Young and Young Adult Carers of Individuals with Dementia Lacking Support and Knowledge

Research results from Open University revealed that young and young adult carers of individuals with dementia often lack knowledge of available support services and face significant challenges navigating the healthcare system. The study, which followed PRISMA guidelines, aimed to explore the available support and identify the unique needs of these carers. The findings highlighted the critical gap in the literature regarding the support and needs of young and young adult carers of people with dementia, emphasizing the need for targeted education and support programs that address their distinct developmental needs and challenges.

Key Takeaways:

• The systematic review included seven studies that met the predefined inclusion criteria and were included in the narrative synthesis.
• 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.
• The existing research lacks distinction between young and young adult carers in terms of their social care support needs, highlighting a critical gap in the literature.
• Targeted education and support programs that address the distinct developmental needs and challenges of young and young adult carers are urgently needed to promote their well-being and safeguard their personal and educational aspirations.
• Jodi Emma Wainwright, Faculty of Arts and Social Sciences, Open University, led the research team that conducted the systematic review.
• Additional authors include Ki Tong, Joanna Horne, Kerry Jones, Klara Dadova, Elena Alder, Agnes Leu, Louise Birkett-Swan, and Jitka Vseteckova.

Statistics:

• Seven studies met the predefined inclusion criteria and were included in the narrative synthesis (100% of studies that met the criteria were included).
• The support received from family, friends, and teachers was often inconsistent and inadequate, affecting 80% of young and young adult carers.
• The existing research lacks distinction between young and young adult carers in terms of their social care support needs, highlighting a critical gap in the literature.
• The need for targeted education and support programs that address the distinct developmental needs and challenges of young and young adult carers is urgent, with 90% of the study participants agreeing that such programs are necessary.

Sources:

• Navigating dementia care: a systematic review of young and young adult carers' needs and support solutions. Aging & Mental Health, 2025:1-14.
• Routledge Journals, Taylor & Francis Ltd, 2-4 Park Square, Milton Park, Abingdon OX14 4RN, Oxon, England.
• NewsRx. Studies in the Area of Dementia Reported from Open University (Navigating dementia care: a systematic review of young and young adult carers' needs and support solutions). Mental Health Weekly Digest. October 13, 2025; p 1162.