Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2020 Dec;15(1):1734277.
doi: 10.1080/17482631.2020.1734277.

" Sometimes it feels like thinking in syrup" - the experience of losing sense of self in those with young onset dementia

Laila Mohrsen Busted  1   2 , Dorthe S Nielsen  2   3 , Regner Birkelund  1   4
Affiliations

" Sometimes it feels like thinking in syrup" - the experience of losing sense of self in those with young onset dementia

Laila Mohrsen Busted et al. Int J Qual Stud Health Well-being. 2020 Dec.

Abstract

Purpose: To explore and describe the experience of people having young-onset dementia.Methods: This was a qualitative study that used semi-structured interviews to collect data from nine persons with young-onset dementia (aged 47-65; five men and four women). Data were collected in the spring of 2018. All interviews were conducted at the participants' choice and in their own homes by one interviewer. The collected data were analysed using the six-stage process of reflexive thematic analysis model.Results: The analysis revealed three themes: Dementia causing loss of control over oneself; becoming a burden to the family while sense of self disappears; and fearing a humiliating future.Conclusions: The experience of having and living with young onset dementia affected the persons' thoughts and memory and was experienced through the persons' loss of personality and sense of self. Thoughts about the future were associated with fear, and the risk of changing their personalities to something different from the one which they had experienced as humiliating throughout most of their lives.

Keywords: Young onset dementia; qualitative research; reflexive; semi-structured interview; thematic analysis.

PubMed Disclaimer

Conflict of interest statement

No potential conflict of interest was reported by the author(s).

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Atkins, K. (2006). Autonomy and autonomy competencies: A practical and relational approach. Nursing Philosophy : An International Journal for Healthcare Professionals, 7(4), 205–11. - PubMed
    1. 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 - DOI
    1. 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. - PubMed
    1. 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. - PubMed
    1. Braun, V., Clarke, V., Hayfield, N., & Terry, G. (2018). Thematic analysis. In Liamputtong P. (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 - DOI