Health expectations : an international journal of public participation in health care and health policy · 2026
The Experience of Stigma Within the Young Onset Dementia (YOD) Population: A Systematic Review of Qualitative Research.
СтатьяСистематический обзорПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
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Lowe Fiona, Hanna Kerry, Evans Sarah, Tahir Naheed, Giebel Clarissa
Аннотация
INTRODUCTION: People with Young Onset Dementia (YOD) are recognised as having a higher risk of being marginalised within society and in the care and support they receive. The consequences of stigma on people with YOD must be better understood to help reduce experiences of discrimination and increase awareness for this population. This qualitative systematic review aimed to synthesis the data on the experience of stigma within the YOD population globally.
METHODS: Five electronic databases (Scopus, MEDLINE, PubMed, Web of Science, and PsycINFO) were searched in December 2025. The quality of the studies was assessed using the Critical Appraisal Skills Programme Tool. Data were analysed using thematic synthesis. One researcher assessed the title and abstracts of the articles retrieved against the inclusion criteria. Included articles were then read in full by the same researcher. A second researcher reviewed 10% of these articles at both stages.
RESULTS: 2994 articles were screened, and 17 studies were included in this review. Four themes were identified: Public perception and beliefs about YOD, Structural stigma and barriers to service access, The role of stigma in social isolation, and Overcoming stigma.
DISCUSSION: This review highlights the pervasive and multifaceted nature of YOD, offering insights into individual and service level strategies needed to mitigate the negative consequences of stigma. The findings highlight the need for specialist age-appropriate support services alongside public and professional education on YOD to address misconceptions about dementia in younger adults. Community and government-led initiatives are recommended to help reduce negative stereotypes, social isolation and improve access to early diagnosis and tailored support for our YOD communities.
PATIENT AND PUBLIC INVOLVEMENT: Not applicable.
METHODS: Five electronic databases (Scopus, MEDLINE, PubMed, Web of Science, and PsycINFO) were searched in December 2025. The quality of the studies was assessed using the Critical Appraisal Skills Programme Tool. Data were analysed using thematic synthesis. One researcher assessed the title and abstracts of the articles retrieved against the inclusion criteria. Included articles were then read in full by the same researcher. A second researcher reviewed 10% of these articles at both stages.
RESULTS: 2994 articles were screened, and 17 studies were included in this review. Four themes were identified: Public perception and beliefs about YOD, Structural stigma and barriers to service access, The role of stigma in social isolation, and Overcoming stigma.
DISCUSSION: This review highlights the pervasive and multifaceted nature of YOD, offering insights into individual and service level strategies needed to mitigate the negative consequences of stigma. The findings highlight the need for specialist age-appropriate support services alongside public and professional education on YOD to address misconceptions about dementia in younger adults. Community and government-led initiatives are recommended to help reduce negative stereotypes, social isolation and improve access to early diagnosis and tailored support for our YOD communities.
PATIENT AND PUBLIC INVOLVEMENT: Not applicable.