Dementia, Disability, and Advance Medical Directives

By Rebecca Dresser

pencil drawing of a brain Anyone fortunate enough to live beyond middle age faces a risk of developing dementia. Dementia is a widely feared disability. People often say they wouldn’t want to live if they developed the condition.  

Experts in law and ethics praise advance directives, or instructions to follow on behalf of patients, as a tool giving people control over the life-sustaining medical care they later receive as mentally impaired dementia patients. Some advance directive supporters also want the law to recognize advance requests to withhold ordinary food and water in the late stages of dementia. And some argue that the U.S. should follow the Netherlands in allowing doctors to give lethal drugs to people who made advance directives asking for assisted death if dementia makes them unable to live at home or to recognize their loved ones.  

Yet few advance directive advocates acknowledge how complex and difficult dementia care planning can be. People usually live for many years after a dementia diagnosis, years in which meaningful and satisfying life can continue. People can’t be sure how they will fare as dementia patients, but medical experts and caregivers say that patients often adapt to an existence that is very different from the one they valued at an earlier time.

To counter pervasive negative stereotypes about life with dementia, people engaged in advance care planning need accurate and balanced information about the condition. This includes not only facts about dementia symptoms and care options, but also about the personal experiences of people living with dementia. Many people have written and spoken about the ups and downs of living with dementia, and this literature should be part of the information advance planners consider.  

Even well-informed people don’t necessarily make good choices about future dementia care. Research on what psychologists call “affective forecasting” shows that people often overestimate the negative impact that events like illness and injury would have on their well-being. Many people experiencing new disabilities adjust to their changed circumstances, enjoying a higher quality of life than non-disabled people think they do. Mistaken quality-of-life judgments could taint the choices people make about future dementia care.    

The problems I describe are serious, for advance directives can authorize death-producing measures for dementia patients still capable of enjoying their lives.  Such patients may have mental disabilities, but they can still value and appreciate the lives that they are leading. In many cases, patients will have forgotten the values and desires that motivated their advance directive requests. Their concerns will have changed, and their words and behavior will express different preferences than they had before.

Cultural attitudes about the value of life with disabilities have evolved in recent decades. Authorizing decisions to end the lives of dementia patients in the absence of clear threats to their existing well-being would conflict with generally accepted views of our obligations to vulnerable people. Protecting such patients requires medical professionals and families to perform a careful evaluation of how different choices would affect patients, and to reject the options that would be painful or distressing to them. The shortcomings of advance decision-making, together with our moral and legal duties to safeguard the interests of people living with disabilities, support setting limits on the power of advance directives to control the care dementia patients receive.