Should we refer for a dementia assessment? A checklist to help know when to be concerned about dementia in adults with Down syndrome and other intellectual disabilities

Abstract

Accessible summary• Care staff for people with learning disabilities sometimes need help to know when to ask for help when a resident has a problem with his or her memory. • We've made an easy checklist to help them know when to ask for extra help.• We hope it will speed up finding out whether people have dementia so we can offer the best help possible. • It seems to be really useful and we'd like to do more research in the future. SummaryThe aim of this research was to develop a simple screening checklist to help carers and professionals know when to make a referral for a dementia assessment. A checklist was completed for all new referrals to a dementia service for people with intellectual disabilities. The obtained scores were compared to the diagnostic outcome of a comprehensive dementia assessment. The data (n = 159) indicate a higher score on the checklist correlates significantly with a subsequent diagnosis of dementia. Cut-off scores are explored. The checklist appears to be a useful tool to prompt referrals for a full dementia assessment. By helping the referrer to know when to be concerned about dementia, it may reduce the number of people referred late or not at all.

Neurocognitive Disorders

“…However, in individuals who can complete cognitive testing, change in cognitive functioning (particularly episodic memory) has been observed in adults with Down syndrome several years before clinical diagnosis of dementia (Crayton et al, 1998;Devenny et al, 2002;Krinsky-McHale et al, 2002). Nevertheless, changes in behavior and personality now form the basis of several caregiver-reported screening tools for dementia, particularly for individuals with Down syndrome (Oliver et al, 2011;Whitwham, McBrien, & Broom, 2011). Strydom, Chan, Fenton, et al (2013) defined mild cognitive impairment as individuals who had previously screened positive for possible dementia on the Dementia Questionnaire for People with Intellectual Disability screening tool (DMR; Evenhuis, 1992), or because of concerns about decline in functioning or memory, and explored its predictive value for dementia diagnoses two years later using ICD-10 and DSM-IV criteria.…”