ALS Patients’ Sexuality, Intimacy Issues Should Be Addressed by Healthcare Pros, Study Suggests

ALS Patients’ Sexuality, Intimacy Issues Should Be Addressed by Healthcare Pros, Study Suggests

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.


  1. Conrad Robert & Claudette Robert says:

    My dear wife of 52 yrs. lived 5 yrs with ALS. We did the best possible with our situation. I was her care giver 27/7 for 5 YEARS . Claudette lived at home and we kept living life as much as possible.We kept entertaining friends,traveled and spent time at our Cottage.We celebrated our 50 th wedding anniversary with a cruise with our 3 children and there spouses and our 6 grand children.As I said we lived life to the fullest and always kept our faith in the lord JESUS Christ and i fell that Claudette is in heaven to day with all our family members that have gone before us and i will be joined with her when I go to heaven.As the writing on our head stone says
    “TOGETHER FOREVER” . I WISH THE BEST TO ALL ALS PATIENTS I send them our LOVE AND COURAGE, Conrad and Claudette Robert.

    • Dave Reckonin says:

      You did all those great things because you and Claudette were sensible cogent human beings who faced a real and horrific crisis.
      I am curious as to why you ‘kept (our) faith in JESUS Christ..’ when he and his father abandoned your spouse to a dreadful fate.

      What exactly did he do for you and Claudette? Nothing, I suggest.
      It seems strange. If you or I had wonderful and special gift of healing we would alleviate the suffering of pALS. Yet God & Son Inc. seem happy to welcome you to eternity but turn an indifferent eye to pALS in the real world, whilst allowing others to sail through life without a moment’s health scare.
      It’s almost like God & Son Inc. really do want us to believe in evolutionary Darwinism and all its logic and unarguable good sense.

      • David Read says:

        So sorry that you have not yet realized the purpose of life or the true nature of our Father, God. We didn’t come to live in this sinful world indefinitely and without challenges or choice. Sometimes our choice is about how w react to challenges. Your bitterness has caused you to reject truth and cling to hopeless philosophies of men. If you lose your pride and seek the truth, you will understand more and learn to trust and accept other things waiting patiently until all truth is given.

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