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

doi:10.1017/S1041610219000784

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 journal › Article › peer-review

20 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 language	English
Pages (from-to)	585-599
Number of pages	15
Journal	International Psychogeriatrics
Volume	32
Issue number	5
DOIs	https://doi.org/10.1017/S1041610219000784
State	Published - 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

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1017/S1041610219000784

Cite this

Pettigrew, C., Brichko, R., Black, B., O'connor, M. K., Austrom, M. G., Robinson, M. T., Lindauer, A., Shah, R. C., Peavy, G. M., Meyer, K., Schmitt, F. A., Lingler, J. H., Domoto-Reilly, K., Farrar-Edwards, D., & Albert, M. (2020). Attitudes toward advance care planning among persons with dementia and their caregivers. International Psychogeriatrics, 32(5), 585-599. https://doi.org/10.1017/S1041610219000784

@article{94884da24278403da5042158d7a93ef8,

title = "Attitudes toward advance care planning among persons with dementia and their caregivers",

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.",

keywords = "Alzheimer's disease, advance care planning, care preferences, dementia, end-of-life care, race",

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

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{\textquoteright}s Association (15043228) and by funding from the National Institute on Aging for the following Alzheimer{\textquoteright}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{\textquoteright}s Disease Centers for their involvement in this study. Publisher Copyright: {\textcopyright} International Psychogeriatric Association 2019.",

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doi = "10.1017/S1041610219000784",

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Pettigrew, C, Brichko, R, Black, B, O'connor, MK, Austrom, MG, Robinson, MT, Lindauer, A, Shah, RC, Peavy, GM, Meyer, K, Schmitt, FA, Lingler, JH, Domoto-Reilly, K, Farrar-Edwards, D & Albert, M 2020, 'Attitudes toward advance care planning among persons with dementia and their caregivers', International Psychogeriatrics, vol. 32, no. 5, pp. 585-599. https://doi.org/10.1017/S1041610219000784

TY - JOUR

T1 - Attitudes toward advance care planning among persons with dementia and their caregivers

AU - Pettigrew, Corinne

AU - Brichko, Rostislav

AU - Black, Betty

AU - O'connor, Maureen K.

AU - Austrom, Mary Guerriero

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

N1 - 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.

PY - 2020/5/1

Y1 - 2020/5/1

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.

AB - 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.

KW - Alzheimer's disease

KW - advance care planning

KW - care preferences

KW - dementia

KW - end-of-life care

KW - race

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JO - International Psychogeriatrics

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

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

UN SDGs

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