ArticleJournal of applied research in intellectual disabilities : JARID2021
Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs.
Article in Journal of applied research in intellectual disabilities : JARID, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it, 20 citations in OpenAlex.
- The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms.Journal of applied research in intellectual disabilities : JARID · 2022Pooled it
- 'Name It to Tame It': Dementia Diagnostic Procedure in Austrian Care Facilities for People With Intellectual Disabilities. An Interview Study.Journal of intellectual disability research : JIDR · 2026Article
- Risk of dementia and related neurocognitive disorders among autistic and non-autistic older adults: role of established risk factors.Age and ageing · 2026Article
- Article
- Daily Stress and Cortisol Patterns in Midlife and Older Parents of Children With Developmental Disabilities.The journals of gerontology. Series B, Psychological sciences and social sciences · 2025Article
- Assessment of cognitive function in individuals with Down syndrome and dementia: a systematic review.Dementia & neuropsychologia · 2025Review
- Dementia in People with Severe/Profound Intellectual (And Multiple) Disabilities, and Its Natural History.Journal of mental health research in intellectual disabilities · 2024Article
- The Global Deterioration Scale for Down Syndrome Population (GDS-DS): A Rating Scale to Assess the Progression of Alzheimer's Disease.International journal of environmental research and public health · 2023Article
- Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Practice-Based Observations of Symptoms.Journal of mental health research in intellectual disabilities · 2022Article
- The Behavioral and Psychological Symptoms of Dementia in Down Syndrome Scale (BPSD-DS II): Optimization and Further Validation.Journal of Alzheimer's disease : JAD · 2021Article
- Systematic review and evidence gap mapping of Alzheimer's disease biomarker studies in those with intellectual and developmental disability.Alzheimer's & dementia (Amsterdam, Netherlands)Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDifferentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.
methodsFour explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia.
resultsThematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3).
conclusionsTimely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.