Welcome to Module 6, Session 1

Caregiver Support for Sex, Violence and other Dementia Issues

Step 1 of Caregiver Support for Sex and Dementia

Watch: “Intro to Sex and Dememtia”

Insights into sexuality and dementia, and strategies for managing other dementia-related challenging behaviors.

Caregiver Speaker, Elaine K Sanchez and Dr. Alex Sanchez introduce caregivers to the module on Sex, Violence and Other Dementia-Related Challenging Behaviors.

This is one in a series of videos that deals with the surprising and sometimes upsetting behavior exhibited by people who are stroke survivors, have Alzheimer’s or take Dopamine to control the symptoms of Parkinson’s Disease.

Step number 3

Watch:”Sex & Dementia Part 1″

Elaine Sanchez talks about sexuality and dementia in this excerpt from a keynote address at the Wisconsin State Alzheimer’s Conference.

When Elaine first started sharing this story she didn’t know how people with stroke-related dementia can sometimes display inappropriate sexual behavior, and she thought the message was about finding humor in absurd situations.

She later learned that inappropriate sexual behavior is not unusual in stroke survivors, people who have Alzheimer’s or individuals who take Dopamine to control the symptoms of Parkinson’s. Understanding that inappropriate sexual behavior is a result of the damage in the brain caused by dementia-related diseases can help families cope with this surprising and upsetting behavior.

This is one in a series of videos about understanding and responding to the challenging behaviors exhibited by people with Alzheimer’s and other dementia-related disease

Step Number 4

Watch:”Sex & Dementia Part 2″

Elaine Sanchez describes how poorly she responded to her father’s stroke-related dementia and his inappropriate sexual behavior.

Caregiver Speaker Elaine K Sanchez, www.EKSanchez.com shares a funny and poignant story about how badly she handled the conversation with her dad after he developed a fervent crush on Avis, the girl he’d taken to his high school senior prom in 1938.

She describes what their family did not know about dementia-related inappropriate sexual behavior at that time, and the importance of understanding that this type of behavior is not unusual in stroke survivors, people with Alzheimer’s and individuals who take Dopamine to control the symptoms of Parkinson’s.

This video and others about understanding and responding to the challenging behaviors exhibited by people with Alzheimer’s and other dementia-related diseases

Step 5

Watch: “Alzheimer’s & Dementia Anger”

Why people with dementia sometimes display surprising, inappropriate and challenging behavior.

Alzheimer’s and other dementia-related diseases cause damage in a person’s brain. That damage can make it impossible for the dementia patient to recognize what is and is not socially acceptable behavior.

Watch: “Alzheimer’s Personality Profiles”

Elaine Sanchez shares excerpts from a nurse’s journal about the challenging behaviors of people with Alzheimer’s Disease.

Alzheimer’s causes damage in a person’s brain. The behavior of people with dementia-related diseases can be unpredictable and sometimes difficult to manage.

These personality profiles provide insights into the behavior of persons with Alzheimer’s and other dementia-related diseases and helps caregivers understand how dementia impacts each individual differently.

Watch: “I’m Mad as Hell, and I Don’t Know Why!”

Understanding and Managing Dementia-Related Challenging Behavior.

People who have Alzheimer’s and other dementia-related diseases often display challenging behaviors. It is important to remember that the disease is in charge and they are acting out because of the damage that has occurred in their brains or because they have an unmet need, such as hunger, thirst or pain that they cannot express.

This is the fifth and final video in the Sex, Violence and Other Dementia Issues module on CaregiverHelp.com, a video-based support program that provides insights and strategies for managing the stress of caring for individuals who are stroke survivors, have Alzheimer’s, Parkinson’s and other progressive and degenerative diseases.

Action Step - Getting Started

Understanding and Responding to Dementia-Related Sexual Behavior

Sex and Dementia are two words that we don’t often hear together. It isn’t because people with dementia have lost their sexuality or their desire for intimacy and closeness. It’s probably because the thought of elderly people with dementia having sex makes family and professional caregivers uncomfortable.

When I first started sharing my story about my parents and the “Avis Affair”, I thought the message was about finding humor in absurd situations. After all, the fact that my dad asked my mother to arrange a sex date for him with the girl he’d taken to his high school senior prom in 1938, really was a bit absurd.

At that point I wasn’t familiar with the term, “stroke-related dementia”. However, every time I shared my story at caregiving conferences, people would come up to me afterward and say, “I’ve got an Avis story, too.” If you haven’t seen my TEDx Talk on this topic, you might enjoy watching it: “Having the Sex Talk with Dad”

Once I did a little research, I discovered that surprising, uninhibited, and inappropriate sexual behavior is not at all unusual in stroke survivors, people who have Alzheimer’s, and individuals who are taking Dopamine to control the symptoms of Parkinson’s Disease.

Although we’re used to seeing sexually charged messages in the media, the people featured are generally young, healthy and attractive. We aren’t used to seeing people in their 70’s, 80’s and above engaged in sexual activity – especially if these people also have dementia. In addition to being shocked, most family caregivers find it difficult to overcome the “Yuck Factor”.

Such was the case when Alice took her teenaged daughter, Jill to visit her grandparents, George and Anna. Alice, Anna and Jill were sitting at the kitchen table when George, who had been diagnosed with Alzheimer’s four years earlier, walked in and said to Anna, “Let’s go.”

Anna said, “Not now, George. I’m visiting with the girls.”

Five minutes later, he came into the kitchen and said, a little more insistently, “Let’s go.” Once again Anna said, “Not now, George.”

This went on every few minutes for half an hour, and finally Anna was exasperated. She stood up, faced her daughter and granddaughter and said, “I don’t know why we bother. Having sex with him is like riding a stationary bicycle. He climbs on and pumps, and pumps, and pumps, but we never go anywhere!”

You can only imagine Alice and Jill’s reactions.

It’s important to know that we are born as sexual beings, and we die as sexual beings. We do not age out of our sexuality, and even diseases as debilitating as Alzheimer’s and Parkinson’s cannot extinguish that flame within each of us.

Poor Dorothy wasn’t aware of this when she put Stan, her 83 year-old husband, into a long-term care facility after he suffered a debilitating stroke. No one was upset with Stan over the difficulties he experienced speaking, walking, or using his right hand. Everyone accepted that these problems were caused by his stroke.

However, when Stan developed a fervent crush on Maggie, his 35 year-old physical therapist, his family’s sympathy and compassion quickly turned to disgust.

Every time Stan saw Maggie for therapy, she was cheerful, encouraging, and friendly. Unfortunately, Stan misinterpreted her enthusiasm, and he mistook her warmth and compassion for mutual sexual attraction.

Maggie was stunned when Stan asked her to have sex with him. When she said she wasn’t interested in having that kind of a relationship with him, Stan went to the facility’s administrator and claimed that he was being abused because his physical needs were not being met. Understandably, the administrator was concerned, Maggie was upset, and Stan’s wife Dorothy was furious.

It’s too bad none of the people in these situations knew at the time that this uninhibited and inappropriate sexual behavior was a result of the damage that had occurred in their loved ones’ brains. They no longer recognized what qualified as socially acceptable behavior, and they no longer felt any sexual inhibitions.

Other Causes for Dementia-Related Inappropriate Sexual Behavior

Inappropriate sexual behavior is often a result of an unmet need that the person with dementia can not adequately express. It can be brought on by hunger, or thirst.
Sometimes a people with dementia-related diseases will grab ahold of their genitals because they need to use the bathroom. They could be in pain from a urinary tract infection. It may be that they are longing for some kind of comfort, and they associate sex with their memories of feeling good.

Joyce Graves, former Program Director at Southwest Health Center, Senior Behavioral Sciences in Platteville, WI strongly suggested that every long-term facility develop a plan to respond to inappropriate behavior in order to protect all residents. All caregivers need to be educated and trained so that their responses are consistent and appropriate.

Tips for Managing Inappropriate Sexual Behavior in Long-Term Care Facilities

  • Assess if the behavior is harmful to anyone else. Is the resident making unwanted advances, climbing into other people’s beds, or acting in a way that is upsetting or offensive to other people?
  • Sit down with the individual and try to him/her describe how they’re feeling. Are they in pain, hungry, or thirsty? Do they feel lonely, confused or scared? Are they needing to be held or cuddled?
  • Wear appropriate clothing, act in a professional manner, and employ firm, consistent responses.
  • Avoid using endearing names such as “honey”, “sweetie”, “darling”, etc. Address residents by their proper names. Refer to them as Mr. Smith or Mrs. Jones.
  • Be aware of where you place your hands and your head in relationship to their body when you are helping them use the toilet, take a shower, or change clothes.
  • Be specific when you are explaining your actions, and be selective with your words. Avoid phrases that could be misinterpreted, such as , “Let’s go to bed now,” or “Let’s get you out of those pants.”
  • Instead, say something like, “It’s time to get you dressed for bed so you can sleep.” or “We need to get your clothes changed so you’ll look nice for breakfast.”
  • It may be helpful to switch caregivers. One administrator from a memory care facility reassigned the personnel so that an elderly man with an ardent affection for any female CNA got help with his bathing and toileting needs from a big, burly man.
  • If a person is aggressive, a behavioral health expert consulted. Hormone imbalances can also affect a person’s sex drive. The introduction of estrogens can reduce sex drive. Doctors sometimes will prescribe antidepressants for a person displaying inappropriate sexual behavior, as these medications can diminish that drive. If all else fails, inpatient hospitalization may be needed so that the person can be closely monitored.

What if it’s Love?

It’s not unusual for residents in long-term care communities to develop a genuine affection for one another. This can be a source of great joy to the residents. It can also be a huge source of stress to family members, especially if there is a living spouse.

One of the most tragic stories I’ve ever read, “An Affair to Remember”, was written by Melinda Henneberger and published in Slate Magazine. Bob was 95. Dorothy was 82. They were both residents in a memory care facility. They fell in love, which everyone thought was “sweet”, until they started having sex. Bob’s son was horrified, and he ordered the staff to not allow his father and Dorothy to be alone together in their rooms.

The facility did not have a policy about residents being sexually active, and the staff was divided over how things should be handled, especially when Bob and Dorothy started pleasuring one another in the facility’s public areas.

The situation ended tragically when Bob’s son decided to move his father out of the facility. He didn’t tell his dad what was happening. No one informed Dorothy that Bob was leaving. They didn’t even get to say goodbye to each other. After Bob disappeared from her life, Dorothy sat at the window for weeks watching for him. She stopped eating. She lost 21 pounds, was treated for depression, and was hospitalized for dehydration. Eventually, her Alzheimer’s erased the memory of Bob from her brain, but she was never happy again.
Whether you are a family caregiver, a nursing home administrator, or a professional caregiver, please read this article. “An Affair to Remember”

Link to: http://www.slate.com/articles/life/family/2008/06/an_affair_to_remember.html

Retired Supreme Court Justice Sandra Day O’Connor handled her own situation quite differently. She exhibited incredible grace when her husband John developed a romance with another Alzheimer’s patient in his assisted living facility.

Although it must have hurt her heart on some level to see him sitting on a swing holding hands with another woman, she understood that the Alzheimer’s had stolen her husband’s memories. She knew her husband’s affection for the other resident was not a rejection of her and it in no way diminished the relationship they had enjoyed through the years or their marriage. In an interview with KPNX in Phoenix, their son Scott O’Connor said, “Mom was thrilled that Dad was relaxed and happy.”

It takes a lot of patience on the part of family and professional caregivers to deal with uninhibited and inappropriate dementia-related sexual behavior. But we must remember that no matter how old or how sick we become, we never lose our desire for intimacy, affection and closeness. Our need to love and be loved is what makes us human.

If we can accept that and deal with each situation compassionately, perhaps the people who end up caring for us when we are old, will also respect our dignity and treat us kindly, even if they think our behavior distressing, disgusting or even scandalous.

To read another article by Elaine on this topic, click here: “A Different Kind of Valentine’s: Sexuality and Dementia”

Link to: http://www.griswoldhomecare.com/blog/a-different-kind-of-valentines-sexuality-and-dementia/