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Lived experiences of maintaining self-identity among persons living with young-onset dementia: A qualitative meta-synthesis.

Publication ,  Journal Article
Tang, X; Wang, J; Wu, B; Navarra, A-M; Cui, X; Wang, J
Published in: Dementia (London, England)
November 2023

The self-identity of persons with young-onset dementia (YOD) is affected by the disease progression. However, the lived experience of maintaining self-identity along the disease trajectory is understudied. This meta-synthesis integrated qualitative data on the challenges, coping strategies, and needs of persons living with YOD and how their experiences affected their self-identity over time.Four English (PubMed, Scopus, CINAHL, PsycINFO) and two Chinese (CNKI and Wanfang) electronic databases were searched for published literature peer-reviewed from the time of database inception to 2022. We used thematic analysis to extract and synthesize data from the literature concerning the long-term lived experiences of persons living with YOD.A total of five peer-reviewed publications were eligible for inclusion in this meta-synthesis study. We identified four themes: (1) declining cognitive function and a prolonged diagnostic process threaten the self-identity of persons living with YOD, (2) struggling to accept the diagnosis of YOD and maintain self-identity, (3) maintaining self-identity and the normalcy of life through social support and person-centered care, and (4) living with YOD through self-development and self-identity reshaping at a later stage of the disease.Persons living with YOD experience challenges maintaining their self-identity throughout the disease trajectory. These challenges are affected by their cognitive function, experiences of personal and social stigma associated with the disease, perceived social support, and person-centered care. Study findings have implications for developing tailored supportive programs for persons living with YOD at various stages of the disease trajectory.

Duke Scholars

Published In

Dementia (London, England)

DOI

EISSN

1741-2684

ISSN

1471-3012

Publication Date

November 2023

Volume

22

Issue

8

Start / End Page

1776 / 1798

Related Subject Headings

  • Social Support
  • Humans
  • Geriatrics
  • Dementia
  • Cognition
  • Age of Onset
  • Adaptation, Psychological
  • 4205 Nursing
  • 4203 Health services and systems
  • 1702 Cognitive Sciences
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Tang, X., Wang, J., Wu, B., Navarra, A.-M., & Cui, X. (2023). Lived experiences of maintaining self-identity among persons living with young-onset dementia: A qualitative meta-synthesis. Dementia (London, England), 22(8), 1776–1798. https://doi.org/10.1177/14713012231193547
Tang, Xueting, Junqiao Wang, Bei Wu, Ann-Margaret Navarra, Xiaoyan Cui, and Jing Wang. “Lived experiences of maintaining self-identity among persons living with young-onset dementia: A qualitative meta-synthesis.Dementia (London, England) 22, no. 8 (November 2023): 1776–98. https://doi.org/10.1177/14713012231193547.
Tang X, Wang J, Wu B, Navarra A-M, Cui X. Lived experiences of maintaining self-identity among persons living with young-onset dementia: A qualitative meta-synthesis. Dementia (London, England). 2023 Nov;22(8):1776–98.
Tang, Xueting, et al. “Lived experiences of maintaining self-identity among persons living with young-onset dementia: A qualitative meta-synthesis.Dementia (London, England), vol. 22, no. 8, Nov. 2023, pp. 1776–98. Epmc, doi:10.1177/14713012231193547.
Tang X, Wang J, Wu B, Navarra A-M, Cui X. Lived experiences of maintaining self-identity among persons living with young-onset dementia: A qualitative meta-synthesis. Dementia (London, England). 2023 Nov;22(8):1776–1798.
Journal cover image

Published In

Dementia (London, England)

DOI

EISSN

1741-2684

ISSN

1471-3012

Publication Date

November 2023

Volume

22

Issue

8

Start / End Page

1776 / 1798

Related Subject Headings

  • Social Support
  • Humans
  • Geriatrics
  • Dementia
  • Cognition
  • Age of Onset
  • Adaptation, Psychological
  • 4205 Nursing
  • 4203 Health services and systems
  • 1702 Cognitive Sciences