Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs.
Alain D Dekker, Maureen B G Wissing, Aurora M Ulgiati and 8 others
PMID 34212466WHAT IT FOUND
Carers and families of people with severe intellectual disabilities want a dementia diagnosis to explain behaviour and guide care choices.
They identified subtle declines in daily activities like eating and dressing as key signs. Current training lacks specific guidance for this population.
Key findings
01Participants valued a dementia diagnosis primarily to understand behavioural changes and to make informed choices about support and treatment.
02Symptoms were recognised through changes in daily contexts such as nursing, eating, and mobility, rather than direct neuropsychological testing.
03Direct support professionals often lack the specific training needed to identify subtle signs of dementia in this population.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The study did not include specialised intellectual disability physicians in every focus group, which may have limited the medical perspective on diagnosis. Care professionals may have conflated signs of dementia in people with mild intellectual disabilities with those in severe cases, as they often work with mixed populations. The categorisation of symptoms was complex and some symptoms could not be clearly classified due to missing context or multiple potential causes. Audio recording failed for the last 15 minutes of one focus group session, resulting in some lost data on training needs.
Declared interests
The authors declare no conflicts of interest.
The easy way to misread this
Do not interpret the identified symptoms as a validated diagnostic tool or a standardised assessment protocol. These are practice-based observations from focus groups and require further research to be developed into reliable clinical instruments.