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Dementia
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What's this?

Improving the care of people with dementia at the end of life

The role of hospice and the US experience

Joe Shega

University of Chicago, USA, jshega{at}gmail.com

Carla Tozer

Northwestern University, USA, carla.tozer{at}nmff.org

The number of persons diagnosed with and dying from dementia continues to climb. Research corroborate that persons dying from dementia receive poor end of life care including the use of procedures or tests with little or no benefit, un- or undertreated physical and psychological symptoms, and futile care. This is in contrast to the patient's perspective on quality end of life care — adequate pain and symptom management, avoidance of prolongation of dying, achieve a sense of control, relieve burden, and strengthening relationships with loved ones. Hospice, initially developed to improve the end of life care for persons dying from cancer, represents an existing care model that can bridge these differences in experiences and wishes. Expansion of hospice services for persons dying from dementia may be limited by a number of obstacles that require consideration such as difficulties with prognosis, misconceptions by providers and families about the dying process in dementia, reimbursement issues, and regulatory oversight. However, a thoughtful and proactive approach can overcome these barriers, support hospice utilization, and bring about a more humane death for dementia patients and their families.

Key Words: cognitive impairment • death/dying • dementia • end of life • hospice

Dementia, Vol. 8, No. 3, 377-389 (2009)
DOI: 10.1177/1471301209104979
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