Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia
Abstract
Background: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorised as that stage of dementia progression characterised by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. Method: The question before the Summit was whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. Results: The Summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre‐existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the Summit agreed that as was true in achieving diagnosis, it is also imperative in determining advanced dementia that change is measured from the person's prior functioning in combination with clinical impressions of continuing and marked decline and of increasing co‐morbidity, including particular attention to late‐onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognise the greater likelihood of physical symptoms, co‐morbidities, immobility and neuropathological deterioration. Conclusions: The Summit recommended an investment in research to more clearly identify measures of person‐specific additional decline for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers and identify specific markers that signal such additional decline and progression into advanced dementia among people with various levels of pre‐existing intellectual impairment.
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People with DS are at greater risk for developing early-onset dementia caused by AD.
“People with DS are at greater risk for developing early-onset of dementia caused by AD.”
From Interferon signaling modulates Down syndrome-associated Alzheimer’s disease pathology in a mouse model (2025) · cites this paper as [76]
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Araya, P., Niemeyer, B., Schade, K., Dunn, L. N., Waugh, K., Busquet, N., Brindley, C., Brown, C., Winkler, C., Lyford, H. R., et al. (2025) · iScience · doi:10.1016/j.isci.2025.113130 · Cited by 7 · see citing works
“9,41,76 While it is well-established that the APP gene encoded on HSA21 has an essential role in DS-AD pathogenesis through increased levels of APP protein and A β in the brain, it remains poorly understood how trisomy of other HSA21 genes impact APP biology, neuroinflammation, neurode-generation,…”
- Authors
- McCarron, M., McCallion, P., Coppus, A., Fortea, J., Stemp, S., Janicki, M., & Wtachman, K.
- Affiliations
- Trinity College Dublin (IE)
- Temple University (US)
- Radboud University Nijmegen (NL)
- Fundació Catalana per a la Recerca i la Innovació (ES)
- Reena Toronto Canada
- University of Illinois Chicago (US)
- University of Stirling (GB)
- Corresponding author
- McCallion, P.
- Venue
- Journal of Intellectual Disability Research
- Publisher
- Wiley
- Published
- 2018-05-20
- Volume
- 62
- Issue
- 7
- Pages
- 617-624
- ISSN
- 0964-2633 (ISSN-L)
- 1365-2788
- OpenAlex
- W2895375997
- Cited by
- 27
- References
- 0
- Citations by year
- 2026: 3 · 2025: 2 · 2023: 4 · 2022: 6 · 2021: 5 · 2020: 3 · 2019: 2 · 2018: 2
- FWCI
- 2.86
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Intellectual Disability Research (publishedVersion)
- PubMed (publishedVersion)
- Stirling Online Research Repository (University of Stirling) (submittedVersion, public-domain)
- Radboud Repository (Radboud University) (submittedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- advanced dementia, Down syndrome, intellectual disability, dementia staging, activities of daily living, late-onset epilepsy, comorbidities, physical decline, care planning, dementia diagnosis
- MeSH terms
- Aged, Dementia, Down Syndrome, Humans, Intellectual Disability, Disease Progression, Consensus, Internationality
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