ArticleJournal of Alzheimer's disease : JAD2024
Navigating the Journey of Living with Young-Onset Dementia: Experiences of Spousal Caregivers.
Article in Journal of Alzheimer's disease : JAD, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
4 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The Experience of Stigma Within the Young Onset Dementia (YOD) Population: A Systematic Review of Qualitative Research.Health expectations : an international journal of public participation in health care and health policy · 2026Pooled it
- A Systematic Review of the Needs of Children and Young People of a Parent Diagnosed With Young-Onset-Dementia: Informing a Nursing Intervention.Journal of advanced nursing · 2026Pooled it
- One of the Many Things That I've Learned on This Journey…: A Co-operative, Narrative Inquiry With Two Care Partners of Spouses With Young Onset Dementia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- The patient journey for people with dementia and their carers in Peru: From first symptoms to diagnosis and treatment.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: Young-onset dementia (YOD) refers to dementia occurring before the age of 65, with Alzheimer's disease being the most common form, posing distinct challenges for spousal caregivers. Objective: This study aims to investigate the unique experiences of spousal caregivers of persons with YOD in China, where dementia-specific community care services and primary healthcare professionals are relatively lacking, in order to inform the tailored support services development. Methods: This qualitative-design study utilized semi-structured interviews with 11 spousal caregivers of persons with YOD dwelling in the community. Traditional content analysis was employed to analyze the interview data. Results: Limited dementia-specific healthcare professionals and low public awareness made diagnosing and accepting YOD a prolonged and challenging journey. Spousal caregivers faced skepticism when seeking diagnosis, exacerbating their burden and emotional stress. Disparities in healthcare professionals and insufficient collaboration between institutions worsened the situation. YOD significantly impacted family dynamics and led to changes in emotional communication within the family. The stigma surrounding YOD raised concerns among spousal caregivers about their children's future in marriage and career, emphasizing genetic risks. Conclusions: In settings where dementia-specific community care services and primary healthcare professionals are limited and unevenly distributed, integrating support services at both the primary and community levels is crucial for families dealing with YOD in the community. Additionally, raising public awareness about YOD can foster a more understanding and supportive environment, addressing challenges related to stigma faced by affected families, contributing to increased investment in supporting resources, and encouraging individuals to seek help early on.
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Registered trials
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