Ethics of living and dying with dementia

Abstract

The gradual progression of dementia means there has to be a constant search for a reasonable balance between supporting autonomy and ensuring proper representation. Good end-of-life care for people with dementia depends on adequate advance care planning (ACP), starting early in the disease process. Where possible, it involves striving for joint decision-making with the patient and next-of-kin about (future) medical treatment and (future) care. Written advance directives may support representatives of incompetent patients in their role of surrogate decision maker, but the contents of the directive require interpretation in the context of ACP. The concept of ‘palliative care’ offers a (policy) framework for ACP as well as moral guideline for dealing with written advance directives of patients with dementia.