Living and Dying Well with Dementia

Abstract

Many people with intellectual disability, particularly those with Down syndrome, are at increased risk for Alzheimer’s disease. Recent findings suggest that while onset may be at an earlier age and more rapid in early dementia stages, there is often a long late stage where decisions about end-of-life care and dying well must be supported. For the individual and caregivers, later stages of dementia can be complicated by lack of understanding and preparedness by both generic palliative care and intellectual disability services. The COVID-19 pandemic has posed significant challenges for staff and family, and many have struggled with moral distress as they feel forced to act in a manner contrary to their own care beliefs. Three case studies with reflective questions about caring for people with Down syndrome and dementia are offered, one from the COVID-19 period.