UCSF

Background: Little is known about the provision of palliative care to people with dementia (PWD). Objective: To examine demographic and clinical characteristics of PWD versus nondementia serious illnesses receiving community-based palliative care. Design: Retrospective study of people 65+ receiving an initial consultation from a community-based palliative care practice between September 2014 and February 2018 using registry data entered by clinicians into the Quality Data Collection Tool for Palliative Care. Setting: Large not-for-profit organization that provides community-based hospice and palliative care services. Measurements: Demographics, consult characteristics, advance care planning, and caregiver support. Results: Of 3883 older adults receiving a first palliative care consultation from this organization, 22% (855) had a dementia diagnosis. Compared to those with nondementia serious illnesses, PWD were older with more impaired function; 36% had a prognosis of less than six months. More PWD than those without dementia had a proxy decision maker and documented advance directive. A quarter of PWD were full code before consultation; nearly half changed to some limitation afterward. Symptom characteristics were missing for 67% of PWD due to collection through self-report. Caregivers of PWD were responsible for significantly more activities of daily living than caregivers of people with nondementia serious illnesses. Conclusions: This is the first comparison of a large cohort of people with and without dementia receiving a community-based palliative care consult in the United States. Alternative measures of symptom burden should be used in registries to capture data for PWD. Understanding the unique characteristics of PWD will guide future services for this growing population.