Over on huntingtonsdiseasenews.com Magdalena Kegelby reports that caregivers of people with Huntington’s disease describe themselves as invisible patients in a healthcare system they are profoundly disappointed with, according to a study in the journal Psychiatra Polska. While the study was done in Poland, similar findings in both the U.S. and U.K. indicate that changes in medical education and healthcare systems are needed to better help both Huntington’s patients and their caregivers.
The caregiving burden and quality of life of people caring for family members with Huntington’s disease is a relatively well-studied domain. But few researchers have focused on how caregivers interact with healthcare services, an issue that researchers at Poznan University of Medical Sciences recently explored.