Practicalities (and real‐life experiences) of dementia in adults with Down syndrome

Author:

Harisinghani Ayesha1ORCID,Cottrell Clorinda1,Donelan Karen23,Lam Alice D.4,Pulsifer Margaret56,Santoro Stephanie L.17ORCID

Affiliation:

1. Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital Boston Massachusetts USA

2. The Mongan Institute Survey Research Unit, MGH Boston Massachusetts USA

3. Heller School for Social Policy and Management Brandeis University Waltham Massachusetts USA

4. Department of Neurology Massachusetts General Hospital Boston Massachusetts USA

5. Psychology Assessment Center Massachusetts General Hospital Boston Massachusetts USA

6. Department of Psychiatry Harvard Medical School Boston Massachusetts USA

7. Department of Pediatrics Harvard Medical School Boston Massachusetts USA

Abstract

AbstractAdults with down syndrome (DS) have a lifetime dementia risk in excess of 95%, with a median age of onset of 55 years, due to trisomy 21. Co‐occurring Alzheimer's disease (AD) has increased morbidity and mortality, and it is now recommended to screen for AD in all adults with DS beginning at 40 years of age. In this manuscript, we present two clinical cases of adults with DS who developed AD summarizing their medical histories, presenting symptoms, path to diagnosis and psychosocial aspects of care collected from retrospective chart review with caregiver consent. These two cases were chosen due to their complexity and interwoven nature of the medical and psychosocial aspects, and highlight the complexity and nuance of caring for patients with DS and AD.

Publisher

Wiley

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