Diagnosing early onset dementia and then what? A frustrating system of aftercare resources

Z Chemali^1–3, S Schamber², EC Tarbi², D Acar^1,2, M Avila-Urizar^2
1Harvard Medical School, ²Departments of Neurology and Psychiatry, Division of Cognitive and Behavioral Neurology, Brigham and Women’s Hospital, ³Departments of Psychiatry and Neurology, Massachusetts General Hospital, Boston, MA, USA

Abstract: Recent studies indicate that the prevalence of early onset dementia (EOD) is more common than it was once presumed. As such, and considering the substantial challenges EOD presents to the patient, caregivers, and health care providers, this study sought to investigate the mechanism of care delivered to these patients. A medical record chart review was conducted for 85 patients attending a memory disorder unit who initially presented to rule out EOD as a working diagnosis. The results suggest that while the majority of these patients received an extensive work-up and were heavily medicated, they remained at home, where they lacked adequate age-related services and could not be placed, despite the crippling caregiver burden. This manuscript is a platform to discuss our current system limitations in the care of these patients with an eye on new opportunities for this challenging group.

Keywords: early onset dementia, social work, services, caregiving