Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs
Copyright policy )Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs
AbstractBackgroundDifferentiating 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.MethodsFour 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.ResultsThematic 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).ConclusionsTimely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.
- University of Gronigen Netherlands
- University of Antwerp Belgium
- Ipse de Bruggen Netherlands
- University Medical Center Groningen Netherlands
- Alliade Netherlands
Persons with Disabilities, MOTOR DISABILITIES, Down syndrome, DIAGNOSTIC-CRITERIA, Severe/profound intellectual (and multiple) disabilities, DOWNS-SYNDROME, Intellectual disabilities, Intellectual Disability, Psychology, Humans, Family, OLDER-ADULTS, Downsyndroom, Gehandicaptenzorg, Original Articles, Focus Groups, Focus groups, EXPERIENCES, Verstandelijke beperking, ALZHEIMERS-DISEASE, INSIGHTS, severe or profound intellectual (and multiple) disabilities, focus groups, Dementia, Human medicine, intellectual disabilities, Dementie, dementia
Persons with Disabilities, MOTOR DISABILITIES, Down syndrome, DIAGNOSTIC-CRITERIA, Severe/profound intellectual (and multiple) disabilities, DOWNS-SYNDROME, Intellectual disabilities, Intellectual Disability, Psychology, Humans, Family, OLDER-ADULTS, Downsyndroom, Gehandicaptenzorg, Original Articles, Focus Groups, Focus groups, EXPERIENCES, Verstandelijke beperking, ALZHEIMERS-DISEASE, INSIGHTS, severe or profound intellectual (and multiple) disabilities, focus groups, Dementia, Human medicine, intellectual disabilities, Dementie, dementia
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