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Thursday, July 25, 2013

NPR: Can Elderly Patients With Dementia Consent To Sex?

Audio File: http://www.npr.org/templates/story/story.php?storyId=204580868

Excerpt: "As you can imagine, some families wouldn't want to think of their mom who was married for 40 years having a relationship with some man they've never met, particularly if, as happens sometimes, she's still married. But some families do come around to this. Maybe the most famous case of that is former Supreme Court Justice Sandra Day O'Connor, whose husband had dementia and took up with another woman in the home he was living in. And Justice O'Connor decided that this was good for him, that it made him happy. And she wanted him to be happy.

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Bryan Gruley, reporter-at-large for Bloomberg News, talks with Melissa Block about his two-part feature story on sex and nursing home patients with dementia. One key question is whether those with dementia are truly able to consent. How nursing homes deal with this, or not, is increasingly becoming an issue as baby boomers enter nursing homes.
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ROBERT SIEGEL, HOST: This is ALL THINGS CONSIDERED from NPR News. I'm Robert Siegel.
MELISSA BLOCK, HOST:
And I'm Melissa Block.
Do elderly patients with dementia have the mental capacity to consent to sex? When does consensual sex turn into the abuse of someone who's not mentally competent? And how should elderly care facilities deal with those questions? Those are among the issues raised in two articles running on Bloomberg News. They're written by reporter Bryan Gruley, who joins me now. Bryan, welcome to the program.
BRYAN GRULEY: Thanks for having me, Melissa.
BLOCK: Your first story, Bryan, looks at court documents from a case in Coralville, Iowa. It's from a 120-bed nursing home called Windmill Manor. And as you described it, two patients, both with dementia, were found having sex. The man was 78, the woman was 87. What was the outcome? What happened?
GRULEY: The result of this event was three and a half years of regulatory prosecution, in effect, private litigation. The administrator of Windmill Manor was fired. The director of nursing was fired. The people were separated. The man was discharged from Windmill Manor so that his family had to drive nearly two hours to visit him instead of a mere few moments.
I think it ended badly for everybody involved. And I think it shows that with the baby boom generation growing up and going to be entering these facilities, and there'll be more people with dementia, that nursing homes, the families, the people who deal with these people aren't really prepared to do it.
BLOCK: The nursing home didn't think this was a case of abuse. They said there was no injury or evidence of force. What do we know about the woman and how she felt about it?
GRULEY: We don't really know. In the hundreds of pages of documents I studied, I couldn't find anywhere where they actually asked the man or the woman about what happened. Now they both have dementia, so maybe their answers would have been somewhat unreliable, but I couldn't find evidence there that they asked. Maybe I missed it. But the night that the nurses stopped the sex and removed the man, the woman responded by kicking, screaming and biting the nurses.
And the documents show that when she was with this gentleman, that she was calmer, that she was happier. And throughout this long process that generated hundreds of pages of documents at three different regulatory agencies, again and again, the question arises: did either of these people - both of these people have the ability to consent because they both had some level of dementia? The man's was, according to the documents, a little less sharp than the woman's.
BLOCK: And that is, of course, the really thorny issue here because in your story you explain that according to the documents - the court documents, the woman called the man she was with by her husband's name. So even if the sex may not have been by force, is she really consenting if she is so confused about whom she's with?
GRULEY: Occasionally, she did that. And this comes up frequently in the academic literature about dementia and people having sex who have dementia. And there are two schools of thought about this. One is that, you know, if they're that confused, how can they have the capacity to consent? And another school of thought is that these are people who've become, to some degree, somebody else.
They've lost mental connections with people they loved, with much of their past, but that doesn't rob them of their desire and their need for touching, for intimacy. Just because they confuse who they're with, that doesn't mean it doesn't give them some pleasure at a time in their lives when pleasure comes at a premium.
BLOCK: Well, your second story for Bloomberg focuses on a place that has apparently broken with industry practice and encourages sex and intimacy among its elderly residents. That's the Hebrew Home in Riverdale, New York. What did they tell you about why they have that approach?
GRULEY: The president and CEO of the Hebrew Home at Riverdale, Dan Reingold, has said to me a couple of times: My biggest problem is my residents aren't having enough sex. And he doesn't mean that in a joking way or that he wants to encourage lasciviousness. What he means is that he believes none of the great programs they offer their residents there can do anybody as much good as having a romantic relationship where somebody wakes up in the morning and can't wait to see their boyfriend or their girlfriend.
BLOCK: And he's including patients with dementia...
GRULEY: He's including them all. The Hebrew Home, they wrote a policy back in 1995 that was designed to encourage sex and intimacy by training staff to deal with it and also to deal with it when it became uncomfortable or dangerous to people.
BLOCK: Is the Hebrew Home essentially saying that no matter how strong your dementia is, you are able to consent to sex? I mean...
GRULEY: No.
BLOCK: ...they're drawing no boundary at all?
GRULEY: No, no. They believe there are people who don't have the ability. But rather than presume, as many health care facilities do, that somebody who has dementia cannot consent no matter what, they presume the other way. They presume the person has the capacity, and then they observe as the relationship appears to be developing. They ask questions. They want to make sure that this person - both persons are comfortable in the relationship.
BLOCK: And what about if family members don't agree with that? What do they do then?
GRULEY: That's a great question, Melissa, because families get involved. And as you can imagine, some families wouldn't want to think of their mom who was married for 40 years having a relationship with some man they've never met, particularly if, as happens sometimes, she's still married. But some families do come around to this. Maybe the most famous case of that is former Supreme Court Justice Sandra Day O'Connor, whose husband had dementia and took up with another woman in the home he was living in. And Justice O'Connor decided that this was good for him, that it made him happy. And she wanted him to be happy. So, I mean, every situation would be different.
Obviously, if the family is adamant and, you know, in some cases, a family might threaten litigation, well, that changes the ballgame to some degree. But again, it comes down to who are these people now? Philosophers have argued about this as to whether a person with dementia should be judged according to who they were before they had dementia. Would they have done this before they had it? Or are they really somewhat of a new person who should be allowed to make new choices that makes that new person happy?
BLOCK: Bryan Gruley of Bloomberg News, thanks very much.
GRULEY: Thank you, Melissa.
BLOCK: Bryan's stories for Bloomberg about sex among nursing home patients with dementia run today and tomorrow.
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