Slate contributor Melinda Henneberger was online at Washingtonpost.com to chat with readers about how to handle sexual relations among elderly family members with dementia. An unedited transcript of the chat follows.
New York: The story you report—"An Affair to Remember"—is not as uncommon as you might think. I have myself as caregiver—not only to parents in a fairly upscale retirement/continuing care communities, but to a host of aunts and uncles as well—have witnessed at least five instances/cases of such love affairs among residents. Sometimes both parties had some form of dementia, and at other times only one, but the ending was always the same: Management forced them apart and one of the "offending" parties was whisked away, never to be seen again. It was always done with terrible cruelty.
Part of the problem, I think, has to do with the enormous veneer of respectability promoted by these often for-profit institutions, and the pressure it puts on the elderly to "behave" and fall in line. They have to keep the picture "pretty." If we had communities in which the instincts of all residents were respected, and ways were found to give even those suffering from dementia privacy, respect and the help and support they needed, perhaps the outcomes would be different.
And yes, sons and daughters add to that pressure to keep their parents "in line" because they fear their parents being ejected. Even in your reporting, there is the aura of a kind of voyeurism ... a tattle-tone. Astonishment and a bit of horror. What a pity.
Melinda Henneberger: My only horror and astonishment was in the outcome, the way this couple was treated. Maybe we need to look again at what our definitions of "pretty'' and "respectability'' are, and think again about who we are trying to protect, and from what.
New York: This story is unbelievably tragic. May Bob's son's children be kinder to him than he was to Bob.
Melinda Henneberger: Yes, it is tragic, perhaps especially because I don't think Bob's son ever intended to hurt his father. But it's also a situation we can avoid with some advance planning and important—even if uncomfortable—family discussions. The woman who runs the assisted living facility where Bob and Dorothy fell in love has been clear now with her own grown daughter that she never wants to be in that position, for example, so some good did come of this.
New York: As a lawyer who represents many elderly people, some of whom eventually have gone to live in assisted living facilities or nursing homes, I have seen this issue arise several times. The key issues are the perspective of staff and the religious orientation of the facility. Most of the "children" seem okay with the relationships—and they uniformly do seem to vastly improve the spirits, outlook and well-being of the couple—unless there is an element of unwanted attention.
The most difficult problem seems to be that—at some higher levels of dementia—a person often will welcome (or reject) any attention, and it is impossible to know whether a person suffering from dementia might not actually want to go "all the way." So there is the peculiar issue of "date rape," in the sense that an excited elderly person could take sex to a higher level than the partner expected or was ready for. In order to monitor this, staff would really have to become professional sexologists—but they might think of themselves in the less glamorous role of voyeurs.
Melinda Henneberger: Yes, I can see that informed consent really is a complicated issue. It's certainly unrealistic to think that every worker in such a facility would be a trained counselor—especially given the appalling overall conditions and low wages in a lot of these places. But ideally there should be someone on staff with the sensitivity and training to help residents and families work through these issues.
Richmond, Va.: Do you think this is indicative of our culture's lack of respect for the elderly? Do you think that this kind of situation occurs in other countries with better track records of elder care and reverence (i.e. Japan)?
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