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.

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Publication Details

Journal
Journal of Policy and Practice in Intellectual Disabilities
Published
2026-11-03
DOI
https://doi.org/10.1111/jppi.70082
Primary Topic
Down syndrome and intellectual disability research
Type
article
Field-Weighted Citation Impact
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article

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

Madeleine Healy, Amy G. Brodtmann, Darshini Ayton, Abby M. Foster
Journal of Policy and Practice in Intellectual Disabilities
Down syndrome and intellectual disability research
article

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

Madeleine Healy, Amy G. Brodtmann, Darshini Ayton, Abby M. Foster
article en

Abstract

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.

Journal of Policy and Practice in Intellectual DisabilitiesVol. 23(4)
Eastern Health (AU), Monash Health (AU), Monash University (AU)
Openalex Percentile: Top 12%
Down syndrome and intellectual disability research
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