Sexuality in Dementia

I'm going to be real here... The reality of the situation is that I have avoided blogging about this topic for months because it such a difficult topic. It's not difficult because I find the topic uncomfortable. I am not a prude, per se. We are adults. And by now, you all know I'm all about tacking tough topics of dementia care. The reason I've avoided writing about the topic is because there is absolutely no way that I can wrap this topic up in 750 words with a pretty little bow on top. No way, it's much too complex for that. 

To start, "Sexuality in Dementia" encompasses such a wide variety of issues...foul/sexual language, suggestive comments, touching self/others, exposing self/others, masturbation, requesting sexual acts, and extra-marital relations when the person living with dementia no longer recalls they have a living spouse/partner and have found a new companion... to name a few. 

See what I mean? That's quite a variety of situations and there is certainly no One Size Fits All approach that will help care partners address this complex set of situations. Additionally, these situations are often accompanied by intense emotions from all around; each person bringing their own thought/feelings about the issue. So, how do I even attempt to address this in a blog, knowing that most blogs average 750 words? 

I am going to start with very high level overview of this very complex topic. First, I'd like to start with what shapes our views on this topic - from limited research, cultural values, lack of policy in senior living institutions, personal beliefs, absolute lack of training for senior care providers on the topic, and finally... age-ism. What do I mean by Age-ism? I'll share an experience from my own household as an example... My husband has followed and supported my career - dedicated to dementia care - for the past 15 years. He is a football coach and the dementia world is foreign to him in many ways. With that said, he is supportive and caring and appreciates my work. Last year I was preparing a Continuing Education seminar on this topic and printed a large stack of documents/articles for preparation. One day, he thumbed through the stack of articles on the desk of my home office and was shocked at the subject of my research. Shocked at the subject overall – sexuality and dementia. The topic seemed nonexistent or taboo to him.

So, let's start there with this blog. Let's kill the myth that we lose sexuality as we age. As human beings we are sexual beings. That does not change because we age, or even when we experience brain change with dementia. Human beings - regardless of age and medical condition - seek love, touch, companionship, intimacy... which leads me to another important question for you to consider - what is intimacy? 

Intimacy is a term that has so many definitions. Some people immediately consider a narrow definition of intimacy, as a physical sexual act. While this is one aspect, intimacy can also encompass emotional, mental and spiritual connection. As human beings, we need connection. Individuals with dementia are not an exception to this human need. 

When professionals or families reach out to me about “inappropriate sexual behaviors” exhibited by someone living with dementia, they usually start with a very broad statement with no real description of the issue. The conversation usually starts like this, “Rebekah, we need your help. We don’t know what to do about these sexual behaviors from Mr/Ms X. We have got to get this under control.” At which time, I fire back a series of questions – what exactly is happening? In what context- when, where, how often, what’s happening before, etc? Is there any pattern in the occurrence/frequency? What, if any, risks are present? For whom is this problematic – is this really a problem or is it just making the staff/family uncomfortable because it doesn’t fit their idea of what the senior should do or not do?

From here we can start to unpack what is going on. Often, we will discover that these behaviors that we quickly labeled “inappropriate” result from misinterpretation of nonsexual acts from care partners. Example: Mr. Smith, 81-year-old man with moderate dementia, living in an assisted living. He’s sitting in his room, minding his own business one morning, when a beautiful young aid walks into his room. She leans over Mr. Smith, with her v-neck top dipping down just enough to show a bit of her chest and says “It’s time for your shower”. Mr. Smith thinks ‘that’s the best offer I’ve had in a while’ and reaches out to touch her breast. Now that aid, who is not dementia aware, is going to run to her supervisor and report that he touched her inappropriately. I am certainly not suggesting that we allow individuals living with dementia to do whatever they want to those around them. I’m simply suggesting that we consider situations from their point of view when assessing – and trying to curtail – what we consider inappropriate sexual behaviors.

Another issue that I hear often is when a person living with dementia undresses outside the privacy of their own room/home/etc. This may result from a need to use the bathroom, uncomfortable (itchy, tight, stiff) clothing, being too hot or a lifelong preference of minimal attire. If we take a closer look at the situation rather than labeling the person as an exhibitionist, we may find a perfectly logical explanation for the behaviors. The challenge is that often the person with dementia can no longer communicate this with us verbally, so we must learn to interpret their behaviors as an expression of an unmet need. We must learn to see with dementia eyes and hear with dementia ears – meaning that we need to see the situation from their perspective and try to determine if there is an unmet need that is leading to this behavior.

Another possible cause of ‘inappropriate sexual behaviors’ is changes that occur in the frontal lobe of the brain. Our frontal lobes function as our social filter, inhibition and judgement center. I often describe the frontal lobe in this way – when I get up in the night to use the restroom and I hit my pinky toe on the side of the bed… you know, the little pinky toe that it really hurts to hit… there is a word that comes out of my mouth. Use your imagination here. On the other hand, when I’m at church on Sunday, exiting the pew and I hit my little pinky toe, the one it really hurts to hit, on the pew… there is also a word that comes out of my mouth. Are you surprised to hear that the word is different in each of these scenarios? Probably not, because we all have that social filter that recognizes what words/behaviors/etc are appropriate when and where. So, on Sunday morning at church when I hit my toe, I say “sssssshhhhhhhhiiiiii- - - ooooooooooooottt!”

Now, back to Mr. (or Ms – this is absolutely not limited to males) Smith has dementia and brain change is happening in the front part of his brain. Mr or Ms Smith has always been a sexual being, as all are humans, yet he/she has learned when and where certain behaviors are appropriate. Yet with the brain change impacting that part of the brain, that awareness of ‘appropriate’ versus ‘inappropriate’ decreases and behaviors change as a result of hundreds and thousands of brain cells dying.

Again, please understand that I am not trying to make excuses for behaviors that may feel assaultive or uncomfortable for others. I’m am simply suggesting that we look more closely at a situation and determine what is really going on with the person living with dementia before we panic, label them unfairly or worse yet reach for medications which are used off-label, show extremely limited efficacy in research and often have adverse side effects.

If you are wondering, we are already over 1200 words and counting and we are literally on the tip of the iceberg of this topic. In an effort to bring a reasonable conclusion to this topic for now, I urge anyone dealing with these issues to respond not react. Treat the person with sensitivity, empathy and dignity. Consider the situation from their point of view, recognizing how their brain is changing and how they interpret the world around them differently.

As always, I hope you have found this discussion helpful. Please comment below or email me at rebekah@agingcarecoach.com if you would like to discuss further.

Take good care, Rebekah

Rebekah Wilson, MSW

Aging Care Coach