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Palliative Care for Patients with Dementia: A National Survey

Authors

  • Alexia M. Torke MD, MS,

    1. From the Indiana University Center for Aging Research, Indianapolis, Indiana
    2. Regenstrief Institute, Inc., Indianapolis, Indiana
    3. Fairbanks Center for Medical Ethics, Indianapolis, Indiana
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  • Laura R. Holtz BS,

    1. From the Indiana University Center for Aging Research, Indianapolis, Indiana
    2. Regenstrief Institute, Inc., Indianapolis, Indiana
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  • Siu Hui PhD,

    1. From the Indiana University Center for Aging Research, Indianapolis, Indiana
    2. Regenstrief Institute, Inc., Indianapolis, Indiana
    3. Division of Biostatistics, Department of Medicine, Indiana University, Indianapolis, Indiana
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  • Peter Castelluccio MS,

    1. From the Indiana University Center for Aging Research, Indianapolis, Indiana
    2. Regenstrief Institute, Inc., Indianapolis, Indiana
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  • Stephen Connor PhD,

    1. Worldwide Palliative Care Alliance, London, United Kingdom
    2. National Hospice and Palliative Care Organization, Alexandria, Virginia
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  • Matthew A. Eaton MPH,

    1. From the Indiana University Center for Aging Research, Indianapolis, Indiana
    2. Regenstrief Institute, Inc., Indianapolis, Indiana
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  • Greg A. Sachs MD

    1. From the Indiana University Center for Aging Research, Indianapolis, Indiana
    2. Regenstrief Institute, Inc., Indianapolis, Indiana
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  • 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.

Address correspondence to Alexia Torke, 41 West Tenth Street, HITS Building, Suite 2000, Indianapolis, IN 46202. E-mail: atorke@iupui.edu

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.

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