Living with Dementia: Caregiver Perspectives

About four million Americans currently live with Alzheimer’s disease (AD) or related forms of dementia. Because the disease process impairs language, insight, and judgment, family members become “caregivers.” These caregivers, either in part or in full, often make decisions on patients’ behalf. This Issue Brief summarizes a series of studies that describe how caregivers make decisions for AD patients, and caregiver perspectives on the quality of life for relatives with AD

Measuring Decision-Making Capacity in Cognitively Impaired Individuals

Cognitive and functional losses are only part of the spectrum of disability experienced by persons with Alzheimer\u27s disease and related dementias. They also experience losses in the ability to make decisions, known as decision-making capacity. Researchers have made substantial progress in developing a model of capacity assessment that rests upon the concept of the 4 decision-making abilities: understanding, appreciation, choice and reasoning. Empirical research has increased our understanding of the effects of late-life cognitive impairment on a person\u27s ability to make decisions. This review examines studies of the capacity to consent to treatment, research and the management of everyday functional abilities. The results illustrate the clinical phenotype of the patient who retains the capacity to consent. They also suggest that measures of capacity can improve how researchers measure the benefits of cognitive enhancements and stage dementia

Voting by Older Adults with Cognitive Impairments

This presidential election year reminds us of the importance of each vote and of the integrity of the electoral process. Recent elections have been decided by very narrow margins. In this context, the voting rights and capacity of persons with dementia warrant attention. About 4.5 million Americans currently live with dementia. Whether these citizens should vote raises a host of ethical, legal, and practical issues. At what point does someone lose the capacity to vote, and who decides? What kinds of assistance should these voters get, and who should provide it? And how can the voting rights of residents in long-term care facilities be protected

How Are We Going to Live With Alzheimer\u27s Disease?

Alzheimer’s disease confronts us with an ethical challenge: How do we live with dignity and quality of life in the face of progressive disability and, ultimately, death? Patients’ cognitive and decision-making impairments often make them unable to answer this question, and when professionals who provide services for older adults fail to recognize and accommodate these impairments, patients suffer. Patients and their caregivers need a health care system that fosters caregiving so that each will live with dignity and well-being. Another way to answer this question is to discover treatments that prevent disabling cognitive impairments, but this strategy will require expanding the Alzheimer’s label to include people who do not have dementia or who are even cognitively normal. Controversies are likely to occur over how best to describe the Alzheimer’s problem, measure the value of early diagnosis and treatment, and live with a brain at risk

Assessing the Capacity to Make Everyday Decisions: A Guide for Clinicians and an Agenda for Future Research

Assessing the capacity of patients to make decisions about their functional problems has substantial ethical, clinical, and financial implications. The growing population of older adults with cognitive impairment either in the community or in long-term care and medical facilities increase the importance of adequately assessing this capacity. This review examines the current approaches to making this assessment, demonstrates how they are incomplete, and considers potential approaches for improving these evaluations. Future research should develop and validate methods to identify patients with impaired capacity to make everyday decisions. These data will supplement functional, cognitive, and medical assessments