Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature.
Use the Summit’s short dementia word list so every report on adults with ID speaks the same language.
01Research in Context
What this study did
A global panel of experts met at the 2017 International Summit.
They agreed on one shared list of words for dementia when it shows up in adults with intellectual disability.
The goal was to stop the messy mix of terms that cloud reports and records.
What they found
The group wrote a short guide that tells clinicians which words to use and which to drop.
It gives clear labels for each stage of decline so teams can speak the same language.
How this fits with other research
Kleinert et al. (2007) and McDowell (2013) already pushed the field to drop "mental retardation" and say "intellectual disability." The Summit builds on that same word-fix idea, but aims it at dementia.
Carter et al. (2025) later pooled 11 studies where adults with ID said dementia felt like "losing skills and friends." Their review used easy-read consent and picture cards—exactly the kind of work that needs the Summit’s fixed terms so results line up across teams.
Hamama et al. (2021) updated the AAIDD manual with support-intensity levels. The Summit guide slots into that frame by giving dementia words that match the manual’s stages.
Why it matters
If you write evals, ISP updates, or psych reports for adults with ID, swap in the Summit terms today. One shared list ends the "cognitive decline vs. dementia vs. memory problem" muddle. Teams can track change faster, compare cases across clinics, and give families clearer news.
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02At a glance
03Original abstract
A working group of the 2016 International Summit on Intellectual Disability and Dementia was charged to examine the terminology used to define and report on dementia in publications related to intellectual disability (ID). A review of related publications showed mixed uses of terms associated with dementia or causative diseases. As with dementia research in the non-ID population, language related to dementia in the ID field often lacks precision and could lead to a misunderstanding of the condition(s) under discussion, an increasingly crucial issue given the increased global attention dementia is receiving in that field. Most articles related to ID and dementia reporting clinical or medical research generally provide a structured definition of dementia or related terms; social care articles tend toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended that a consistent approach is taken that ensures (a) growing familiarity with dementia-related diagnostic, condition-specific, and social care terms (as identified in the working group's report); (b) creating a guidance document on accurately defining and presenting information about individuals or groups referenced; and
Intellectual and developmental disabilities, 2017 · doi:10.1352/1934-9556-55.5.338