"Sometimes I feel disgusted": how to break the taboo surrounding the intimate and sexual lives of people with Alzheimer's
Stephanie Wiélé Published on 07/07/2025 at 1:30 p.m., updated on 07/07/2025 at 2:13 p.m.
The intimate, emotional, and sexual lives of people with Alzheimer's disease are delicate, even taboo, topics. Yet, taking these aspects into account is essential for both home and institutional care.
To break the silence and open the debate, France Alzheimer 06 organized a major ethics evening (1) for health professionals at the Claude Pompidou Institute in Nice.
Among the many speakers, Dr. Aurélie Mouton, neurologist at the Memory Resources and Research Center (CMRR) at the Nice University Hospital, provided valuable insight into the medical causes that can lead to behavioral changes in people affected by the disease.
What are the brain mechanisms behind behavioral changes in people with Alzheimer's?
Alzheimer's disease is a progressive neurodegenerative disorder that causes the destruction of neurons, primarily due to the abnormal accumulation of proteins (amyloid and tau) in the brain. These brain lesions gradually affect different areas, including the frontal regions, which are responsible for controlling behavior and emotions. When these regions are affected, the ability to control emotions and behavior is impaired. This explains the appearance of various symptoms: memory problems, language difficulties, disorientation, apathy, irritability, as well as changes in the expression of desires and behaviors, including sexual ones.
For example?
Patients may experience increased sexual needs, sometimes marked by repeated requests or inappropriate behavior in public, such as discussing intimate topics or adopting inappropriate attitudes. Conversely, some patients may experience decreased sexual desire and initiative, withdrawal, and decreased emotional expression. These changes disrupt relationships and require constant adaptation.
At what stage of the disease can these disorders appear?
It all depends on the clinical form. In some cases, disinhibition may occur in the early stages, while in others, it gradually worsens as the disease progresses. It may initially go unnoticed and then become increasingly pronounced over time.
Is this topic easily addressed in consultation?
No, it's rarely mentioned spontaneously, except when the disorders become truly bothersome. A certain taboo persists, both among patients and their caregivers. However, professionals try to address the issue, especially when they suspect the presence of behavioral disorders.
How do we support couples facing these changes?
This begins with dialogue: it is essential not to remain isolated in the face of difficulties. Depending on the nature of the disorders (disinhibition, apathy, etc.), referral to specialized professionals may be suggested: sexologists, psychologists, or units dedicated to behavioral disorders.
For erectile dysfunction, a urological opinion may also be considered.
The objective is to provide support adapted to each situation, taking into account the specific needs of the couple and promoting access to support and listening resources.
1. France Alzheimer 06 has set up, throughout the year 2024-2025, three working groups bringing together around forty professionals from the health, medico-social and social sectors. " These meetings made it possible to analyze problematic situations related to intimate, emotional and sexual life in Alzheimer's disease, and to share concrete solutions," explained Federico Palermiti, president of France Alzheimer 06.
During the ethics evening, Maéva Mahieux-Caccamo, a psychologist from France Alzheimer 06, read aloud the moving testimony of a caregiver, the wife of a man suffering from Alzheimer's disease.
In this story, "Madame C." evokes the profound rupture of the carnal bond that united them, since the announcement of the diagnosis in 2022: "Sometimes, I feel disgust: his body has become foreign to me, the attraction has disappeared overnight, especially since the appearance of his hygiene problems. Something has broken in our intimacy, in the skin-to-skin contact. He wears a diaper, he takes out his penis and asks me: "So, what do we do?" I no longer recognize the man for whom I had desire and attraction. Even after washing, it is no longer his smell, it is the one left by the nurse. I have in front of me a foreign body."
Her husband, once a naturist, placed great importance on the body. " He often told me, 'Teeth and genitals must always be clean.' Today, he seems completely unaware of these concerns."
"Mrs. C." also mentions her husband's adoption of new, disconcerting "habits": "He goes on his computer every day to watch pornographic videos. At first, it was awkward, but now I go out alone in the afternoon and he does what he has to do. I even bought headphones so he wouldn't hear."
"Mrs. C." laments the persistent taboo surrounding these subjects: "I have friends at the bridge club, but we rarely talk about the disease and its impact on intimate life. We need discussion groups, for women, for example."
The caregiver looks to the future with lucidity: " If my husband goes into a nursing home one day, I think he'll be even more uninhibited, perhaps attracted to other women. But that doesn't bother me. For me, sexuality must be linked to security and letting go, and that's no longer possible today."
An ethical issue
Intimate, emotional and sexual life is now recognized as a fundamental right by the World Health Organization (WHO) and the High Authority for Health (HAS), which recalls that these dimensions are essential to human dignity.
However, in medical and social establishments welcoming people with Alzheimer's, we often find ourselves faced with complex situations: inappropriate behavior, disinhibition, difficulties around consent or family concerns.
As Thomas Chastagner, director of the Les Jardins de Sainte-Marguerite nursing home, explained, it is " a matter of finding a delicate balance between respect for privacy, resident safety and the demands of community life. "
Dr. Albert Barbaro, a sexologist, also emphasized the importance of ethical and personalized support: " Why not collect, upon entering the institution, the expectations and lifestyle habits of residents in terms of intimacy and sexuality? Ethical reflection must allow for respecting the rights and emotional needs of each person, while adapting to the reality of the illness and the collective framework."
Var-Matin
