Patients participating in a comprehensive dementia care co-management program were highly involved in advance care planning, high rates of hospice use, and lower acute care visits near the end of life, according to a recent study.1

The study followed 322 persons enrolled in dementia care after July 1, 2012, who died before July 1, 2016. Key findings include the following:

• Nearly all had goals of care documented, and 64% created advance care plans.

• Among those with recorded preferences, 88% indicated do not resuscitate, 48% preferred limited medical interventions, and 35% requested only comfort care.

• Eighty-nine percent of patients requested little artificial nutrition and no feeding tubes.

• Fifty-four percent had no hospital admissions or ED visits in the last six months of life, and only 5% required ICU stays.

• Overall, 69% died on hospice; completion of Physician’s Order for Life-Sustaining Treatment (POLST) form indicated higher likelihood of dying in hospice.

For any patient with impaired decision-making ability, says David A. Fleming, MD, MA, MACP, “the overarching concern is that their values, beliefs, and preferences be recognized and respected to the extent possible when important treatment decisions must be made.”

This is particularly challenging for patients with dementia due to the long timeline that often exists for the patient’s incapacitated state. Yet only about one-third of U.S. adults have completed an advance directive, found a recent analysis of 150 studies involving almost 800,000 people.2

“But the majority have, at some point in their life, commented to loved ones about the kind of life they would want to live in their final days,” says Fleming, co-director and scholar at University of Missouri’s Center for Health Ethics.

It is often “clear and convincing evidence of these discussions,” as represented by loved ones, says Fleming, that preserves the ability to hear the patient’s voice when he or she is incapacitated and now nearing the end of life.

“Structured care management programs offer the opportunity to work closely with both patients and their caregivers over an extended period of time,” notes Fleming. Clinicians gain a better understanding of the medical circumstances and values important to both the patient and caregivers.

“Developing a shared understanding of decisions that are in the best interest of the patient offer the opportunity to maximize care, while minimizing unnecessary hospitalization and treatments that are contraindicated,” says Fleming.


1. Jennings LA, Turner M, Keebler C, et al. The effect of a comprehensive dementia care management program on end-of-life care. J Am Geriatr Soc 2019; 67(3):443-448.

2. Yadav KN, Gabler NB, Cooney E, et al. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Affairs 217:36(7):1244-1251.