Intimacy and Dementia

By Pamela Atwood, MA, CDP, Director of Dementia Care Services, Hebrew Health Care

(NOTE: The subject of this blog post may be uncomfortable, but we offer it as a way to open real discussions about a subject which needs consideration. Although you will quickly understand my biases through some sarcastic words below, let me disclose that I believe the state and federal governments are wrong in their current positions, and need to be open to discussing these issues in a reasonable debate about aging, health and memory disorders.)

Despite the millions of insensitive jokes, there are serious concerns about sexuality and people with dementia. A Bloomberg article this week highlighted issues of individual rights, facilities’ responsibilities, lost jobs, licenses and more because of complex issues which most people don’t think about or discuss.

At Hebrew Health Care, we have spent many years talking about these subjects, training our staffs and other organizations, and developing guidelines for appropriate responses when people with dementia express their sexuality or seek companionship.

Now, if you don’t work in healthcare, you’re probably thinking, “What?!? Why is my sex life any of your business?” Let me break it down.

1) The government (federal and state surveyors and licensors) charge health care organizations with the responsibility to protect our clients. For instance, if we do not ensure you are hydrated, we have failed to protect you from the risk of dehydration. That may make sense if you have ever seen some facilities or home care situations where neglect is a serious issue. The logical next step is that we need to protect people from all kinds of harm, including harm from themselves and others, and that includes sexual assault. (Now, you’re thinking, “Okay, the first part makes sense, but Pam, isn’t there a difference between intimacy and assault?”)

2) The next issue is, I believe, related to our culture’s biases about sex and youth. Many of us believe our parents only had sex the # of times that there are children in the family. Even very progressive families have a difficult time imagining grandparents, or great-grandparents remaining sexually active. (The one exception is about YOUR sex life as an older person. What we want or expect for our own intimacy in later years is different than what we think about for others.) If it wasn’t for commercials about medications which treat “ED” or “low T” there would still be intense reluctance to even discuss these issues in mainstream media. (I know, I know; you’re now saying to your computer screen, “Pam, you’re making me uncomfortable, but how is this related to nurses losing their licenses? Don’t you in health care know how to deal with these issues?” – so glad you asked.)

3) The only people allowed to have sex are married people. That’s proven fact, right? NO? Huh. Well, according to the State it is. Well, maybe not in society, but in nursing homes. And well, maybe not married, but they both have to be consenting adults. This makes sense really – the problem is really one’s capacity to consent. The most serious issue about sex/intimacy and dementia is consent. How do we determine your right to consent? If you don’t consent, then it’s rape, right?

What if you DO consent – in fact, you seek out the partner – but you have dementia. Are you still consenting? That is the core issue here. There are no good tools to assess one’s ability or legal cognitive capacity to consent. People with serious mental illness, to the point where they have legal guardians to make all of their health and financial decisions, still retain the right to get married and have sex. Older adults with dementia (who have previously had normal sex lives) need to be PROTECTED (according to regulators) from what others would easily otherwise determine to be consensual relations.

This leads to all sorts of grey areas (fifty maybe? – sorry, I couldn’t resist the connection).

A – if two people with dementia kiss, is that assault? And who committed the assault?
B – if one person has dementia and the other doesn’t, and they are married, why isn’t that marital rape (by state definitions – and no, I don’t believe in “implied marital consent”)?
C – if one person has dementia and has forgotten the spouse, and resists the spouse, shouldn’t THAT be an issue to address?
D – what if the residents (one or both with dementia) are so distressed about our preventing the relationship that they have agitation, crying or anxiety as a result? Should we put them on medications to treat these new symptoms?

There are many more issues, and in good facilities these are debated and staffs are trained how to respond with compassion and fair consideration. What do you think? Do you think health care professionals should be determining (along with your adult children or other “decision makers”) whether or not you develop intimate relationships if you get dementia? At what point should others be involved? What are some ways that facilities can protect people from abuse/exploitation but allow people to express their normal human instincts? Let us know what you think (with decency and taste please…).

3 thoughts on “Intimacy and Dementia

  1. If both residents are equally impaired, would they be on “equal footing”? Would an impaired spouse who has consenting sex with someone other than their alive spouse be “allowed” to have sex outside of the marriage relationship, even if the spouse with dementia does not recognize their marital partner? What about the increase in STD’s, especially HIV, in older adults? Is part of the dementia profile include testing for STD’s? (it should).

  2. I am going thru this right now. My FIL has dementia and is in a home. At 92 years of age, we found him stuck on the toilet the other da with no idea how to get off. He couldn’t form words for some time after the event. He needs extra care which is why he is in there. He also has pancreatic cancer and not long to live.

    Last weekend we visited found his door closed, curtains drawn, and another resident in with him. There was also a sign on the door saying “We” wished privacy and would call if “we” needed assistance. The staff are obviously encouraging this and have made notes that they are “engaged”

    My FIL says he’s going to marry her but has no idea of her name, or where she lives (apparently its a few streets away in this village he believes he lives in).

    Now, without dementia he would never have condoned the behaviours that the nursing home staff encourage, in fact he would have been quite vocal about how it was wrong.

    The fact that he emphatically denies any inappropriate behaviours have taken place and calls the eye witnesses liars tells me that he still believes that he would never act this way or that he’s ashamed about it. Either way he’s not publicly embracing his new sex life.

    How does he have the capacity to consent to sex? Its not just the physical (what if the family of the other resident cry rape … If I walked in my mother’s room and found a strange man bouncing on her I’d certainly be having a lot to say about it, what about transmitting disease, what about broken hips and bruises) there is also the question of values. My FIL’s actions are not in keeping with his values. He is no longer capable of rational decision making, only impulse actions.

    When we pay for our loved ones to receive the care we can no longer give, surely the values the resident once held dear and that of his family should have priority over whatever the nursing staff are OK with?

  3. Forgot to add that neither my FIL or his new girlfriend can find each other without staff assistance, in fact neither could physically travel the distance to each other’s roooms without a wheel chair and assistance from staff. We have asked that staff do not allow them to be alone, and keep their association to the public areas of the residence. This has met with resistance.

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