Ethical Waves of the Silver Tsunami: Consent, Capacity, and Surrogate Decision-Making

Abstract

In the coming decades, the United States and other developed countries will continue to experience an increase in their older populations. With this demographic shift, the numbers of older adults with disorders characterized by impaired cognition—from mild cognitive impairment to various forms of dementia—will grow significantly. Already, Alzheimer disease is the sixth leading cause of death in the United States. 1 The impact of these disorders is already immense, particularly for families and other informal caregivers. Without major improvements in treatment, the effects of dementia and other cognitive disturbances would be staggering in their costs to individuals, families, and society. 2 Calls for major research investment into Alzheimer disease and other dementias have become louder—with dire predictions of economic and personal consequences on a grand scale. 3 The importance of these concerns is urgent and undeniable. Another set of concerns has quietly but insistently emerged alongside dementia’s increasing toll, however. These concerns do not have their own national institute or advocacy organization, and often are added to meetings or reports—if added at all—as “extras”orafterthoughts.Ifleftunaddressed,however, they pose a major threat to dementia research and treatment. The intersecting ethical, clinical, and legal implications of dementia present major challenges in helping families navigate the rocky shores of declining or fluctuatingcognition.It is the collisionof theoryand reality: as abstract ethical principles like “autonomy” slam up against impaired judgment and declining self-care; and as financial exploitation of an impaired elder challenges our desire to help patients live independently as long as possible. It is the difficulty of determining what a loved one “would have wanted,” as idealized notions such as substituted judgment confront the daily experience of family caregivers who must make decisions for their relative.