Ronald Pies is a professor of psychiatry and lecturer on bioethics and humanities at the State University of New York’s Upstate Medical University and a clinical professor of psychiatry at Tufts University.
When I worked as a psychiatric consultant for several nursing homes, I saw many patients in the later stages of dementia. What often surprised me about these individuals was how much of their humanity and personality remained vividly intact. An elderly man with Alzheimer’s disease could carry on a spirited conversation about his beloved Boston Red Sox. A woman in her 90s with vascular dementia still enjoyed listening to Billie Holiday. Some patients with less severe dementia were capable of making sound financial decisions. Yet one of the myths I sometimes encountered, even among some staff members, was that people with dementia are “globally incompetent” — that they cannot give informed consent of any sort. This view is wrong, and it can cause patients to be denied privileges and pleasures most of us enjoy simply by virtue of our basic humanity.
“Competence,” in legal terms, is the mental capacity to make a decision in accordance with one’s goals, concerns and values. The legal system does not recognize the notion of “global incompetence” or assume that incompetence today will necessarily be present next week. Nor does competence turn on any particular psychiatric diagnosis; merely having schizophrenia or dementia, for example, does not automatically entail mental incompetence. As forensic psychiatrist Robert I. Simon and law professor Daniel W. Shuman state in their textbook, “Clinical Manual of Psychiatry and Law,” “The competence of a patient is determined in reference to a particular issue at a particular time . . . even patients adjudicated incompetent by a court may retain some capacity to express a preference about medical care decisions.” The same is true with respect to everyday choices in a nursing home, such as ordering a meal, requesting a change of roommate, participating in a bingo game or attending a concert.
This issue was prominently in the news this year when a 78-year-old Iowa man was found not guilty of felony sexual abuse of his wife, a dementia patient, for allegedly having sexual contact with her after doctors told him she could no longer consent. Consenting to sexual relations is surely a matter of far greater import and complexity than consenting to attend a concert. But there is no reason in principle why a person with dementia should not be able to consent to sexual relations with his or her spouse. And, as the Alzheimer’s Society in Britain notes, “For many couples coping with dementia, physical intimacy continues to be a rich source of mutual comfort, support and pleasure for many years.”
It is true, of course, that dementia can lead to changes in the way intimacy or sexuality is expressed, and in some cases, a patient’s sexual behavior may become “disinhibited,” or aggressive, owing to dementia. But this is a different matter than the person’s ability to consent to sexual activity — particularly when a spouse is the partner. Indeed, the Alzheimer’s Society goes on to say that, “If you or your partner are in a residential, nursing or shared home, this does not need to mean an end to your sex life together. Talk to the manager or key worker about your need for private time together and discuss how that can be made available to you.”
Nonetheless, the society adds, “It is important to consider whether the person with dementia has the ability to recognize who the other person is and, most important, whether the [person with dementia] has the ability to say no or to express their wishes in other ways.”
Many people would agree that, in the very early stages of dementia, consensual sexual intimacy with a loved one is often beneficial to the afflicted person. Conversely, many would argue that, in the most severe and extreme states of dementia, truly informed consent is difficult, if not impossible, to ascertain. It is in the “gray areas” in between where, in my view, some are too quick to assume that people with dementia can’t give informed consent to sex. Simply because the person may have difficulty communicating verbally doesn’t necessarily mean that she should be declared “incompetent” with respect to sexual intimacy.
A person’s nonverbal behavior, such as smiling or frowning, may be an important dimension to assess with respect to sexual preferences in the context of dementia. But it is an axiom of law that capacity to make decisions is assumed until proved otherwise. Indeed, until a person has been found mentally incompetent by a judge in a guardianship proceeding, or in accordance with due process of law, that person should be assumed to be competent and have the right to make his or her own decisions.
Sexuality is a topic that makes many people uncomfortable even in the best of circumstances. When a patient with dementia is involved, it is understandable that the stakes may be higher and the emotional atmosphere more heated. We all have an interest in protecting people with advanced dementia from sexual exploitation. But we must also recognize that sexuality, and one’s ability to consent to sex, does not mysteriously disappear when the brain is struggling with dementia.