Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs

• Published in: Journal of applied research in intellectual disabilities Vol. 34; no. 6; pp. 1602 - 1617
• Main Authors: Dekker, Alain D., Wissing, Maureen B. G., Ulgiati, Aurora M., Bijl, Bas, Gool, Gaby, Groen, Marieke R., Grootendorst, Esther S., Wal, Ina A., Hobbelen, Johannes S. M., De Deyn, Peter P., Waninge, Aly
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 01.11.2021; Wiley; Wiley Subscription Services, Inc
• Subjects: Caregivers; Clinical Diagnosis; Dementia; Disease management; Down syndrome; Educational Needs; Family (Sociological Unit); Focus groups; Information Needs; Informed consent; Intellectual disabilities; Medical diagnosis; Multiple Disabilities; Original; Patient education; Qualitative research; Severe Intellectual Disability; severe or profound intellectual (and multiple) disabilities; Symptoms (Individual Disorders)
• ISSN: 1360-2322; 1468-3148
• DOI: 10.1111/jar.12912

Background Differentiating 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. Methods Four 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. Results Thematic 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). Conclusions Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.