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Published on: June 20, 2020
Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Practice-Based Observations of
Maureen B G Wissing1,2,3,4, Andrea S Fokkens3,5, Roos Dijkstra4,6
1Department of Neurology and Alzheimer Center, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
Introduction:
Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population.
Methods:
Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix.
Results:
Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported.
Conclusion:
Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.
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