Primary Palliative Care in Dementia

Abstract

Primary palliative care is a fundamental aspect of high-quality care for patients with a serious illness such as dementia. The clinician caring for a patient and family suffering with dementia can provide primary palliative care in numerous ways. Perhaps the most important aspects are high quality communication while sharing a diagnosis, counseling the patient through progression of illness and prognostication, and referral to hospice when appropriate. COVID-19 presents additional risks of intensive care requirement and mortality which we must help patients and families navigate. Throughout all of these discussions, the astute clinician must monitor the patient's decision making capacity and balance respect for autonomy with protection against uninformed consent. Excellent primary palliative care also involves discussion of deprescribing medications of uncertain benefit such as long term use of cholinesterase inhibitors and memantine and being vigilant in the monitoring of pain with its relationship to behavioral disturbance in patients with dementia. Clinicians should follow a standardized approach to pain management in this vulnerable population. Caregiver burden is high for patients with dementia and comprehensive care should also address this burden and implement reduction strategies. When these aspects of care are particularly complex or initial managements strategies fall short, palliative care specialists can be an important additional resource not only for the patient and family, but for the care team struggling to guide the way through a disease with innumerable challenges.

Keywords: Alzheimer disease; Communication; Counseling; Dementia; Palliative care; Prognostication.