Deficits and barriers in medical care of people with down syndrome and dementia: A scoping review

Abstract

Introduction: People with Down syndrome (PwDS) have a substantially increased risk of developing Alzheimer's dementia. This can lead to challenges in medical care. To identify these challenges, a scoping review was conducted. Methods: The search consisted of a systematic database search and a structured search on relevant institutional websites. After inclusion, articles were reviewed for deficits and barriers in health care provision for PwDS and dementia. Results were discussed and systematized in a workshop. Results: Of 3,679 articles identified, 23 were included by systematic search and two by structured search. Finally, results were systematized in two dimensions: (1) Medical areas where problems occurred (diagnostics, therapy, research, and overarching issues) and (2) Stakeholders affected (patients, caregivers, and medical or other service providers). Conclusions: Since multiple deficits and barriers were identified in the medical care for PwDS and dementia, it is crucial to improve healthcare provision for this vulnerable group.

Keywords: Alzheimer’s disease; dementia; down syndrome; intellectual impairments; medical care.