Volume 58, Issue 11 p. 2114-2121

Palliative Care for Patients with Dementia: A National Survey

Alexia M. Torke MD, MS

Alexia M. Torke MD, MS

From the Indiana University Center for Aging Research, Indianapolis, Indiana

Regenstrief Institute, Inc., Indianapolis, Indiana

Fairbanks Center for Medical Ethics, Indianapolis, Indiana

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Laura R. Holtz BS

Laura R. Holtz BS

From the Indiana University Center for Aging Research, Indianapolis, Indiana

Regenstrief Institute, Inc., Indianapolis, Indiana

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Siu Hui PhD

Siu Hui PhD

From the Indiana University Center for Aging Research, Indianapolis, Indiana

Regenstrief Institute, Inc., Indianapolis, Indiana

Division of Biostatistics, Department of Medicine, Indiana University, Indianapolis, Indiana

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Peter Castelluccio MS

Peter Castelluccio MS

From the Indiana University Center for Aging Research, Indianapolis, Indiana

Regenstrief Institute, Inc., Indianapolis, Indiana

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Stephen Connor PhD

Stephen Connor PhD

Worldwide Palliative Care Alliance, London, United Kingdom

National Hospice and Palliative Care Organization, Alexandria, Virginia

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Matthew A. Eaton MPH

Matthew A. Eaton MPH

From the Indiana University Center for Aging Research, Indianapolis, Indiana

Regenstrief Institute, Inc., Indianapolis, Indiana

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Greg A. Sachs MD

Greg A. Sachs MD

From the Indiana University Center for Aging Research, Indianapolis, Indiana

Regenstrief Institute, Inc., Indianapolis, Indiana

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First published: 04 November 2010
Citations: 37
Address correspondence to Alexia Torke, 41 West Tenth Street, HITS Building, Suite 2000, Indianapolis, IN 46202. E-mail: [email protected]

The study was presented in part at the Annual Meetings of the American Geriatrics Society, April 29–May 2, 2009, Chicago, IL and May 12–15, 2010, Orlando, FL and the Society of General Internal Medicine, May 13–16, 2009, Miami Beach, FL.

Abstract

OBJECTIVES: To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC.

DESIGN: Telephone and Web-based surveys.

SETTING: U.S. hospice and PC programs from the National Hospice and Palliative Care Organization's program list.

PARTICIPANTS: Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC.

MEASUREMENTS: A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC.

RESULTS: Ninety-four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end-of-life care.

CONCLUSION: Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.