Dementia symptoms in persons with severe/profound intellectual disability: Expertise of practice

Background: In people with severe or profound intellectual disabilities,
it is difficult to diagnose dementia. As timely identification and diagnosis
of dementia allows for a timely response to changing client wishes
and needs, this study aims to examine symptoms, and diagnosis of
dementia in practice.
Method: Family members and professionals were invited to fill out a
survey about symptoms and diagnosis of dementia in people with
severe or profound intellectual disabilities. Results of the survey were
further explored within semi-structured interviews with professionals
having experience with signaling and diagnosing dementia in these
people. Symptoms found in the survey and transcripts of the interviews
were qualitatively analyzed, using thematic analyses based on a
developed symptom-matrix.
Results: The survey was filled out completely by 14 family members
and 90 professionals with different backgrounds. Results showed that
behavioral changes were recognized more frequently than cognitive
decline. Compared to those without dementia, epilepsy and motor
decline were more present in case of dementia. Fifteen interviews
(until saturation) with professionals provided an in-depth view into
the symptoms, and how to identify them, again stressing behavioral
alterations and to a lesser extent cognitive symptoms.
Conclusions: Comprehensive results about specific symptoms will be
presented during the congress.