A prospective 20‐year longitudinal follow‐up of dementia in persons with Down syndrome
Abstract
Goal: To examine dementia characteristics, age at onset and associated co‐morbidities in persons with Down syndrome. Method: A total of 77 people with Down syndrome aged 35 years and older were followed up from 1996 to 2015. The diagnosis of dementia was established using the modified ICD 10 Criteria and a combination of objective and informant‐based tests. Cognitive tests included the Test for Severe Impairment and the Down Syndrome Mental Status Examination; adaptive behaviour was measured using the Daily Living Skills Questionnaire, and data from the Dementia Questionnaire for People with Intellectual Disabilities have been available since 2005. Results: Over the 20‐year period, 97.4% ( 75 of 77 ) persons developed dementia with a mean age of dementia diagnosis of 55 years (SD = 7.1, median = 56 years). Clinical dementia was associated with cognitive and function decline and seizure activity. Risk for dementia increased from 23% in those aged 50 years to 80% in those aged 65 years and above. There were no differences by level of ID. Conclusion: The previously reported high risk levels for dementia among people with Down syndrome were confirmed in this data as was the relationship with late onset epilepsy. The value of the instruments utilised in tracking decline and helping to confirm diagnosis is further highlighted.
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By age 55 years, more than half of people with DS will have developed clinical dementia caused by AD, and by age 70 years, virtually all individuals with DS will have AD-dementia.
“By the age of 55 years, more than half of people with DS will have developed clinical dementia, caused by AD, and by age 70 years, virtually all individuals with DS will have AD-dementia [28, 33, 41, 47].”
From Apolipoprotein E abundance is elevated in the brains of individuals with Down syndrome–Alzheimer’s disease (2025) · cites this paper as [47]
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Schworer, E. K., Zammit, M. D., Wang, J., Handen, B. L., Betthauser, T., Laymon, C. M., Tudorascu, D. L., Cohen, A. D., Zaman, S. H., Ances, B. M., et al. (2024) · The Lancet Neurology · doi:10.1016/s1474-4422(24)00426-5 · Cited by 29 · see citing works
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“By the age of 55 years, more than half of people with DS will have developed clinical dementia, caused by AD, and by age 70 years, virtually all individuals with DS will have AD-dementia [28, 33, 41, 47].”
- Authors
- McCarron, M., McCallion, P., Reilly, E., Dunne, P., Carroll, R., & Mulryan, N.
- Affiliations
- Trinity College Dublin (IE)
- University at Albany, State University of New York (US)
- Daughters of Charity Disability Support Service Dublin Ireland
- Corresponding author
- McCarron, M.
- Venue
- Journal of Intellectual Disability Research
- Publisher
- Wiley
- Published
- 2017-06-29
- Volume
- 61
- Issue
- 9
- Pages
- 843-852
- ISSN
- 0964-2633 (ISSN-L)
- 1365-2788
- OpenAlex
- W2727088999
- Cited by
- 295
- References
- 0
- Citations by year
- 2026: 31 · 2025: 57 · 2024: 42 · 2023: 34 · 2022: 32 · 2021: 36 · 2020: 30 · 2019: 10 · 2018: 21 · 2017: 1 · 2014: 1
- FWCI
- 16.15
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Intellectual Disability Research (publishedVersion)
- PubMed (publishedVersion)
- 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
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- Down syndrome, dementia, age of onset, late-onset epilepsy, comorbidities, cognitive decline, functional decline, intellectual disability, dementia risk, longitudinal follow-up, diagnostic criteria, adaptive behavior
- MeSH terms
- Aged, Aged, 80 and over, Dementia, Down Syndrome, Epilepsy, Female, Humans, Middle Aged, Risk, Comorbidity, Age of Onset
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