Assessment & Research

Diagnosing Alzheimer's dementia in Down syndrome: problems and possible solutions.

Nieuwenhuis-Mark (2009) · Research in developmental disabilities 2009
★ The Verdict

Track each adult's own cognitive peak; any clear drop from that personal best flags Alzheimer's dementia in Down syndrome.

✓ Read this if BCBAs who support adults with Down syndrome in residential or day programs.
✗ Skip if Clinicians who only work with children or general dementia cases.

01Research in Context

01

What this study did

Nieuwenhuis-Mark (2009) wrote a narrative review. The author asked: how can we spot Alzheimer's dementia in adults who already have Down syndrome? The paper lists the pitfalls and offers fixes. It is not a new experiment. It is a map of the problem.

02

What they found

The main point: every adult with Down syndrome is different. You must know that person's own best level before you can see decline. Without a personal baseline, you will miss the disease or call normal change dementia.

03

How this fits with other research

Zigman et al. (1997) showed that almost every adult with Down syndrome over 40 already has Alzheimer-type brain changes. Nieuwenhuis-Mark (2009) takes that fact and asks, 'How do we decide who actually shows symptoms?'

Prasher et al. (2004) gave one answer: the 15-item ABDQ screening tool reached 92 % accuracy. Nieuwenhuis-Mark (2009) cites tools like this as the way forward.

Gutman et al. (2016) tested another answer: a computerized battery kept scores stable over 18 months. This backs E's call for repeatable tests that track each person against herself.

Smith et al. (2014) found group-home staff still use guesswork. E's review supplies the structured methods those staff need.

04

Why it matters

If you serve adults with Down syndrome, start a personal cognitive file now. Note the best score each client reaches on simple tests like the ABDQ or a short computer battery. Update every six months. When scores drop below that person's baseline, you have an early signal of Alzheimer's, not just natural scatter. This one step turns a vague diagnostic puzzle into a clear tracking routine.

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→ Action — try this Monday

Open a simple spreadsheet, list each client, and record today's best score on the ABDQ or a short computer test—repeat every six months.

02At a glance

Intervention
not applicable
Design
narrative review
Population
down syndrome, dementia
Finding
not reported

03Original abstract

It is widely accepted that people with Down syndrome are more likely than the general population to develop Alzheimer's dementia as they age. However, the diagnosis can be problematic in this population for a number of reasons. These include: the large intra-individual variability in cognitive functioning, the different diagnostic and methodological procedures used in the field and the difficulty in obtaining baseline levels of cognitive functioning in this population with which to assess cognitive and behavioral change. Recent researchers have begun to suggest ways around these difficulties. This review explores these recent developments and provides recommendations which may aid clinicians in their attempts to diagnose Alzheimer's dementia in the early stages in the Down syndrome population.

Research in developmental disabilities, 2009 · doi:10.1016/j.ridd.2009.01.010