I think it is past time for me to address the elephant in the room. This is one thing that most of us are reluctant to talk about normally and even more so when dementia is involved. This elephant is sex. If discussing sex issues offends you, please stop here.
We are all sexual beings and learn, even as small children, that boys and girls are different. This progresses eventually into interest in sex. As we mature, we learn how and when to channel the sexual drive. Society and its norms teach us what is appropriate and what is not, as well as when it is appropriate and not.
Surprisingly, I found that there are a lot of studies out there regarding sexuality and dementia. When you have FTD, social filters are absent or greatly diminished. Studies vary and I found sources suggesting that sexual issues develop for anywhere in 7% to 25% of diagnosed cases. I suspect it is higher than that because it is a subject that many are squeamish about discussing.
What is interesting is that sexual issues run the complete gambit. The person with FTD may want nothing to do with sex or go in the opposite direction of thinking about sex nearly all the time. It should be of no surprise that the difference may lie in which area of the brain is being affected.
Those who have little or absolutely no sexual desire may relate to testosterone levels. Sexual appetite is controlled by the amount of testosterone in both men and women. These levels tend to decrease as we age, In dementia they can be reduced even more as more and more brain cells are destroyed. the lower the testosterone levels may become. In addition, many of the prescription medications that are often prescribed to control symptoms of FTD can affect the libido in either direction. Some can raise the desire and others can eliminate it.
Most of those with hypersexuality tend to be those diagnosed with bvFTD. Researchers at the University of California in San Francisco (UCSF) conducted a study to determine if hypersexual behavior is related to other "reward seeking" behaviors. This would include overeating and the craving for sweets or alcohol. They found that in people with FTD, there is a loss of cells in the putamen and pallidum, which are areas of the brain located on the right side of the brain (temporal lobe). This area of the brain is known to be responsible for reward seeking behaviors and the link to it includes hypersexuality.
This leaves little doubt that hypersexuality is caused by FTD and an increased interest in sexual things can be as strong as our craving for sweets and is very difficult, if not impossible, to be controlled by the person with FTD. As much as I hate the expression, in hypersexuality as well as most FTD symptoms, it is the disease controlling it, not the person with the disease.
Again, I will lead with the easier subject to address. The lack of sexual interest in someone with FTD affects the loved one, who is most likely the caregiver, more than themselves. If sexual relations were a regular part of their life together, this can leave a huge void in their relationship. Without this loving connection, the caregiver can feel unloved and frustrated. The result may be the same for the person with FTD because they remember what their sexual interest was prior to FTD. They may miss that assurance of love and comfort.
Hypersexuality is more complex. It can manifest in many different behaviors. Some have what are considered normal interests in sex but they fail to recognize when talking about it or acting on it are appropriate. Others develop obsessive desires and the thoughts of sex are nearly constant. One long-time advocate for FTD summed it up by saying "I now have the libido of a sixteen year old and the mouth of a drunken sailor."
One of the issues that arises from hypersexuality is that at the same time that the one with FTD has this intense craving for all things sexual, they have also become undesirable to their loved one/caregiver. This does not mean that their love is no longer there but the desire for intimacy is gone. In some cases, unfortunately, it does mean that the caregiver does not have a romantic love of the one with FTD, not to say they don't still love them, it is just in more of a companionship way. I have witnessed this in many cases and it makes me feel extremely sad. Just when the person with FTD needs intimacy, it is denied and becomes just one more frustration of dealing with the disease. Everyone needs to feel loved.
Pornography viewing often becomes an issue. It can become compulsive for someone with bvFTD. In some cases, that will be the only way their hypersexuality manifests itself. In that case, denying access to the internet, etc. may be self-defeating. If their compulsion is being controlled by this and not causing other issues, it might be best to let it continue even if you find it morally offensive.
Another issue is often making inappropriate sexual comments at inappropriate times. Trying to distract them may not be successful and may cause even more embarrassment. This is a good time to use the Awareness Cards that are available the AFTD. These can be printed from their website (www.theaftd.org). Then, try to steer them away from the situation.
Yet another problem with hypersexuality can be compulsive masturbation. One of the best ways to handle this is to remind them that this is something that is done in privacy and steer them to their own bedroom. While it may involve the "ewwww" factor, if it is controlled to stay in privacy, it can be a safe outlet for their sexual desires. Again, if it is done in an inappropriate place, try handing an Awareness Card to those witnessing the event and redirect the FTDer away, reminding that it is done in privacy and in their own room.
When it becomes an extreme problem, many dress their loved one in jumpsuits. There are even ones that are not open in the front. These can also help prevent disrobing, often another consequence of FTD. One problem with the jumpsuits is that it can make toileting a difficult process.
Above all, to the caregivers, I beg you to not take these issues personally (yes, I know it is difficult) and do not belittle, humiliate or criticize the one with FTD. These are not behaviors that they can consciously control.
Most people tend to think of hypersexual activities as problems for men only. This is not even close to the truth. The issues affect both sexes. They may manifest themselves in somewhat different ways. I believe that the issues, when in a woman, are not discussed as openly as they are when it is about a man.
One caution I must include about masturbation. It can also be a sign of vaginal and/or urinary tract infections. It is best to rule out these possibilities.
As always, sexuality issues should be discussed with the doctor no matter how awkward. It needs to be determined if it is actually a side effect of a medication or infection. Once those are ruled out and if redirection and distraction is not the solution, there are medication that can control the hypersexuality.
No comments:
Post a Comment