Sexuality and intimacy are important aspects of one’s life that are also affected by amyotrophic lateral sclerosis (ALS), according to a review study.
It is important that clinicians and healthcare practitioners provide suitable support to ALS patients to cover these issues, as they can also affect patients’ overall well-being and treatment outcome, researchers said.
The study, “Sexuality and intimacy in ALS: systematic literature review and future perspectives,” was published in the Journal of Neurology, Neurosurgery & Psychiatry.
Researchers and clinicians working in the field of progressive degenerative disorders, such as ALS, are mainly focused on finding ways to treat or relieve the major motor and physical symptoms that affect patients.
In many cases, sexuality and intimacy are disregarded, as these are not directly implicated in patient survival. “Patients themselves often express the feeling that when everyday survival is an issue, talking about sexuality is rather embarrassing and an inappropriate subject,” researchers stated.
However, sexuality and intimacy are important components of daily life and can have a significant impact on a person’s emotional well-being, affecting disease-related aspects.
To have a better understanding on the overall role of sexuality and intimacy in ALS patients, researchers reviewed information from available studies.
The team found 30 pertinent studies, among which they identified four core topics: intimacy among couples, sexual activities in patients and with their partners, sexual function disturbances, and sexuality and cognitive behavioral alterations.
In addition to physical limitations experienced by ALS patients, non-motor manifestations such as emotional problems have a primary effect on sexual activities.
Patients often are described as having problems with changes in their bodies and their body image, causing fear of rejection and not satisfying their partner. Still, no study revealed the incidence of significant sexual dysfunction that could be directly triggered by ALS.
The patients’ partners were found to be more influenced by changes in the relationship when they become the caregivers. This role will ultimately decrease their sexual interest in the patient.
“The different reasons for sexual dissatisfaction reported by patients and carers are related to the specific ways in which the disease affects the personal identity of each component of the intimate relationship,” researchers stated.
Researchers found evidence that social support and marital relationship counseling can effectively help ALS patients and their partners cope with these sexuality and intimacy changes.
“Therefore, such aspects should be addressed by means of specific and tailored interventions by healthcare professionals in order to improve well-being and promote more effective coping strategies within [couples],” researchers suggested. But, they added, “The quality of the studies varies, with globally poor level of evidence.”
A structured approach could be employed in multidisciplinary ALS clinics to overcome personal discomfort and resistance that both ALS patients and clinicians may experience when discussing such issues. Also, patients’ physical and psychological needs, as well as sexuality discussions, should be included in their daily care.
In general, the reviewed studies provided evidence that confirms both sexuality and intimacy are important aspects for patients with ALS and their partners. Still, these issues have not been adequately addressed by clinicians in the daily management of these patients.
Additional studies are warranted to better understand the challenges this population faces, with a focus on comparing attitude and experience toward sexuality according to some relevant clinical and demographic variables.