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GIVING VOICE TO SEXUALITY IN ALS. Sexuality is understimated. Sexuality and neuromuscular disease: a pilot study Anderson F., Bardach JL. Disability and rehabilitation , 1983;5(1):21-6.
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Sexualityisunderstimated • Sexuality and neuromuscular disease: a pilot study Anderson F., Bardach JL. Disability and rehabilitation, 1983;5(1):21-6. • Quality of life and psychosocial issues in ventilated patients with Amyotrophic Lateral Sclerosis and their caregiver. DagmarKaub-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. • Sexuality In patients with amyotrophic lateral sclerosis and their partners Maria Wasner, Ursula Bold, Tanja C.Vollmerand Gian Domenico Borasio;Journal of Neurology,2004, 251: 445–448. • Inappropriate sexual behaviour in a case of ALS and FTD: Successful tratment with sertraline. Johanna M. H. Anneser, Ralf J. Jox,andGianDomenicoBorasio.Amyotrophic Lateral Sclerosis, 2007, Vol. 8, No. 3 : Pages 189-190.
WHY takingsexualityintoaccount? • 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 CorboAmyotrophLateralScler. 2012 Sep; 13(5):452-8. Epub 2012 Aug 7.
It’s a coupleaffair “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: -whatwas the relationshipbeforethe diagnosis -what are theircopingstrategies: reorganization of the couple to face the disease -are thereanygender differences -whatis the partner’sburden
OUR COUPLES 12 Couples Patientsmeanage=60,41 ALSFRS= 29,5/48 50% of the coupleshasstillsexualrelationship: • 7 patientsdidn’t report changes in theirinterestaboutsexualintercourse, and 3 patientsreported an increase in sexualdesire • 8 caregiversreported a lossof interest • 8/12 patients are satisfied with theirsexualactivitywhile 7/12 caregiversare unsatisfied
Whatcan weobserve….. PATIENTS • Goodlevel of Quality of Life and GoodQuality of couplerelationship HAPPY COUPLES • Patients with greaterlevel of motorfunctionalimpairmentreported 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 • Goodlevel of Quality of Life and GoodQuality of couplerelationship HAPPY COUPLES but a worseperceptionthanpatients in couple«Tenderness» and Togetherness • Who has sexual intercourse reported more couple “Tenderness,” “Togetherness “and in general a better quality of their relationship
Whatcan wesuppose…. • Quality of Life is more influenced by psychosocialaspectsthanby functionaland physicalones • Caregiversseemto suffer more than patients as a result of changes in their couplelife related tothe disease • It seems that the progression of the disease does not affect the unity of the couple: patients who are more affectedreported 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 managethiscounselling • Changeourperspective:aspatientschangetheirconcept of QoLand changetheirconcept of sexuality, health providers alsohaveto changeperspective. • Don’thavefearto askpatientsaboutsexuality and about the relationship: ifcouplesfeelthereis a problem in thisfield, thisis the time for the right professionist to step in. Be open mindedand emotionallyavailable! • Encourageaffectivity 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