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

Corinne Pettigrew, Rostislav Brichko, Betty Black, Maureen K. O'connor, Mary Guerriero 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 journalArticlepeer-review

11 Scopus citations

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
Pages (from-to)585-599
Number of pages15
JournalInternational Psychogeriatrics
Volume32
Issue number5
DOIs
StatePublished - May 1 2020

Bibliographical note

Funding Information:
This work was supported by a grant from the Alzheimer's Association (15043228) and by funding from the National Institute on Aging for the following Alzheimer's Disease Centers: Boston University (P30-AG013846); Indiana University (P30- AG010133); Johns Hopkins University (P50- AG005146); Mayo Clinic (P50-AG016574); Massachusetts General Hospital/Harvard Medical School (P50-AG005134); Oregon Health Sciences University (P30-AG008017); Rush University Medical Center (P30-AG010161); University of California, San Diego (P50-AG005131); University of Kansas (P30-AG035982); University of Kentucky (P30-AG028383); University of Pittsburgh (P50-AG005133); University of Washington (P50-AG005136); University of Wisconsin (P50- AG033514).

Funding Information:
This work was supported by a grant from the Alzheimer’s Association (15043228) and by funding from the National Institute on Aging for the following Alzheimer’s Disease Centers: Boston University (P30-AG013846); Indiana University (P30-AG010133); Johns Hopkins University (P50-AG005146); Mayo Clinic (P50-AG016574); Massachusetts General Hospital/Harvard Medical School (P50-AG005134); Oregon Health Sciences University (P30-AG008017); Rush University Medical Center (P30-AG010161); University of California, San Diego (P50-AG005131); University of Kansas (P30-AG035982); University of Kentucky (P30-AG028383); University of Pittsburgh (P50-AG005133); University of Washington (P50-AG005136); University of Wisconsin (P50-AG033514). The authors would particularly like to thank Drs. Susan Mitchell and Jane Givens for their assistance in the initial planning phase of this study. The authors are also grateful to the study participants and to each of the Alzheimer’s Disease Centers for their involvement in this study.

Publisher Copyright:
© International Psychogeriatric Association 2019.

Keywords

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

ASJC Scopus subject areas

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

Fingerprint

Dive into the research topics of 'Attitudes toward advance care planning among persons with dementia and their caregivers'. Together they form a unique fingerprint.

Cite this