Love & Sex, Pt 5: Spouses and Adult Children

This is the last in a series of blogs about dementia, love and sex. Past blogs have addressed the changes dementia and dementia caring makes in relationships, the changes it causes to a loved one's brain and feelings.

When you are aware of the changes that dementia causes, it is easier to accept these behaviors as a part of the disease and then move on to find ways to prevent or avoid unwanted behavior. That's what last week's blog was about. However, it is likely that you may still have to deal some. This week we discuss how sposues and adult children can use Responsive Dementia Care's last three As to deal with these behaviors when they occur.

Attitude. Developing the right attitude goes a long way towards more helpful actions.

• Empathy will allow you to see the issue from their viewpoint. This is the only one that counts, since only you can change. (See previous blogs about this.)
• Accepting your loved one's views and needs will prevent negative feelings from interfering. As long as strong negative emotions are present, your loved one can't "hear" you emotionally and will not respond positively.

Action. You are the only one who can chose how to act. You loved one can't. However they can mirror your actions, and follow your lead--if they are calm enough to "hear" you. Your goal is to behave in a way that calms your loved one and allows you to access their attention enough to refocus it onto something more acceptable.

• Last week's blog recommended that you proved plenty of emotional support throughout the day. This continues to be one of the most important things you can do.
• Gently reject an inappropriate approach by putting it off. A spouse might smile and even touch gently, but then say firmly, "Not now, dear" and move away. Alice said that when her husband was amorous during the day, she'd smile and tell him, "as soon as I finish this." Then she made sure her task lasted long enough for him to forget his request.
• Other spouses recommend cuddling, which even they can enjoy.

For the adult child, the issue is more difficult and embarrassing. Here are some suggestions. Of course, these can also work with spouses:

• Simply ignore the sexual aspect of an advance and respond in a friendly way with something distracting. (Don't worry about this bringing on more episodes. Unlike a child, a person living with dementia doesn't learn.) Most of these advances involve a need for attention. When you give this but don't reward the sexual message, the inappropriate behavior often decreases.
• If the behavior continues, shake your head, frown and move away if you can. Your nonverbal cues will be more helpful than your words. Remember the directions from last week to avoid anger, defending or explaining, all of which will make the situation worse.
• Move your loved one to a different location. This takes them away from whatever was triggering the behavior.

Averting: Refocusing your loved one's attention by moving the action away from the unwelcome behavior and towards something more acceptable. Such distractions work because dementia makes it difficult to think about more than one thing at a time but ONLY if you have validated your loved one's feelings enough to get their attention. If they are still strongly focused on what they want, your efforts will fail.

• Suggest going for a walk. Exercise can reduce sexual urges.
• Offer a massage of hand, feet or even back. Therapies that involve physical contact can divert the person's attention away from more sexual thoughts.
• Other distractions are sweets (always helpful!) and other things the person enjoys such as card game, photo sorting and viewing or even something you "need help with" like setting the table.

Finally, remember nothing works for everyone. You will likely have to try a variety of things to find out what works best with your loved one. Feel free to share what you've learned in the comments below.

Next week is about cognitive fluctuations, a subject discussed at the 2019 National DLB Conference by LBD expert, Tanis Ferman.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Love & Sex, Pt. 4, Preventing and Avoiding the Behaviors

Last week's blog was about unwanted touching. This week's blog describes some dementia-related changes and offers some suggestions for limiting the resulting behaviors. Last week we introduced Stan, a man with early dementia. What he wrote bears repeating in this blog:

"Despite being 77 years old, I find myself having a great many sexual thoughts and feelings. Fortunately, these things have only been in my mind. None of this is at all characteristic of my personality. I attribute this to the changes taking place in my brain."

Stan is right about the changes in his brain. So far, he has been able to avoid acting on his thoughts but as his dementia advances, this will likely change. Dementia damages some areas of his brain less than others. One of these more functional areas is where he stores forbidden words and thoughts. Thus, Stan is beginning to think more inappropriately.

• His sensory abilities will continue to function as cognitive abilities decrease, making such feel-good activities as sex more attractive.
• His impulsiveness will increases, so that he will act upon his thoughts without stopping to consider their social acceptability.
• As illness increases Stan's feelings of inadequacy and insecurity, sex may be the way he tries to maintain his self-esteem.
• As dependence increases, it will foster a clinginess that makes sex even less attractive to his already overburdened care partner.
• As his empathy fades, he will have little understanding of why his spouse rejects once welcome overtures, why his adult child is repulsed by such behaviors or why friends are offended by crude words.
• The autonomic nervous system which controls a his sexual organs weakens. Thus, even though Stan may act out his sexual thoughts with words and touching, he may not be able to function sexually--adding more feelings of inadequacy and possible jealousy.

So, how can care partners deal this? Last week's blog contained a short explanation of the 6 As, awareness, arrangements, avoidance, attitude, action, and averting. This week, we will discuss the first two: Awareness and Avoidance.

Awareness. The first blogs in this series have mainly been about awareness of how the dementia brain functions. Becoming aware of these changes helps you to develop helpful attitudes, which we'll talk about next week. But it also helps you to develop ways to prevent the behavior from happening.

Arrangements. By thinking ahead and making preparations, you prevent some behaviors from happening at all. Mainly this is identifying triggers and finding ways to avoid, change or respond to them

• Boredom can be decreased with a fidget blanket or regular chores. Amanda reported, "I guess Dad was using sex to alleviate boredom. When I gave him a task, like a basket of clothes to fold and refold, he's happier and doesn't bug me with inappropriate touching." The chores also make him feel helpful and relieves feelings of inadequacy.
• A need to touch may be satisfied by a stuffed animal or doll. My mother had a stuffed animal she carried with her everywhere.
• Feelings of inadequacy, insecurity and fear of loss can be alleviated with ongoing emotional support throughout the day. Diane stated: "Once I was more aware of Dick's emotional needs, I found it more important and easier to show care, compassion and conviction that I would be there for him always. That way, his anxiety levels drop and he is less afraid when I'm not there every moment."

You can do some other preparation too:

• For friends, neighbors and other family members, make sure they know about your loved one's dementia and the way it can remove inhibitions. Remember, your loved one can and often will do Showtime around other people, which can mask the dementia.
• For strangers, consider making up a card that you can hand out as an apology. It can say something like "Please excuse my loved one. She/he has a brain disorder that increases sexual thoughts and decreases inhibitions."

Avoidance. Avoidance is not avoiding the possibility that these unwanted behaviors can occur. Rather, it is learning to avoiding those behaviors of your own that trigger your loved one's unwanted behavior.

• Avoid attitudes and actions that trigger negativity. Love ones tend to respond to anger with more anger, to see defending as downright lying, and to find explaining belittling. Avoid words and that don't match your actions. They will believe the actions.
• Avoid mixed messages, such as words and actions that don't match. Maintain continuity. Avoid allowing something for even a short while one time and forbidding it the next.
• Avoid nonverbal cues that might inadvertently encourage the behavior. You want your loved one to feel cared for and appreciated, but non-spouses especially will not want their touching to convey sexuality. Even spouses will not want to trigger a sexual response at the wrong time. This can be tricky because touching itself is so beneficial. In fact,  regular loving touch actually tends to decrease rather than increase the likelihood of inappropriate sexual behavior especially when the behavior is an expression of neediness.

Next week's blog will be suggestions for how a spouse or an adult child can deflect unwanted sexual approaches when they occur and do it in ways that cause the least stress for both parties.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Love & Sex, Pt. 3: Inappropriate Touching

Last week's blog was on the value of touch. However, not all touch is welcome. Sexual touching is a good example of this. Making love can be a very important part of a couple's relationship, even quite late in life. When dementia changes the relationship to one that's more nurse/patient relationship this can change.

For the spousal care partner, romance is often weaken by a combination of tiredness and normal dementia care jobs like helping a loved one dress or get to the toilet. Jobs like cleaning up smell messes definitely don't help, nor do the personality changes that often occur with dementia. Care partners find themselves caught between wanting their loved one to feel like the person they once were and their own growing feelings of distaste towards what used to be pleasant sexual contact.

When the care partner is the loved one's adult child, even custodial touching can feel awkward. While a spouse might be comfortable providing intimate care for their loved one, doing the same for a parent isn't so easy for either person. In this case, the metamorphous into a nurse/patient relationship may be a welcome change that reduces uncomfortable feelings of embarrassment.

For the person living with dementia, the change is more drastic. First, they may still perceive their relationship with their caregiver as the way it used to be, not the patient/nurse one the care partner experiences. However, we have certain social expectations concerning sex, and dementia can erode a person's recognition of these and their importance.

Stan, a man with early dementia wrote: "I find that more crude language comes to mind than ever before. Also, despite being 77 years old, I find myself having a great many sexual thoughts and feelings. Fortunately, these things have only been in my mind. None of this is at all characteristic of my personality. I attribute this to the changes taking place in my brain."

Stan's description of his thought processes is a unique look at evidence of the type of brain changes that eventually lead to inappropriate behaviors. We seldom see the behaviors themselves until the disease had eroded the person's perceived need for restraint. However, thoughts like Stan's are definitely symptoms of the disease. Sadly, this increased sexual interest tends to occur at the same time that care partners are getting more turned off. More sexually aware and needy but with little or no inhibition, the loved one acts out these feelings--anywhere, anytime with anyone.

But it isn't just brain changes. As a person begins to feel less independent, attractive, functional or adequate, they may turn to sex for proof of their value. With appropriateness out the window, sexual advances at any time of the day or any place can be expected. In fact, the advances are most likely when the care partner is most busy, especially if the job doesn't directly include the loved one.

All is not hopeless. Using Responsive Dementia Care, you can deal with these behaviors.

• Awareness: Understanding dementia's effects on your loved one's brain.
• Arrangements: Preparations that prevent unwanted behaviors.
• Avoidance: Avoiding attitudes and actions that increase negative emotions, confusion and unwanted behaviors.
• Attitude: Using acceptance and empathy to see the issue from their viewpoint.
• Action: Acting to give them the emotional support they need.
• Averting: Turning aside the unwanted behavior and using distraction to refocus the loved one's attention to something more acceptable.

OK, this doesn't really tell you enough, does it? But next week's blog will be about preventing and avoiding unwelcome sexual advances.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.