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

Abstract

Abstract. 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.

White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

“…14 Such high-quality evidence is not yet available for palliative care in dementia, although dementia care at the end of life is increasingly being studied. 15 Disease trajectories differ for dementia and cancer patients. Cancer patients may experience a substantial decline in function in the last months or weeks of life, and diseased trajectories are relatively well-defined.…”

“…18 Survival is variable, and studies have reported means or medians of between about 3 and 10 years. 15,19 At an individual level, patients may survive to the last phase of dementia with severe physical and cognitive impairment but may also die earlier from dementia-related health problems such as pneumonia and intake problems or comorbid disease. [20][21][22] Therefore, prognostication in dementia is difficult.…”

The unmet palliative care needs of those dying with dementia

“…Obstacles to accessing palliative care for those with dementia A plethora of literature exists advocating that people with dementia should have access to palliative care and hospice services (Mitchell et al, 2007;Birch and Draper 2008;Shega et al, 2008;Treloar et al, 2009;van der Steen, 2010;de Vries and Nowell, 2011). However, it is clear from the literature that people with end-stage dementia do not receive adequate or appropriate EoLC for a number of reasons; end-stage dementia is difficult to diagnose and dementia is often viewed as part of the natural ageing process (Phillips et al, 2011;Illiffe et al, 2013).…”

The Effect of Comorbidity Burden on Health Care Utilization for Patients with Cancer Using Hospice

“…We estimate the association between comorbidity burden and the following outcomes: emergency department admission, intensive care unit (ICU) admission, inpatient hospitalization, disenrollment from hospice, and hospital death. In addition, given the known challenges in caring for individuals with dementia, [17][18][19] we separately estimate the prevalence of comorbid dementia in the sample and the association between comorbid dementia and the previously listed outcomes.…”