Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia

Jennifer Gabbard; Devin Johnson; Greg Russell; Shenita Spencer; Jeff D. Williamson; Laurie E. McLouth; Keren G. Ferris; Kaycee Sink; Gretchen Brenes; Mia Yang

doi:10.1177/1049909119895497

Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia

Jennifer Gabbard, Devin Johnson, Greg Russell, Shenita Spencer, Jeff D. Williamson, Laurie E. McLouth, Keren G. Ferris, Kaycee Sink, Gretchen Brenes, Mia Yang

Behavioral Science

Research output: Contribution to journal › Article › peer-review

13 Scopus citations

Abstract

Background: Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed. Objective: To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care. Design: A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time. Results: A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD’s physicians (25% in 2012 vs 45% in 2018; P =.027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD’s prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P =.015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P =.39) felt that they were knowledgeable about PC. Conclusions: Prognostic discussions between caregivers of PwD and the PwD’s physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.

Original language	English
Pages (from-to)	683-691
Number of pages	9
Journal	American Journal of Hospice and Palliative Medicine
Volume	37
Issue number	9
DOIs	https://doi.org/10.1177/1049909119895497
State	Published - Sep 1 2020

Bibliographical note

Funding Information:
The authors would like to acknowledge the Biostatistics Core of the Wake Forest Clinical and Translational Science Institute. Declaration of Conflicting Interests The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article. K.S. was a full-time faculty member at Wake Forest School of Medicine and led the development of the first survey. She is now a full-time employee of Genentech, a member of the Roche Group. Genentech had no role in the conduct of this study. Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded in part by the National Institute of Health (M01 RR007122 and 1RC4 HL104866-01) and Wake Forest Maya Angelou Center for Health Equity. Dr McLouth was supported by R25 CA122061 (PI: Avis). ORCID iD Jennifer Gabbard https://orcid.org/0000-0001-8666-4833

Funding Information:
The authors would like to acknowledge the Biostatistics Core of the Wake Forest Clinical and Translational Science Institute. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded in part by the National Institute of Health (M01 RR007122 and 1RC4 HL104866-01) and Wake Forest Maya Angelou Center for Health Equity. Dr McLouth was supported by R25 CA122061 (PI: Avis).

Publisher Copyright:
© The Author(s) 2019.

Keywords

advance care planning
dementia
older adult
palliative care
prognosis

ASJC Scopus subject areas

Medicine (all)

Access to Document

10.1177/1049909119895497

Cite this

@article{aa79262998194c8eb4e702d7566d6885,

title = "Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia",

abstract = "Background: Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed. Objective: To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care. Design: A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time. Results: A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD{\textquoteright}s physicians (25% in 2012 vs 45% in 2018; P =.027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD{\textquoteright}s prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P =.015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P =.39) felt that they were knowledgeable about PC. Conclusions: Prognostic discussions between caregivers of PwD and the PwD{\textquoteright}s physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.",

keywords = "advance care planning, dementia, older adult, palliative care, prognosis",

author = "Jennifer Gabbard and Devin Johnson and Greg Russell and Shenita Spencer and Williamson, {Jeff D.} and McLouth, {Laurie E.} and Ferris, {Keren G.} and Kaycee Sink and Gretchen Brenes and Mia Yang",

note = "Funding Information: The authors would like to acknowledge the Biostatistics Core of the Wake Forest Clinical and Translational Science Institute. Declaration of Conflicting Interests The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article. K.S. was a full-time faculty member at Wake Forest School of Medicine and led the development of the first survey. She is now a full-time employee of Genentech, a member of the Roche Group. Genentech had no role in the conduct of this study. Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded in part by the National Institute of Health (M01 RR007122 and 1RC4 HL104866-01) and Wake Forest Maya Angelou Center for Health Equity. Dr McLouth was supported by R25 CA122061 (PI: Avis). ORCID iD Jennifer Gabbard https://orcid.org/0000-0001-8666-4833 Funding Information: The authors would like to acknowledge the Biostatistics Core of the Wake Forest Clinical and Translational Science Institute. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded in part by the National Institute of Health (M01 RR007122 and 1RC4 HL104866-01) and Wake Forest Maya Angelou Center for Health Equity. Dr McLouth was supported by R25 CA122061 (PI: Avis). Publisher Copyright: {\textcopyright} The Author(s) 2019.",

year = "2020",

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doi = "10.1177/1049909119895497",

language = "English",

volume = "37",

pages = "683--691",

number = "9",

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T1 - Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia

AU - Gabbard, Jennifer

AU - Johnson, Devin

AU - Russell, Greg

AU - Spencer, Shenita

AU - Williamson, Jeff D.

AU - McLouth, Laurie E.

AU - Ferris, Keren G.

AU - Sink, Kaycee

AU - Brenes, Gretchen

AU - Yang, Mia

N1 - Funding Information: The authors would like to acknowledge the Biostatistics Core of the Wake Forest Clinical and Translational Science Institute. Declaration of Conflicting Interests The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article. K.S. was a full-time faculty member at Wake Forest School of Medicine and led the development of the first survey. She is now a full-time employee of Genentech, a member of the Roche Group. Genentech had no role in the conduct of this study. Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded in part by the National Institute of Health (M01 RR007122 and 1RC4 HL104866-01) and Wake Forest Maya Angelou Center for Health Equity. Dr McLouth was supported by R25 CA122061 (PI: Avis). ORCID iD Jennifer Gabbard https://orcid.org/0000-0001-8666-4833 Funding Information: The authors would like to acknowledge the Biostatistics Core of the Wake Forest Clinical and Translational Science Institute. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded in part by the National Institute of Health (M01 RR007122 and 1RC4 HL104866-01) and Wake Forest Maya Angelou Center for Health Equity. Dr McLouth was supported by R25 CA122061 (PI: Avis). Publisher Copyright: © The Author(s) 2019.

PY - 2020/9/1

Y1 - 2020/9/1

N2 - Background: Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed. Objective: To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care. Design: A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time. Results: A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD’s physicians (25% in 2012 vs 45% in 2018; P =.027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD’s prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P =.015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P =.39) felt that they were knowledgeable about PC. Conclusions: Prognostic discussions between caregivers of PwD and the PwD’s physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.

AB - Background: Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed. Objective: To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care. Design: A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time. Results: A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD’s physicians (25% in 2012 vs 45% in 2018; P =.027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD’s prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P =.015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P =.39) felt that they were knowledgeable about PC. Conclusions: Prognostic discussions between caregivers of PwD and the PwD’s physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.

KW - advance care planning

KW - dementia

KW - older adult

KW - palliative care

KW - prognosis

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JF - American Journal of Hospice and Palliative Medicine

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Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

Access to Document

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