A prospective 14-year longitudinal follow-up of dementia in persons with Down syndrome.
Use the DMR plus brief memory tests each year to catch dementia early in adults with Down syndrome.
01Research in Context
What this study did
Researchers followed the adults with Down syndrome for 14 years. They gave yearly tests to spot early signs of dementia.
The team used the Dementia Questionnaire for Persons with Mental Retardation (DMR) plus memory and daily-living tests.
They tracked when dementia started and how long people lived after diagnosis.
What they found
Dementia began around age 55 on average. Most people lived about 7 years after diagnosis.
The DMR questionnaire caught decline earlier than other tests. It picked up small changes in memory and daily skills.
How this fits with other research
English et al. (1995) also studied adults with Down syndrome long-term. They found schizophrenia did not hurt daily skills six years later. Both studies show Down syndrome adults can be tracked reliably over time.
de Bildt et al. (2003) tested two screening tools for autism in kids with ID. Like Whitehouse et al. (2014), they found each tool catches different kids. This supports using more than one test when screening for new problems.
Costa et al. (2017) looked at bone health in the same adult group. Age was the top risk for weak bones, just as age is the top risk for dementia in the target study.
Why it matters
If you serve adults with Down syndrome, add the DMR to your yearly check-up. It is quick and spots dementia sooner. Earlier detection lets you plan supports and train staff before big losses occur.
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02At a glance
03Original abstract
BACKGROUND: To examine dementia characteristics, age at onset and associated comorbidities in persons with Down syndrome. METHOD: Seventy-seven people with Down syndrome aged 35 years and older were followed longitudinally. The diagnosis of dementia was established using the modified International Classification of Diseases, Tenth Revision (ICD-10) criteria and a combination of objective and informant-based tests. Cognitive tests included the Test for Severe Impairment and the Down Syndrome Mental Status Examination; adaptive behaviour was measured using the Daily Living Skills Questionnaire. The Dementia Questionnaire for Mental Retarded Persons (DMR) was added to the test battery in 2005 and this study includes follow-up data for this instrument. RESULTS: Over the 14-year period the average age of diagnosis at 55.41 years (SD = 7.14) was in the higher range of previously reported estimates (51-56 years) and a median survival of 7 years after diagnosis. Persons with dementia in the sample were significantly older than persons without dementia. The presence of dementia was also associated with epilepsy and sensory impairments. Among instruments the DMR appeared most sensitive to tracking change in symptoms over time before diagnosis. CONCLUSION: The previously reported high risk levels for dementia among people with Down syndrome was confirmed in these data as was the value of the instruments utilised in tracking decline and helping to confirm diagnosis even in persons with severe intellectual disability.
Journal of intellectual disability research : JIDR, 2014 · doi:10.1111/jir.12074