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Attitudes toward advance care planning among persons with dementia and their caregivers

Published online by Cambridge University Press:  16 July 2019

Corinne Pettigrew*
Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA
Rostislav Brichko
Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA
Betty Black
Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, Baltimore, MD, USA
Maureen K. O’Connor
Department of Neurology, Boston University School of Medicine, Boston, MA, USA
Mary Guerriero Austrom
Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, USA
Maisha T. Robinson
Department of Neurology, Mayo Clinic, Jacksonville, FL, USA
Allison Lindauer
Department of Neurology, Layton Aging and Alzheimer’s Disease Center, Oregon Health & Science University, Portland, OR, USA
Raj C. Shah
Department of Family Medicine and the Rush Alzheimer’s Disease Center, Rush University Medical Center, Chicago, IL, USA
Guerry M. Peavy
Department of Neurosciences, University of California, San Diego School of Medicine, La Jolla, CA, USA
Kayla Meyer
Department of Neurology, University of Kansas Medical Center, Fairway, KS, USA
Frederick A. Schmitt
Department of Neurology & Sanders-Brown Center on Aging, University of Kentucky, Lexington, KY, USA
Jennifer H. Lingler
Department of Health & Community Systems, University of Pittsburgh School of Nursing, Pittsburgh, PA, USA
Kimiko Domoto-Reilly
Department of Neurology, University of Washington, Seattle, WA, USA
Dorothy Farrar-Edwards
Department of Kinesiology-Occupational Therapy, University of Wisconsin Madison School of Education, Madison, WI, USA
Marilyn Albert
Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA
Correspondence should be addressed to: Corinne Pettigrew, Department of Neurology, Johns Hopkins School of Medicine, 1620 McElderry St., Reed Hall 1, Baltimore, MD 21205, USA. Phone: 410-614-0363; Fax: 410-502-2189. Email:



To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.


Cross-sectional survey.


13 geographically dispersed Alzheimer’s Disease Centers across the United States.


431 racially diverse caregivers of persons with dementia.


Survey on “Care Planning for Individuals with Dementia.”


The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.


Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.

Original Research Article
© International Psychogeriatric Association 2019

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