Needs of people living with young-onset dementia and family carers, explored by dementia subtype, phase in the disease process, and living setting: A scoping review

Background Young-onset dementia (YOD) affects the lives of people living with the condition and family carers, such as partners and children, creating complex situations and unique needs. These needs are likely to differ across dementia subtype, disease phase, and living setting, yet, a comprehensive overview of distinct needs is currently lacking. Objective This scoping review aims to identify needs of people with YOD and family carers in relation to dementia subtype, disease phase, and living setting. Methods Literature was systematically searched in PubMed, CINAHL, Embase, and APA PsycINFO up to October 2024. After screening by two independent researchers, 140 articles were included. Results Four main themes of needs emerged: support-, care-, interpersonal-, and personal needs. Needs varied per target group, dementia subtype, living setting, and disease phase. Prominent support needs included practical assistance, and emotional and psychological support. Information on diagnosis and prognosis, and active involvement of healthcare professionals were highlighted within care needs. Interpersonal needs often referred to companionship and togetherness, as well as empathy, understanding, and acceptance. Finally, security and safety, and time for oneself were emphasized as personal needs. Overall, the majority of current evidence pertained to Alzheimer's disease, the post-diagnostic phase, and living at home. Conclusions YOD-needs vary widely, requiring flexible, person- and family-centered care and support. Future research should address underrepresented areas, including the needs of dyads, families, and YOD care home residents. Additionally, it should address needs related to rarer YOD subtypes and specific disease phases to better capture the diversity of these needs.