Corinne Pettigrew1, Rostislav Brichko1, Betty Black2, Maureen K O'Connor3, Mary Guerriero Austrom4, Maisha T Robinson5, Allison Lindauer6, Raj C Shah7, Guerry M Peavy8, Kayla Meyer9, Frederick A Schmitt10, Jennifer H Lingler11, Kimiko Domoto-Reilly12, Dorothy Farrar-Edwards13, Marilyn Albert1. 1. Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA. 2. Department of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, Baltimore, MD, USA. 3. Department of Neurology, Boston University School of Medicine, Boston, MA, USA. 4. Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, USA. 5. Department of Neurology, Mayo Clinic, Jacksonville, FL, USA. 6. Department of Neurology, Layton Aging and Alzheimer's Disease Center, Oregon Health & Science University, Portland, OR, USA. 7. Department of Family Medicine and the Rush Alzheimer's Disease Center, Rush University Medical Center, Chicago, IL, USA. 8. Department of Neurosciences, University of California, San Diego School of Medicine, La Jolla, CA, USA. 9. Department of Neurology, University of Kansas Medical Center, Fairway, KS, USA. 10. Department of Neurology & Sanders-Brown Center on Aging, University of Kentucky, Lexington, KY, USA. 11. Department of Health & Community Systems, University of Pittsburgh School of Nursing, Pittsburgh, PA, USA. 12. Department of Neurology, University of Washington, Seattle, WA, USA. 13. Department of Kinesiology-Occupational Therapy, University of Wisconsin Madison School of Education, Madison, WI, USA.
Abstract
OBJECTIVES: 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. DESIGN: Cross-sectional survey. SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States. PARTICIPANTS: 431 racially diverse caregivers of persons with dementia. MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia." RESULTS: 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. CONCLUSIONS: 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.
OBJECTIVES: 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. DESIGN: Cross-sectional survey. SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States. PARTICIPANTS: 431 racially diverse caregivers of persons with dementia. MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia." RESULTS: 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. CONCLUSIONS: 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.
Entities:
Keywords:
Alzheimer’s disease; advance care planning; care preferences; dementia; end-of-life care; race
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