Tag Archives: research

Debate Over Study on Antidementia Drugs for Adults with Down Syndrome and Alzheimer’s Disease

In March 2018, 21 researchers published a study in the British Journal of Psychiatry called “Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia: clinical cohort study.”

Aims: To investigate the effect of cholinesterase inhibitors or memantine on survival and function in adults with Down syndrome and Alzheimer's disease.The researchers noted that there have been few studies conducted, and therefore little information is available on how to treat adults with Down syndrome and Alzheimer’s disease. They set out to test specific antidementia drugs on people with Down syndrome and Alzheimer’s disease.

In the most recent edition of the same journal doctors David S. Smith, (Director of the Down Syndrome Clinic of Wisconsin at Children’s Hospital in Milwaukee and member of the Down Syndrome Medical Interest Group), and Brian Chicoine, (Medical Director of the Adult Down Syndrome Center of Lutheran General Hospital in Park Ridge, Illinois) published a response to the March study.

Difficulties of diagnosing and managing dementia in people with Down syndrome

“As practicing clinicians who provide care to adults with Down syndrome, we appreciate Eady and colleagues’ attempt to address a real concern in this patient population. However, we have significant concerns about clinicians potentially using in their practice the conclusions drawn by the authors. The study conclusions offer false hope and may result in wasted resources.”

Smith and Chicoine take issue with several aspects of the study:

  1. There are major differences in two groups (those who did/did not receive the medications) involved in the study. Smith and Chicoine argue that the significance of the differences, including age, degree of intellectual disability, and progress of dementia symptoms, could make the results invalid.
  2. The study measured the survival time of the participants. (Those who took the medication survived an average of 2 years longer than those who did not.) Smith and Chicoine suggest that quality of life would be a better measure to investigate.Dementia takes a tremendous toll on the caregivers and families. Even if the medications do extend life, where is the benefit? What kind of life will they have?
  3. Smith and Chicoine point to previous studies that they claim show there is “no benefit of pharmacological interventions for cognitive decline in people with Down syndrome.”

Finally, Smith and Chicoine point out that they fear doctors tend to over-diagnose Alzheimer’s disease in adults with Down syndrome who experience cognitive decline. They remind us that even though people with Down syndrome have plaques and tangles in the brain tissue, not all adults with Down syndrome experience dementia. They stress the importance of ruling out other possible causes of decline before a diagnosis of Alzheimer’s Disease is made.

The original study’s authors reply to Smith and Chicoine in the November journal. In it, they defend their procedures and results. They argue that medications have been shown to slow the rate of cognitive decline in patients without Down syndrome and reiterate the need for more research in this area.

Their final statement: “People with Down syndrome and dementia should not be denied access to antidementia drugs.”

It should be noted that Smith and Chicoine did not argue against the use of antidementia drugs in all cases. They merely took issue with the study’s design and argued for careful evaluation prior to an Alzheimer’s diagnosis in adults with Down syndrome.

 

Studies Mentioned:

David Smith and Brian Chicoine. Difficulties of diagnosing and managing dementia in people with Down syndrome. British Journal of Psychiatry, Volume 213, Issue 5 November 2018 , pp. 668-669. Published online: 19 October 2018

Eady, N, Sheehan, R, Rantell, K, Sinai, A, Bernal, J, Bohnen, I, et al. Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia: clinical cohort study. Br J Psychiatry 2018; 212: 155–60.

Eady, N, Sheehan, R, Rantell, K, Sinai, A, Bernal, J, Bohnen, I, et al. (2018). Author’s reply to: Difficulties of diagnosing and managing dementia in people with Down syndrome. The British Journal of Psychiatry. 213. 669-669. 10.1192

Further reading: Dementia and People with Intellectual Disabilities

New Study on Bone Mass in Adults With Down Syndrome

Intellectual and Developmental Disabilities

Volume 55, Issue 5
(October 2017)

M is for Music Therapy – A to Z Blogging Challenge

M on Blogging from A to ZMusic therapy may not be as common as some of the others we’re used to (PT, OT, and Speech) but it can be just as helpful. Most of the information online seems to be geared toward children – as we often see – but we can also approach music therapy from a lifelong learner perspective.

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#CountUsIn – Co-presenting with NIH on #RaceAndDs

racial disparities exist

For me, the highlight of this weekend’s Down Syndrome Affiliates in Action (DSAIA) conference was the presentation is was honored to co-present.  For the first time in 18+ months since I first wrote about the racial health disparities that exist in the Ds community, I felt like we might be moving forward.

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Z – Alzheimer’s Disease

Z for Alzheimer's Disease on The Road We've SharedI could use a play on words and explain the reason this last post in our A to Z Blogging Challenge is late by saying something about forgetting to do it.The truth is that it’s a difficult subject to write, or even think, about.  For those of us with adult children who have Down syndrome, the worry about Alzheimer’s disease is always present.

Early onset Alzheimer's disease and dementia in adults with Down syndrome

Part of our series of infographics on aging and Down syndrome

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C is for connected Ds-Connected that is!

By: Stephanie Holland  ***Update by Sujata Bardhan, Ph.D., Scientific Program Manager, DS-Connect Registry Coordinator
C - A to Z Blogging Challenge - The Road We've SharedOne great example of how the community comes together for the greater good is the collaboration that has happened to create the Down syndrome registry.  The funding comes from NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), but ongoing input comes from parents, families, and representatives from every corner of the Ds world.

The Down syndrome Consortium members

Continue reading C is for connected Ds-Connected that is!