FlowersChallenging Behaviors for the Caregiver

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The Changing Face Of Intimacy
By Dan Kuhn, LCSW

When a married person is affected by Alzheimer's disease or a similar dementia, the couple faces enormous challenges. Nearly every aspect of the relationship is tested by the diminishing abilities of the impaired partner and the healthy spouses increased caregiving responsibilities. The expression of intimacy, particularly sexuality, is one of the main aspects of marriage that the disease often changes.

Although a number of chronic diseases--and the medications to treat them--have been identified as causes of sexual dysfunction, little is known about the impact Alzheimer's disease has on sexuality. Unfortunately, this topic has received scant attention in the professional literature. Data from a few studies of people with Alzheimer's disease indicates that sexual dysfunction may be commonplace.

For example, a 1991 study done of 30 couples in which one partner had AD reported only 27% were still sexually active, compared to82% of an elderly control group. A 1990 study done on 55 men with Alzheimer's who had an average age of 70, reported 53% were impotent; this percentage is considerably higher than expected for this age group. In a 1989 study, 22 of 26 wives of men with AD reported that the disease had affected their sexual relations with their spouses.

In this study, eight men with AD had little or no interest in sex, and four men became more interested in sex. Then of the wives lost interest, even though their husbands continued to want sex. The reasons for the loss of sexual functioning are not fully understood, but a number of factors are involved. For the impaired person, structural changes in the brain and nervous system may account for sexual dysfunction. Also, coping with the disease-related changes in memory, thought and behavior are stressful for the person with AD.

Psychological reactions such as depression and anxiety are fairly common, too, and are known in the general population as well. The healthy spouse's desire for sex may be affected by the personality changes in the impaired person. Forgetfulness, repetitious questions, short attention spans, and annoying behaviors can diminish sexual desires.

For instance, a person with Alzheimer's may forget how to make love, or may forget immediately after it is over. Consequently, the healthy spouse may feel rejected or angry. Or a healthy spouse may fear "taking advantage" of a willing partner with AD and feel ambivalent about engaging in sex. The ongoing emotional and physical demands of caring for a demented person are also likely to inhibit sexual desire.

As a result, mutually satisfying sexual activity may decrease as a priority in the relationship or may no longer be possible to achieve as a couple. Occasionally, people with Alzheimer's disease are overly interested in sex. This hypersexuality may include aimless masturbation and frequent attempts to seduce others. Such behaviors are symptoms of the disease and are likely related to brain damage, rather than maliciousness.

Furthermore, such behaviors may signal the need for attention, reassurance, and closeness instead of the need for sexual gratification. Touching, hugging, and other forms of affection may help meet this need. Since sex is a private matter, there is usually a reluctance to discuss it with others. However, it may be helpful to seek the advice of a professional.

One's doctor should always be notified for possible medical intervention in cases of persistent sexual aggressiveness. The healthy spouse, in particular, may need accurate information, support, and counseling to cope with changes in the sexual aspects of marriage.

Of course, sexuality is only one expression of the gift of love. Even if sex in a relationship is lost due to Alzheimer's, other expressions of love and affection may continue to thrive. Respect, care, companionship, and intimacy make take on a new and deeper meaning. A special grace marks those who have learned to live with the disease and continue to find meaning in their marriage. The heartbreak of Alzheimer's disease may be offset by the fulfillment often experienced in keeping to the commitment "to love for better or worse, in sickness and in health."

Courtesy of the Rush Alzheimer's Disease Center


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