Caregiver Burden and the Impact of Diagnostic Disclosure of Dementia: Why Primary Care Physicians Have a Moral Responsibility to Disclose.

Abstract

AbstractCurrently, the number of individuals affected by Alzheimer's disease is rapidly increasing, expected to reach 14 million in the United States within 30 years. In spite of this impending crisis, less than 50 percent of primary care physicians disclose the diagnosis of dementia to their patients. This failure negatively impacts not only patients but also caregivers, whom dementia patients require to help them meet their needs and who often serve as important decision makers, either as surrogates or as designated healthcare agents for the patient. If caregivers are not informed about and prepared to deal with the challenges they face, their health, both emotional and physical, is put at risk. We will argue that both patient and caregiver have the right to be informed of the diagnosis, as their interests are intertwined, especially as the disease progresses and the caregiver becomes the primary advocate for the patient. The caregiver of an individual with dementia therefore becomes intimately connected to the patient's autonomy in a way few caregivers of other diseases do. In this article, we will show that a timely and thorough disclosure of the diagnosis is morally obligated by the core principles of medical ethics. As the population ages, primary care physicians must see themselves in a triadic relationship with both the dementia patient and caregiver, recognizing that the interests of both are deeply interdependent.