Scandinavian Journal of Caring Sciences, 26(1), 104–112.
   PubMed Web of Science ®Google Scholar
• Pesonen, H. M., Remes, A. M., & Isola, A. (2011). Ethical aspects of researching subjective experiences in early-stage dementia. Nursing Ethics, 18(5), 651–661.
   PubMed Web of Science ®Google Scholar
• Phillippi, J., & Lauderdale, J. (2018). A guide to field notes for qualitative research: Context and conversation. Qualitative Health Research, 28(3), 381–388.
   PubMed Web of Science ®Google Scholar
• Prince, M., Wimo, A., Gherchet, M., Ali, G., Wu, Y., & Prina, M. (2015). World Alzheimer report 2015: The global impact of Dementia | Alzheimer’s disease international. London. Retrieved from https://www.alz.co.uk/research/world-report-2015
   Google Scholar
• Read, S. T., Toye, C., & Wynaden, D. (2017). Experiences and expectations of living with dementia: A qualitative study. Collegian, 24(5), 427–432.
   Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M., & Warren, J. D. (2010, August 1). The diagnosis of young-onset dementia. The Lancet Neurology, 9, 793–806. Elsevier.
   PubMed Web of Science ®Google Scholar
• Spreadbury, J. H., & Kipps, C. (2019). Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers. Dementia, 18(2), 579–598.
   PubMedGoogle Scholar
• Spreadbury, J. H., & Kipps, C. M. (2018). Understanding important issues in young-onset dementia care: The perspective of healthcare professionals. Neurodegenerative Disease Management, 8(1), 37–47.
   PubMed Web of Science ®Google Scholar
• Steeman, E., De Casterlé, B. D., Godderis, J., & Grypdonck, M. (2006, June). Living with early-stage dementia: A review of qualitative studies. Journal of Advanced Nursing, 54, 722–738.
   PubMed Web of Science ®Google Scholar
• Svanberg, E., Spector, A., & Stott, J. (2011, April 25). The impact of young onset dementia on the family: A literature review. International Psychogeriatrics, 23, 356–371. Cambridge University Press.
   PubMed Web of Science ®Google Scholar
• Van Vliet, D., Persoon, A., Bakker, C., Koopmans, R. T. C. M., De Vugt, M. E., Bielderman, A., & Gerritsen, D. L. (2017). Feeling useful and engaged in daily life: Exploring the experiences of people with young-onset dementia. International Psychogeriatrics, 29(11), 1889–1898.
   PubMed Web of Science ®Google Scholar
• Vieira, R. T. (2013). Epidemiology of early-onset dementia: A review of the literature. Clinical Practice & Epidemiology in Mental Health, 9(1), 88–95.
   Google Scholar
• 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.
   PubMedGoogle Scholar