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

The sample was mostly white and college-educated, so the findings may not apply to caregivers with lower education or different racial backgrounds. The study was done at one academic medical center geriatric clinic, so other care settings may differ. The survey was not validated, so the wording may have affected answers. The response rate was 55%, and caregivers with heavier or lighter burden may have been more or less likely to answer. The 2012 and 2018 groups were different caregivers, not the same people followed over time, so apparent trends cannot show change caused by clinicians or services. Some questions were asked only in 2018, including caregiver stress, advance care planning discussions with the patient, and advance directives, limiting comparison over time.

One author led development of the first survey and is now a full-time employee of Genentech, a member of the Roche Group. The paper states Genentech had no role in the conduct of the study. No funding source is stated in the supplied text.

Do not read the higher 2018 recognition of terminal dementia as proof that clinicians had improved communication. The 2012 and 2018 caregivers were separate samples from one clinic, the survey was not validated, and many still did not know prognosis or palliative care.