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

Corinne Pettigrew, Rostislav Brichko, Betty Black, Maureen K. O'Connor, Mary Austrom, Maisha T. Robinson, Allison Lindauer, Raj C. Shah, Guerry M. Peavy, Kayla Meyer, Frederick A. Schmitt, Jennifer H. Lingler, Kimiko Domoto-Reilly, Dorothy Farrar-Edwards, Marilyn Albert

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
JournalInternational Psychogeriatrics
DOIs
StatePublished - Jan 1 2019

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Advance Care Planning
Caregivers
Dementia
Terminal Care
African Americans
Living Wills
Hospice Care
Religion
Decision Making
Patient Care
Alzheimer Disease

Keywords

  • advance care planning
  • Alzheimer's disease
  • care preferences
  • dementia
  • end-of-life care
  • race

ASJC Scopus subject areas

  • Clinical Psychology
  • Gerontology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health

Cite this

Attitudes toward advance care planning among persons with dementia and their caregivers. / Pettigrew, Corinne; Brichko, Rostislav; Black, Betty; O'Connor, Maureen K.; Austrom, Mary; Robinson, Maisha T.; Lindauer, Allison; Shah, Raj C.; Peavy, Guerry M.; Meyer, Kayla; Schmitt, Frederick A.; Lingler, Jennifer H.; Domoto-Reilly, Kimiko; Farrar-Edwards, Dorothy; Albert, Marilyn.

In: International Psychogeriatrics, 01.01.2019.

Research output: Contribution to journalArticle

Pettigrew, C, Brichko, R, Black, B, O'Connor, MK, Austrom, M, Robinson, MT, Lindauer, A, Shah, RC, Peavy, GM, Meyer, K, Schmitt, FA, Lingler, JH, Domoto-Reilly, K, Farrar-Edwards, D & Albert, M 2019, 'Attitudes toward advance care planning among persons with dementia and their caregivers', International Psychogeriatrics. https://doi.org/10.1017/S1041610219000784
Pettigrew, Corinne ; Brichko, Rostislav ; Black, Betty ; O'Connor, Maureen K. ; Austrom, Mary ; Robinson, Maisha T. ; Lindauer, Allison ; Shah, Raj C. ; Peavy, Guerry M. ; Meyer, Kayla ; Schmitt, Frederick A. ; Lingler, Jennifer H. ; Domoto-Reilly, Kimiko ; Farrar-Edwards, Dorothy ; Albert, Marilyn. / Attitudes toward advance care planning among persons with dementia and their caregivers. In: International Psychogeriatrics. 2019.
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AU - Pettigrew, Corinne

AU - Brichko, Rostislav

AU - Black, Betty

AU - O'Connor, Maureen K.

AU - Austrom, Mary

AU - Robinson, Maisha T.

AU - Lindauer, Allison

AU - Shah, Raj C.

AU - Peavy, Guerry M.

AU - Meyer, Kayla

AU - Schmitt, Frederick A.

AU - Lingler, Jennifer H.

AU - Domoto-Reilly, Kimiko

AU - Farrar-Edwards, Dorothy

AU - Albert, Marilyn

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N2 - 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.

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KW - end-of-life care

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