Nothing like a front page New York Times article – one on sex that includes a high profile person, the charge that he raped his own wife and the issue of whether people living with dementia have the ability to provide the very charged concept of “consent” to participate in sexual intimacy.
The Iowa story got picked up by a wide range of news services, and in Canada it resulted in a number of radio interviews with geriatricians, lawyers and representatives of the Alzheimer Society of Canada.
The discussions, although interesting, in some fundamental way seemed to almost dismiss a very important component of the argument which is, “Does the usual process and concept of consent as it is used when deciding on a medical treatment, give a substitute decision maker the authority to limit sexual intimacy of a parent living with dementia?”
That is a much more complex question than appeared to be addressed and then presumably answered by the physician involved in the Iowa case: it became a media darling until the trial found the husband charged by his now-deceased wife’s children not guilty of rape, of which he was accused.
While reading about the case initially and before the more widespread media coverage and then final verdict, I kept thinking that the dynamic between the players was clearly the story, almost more than the actual case. It appeared that the legal question was whether a husband and wife can continue to have meaningful and mutually acceptable and satisfying sexual intimacy despite apparent absence of the measure of mental capacity that we usually reserve for consent for medical conditions.
Having recently seen Shakespeare’s King Lear, I was reminded of how children might act out of self-interest, and wondered if the agenda involved in the Iowa case might represent some underlying relationship issue between the children involved, or whether they were acting on an erroneous assumption about the nature of consent to sexual intimacy. That assumption appears to imply that the low score on a standard screening mental status examination would de facto preclude any person with dementia from participating as an assenting partner in sexual intimacy. This is especially important when the interaction is between people known to each other and with whom there was never any evidence of rejection or lack of enjoyment from any component of their observed sexual or interpersonal relationship.
From the reports in the media, it would appear that the attending physician interpreted the low score on the standard mental status examination to mean that the person was incapable, from the legal point of view, of accepting and assenting to sexual intimacy.
The test, which assesses only cognitive activities, fails to address the important emotional and brain-mediated phenomena that are involved in sexual intimacy. Like the effects of one’s favourite music on the brain’s release of pleasure-causing chemicals, sexual activity provides the same release of such chemicals, which is why the human species spends so much emotional and physical energy on stories, pictures and relationships whose subject is sex. It is not new, was not recently discovered and has been a core component of humanity from time immemorial.
What can the ordinary person – whether it’s one whose future might include living with dementia, or a family member who may be involved in decision-making on behalf of their loved one – do to ensure access when suitable to sexual intimacy?
First, do not assume that sexual intimacy might no longer be desirable or possible. Do not react in a negative fashion based on your own belief systems about sexual intimacy if they don’t include the possibility of meaningful sexual participation just because the underlying diagnosis includes dementia (often such as Alzheimer’s disease).
And maybe all living wills (advance directives) should include a statement indicating a wish to be able to participate in sexual intimacy with known and agreed-to partners even when the ability to score highly on the mental status examination is lost.