TY - JOUR
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 - 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
UR - http://www.scopus.com/inward/record.url?scp=85077383413&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85077383413&partnerID=8YFLogxK
U2 - 10.1177/1049909119895497
DO - 10.1177/1049909119895497
M3 - Article
C2 - 31854201
AN - SCOPUS:85077383413
SN - 1049-9091
VL - 37
SP - 683
EP - 691
JO - American Journal of Hospice and Palliative Medicine
JF - American Journal of Hospice and Palliative Medicine
IS - 9
ER -