A Systematic Review of the Needs of Children and Young People of a Parent Diagnosed With Young-Onset-Dementia: Informing a Nursing Intervention.

Abstract

AIM The aim of this study was to understand the needs of children and young people of a parent with young-onset dementia, to inform the development of a nursing model. BACKGROUND Children and young people of a parent diagnosed with young onset dementia have a range of needs that are subject to change and aligned to their stage of development and growth. DESIGN Systematic review. DATA SOURCES Searches were conducted in PsycInfo (1806-Jan 2025), Medline (1996-Jan 2025) and CINAHL (1961-Jan 2025); search terms were developed in consultation with an academic librarian. REVIEW METHODS The Preferred Reporting Items for Systematic reviews and Meta-Analyses was used to assess the trustworthiness and applicability of the findings and the Mixed Methods Assessment Tool to assess quality. The review protocol was registered on PROSPERO (CRD42024534104). Needs identified from the literature were matched with the activities and interventions of a specialist nursing model. RESULTS Searches yielded 223 records of which 17 met the inclusion/exclusion criteria, the majority of which used qualitative methods (N = 16). A thematic synthesis approach was used to analyse data to reveal four emergent themes: (1) finding a way, (2) social connection and peer support, (3) preserving childhood and adolescence and (4) practical support, including the needs relating to education. Identified needs: knowledge and information, emotional support, consistency in education and development, maintaining social connections, physical and psychological well-being, and grief and loss were mapped against a specialist nurse role. CONCLUSION Children and young people with a parent diagnosed with young-onset dementia face unique challenges compared to older carers. Despite growing awareness of their needs, this population is often overlooked in national dementia strategies. Developing a specialist nurse role is a positive step, but broader systemic support is essential to safeguard their well-being and future opportunities. REPORTING METHOD This study adheres to the PRISMA reporting guidelines. PATIENT OR PUBLIC CONTRIBUTION A bespoke Research Advisory Group, consisting of people with young onset dementia, young family carers, clinicians and academics, guided the review.