Memory Services for People With Down Syndrome: A Scoping Review Exploring Models of Care and Access

ABSTRACT

More than 95% of people with Down syndrome develop Alzheimer's disease (AD), with a median age of diagnosis of approximately 54 years. However, there is a significant gap in guidance regarding the design of effective memory services and tailored diagnostic pathways. This scoping review aimed to identify and describe existing memory service models and dementia diagnostic pathways for adults with Down syndrome. It was conducted according to the Joanna Briggs Institute's updated methodological guidance for scoping reviews. Four databases (Ovid MEDLINE, Ovid EMBASE + EMBASE Classic, Ovid PsycINFO and EBSCO CINAHL Plus) were searched using three key concepts: Alzheimer's disease, Down syndrome and memory services. All primary study types published between January 2005 and September 2026 were considered for inclusion. Seventeen studies met the inclusion criteria comprising 12 service evaluations, two prospective cohort studies, one observational study, and two qualitative studies. Thirteen studies were conducted in the United Kingdom. Key service components were the use of validated cognitive assessment tools, structured screening pathways, and multidisciplinary team involvement. This scoping review indicates limited literature describing dedicated memory services and dementia diagnostic pathways for people with Down syndrome. Existing services highlight several key features including multidisciplinary team involvement, baseline and prospective cognitive screening, and the longitudinal use of validated screening tools. Further research, including participatory research, is needed to inform the development and implementation of evidence‐based memory service models for this population.