COMMENTARY

Sex and Dementia: Is it Love or Assault?

Arthur L. Caplan, PhD

Disclosures

April 16, 2015

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Hi. I'm Art Caplan, from the Division of Medical Ethics at the NYU Langone Medical Center.

Not long ago, a 78-year-old man in Iowa, a representative for that state in the House of Congress, was arrested and charged after being accused of having sex with his wife.[1] That may seem startling and unusual, but the circumstances make it clear why this has happened, and they raise some important ethical issues that physicians and healthcare teams are going to have to wrestle with.

This gentleman had remarried late in life to a woman also in her 70s, and they spent a lot of time together and loved each other and things were fine. But, sadly, she was diagnosed with Alzheimer disease. That forced her ultimately to go into a nursing home. And the husband did not leave her or divorce her, and it was clear that he still wanted to maintain intimacy with her.

During one of his visits to his wife in the nursing home, her roommate said she heard "sexual' noises" and reported that she thought he probably had had sex with his wife.[2]

His daughter-in-law wanted that followed up and examined. The daughter-in-law was very upset. The ethical issue is not when does "no" mean "no," but rather, what if you can't say "yes"?[2]

This issue is a growing problem for all of us in the United States because Alzheimer's-one of our most feared and dreaded diseases-is starting to afflict more and more people. We're starting to be able to diagnose it with better tests. And soon, I think, we'll have some better scanning information about early-onset Alzheimer's even before symptoms occur.

Because Alzheimer's is becoming so prevalent, physicians have to come up with a better plan for managing the disease. One sad fact is that a lot of doctors don't feel comfortable revealing the diagnosis, or suspicion, of Alzheimer's to their patients.[3] In fact, a 2008 analysis showed that only 40% of doctors regularly disclose the diagnosis of Alzheimer's to their patients.[4]

It is certainly acceptable to say that you don't want to deliver bad news all at once. With a disease for which we don't really have any current cures, it may take a few visits-information being given out over time-to let the patient know what's going on.

I do strongly believe that patients do need to know the diagnosis. They're not going to know how to make plans for the time they have. Their family members have to make arrangements and decide how they want to manage. And, as we've seen with the case of the gentleman under arrest, there are going to be some important questions about what life will be like when competency begins to fail.

Could a person and should a person say, while they're still competent but suspected of having Alzheimer's, "Look-here is what I want you to play on television. And this is the relationship I want to have with my husband: If he still wants to have relations with me, then that's great. Let him. Let's do that in a private area-let's make sure we make some provision for that. If it's something that would hurt me or cause me to be physically harmed in some way, if I become fragile or develop fragile bones, then we should not allow that to happen."

That discussion, as tough as it is, is something that should take place before a person becomes incompetent. People need to know the truth about Alzheimer's, and they need to be able to plan for it.

They need to decide the following:

  • What do they want to do in terms of their relationships with their loved ones?

  • Who is going to take care of them?

  • Where would they want to go?

  • How do they want to manage their end-of-life care should they get illnesses or diseases that threaten their ability to live? Do they want aggressive treatment, or don't they?

  • Would they want to be in experimental trials?

  • Many new drugs are starting to appear, we're hopeful for at least slowing some of the symptoms and dysfunction of Alzheimer's. Do they want to be given those, or do they not want to be involved with that? Does cost matter?

So there is a lot to talk about. We're not going to be able to talk about any of this unless you get to the point where you're comfortable, somehow, with disclosing and discussing that diagnosis.

As I say, just dumping the information on a person who is fragile may not be the way to go. Maybe the talk has to happen with other family members or a trusted friend present. Maybe you want to urge the person to come back for a second visit, saying "I want to reconfirm something," just to make sure they're not overwhelmed.

And you've got to be ready to support them and counsel them about steps that they need to take and things they need to start thinking about-everything from sex to where they live, to how they are going to have their medical care given or not given in the time that remains for them.

This is Art Caplan at the Division of Medical Ethics at NYU. Thanks. Please leave your comments below.

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