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Reliance on carer reports of early symptoms of dementia among adults with intellectual disabilities

As clinicians often rely on carer reports to identify adults with intellectual disabilities (ID) with early signs of dementia, this study focused on carer-reported symptoms to ascertain whether carer reports of decline in everyday function would be a more effective screening method to detect possible cases of dementia than reports of memory decline in older adults with ID. Subjects were 154 participants who were reassessed along with their carers two to three years after baseline. A questionnaire for carer-reported change in everyday function and the Dementia Questionnaire for Persons with Mental Retardation (DMR) were used to assess carer views of everyday function and memory. The diagnosis of dementia was confirmed by two psychiatrists working independently. Participants who developed dementia displayed both everyday function and memory decline. Overall, decline in everyday function appeared to be the best indicator of new dementia cases. Retrospective carer report of change in everyday function was as good as, if not better than, prospective ratings to identify dementia; however, in those with mild ID, memory change was a better indicator of dementia, while in those with more severe ID, decline in everyday function was a better indicator. Decline in everyday function (whether prospective change from baseline or reported retrospectively by carers) appears to be a better screening method for dementia than memory decline, particularly for participants with moderate/severe ID.

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Journal of Policy and Practice in Intellectual Disabilities

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