Symptoms of ISB
Caring for dementia patients is complicated since sexuality is one of the basic needs of human life. These patients suffer from several disabilities all at once, in addition to other health-related issues. It’s important for caregivers and family to understand the illness and know how to deal with it effectively.
- Memory loss that affects day-to-day abilities
- Difficulty performing familiar tasks
- Problems with language (in-take and out-put)
- Disorientation to time and place
- Impaired judgement
- Lack of inhibitions
- Misplacing things
When one combines lack of inhibitions with all the other disfunctions of the personality, especially with frontotemporal dementia, the patients may express sexual behavior in socially inappropriate ways. They become more direct or open.
Normal sexual attraction includes thoughts, feelings and sensations. Thoughts and feelings of trust and warmth towards caregivers or others can be misconstrued by the dementia patient and exhibited inappropriately as sexual feelings though impaired judgement and lack of inhibitions. The underlying mechanisms for hypersexuality are often the first symptoms of early onset frontal dementia, although some patients experience apathy and indifference. It’s not entirely clear why this happens but it is believed to resonate from regions of the brain specializing in interpersonal behavior.
If you are a caregiver for a dementia patient, you may notice the following:
- Sex talk (i.e., using foul language that is not in keeping with the patient’s prior personality)
- Sexual acts (i.e., acts of touching, grabbing, exposing)
- Masturbating (which can occur in private or in public areas)
- Implied sexual acts (i.e., openly reading pornographic material or requesting unnecessary genital care)
Sexual interest is normally gaged by socially and culturally accepted boundaries. When it deviates from the norm, it becomes a problem. (i.e., sexual arousal that deviates from previous restrictions, for instance, involving children, animals, and non-consenting people)
Caregivers and other staff fall into the category of non-consenting people as they can be in daily, intimate contact with the patient. Caregivers and staff may notice the following:
- Sitting close to someone with arms or legs touching
- Trying to kiss inappropriately
- Stroking someone on the face, hands, or arms
- Being undressed outside the bedroom or bathroom (not to be misconstrued when a patient needs assistance to dress)
- Rubbing up against another person
- Touching self on breasts or genitals in public
- Inappropriate explicit sexual comments
- Touching someone other than partner on breast or genitals (in private or in public)
- Exposing breasts or genitals in public
- Reading explicit material in public
- Using inappropriate words and inuendo in conversation
- Men tend to act out physical manifestations while women seem more verbal.
Despite the explanations of why IBS occurs, the term “inappropriate” has several flaws.
Religious beliefs and prevailing societal views of elderly persons vary. Acts like public undressing or genital touching may be misinterpreted as sexual, when in fact they can result from pain, discomfort, hyperthermia, or attempts to be freed from a restrained environment. It is a misconception that normal needs for sex and intimacy don’t exist in the elderly. Normal desires of the elderly are frequently regarded as an inappropriate increase in sexual drive. Inappropriateness often stems from judgmental mind-sets and arbitrations of the observers (clinical staff, family, and other residents), rather than the sexual activities themselves. Patients, particularly those in skilled nursing facilities and those with non-familial caregivers tend to have the most trouble in this area because of misinterpretation.
ISB can be a threat to the mental and physical health of patients and others.
Examples of the fallout that can occur with ISB symptoms:
- Repeated masturbation can cause genital trauma.
- Inappropriate activities can cause anxiety, distress, and embarrassment in caregivers
- Caregivers unable to handle the conflict may disrupt the continuity of care at home
- Disruption of care leads to confinement at home or institutionalization
- ISB can cause a conflict between ethical and legal responsibilities of clinicians, since hindering normal sexual expression can be seen as a violation of the principle of autonomy; therefore, the capacity to consent needs to be assessed.
Psychosocial Issues Often Contribute to ISB
These can include:
- Mood instability
- Previous patterns of sexual activity and interest
- Lack of habitual sexual partner
- Misidentification of someone else as usual partner
- Lack of privacy
- Under-stimulating environment
- Unfamiliar environment
- Misinterpretation of cues (mistaking the gentle touches of routine care with sexual touch or the sympathetic hug of a friend with sexual interest)
- Potentially many other aspects influence ISB
Management Plan for IBS Patients
According to Drs. Giorgi Rioccardo and Hugh Series, (ncbi.nim.nih.gov) the first step for patient management is to thoroughly assess the patient for personal, clinical, and sexual history, including who is involved, what form the ISB takes, when and where it occurs, how frequent it is, and other factors such as potential precipitants and consequences of the behavior. It should include laboratory testing and neuroimaging to evaluate for delirium or lesions. If the patient is severely impaired, then a history should be obtained from the caregivers or family member]. It should be emphasized the importance of considering the appropriateness or inappropriateness of a sexual behavior according to the larger context, and managing contributory factors such as boredom, loneliness, or misinterpreted gestures of communication.
Some behavior measurement tools for patients with dementia include items relating to ISB. The Ryden Aggression Scale contains a section on sexually aggressive behavior including making obscene gestures, touching body parts of another person, hugging, intercourse, or kissing. The St Andrew’s Sexual Behavior Assessment (SASBA) is based on continuous direct observation of four categories of ISB, each with four levels of severity, helping clinicians to standardize their documentation of ISB.
A systematic physical and mental state examination and a review of the current medication regime must always be carried out. In the case of an abrupt onset of the ISB, laboratory testing and neuroimaging studies to evaluate for delirium or a new structural lesion should be considered.
This, of course, is the responsibility of the patient’s family and medical team. As caregivers, the task is to provide daily care for the patient, while understanding the complexities of the illness.
Medications May Give Some Relief but Sometimes Make IBS Worse
Neuroendocrine factors affecting ISB include androgens, estrogens, progesterone, prolactin, oxytocin, cortisol, pheromones, and neurotransmitters and neuropeptides including nitric oxide, serotonin, dopamine, adrenaline, noradrenaline, opioids, acetylcholine, histamine, and gamma-aminobutyric acid.
Psychotropic drugs such as levodopa, benzodiazepines, and alcohol have all been linked with increased agitation and sexual disinhibition. Therefore, a physician must always go very slowly when trying new or increasing drug therapy. Even with physicians’ best efforts, medication may not be the answer for all patients.
Non-Pharma Intervention is First-Line Preference
Because of the appropriate concern for patient safety and ethics, the preferred treatment is through non-chemical means. However, problematic behavior, lack of trained caregivers and a perceived notion that medications work for these patients, physicians often resort to over-medication. It is imperative that staff be thoroughly trained in IBS care to avoid misunderstanding of the patient illness and treatment options. The line between over-medicating a patient in order to avoid staff embarrassment and discomfort has to be carefully weighed against a careful evaluation of staff management skills. Therefore, it’s the caregiver’s responsibility to familiarize oneself with the surrounding issues in order to be a more effective and supportive caregiver.
Tips for Patient Management
Most people are intimidated and/or embarrassed when faced with unwanted sexual advances. The first part of caring for an IBS patient is to understand it’s not personal to you. You are not the object of their desire. You just happen to be there at the moment. This recognition allows a caregiver to step back emotionally and handle the situation with a clear frame of mind. The patient is depending on the staff to care for him/her and this is part of the illness.
Desire is a neurobiological reaction to thoughts, feelings and sensations. The patient has little control over the neurobiology of ISB. Dysfunction of the frontal lobes is known to trigger disinhibited behaviors. Bilateral lesions of the temporal regions result in Klüver-Bucy syndrome, which includes autoerotic behavior and hyperorality; hypersexuality and has been reported after temporo-limbic strokes], tumors, and epilepsy. Some authors have conceptualized hypersexuality as being obsessive-compulsive in nature, thus involving cortico-striatal circuits, as in Huntington’s disease, Tourette’s syndrome, and Wilson’s disease. Lastly, lesions to the right hypothalamus and periventricular area can cause manic symptoms, including increased sexual arousal. Once staff can control his/her own reaction to IBS, it becomes easier to care for the patient.
Suggestions for Redirecting the Patient
Redirecting the patient may become a never-ending task. It requires patience. It’s most effective done in a consistent, gentle, firm, friendly manner. Some suggestions are:
- Change the environment to avoid boredom
- Adjust social cues to avoid misunderstanding
- Say “NO, that is not appropriate” without embarrassment and then guide the patient into another activity.
- Be aware if the patient is using sexual banter to cover his/her own embarrassment. (i.e. during a bath or diaper change an erection occurs).
- Address the situation that exists in the moment by observing to the patient that the physical body is a common denominator among all people; thus, no need to be embarrassed.
- Avoid overstimulating television, movies, magazine can be helpful
- Nursing homes should provide single rooms and provisions for conjugal visits to reduce the frequency of ISB by satisfying the patient’s normal sexual drive
- At home, allow the person to have private moments
- Be consistent in redirection
- If the patient is masturbating in public, guide the patient to privacy
- If the patient is inappropriately touching someone else, guide them away and redirect their interest
- If the patient is inappropriately touching a caregiver, back away while redirecting the action
- Often, handing the patient a stuffed animal for tactile satisfaction helps (you’ll often notice patients rubbing the fabric of sheets or clothes consistently)
- Enhance communication with the patient
- Do not be embarrassed to address the situation verbally and calmly with the patient.
- Do not over-react to avoid embarrassing the patient.
- Use a third-party to explain to the patient why the action is inappropriate.
- Remember the patient may forget the intervention so repetition is required.
- Use both verbal and physical redirection techniques. For example:
- When a person is acting out, redirect their attention by suggesting a game, a walk, or a snack.
- When a patient tries to kiss inappropriately, back away while putting distance between oneself and the patient. Remind the patient the kissing action is inappropriate. Continue to redirect his/her thoughts towards another activity such as feeding the birds or artwork.
- When a person enters the bed of another person, simply redirect that person to his/her own room/bed.
- Consider the patient could be disoriented or searching for intimacy rather than sexual gratification.
- Avoid under-stimulation and boredom by keeping hands busy. Keep the patient busy with snacks, drinks, conversation, activities like art, exercising, walking.
- Providing a pillow, a large stuffed toy or fidget toys a patient can cuddle, fondle or play with (even inappropriately) can make an out-of-control patient less intrusive to the staffs’ personal space while providing tactile stimulation.
- Re-educate the patient to social norms by using gentle verbal and physical commands and reminders, although cognitive impairment may frustrate this option.
- In cases of exhibitionism or public masturbation, make it more difficult to undress by using clothing that opens in back, buttons instead of zippers or an elastic support over the waistband of trousers to hinder access. (Staff has more time to redirect the patient)
- Intervention techniques should be shared by all staff and family members in order to remain consistent in the approach; everyone on the same page.
- Remember the goal is try to promote an appropriate manifestation of sexual behavior rather than an eradication of it.
Communication is key. The ultimate goal is to assure the health and well-being of the patient. It requires a trained and dedicated team of doctors, nurses, and caregivers working in coordination with family members to understand an illness and use all available methods to achieve the best results.
Consistency of care and redirection is key to managing IBS. Skillful caregivers who work on the front lines daily understand the job can be stressful, yet rewarding. It also requires the support of other team members. Ultimately, it’s the caregiver that makes sure the patient experiences the best each day has to offer.