Alzheimer’s, dementia and related conditions can bring about changes that can be incredibly difficult to talk about. That is why Taboo Talks, a talk series by Banner Alzheimer’s Institute, works with experts to tackle ‘taboo’ topics that affect many caregivers and people living with dementia. One recent taboo topic discussed was sexual intimacy and dementia.
Family Nurse Practitioner, Michelle Grigaitis-Reyes, who specializes in memory and cognitive disorders neurology, opened the talk by acknowledging the discomfort people often feel discussing the topic of sex and how profoundly individuals’ own upbringing, exposure and mores influence their approach to the topic.
“The topic can be uncomfortable regardless of age,” she told talk attendees over Zoom. “In my experience, people tend to be more comfortable with facts and figures. We’ll start there.”
Sex and the Human Brain
According to Grigaitis-Reyes, all behavior, including sexual drive is mediated by the brain. More specifically, she explained, there are four areas of the brain that are implicated in sexual functioning: the temporal lobe, the corticostriatal circuits, the hypothalamus and the frontal lobe.
The temporal lobe is responsible for our emotional and intellectual interpretation of sexual arousal. In other words, this part of the brain is responsible for deciding which particular person or event we find attractive. Neural pathways in the corticostriatal circuits are theorized to result in obsessive-compulsive behaviors. She added that strokes in the region of the hypothalamus often lead to increased sexual desire.
The frontal lobe is connected to our inhibitory mechanisms, which allows us to differentiate appropriate behaviours from inappropriate ones. This part of the brain is particularly affected for people living with dementia, which is why many experience what Grigaitis-Reyes has termed ‘Inappropriate Sexual Behaviours’ – verbal or physical acts of explicit or perceived sexual nature, which is unacceptable within the social context.
“There are inappropriate behaviors in certain settings, no question. But it may be inappropriate because of a disapproving attitude or judgment of the people who are observing it versus the behavior itself,” she said. “Attitude and judgment has a lot to do with whether or not we think something is inappropriate. The vast majority of the time, a sexual behavior is a response to a need that has not been met.”
Both those living with dementia and their loved ones struggle to have their needs met as the dynamics within close relationships inevitably shift. After all, Grigaitis-Reyes said, all individuals have a need for affection and intimacy.
How Dementia Changes a Physical Relationship
Dementia affects the mind, but it can also drastically impact a couple’s physical and sexual relationship, bringing about feelings of isolation, guilt and frustration. As people living with dementia experience increased cognitive decline, problems with recall and memory can make it more difficult for them to recognize their loved ones or reciprocate intimacy. As with any diagnosis of dementia, each individual and every relationship experiences these changes differently.
“It is possible that there can be more of an interest in sex or sexual activity. There could be less interest in sex or sexual activity. There could be no interest at all,” Grigaitis-Reyes told the talk attendees.
One common issue is repeated advances, as the person with dementia may not remember prior sexual activity. She suggested that couples might try scheduling sexual activity in advance, or incorporating it into a routine. According to Grigaitis-Reyes, this could help a spouse or partner use the schedule to redirect the conversation without turning down their partner living with dementia – thereby avoiding any agitation.
One common struggle Grigaitis-Reyes has observed with patients and their spouses is that, because delusions are sometimes a symptom of dementia, people living with the disease may accuse their spouses of being unfaithful.
“That’s a delusion, and the definition of a delusion is a fixed false belief,” she explained. “No matter what you say, it won’t work because they are fixed in that delusion.”
One thing that may help, she said, is responding to these delusions by first addressing the emotions behind the delusion and then immediately redirecting their attention.
She also spoke about the changes that spouses or partners may experience as caregivers. Some caregivers experience no changes in sexual desire at all, she said. Others are too exhausted from caregiving to even think about physical intimacy or a sexual relationship.
Spouses or partners can often struggle with feelings of frustration especially in cases where one person in the relationship has more desire than the other, or when the person living with dementia cannot satisfy or even show an interest in the needs of the partner.
“There can also be guilt for refusing advances from your loved one [living with dementia], guilt for wanting a satisfying intimate relationship, for wanting a personal life, and for wanting the burden to end,” Grigaitis-Reyes said. “Those are all normal kinds of thoughts and feelings that are very guilt-inducing.”
She added that if the caregiver or the person living with dementia has reduced sexual interest or no sexual interest, there are many other outlets for sexual frustration. “There are no wrong answers here,” she said. “As long as nobody is harmed, the outlet for sexual frustration is dependent on personal mores and values.”
Another common issue is the loss of meaning during sexual activities in the context of dementia.
“For the [spouse] it was devastating that there was no meaning in the act of intercourse with her husband, on occasion, because he didn’t know it was her. It wasn’t about her or the relationship. It was about just the basic human need. And that’s not uncommon at all,” she said. “I think probably the most universal [feeling] is this overwhelming sadness associated with the loss of the [sexually intimate] part of the relationship.”
Look for Other Forms of Intimacy
Grigaitis-Reyes defines intimacy as the level of commitment and positive effect of affective cognitive and physical closeness one experiences with a partner in a reciprocal relationship. In a relationship with a person living with dementia, their ability to reciprocate that intimacy does diminish over time, but there are forms of intimacy that can more easily stand up to the disease.
She suggests music, singing, and dance to bring intimacy back into a relationship. Reviewing photo albums, reminiscing about fond memories, holding hands and going for walks or car rides are all acts that can rebuild a sense of intimacy. Engaging in hobbies and simple projects together, and assisting with personal care can be very intimate.
“In one of our support groups, there was a man whose wife had dementia,” she said. “His wife had always been meticulous about her appearance throughout their entire, life-long marriage and so he spoke about going to the makeup counter in a department store to learn how to put makeup on for his wife, every day. What a wonderful and intimate act that was.”
The Power of Touch
She also advised workshop attendees not to underestimate the power of touch.
Not only does touch lead to a biological response, but it is also a powerful form of communication. Touch can convey reassurance, safety and compassion. She emphasized the importance of eye contact and recommends soothing hand or foot massages, or even the simple act of holding hands.
Heather Mulder, Taboo Talks outreach senior manager and moderator, said that, like everything with dementia, taboo issues are very unique to the individual person and to the individual relationship.
“What I would really encourage people to do is find that safe space where they can figure out what works best for them, whether it’s getting connected with a support group, or getting connected with a memory café, or turning to your close circle of friends to talk these things through,” Mulder told Being Patient. “Everybody’s solution is going to be different.”
On October 21st, the next installment of Taboo Talks will feature Dr. Walter J. Nieri, a geriatrician who specializes in long-term care, dementia, hospice and palliative care in Phoenix, Arizona. Dr. Nieri will speak on the use of CBD and medical marijuana in the management of behavior issues in patients with dementia.
On November 18th, Tracey Wilkinson, the supervisor of the Police Crisis Intervention Services at the Scottsdale Police Department in Arizona, will lead a talk on weapons, safety and domestic violence in the context of dementia. On December 16th, Dr. Sarah Payne, who specializes in hospice and palliative care medicine at Banner Health Center, will speak about depression and suicide for caregivers and patients.
Contact Athena Hellmann at athena@beingpatient.com
