The Ethics of Dementia Care
The Harvard Medical Dictionary of Health Terms defines dementia as a loss of brain function that worsens over time and affects memory, thinking, behavior, and language. Dementia affects nearly 55 million individuals around the world with around 10 million new cases each year. These numbers are also expected to increase in the future as the population ages. Although dementia is a single term, it encompasses a variety of diseases with many causes. One of the leading causes of dementia is Alzheimer's disease which accounts for more than half of all dementia cases. It is no surprise that much research is being conducted to learn the cause of this affliction as well as potential treatments. Research surrounding Dementia is not just the job of scientists, however. Bioethicists and philosophers also ask and attempt to answer a number of questions that can greatly impact the care for people with dementia. Issues of research ethics, informed consent, autonomy, and more philosophical questions of personhood and dignity all coalesce into the ethics of dementia care.
One of the key issues that challenges dementia care is the use of advance directives (ADs). Advance directives are legally binding documents where individuals can specify the care they wish to receive, or not receive, should they not have the capacity to make decisions in the future. For example, a person may write in their advance directive that should they lose consciousness and be required to stay in an intensive care unit (ICU), they would rather die peacefully than live in the ICU. The medical staff must then respect this decision and not move the patient to the ICU or move them out of the ICU should they have already been admitted there. Of course, many complicating factors are at play, and this scenario hardly represents the nuance that is inherent to most cases. Patients with dementia (PWD) throw a wrench into this system because the attitudes, preferences, and desires of the patient before they had dementia may differ substantially when they do have dementia, and particularly, late stage dementia. What if a patient asks in their advance directive that they not be resuscitated should they go into cardiac arrest after developing dementia? More seriously, what if a patient asks in their advance directive that they be euthanized should they develop late stage dementia, as one Dutch patient did in 2016?
Bioethicists and philosophers remain divided as to what should be done in such situations.