Intimacy is an aspect of relationship that most people strive to create. For some, it is bound up with their sexuality; for others, it has nothing to do with sexuality. For each of us, it is found in some relationships and absent from others. It contributes to a sense of well being, to self-esteem and to dignity. It also enhances the meaningfulness of life by contributing to one’s sense of “giving to” and is often a part of the act of nurturing and being nurtured. Intimacy combines with sexuality to bring richness to a sexual relationship and enhances the feeling of being valued.
Any chronic disease tends to intensify the strengths and weaknesses that existed in the relationship prior to the onset of the disease. Couples who have enjoyed a harmonious marriage, complete with a commitment to each others’ pleasure, are sensitive to the needs and vulnerabilities of their partners and help each other function. Within established relationships, sexual problems may impair quality of life and generalize to impair affection and closeness. Such additional problems may be particularly distressing to a couple trying to come to terms with one partner having a terminal and “person-altering” disease.
It should not be assumed that sex will be worse with the onset of AD. This depends on prior history and expectations. However, it is not uncommon for sex to become “mechanized,” with a feeling by the spouse that there is a loss of intimacy, empathy and sense of sharing on the part of the person with AD. This is a part of the disease process and accompanies a more general loss of insight and an increase in self-centeredness. Long-term, satisfying relationships usually (but not always) have fewer problems. Late-life marriages, often made on the premise of action sharing, not dependency and care giving, may be in jeopardy. When one partner finds him or herself caring for a dementing person early on in a new marriage, with a resulting loss of affection as well as action, resentment often follows.
There have not been many studies of changes in sexuality or intimacy associated with AD, but in those that have been published, about 25% of spouses reported that the onset of AD affected sexual intimacy or caused changes that were perceived as problems. Four types of changes or problems are commonly identified:
? Hyposexuality, in which there is less interest in sex and contact is rarely initiated, or there is an inability to engage successfully in sex.
? Hypersexuality, in which there is an increased desire for sexual contact, often without regard for the partner’s needs.
? Inappropriate verbal or other behavior, often inconsistent with prior behavior.
? Misidentification, in which the spouse or other caregiver is perceived as another familiar person and an inappropriate sexual advance is made.
Early on in AD there may be a lack of sexual drive or initiative. An observant spouse might notice that there are difficulties with memory and other cognitive functions, or observe this same lack of initiation in other areas of daily life. A loss of desire may be associated with depression, a condition quite frequent in the early stages and, of course, treatable. A loss of initiative does not necessarily mean a rejection of sexuality but may mean yet another role change for a spouse, especially for women who may never have initiated sex in their marriage. It is very possible to continue a satisfying sexual relationship for some time, if the spouse is now willing to take the lead. However, caregivers (especially men) have reported that they come to feel that they are taking advantage of a person who, in a trusting relationship, readily engages in sex but may not truly understand the meaning of the act any longer. Another aspect of role change is that it becomes increasingly harder to feel sexually aroused by someone when the care giving relationship feels more like that of mother or father. As the dementia advances the caregiver becomes a security object for the person, which often results in “shadowing” or clinging behavior that is reminiscent of a small child.
Ultimately, it is most likely that sex will become less frequent and less satisfying. The research has shown that there may be neurological causes for impotency, with erectile failure in about 60% of men with AD. Lower levels of testosterone, side effects of some medications, and the presence of other diseases may also play a part in a loss of sexual desire. It is important to emphasize that a good medical evaluation of any problem with sexuality is essential, especially if both partners value the relationship. However, it is also important to recognize that the care giving role may becomes all-encompassing and exhausting, especially as the disease advances and the setting aside of a sexual relationship may be a relief to many caregivers.
Hypersexuality may also be neurological in origin as the dementia affects the part of the brain that controls inhibition of impulses and feelings of satiation. The person with the disease may derive little satisfaction from the sexual act and be driven by a compulsive need to initiate sex again and again. Alternatively, the person may simply forget that sex had taken place and initiate a sexual advance soon after having had intercourse. Sexual demands may increase from a longtime stable frequency of one or two times a month to four or five times a day, perhaps resulting from a need to affirm a sense of self-worth. The threat of “loss of self” that a person seems to suffer in the early stages of AD may be overwhelming. The person may become less sensitive to the needs or responses (or lack thereof) of his or her partner, leaving the partner feeling more like a “tool” or sex object than a cherished partner in an intimate relationship.
Initially, this increased interest in sex may be acceptable and easy to handle. If, however, demands exceed a spouse’s desire or ability to fulfill, then some alternative methods of management must be employed. The spouse or caregiver must be especially observant and sensitive to environmental stimuli that may provoke the sexual interest of the person. Behaviors or actions that may be sexually suggestive must stop, which may mean specific instructions to paid staff not to “flirt.” A spouse might consider moving into a separate bedroom if sexual demands become so frequent as to make sleep virtually impossible. For those with paid caregivers for whom this is a problem, employment of a same-sex caregiver might be a solution. It may also be helpful to direct the person to masturbation, a solution that has been found to be particularly helpful with some men.
It becomes important for spouses to see hypersexuality, or a heightened interest in sex, as another facet of the disease. Caregivers are vulnerable to yet another potential weight of guilt associated with a loss of sexual desire for their partner as the care giving role increases, to shame at this aberrant sexual behavior on the part of their spouse, and to a sense of loss of their own sense of self as they surrender themselves totally to the needs and demands of the person with AD.
Inappropriate Verbal or other Sexual Behavior
Disinhibition, especially in frontal lobe dementias such as Pick’s disease, may involve such behaviors as lewd speech, inappropriate undressing, and public masturbation. It is important to recognize these behaviors as disease symptoms and refrain from a judgmental attitude. We all know many words that we do not regularly use in our everyday conversation, and it may be helpful to remember that under normal circumstances we inhibit the use of such language. The person with a dementing disorder may become less and less able to inhibit the use of such language or judge when it is appropriate to use it. For example, some men would not dream of using foul language in the presence of a wife, daughter or other woman but use it freely in an all-male setting. As his dementia progresses, this person may be unable to monitor his use of such language and respond with these words in the presence of his wife, or other female help, in response to frustrating situations or when angered. In such situations it is important for the caregiver to understand the language as a sign of inability to cope with something occurring in the environment. Rather than recoiling in horror, speaking sharply or rebuking the person, it might be more effective to intervene to lessen the stress of the situation, and develop a keen sense of potential circumstances which might elicit such responses in order to avoid these whenever possible.
When use of such language becomes very frequent and unacceptable it may be most effective to simply state strongly “That language is unacceptable!” and leave the person’s presence. Leaving the room, even for a few seconds, breaks the cycle of behavior and may be sufficiently aversive to reduce the use of such language to an acceptable level. Incidentally, this response (leaving the room) is very effective for reducing a number of inappropriate behaviors. It works because it removes the audience for the behavior, and because the person with dementia comes to utterly depend on the presence of the caregiver and feels unsure when it is removed. Thus, the loss of the caregiver even for a few seconds is aversive and acts as a punishment. Used effectively over time it will often extinguish troublesome behaviors without the caregiver ever having to raise his or her voice, nag, plead, or become verbally or physically abusive. This is a considerable plus for the caregiver, who may otherwise end up feeling even more guilty and upset.
Behavior such as “inappropriate” undressing is usually not sexually motivated at all, but rather, innocent behavior resulting from an inability to plan ahead or consider the propriety of an action. A matter-of-fact approach is necessary, as well as a curious mindset that regards the behavior as an expression of an unmet need and begins to look immediately for triggers. The person may be too hot, clothing is too tight, the person was changing their clothes and became distracted by something causing them to walk into another setting half dressed or naked. Caregivers may need to think about looser clothing, or perhaps dressing the person in layers of clothing so that there are more things to remove, taking more time and effort. With this technique a habitual undresser might be “caught” and distracted earlier so that embarrassing situations are avoided.
Misidentification of people usually occurs later in the disease when memory for children and spouse is gone and all that remains is memory for siblings and parents, in situations where the spouse has died or is gone from the home for some reason, or when the person has been placed in a new living situation and separated from their spouse. It may be hurtful for caregivers, who respond as if personally affronted when the person misidentifies someone else as their spouse, mother, daughter, etc. Again, caregivers should see these instances as symptoms of changes in the part of the brain that is responsible for recognition memory. An adult daughter may be upset and disturbed when her father makes sexual advances towards her, when all that has really occurred is that he has responded to his feeling of closeness towards her (normal and natural for a father) and mistaken her for the person with whom he is used to having sexual relations (normal and natural within the context of marriage). It is even easier to understand if his daughter resembles his wife in coloring, build, voice, mannerisms, etc. This type of advance is usually easily diverted if understood and dealt with in a calm and non-judgmental manner. This father would probably be horrified if he could understand that it was thought that he had made sexual advances to his daughter!! Some reality-orientation in such potential situations may be very helpful. “Hello Dad, this is your daughter Susan. Tell me about your day,” is an example of orienting along with open-ended inquiry that allows the person to respond in a socially acceptable manner. Again, distraction is a useful technique, and ice cream, a walk, TV or other activity may divert or prevent inappropriate advances. For situations where there is a paid care provider, family should be sure that there are no triggers for sexual responses such as suggestive clothing or behaviors on the part of the care provider.
Occasionally, paranoid delusions, a common symptom of some dementias, can involve a persistent and strong belief that the spouse is not the spouse. It can be very distressing for a spouse to be constantly rejected by a mate who believes that he or she is an imposter, or is having affairs. To argue innocence is futile. This type of behavior requires incredible patience, an ability to not take it personally, and possibly medical help to deal with this symptom of psychosis if it interferes with care giving.
In conclusion, the general approach to management of issues involving intimacy and sexuality can be summarized in four main points.
Understand the cause or trigger for the behavior
Adopt a Matter-of-Fact approach
Distract – Don’t argue
Get support – your support group may be the most appropriate place to raise these issues and get helpful suggestions as well as emotional support.
Above all, for all these behaviors, caregivers should be careful not to over-react or express shock. Shaming the person will only serve to demean them and reduce an already fragile self-esteem. It is also important to remember that even though demented, persons used to close physical relationships still retain a need for physical human closeness, which has nothing to do with sex! Physical touch is a basic human need and an important way of communicating caring.
Demented persons are at great risk for loss of tactile stimulation, and may decline faster if they do not receive it. There are few of us who would argue that a child does not need physical touching, hugging, stroking, etc. Even those unrelated to a child will reach out to touch and comfort him or her. As dementia progresses, the affected person may find themselves in a situation where they are unable to reach out and touch for themselves, and are unable to ask for a hug, as many of us do on a daily basis.
A sense of intimacy may be maintained in opportunities to give and receive affirming touch, and “togetherness” may be fostered through reminiscing about enjoyed experiences, rituals and traditions. Caregivers, be they family or professional, can find a myriad of ways to provide appropriately for the human need for touch that almost all persons retain until very late in the disease. We should also remember that the spouse caregiver has also been deprived of a source of physical touching in many instances, and has lost a major vehicle for intimacy. He or she appreciates our hugs just as much!