Behavioural characteristics associated with dementia assessment referrals in adults with Down syndrome.
Behavioral excesses and staff disruption—not age or memory slips—are the clearest signals for dementia screening in adults with Down syndrome.
01Research in Context
What this study did
The team asked: what behaviors push staff to send adults with Down syndrome for a dementia check?
They compared two groups: adults who had been referred and adults who had not.
Staff filled out rating scales about behavior, social skills, and how much each person disrupted the day.
What they found
Referred adults showed more screaming, hitting, and repetitive actions.
They also had weaker daily-living and coping skills, and their behaviors wore staff out.
How this fits with other research
Rose et al. (2000) first showed that personality changes come before memory loss in Down syndrome dementia; the new study tells us those changes are exactly what trigger referrals.
Smith et al. (2014) found no age-linked behavior rise in adults without dementia—an apparent contradiction. The key difference: T et al. looked at stable, non-referred adults, while D et al. looked at the subgroup whose behavior had already escalated enough to seek help.
Spanoudis et al. (2011) remind us that depression can mimic these excess behaviors, so we must rule depression out before assuming dementia.
Why it matters
You now have a short list of red flags: sudden increase in screaming, hitting, or repetitive acts, plus drops in dressing, toileting, or turn-taking skills. When these behaviors start draining staff, make the dementia referral quickly and track the same items over time to see if intervention eases the load.
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02At a glance
03Original abstract
BACKGROUND: Behavioural changes associated with dementia in Down syndrome are well documented, yet little is known about the effect of such behaviours on carers and referral. By comparing the behavioural and cognitive profiles of individuals referred for a dementia assessment with those of individuals not referred, some insight can be gained into behavioural characteristics that initiate referral for specialist support or interventions. METHOD: Forty-six adults with Down syndrome were divided into two groups dependent upon method of entry into the study; post-referral to a specialist service for older adults with intellectual disabilities and Down syndrome for a dementia assessment (n = 17) or after receiving information sent out to day centres and residential homes (n = 29). These groups were compared on established measures of dementia alongside two informant measures of behaviour. RESULTS: Those referred for a dementia assessment evidenced scores indicative of cognitive decline on both informant and direct Neuropsychological Assessments and showed more behavioural excesses, but not deficits, and lower socialisation and coping skills than those in the comparison group. Carers of those referred for a dementia assessment reported a greater impact of behavioural excesses on staff than on the individual showing the behaviour in contrast to the comparison group. CONCLUSION: The behavioural differences between those referred and the comparison group suggest that two factors are involved in the instigation of a referral for a dementia assessment: the nature of the behavioural presentation (excesses rather than deficits) and the effect of that behavioural change upon the care staff.
Journal of intellectual disability research : JIDR, 2008 · doi:10.1111/j.1365-2788.2007.01036.x