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Navigating dementia care: a systematic review of young and young adult carers′ needs and support solutions

  • Ki Tong
  • , Jodi Emma Wainwright
  • , Joanna Horne
  • , Kerry Jones
  • , Klara Dadova
  • , Elena Alder
  • , Agnes Leu
  • , Louise Birkett-Swan
  • , Jitka Vseteckova
  • Open University Milton Keynes
  • Charles University
  • Kalaidos University of Applied Sciences
  • University of Basel
  • Northamptonshire Healthcare NHS Foundation Trust

Research output: Contribution to journalReview articlepeer-review

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Abstract

Objectives: This systematic review aimed to explore the available support and identify the unique needs of young and young adult carers of individuals with dementia. Method: A systematic review following PRISMA guidelines was conducted. Electronic databases, including PubMed, Web of Science, PsycINFO, CINAHL, and Ovid, along with Google Scholar for grey literature, were searched. A narrative synthesis approach was used to analyse the findings of the included studies. The quality of the articles was assessed using the Mixed Methods Appraisal Tool (MMAT). Results: Seven studies met the predefined inclusion criteria and were included in the narrative synthesis. Findings revealed that young and young adult carers often lack knowledge of available support services and face challenges navigating the healthcare system. Caregiving responsibilities were found to hinder educational and career aspirations, leading to social isolation and strained relationships. The support received from family, friends, and teachers was often inconsistent and inadequate. A significant finding was the lack of differentiation between young and young adult carers in the existing research, despite their distinct social care support needs. Conclusion: The limited research highlights a critical gap in the literature regarding the support and needs of young and young adult carers of people with dementia. The lack of distinction between these two groups, who receive different social care support, emphasises the need for further research to better understand their unique experiences. There is an urgent need for targeted education and support programmes that address the distinct developmental needs and challenges of this population, promoting their well-being and safeguarding their personal and educational aspirations.

Original languageEnglish
Pages (from-to)230-243
Number of pages14
JournalAging and Mental Health
Volume30
Issue number2
DOIs
Publication statusPublished - 1 Oct 2025

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

  1. SDG 3 - Good Health and Well-being
    SDG 3 Good Health and Well-being

Keywords

  • Alzheimer’s
  • Cognitive impairment
  • education
  • support services
  • young caregivers
  • young carers

ASJC Scopus subject areas

  • Psychiatric Mental Health
  • Gerontology
  • Geriatrics and Gerontology
  • Psychiatry and Mental Health

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