Dying with Dementia: What We Know after More than a Decade of Research

Death with dementia is increasingly common. Although prognostication is difficult, it is an incurable life-limiting illness for which palliative care for the patient is often appropriate. Dementia patients are otherwise at risk of overtreatment with burdensome and possibly non-beneficial interventions and undertreatment of symptoms. Although recent studies indicate encouraging trends of improved palliative care, little evidence supports effectiveness of specific treatments. As of January 2010, at least 45 studies, almost all performed after 2000, have reported on treatment, comfort, symptom burden, and families' satisfaction with care. Over half (25; 56%) of these studies were in US settings, and most were small or retrospective. Few randomized trials and prospective observational studies have been performed so far, but several promising studies have been completed recently or are underway in various countries. Guidelines for care and treatment, still mostly consensus-based, support the benefits of advance care planning, continuity of care, and family and practitioner education. Assessment tools for pain, prognosis, and family evaluations of care have been developed and some have been shown to be effective in clinical practice. With increasing numbers of well-designed, large-scale studies, research in the next decade may result in better evidence-based guidelines and practice.