Exploring Sexuality in ALS Patients: Importance, Challenges, and Impacts on Caregivers
Addressing the often overlooked topic of sexuality in Amyotrophic Lateral Sclerosis (ALS) patients, this collection of studies delves into the various aspects of sexual function, interest, and behaviors in individuals with ALS. Highlighting the significance of understanding and integrating sexuality into the care of ALS patients, the research emphasizes the need for tailored interventions and support for both patients and caregivers.
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SEXUALITY IS UNDERSTIMATED Sexuality and neuromuscular disease: a pilot study Anderson F., Bardach JL. Disability and rehabilitation, 1983;5(1):21-6. 1. Quality of life and psychosocial issues in ventilated patients with Amyotrophic Lateral Sclerosis and their caregiver. Dagmar Kaub-Wittemer, Nicole von Steinbu chel, Maria Wasner, Gerhard Laier-Groeneveld and Gian Domenico Borasio. Journal of Pain and Symptom Management ,2003, Vol. 26 No. 4. 2. Sexuality In patients with amyotrophic lateral sclerosis and their partners Maria Wasner, Ursula Bold, Tanja C.Vollmer and Gian Domenico Borasio;Journal of Neurology ,2004, 251: 445 448. 3. Inappropriate sexual behaviour in a case of ALS and FTD: Successful tratment with sertraline. Johanna M. H. Anneser, Ralf J. Jox,and Gian Domenico Borasio. Amyotrophic Lateral Sclerosis, 2007, Vol. 8, No. 3 : Pages 189-190. 4.
WHY TAKING SEXUALITY INTO ACCOUNT? sexual function is usually not affected directly by the disease progression. sexual activity is high despite physical limitations. sexual interest and activity persist well into late life, although with a decline. Sexual activity in ALS patients does not seem to differ from the general elderly population. Sexuality can be a resource to cope with the disease
AGGRESSIVENESS, SEXUALITY, OBSESSIVENESS IN LATE STAGES OF ALS PATIENTS AND THEIR EFFECTS ON CAREGIVERS. ANNA MARCONI*, GIULIA MELONI*, FEDERICA FOSSATI*, CHRISTIAN LUNETTA, STEFANIA BASTIANELLO, MARIO MELAZZINI, PAOLO BANFI, GABRIELLA ROSSI, MASSIMO CORBO AMYOTROPH LATERAL SCLER. 2012 SEP; 13(5):452-8. EPUB 2012 AUG 7. 1. Have you noticed any interest in sexual activity?Y/N Much less involved Less interested More interested Much more 1. Would you describe your current sexual desire as strong?Y/N 1. Are you currently engaged in a sexual relationship with your partner?Y/N 1. Are you satisfied with your current sexual life?Y/N - if not, is your dissatisfaction due to your partner? Y/N - if not, is your dissatisfaction due to issues related to your sexual potential?Y/N 1. Have you ever asked any sexual favors from anyone other than your partner?Y/N - if yes did you also have sexual intercourse with this/these person/people?Y/N - if yes are these prevalent than those with your partner?Y/N 1. Do you experience dreams of a sexual nature?Y/N 1. During the course of the day do you experience thoughts of a sexual nature?Y/N 1. Do you have difficulty to persistent sexual thoughts?Y/N recent changes in your 0 interested 1 0 0 Sexuality 1 sexual relations more 0 0 falling asleep due 1
ITS A COUPLE AFFAIR an alteration of sexual behavior did not emerge, even if an increased sex drive has been found IT S NOT AN INAPPROPRIATE BEHAVIOUR, IT S A COUPLE PROBLEM AND CONCERN: -what was the relationship before the diagnosis -what are their coping strategies: reorganization of the couple to face the disease -are there any gender differences -what is the partner s burden
OUR COUPLES 50% of the couples has still sexual relationship: 12 Couples Patients mean age=60,41 ALSFRS= 29,5/48 - 7 patients didn t report changes in their interest about sexual intercourse, and 3 patients reported an increase in sexual desire patients - 8 caregivers reported a loss of interest - 8/12 patients are satisfied with their sexual activity while 7/12 caregivers are unsatisfied male female
WHAT CAN WE OBSERVE.. PATIENTS Good level of Quality of Life and Good Quality of couple relationship HAPPY COUPLES Patients with greater level of motor functional impairment reported a better perception of couple Togetherness Who is still engaged in sexual intercourse reported more couple Tenderness and a better perception of couple relationship CAREGIVERS Good level of Quality of Life and Good Quality of couple relationship HAPPY COUPLES but a worse perception than patients in couple Tenderness and Togetherness Who has sexual intercourse reported more couple Tenderness, Togetherness and in general a better quality of their relationship
WHAT CAN WE SUPPOSE. Quality of Life is more influenced by psychosocial aspects than by functional and physical ones Caregivers seem to suffer more than patients as a result of changes in their couple life related to the disease It seems that the progression of the disease does not affect the unity of the couple: patients who are more affected reported a better perception of couple cohesion In our preliminary sample quality of life is not related to the presence or absence of sexual intercourse. tenderness and togetherness more important than sexual activity? In some cases in the couple there are different points of view about sexuality. Patients maintain high sexual drive vs caregivers reduced sexual interest: disease related distress?
SO. Sexuality should not be a taboo because this is a resource for patients couple unity and sexual relationship and a way to feel alive and gratified. Associations and Health care professionals should proactively address this topic as part of patient care, and offer appropriate counselling where indicated.
HOW TO MANAGE THIS COUNSELLING 1. Change our perspective:as patients change their concept of QoL and change their concept of sexuality, health providers also have to change perspective. 2. Don t have fear to ask patients about sexuality and about the relationship: if couples feel there is a problem in this field, this is the time for the right professionist to step in. Be open minded and emotionally available! 3. Encourage affectivity and tenderness: incite the reawakening of hugs, caresses and kisses to discover a new way of being together and a new way to live couple intimacy
SUGGESTIONS FOR THE ASSOCIATIONS Prove training for telephone counsellors so that they can better answer to the needs of the couple and direct them to a focused support Provide individual support to couples to allow them to face their emotional block in sexuality: in this experience we observed that the individual context is better than group therapy because sexuality still belongs to themes of intimacy and cultural taboos
