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

Research output: Contribution to journalArticlepeer-review

14 Scopus citations


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 languageEnglish
Pages (from-to)683-691
Number of pages9
JournalAmerican Journal of Hospice and Palliative Medicine
Issue number9
StatePublished - Sep 1 2020

Bibliographical note

Publisher Copyright:
© The Author(s) 2019.


  • advance care planning
  • dementia
  • older adult
  • palliative care
  • prognosis

ASJC Scopus subject areas

  • General Medicine


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