Observe once again: dementia in people with severe/profound intellectual (and multiple) disabilities

Maureen Wissing

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    Let’s not forget dementia in people with severe/profound intellectual (and multiple) disabilities

    Dementia is increasingly prevalent among people with intellectual disabilities as their life expectancy has increased. A major challenge in intellectual disability care is to observe symptoms and diagnose dementia in people with severe/profound intellectual (and multiple) disabilities (abbreviated to SPI(M)D). Until recently, knowledge and dementia screening instruments dedicated to people with SPI(M)D were scarce. Dementia in people with SPI(M)D was a forgotten topic, which had to be changed.

    We have brought about a change by conducting practice-oriented research examining the relevance of a dementia diagnosis and identifying observable dementia symptoms in people with SPI(M)D. Based on the results, training modules and an instrument to aid diagnosis of dementia in this population were developed.

    Results showed that a dementia diagnosis in people with SPI(M)D is important for a better understanding and to be able to make informed choices. However, dementia cannot be diagnosed if symptoms are not recognized. Caregivers and family members need specialized knowledge to recognize subtle dementia symptoms. The novel, freely accessible training modules could offer them such knowledge as it provides information about observable dementia symptoms in people with SPI(M)D (vb-dementie.nl/kennismodules). These training modules show that dementia manifests as a set of cognitive symptoms, activities of daily living symptoms, behavioral and psychological symptoms, motor symptoms, and medical comorbidities. For psychologists and psychological assistants, we have developed a diagnostic aid for dementia in people with SPI(M)D to identify and monitor those symptoms (vb-dementie.nl/diagnostisch-hulpmiddel).

    With newly developed knowledge and practical tools at their disposal, it is up to care professionals and family members to observe once again to recognize and diagnose dementia in people with SPI(M)D. This ensures that dementia in people with SPI(M)D is not forgotten.
    Originele taal-2English
    KwalificatieDoctor of Philosophy
    Toekennende instantie
    • Rijksuniversiteit Groningen
    Begeleider(s)/adviseur
    • De Deyn, Peter, Supervisor
    • Dekker, Alain, Co-supervisor
    • Waninge, Aly, Co-supervisor
    • Hobbelen, Hans, Co-supervisor
    Datum van toekenning13-nov.-2023
    Plaats van publicatie[Groningen]
    Uitgever
    DOI's
    StatusPublished - 2023

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