© Springer Science+Business Media New York 2015
Verna Benner Carson, Katherine Johnson Vanderhorst and Harold G. KoenigCare Giving for Alzheimer’s Disease10.1007/978-1-4939-2407-3_77. Sexuality and Intimacy in Those with Dementia
(1)
C&V Care Specialists, Inc., Fallston, Maryland, USA
(2)
C&V Care Specialists, Inc., Williamsville, New York, USA
(3)
Dept. of Psychiatry Behavioral Science, Duke University Medical Center, Durham, North Carolina, USA
Keywords
MasturbationRisks involvedCaregiver’s response both in home setting as well as in facilitiesContinued need for closenessReasons for inappropriate behaviorsLoss of inhibitionsLack of desire versus heighted desireResponding to son or daughter as if he/she is the wife/husband of many years agoAnother issue that challenges family and paid caregivers alike has to do with the expression of sexuality in older adults with dementia. Contrary to common perceptions, sexual behavior may actually increase in those who have dementia. Even with profound cognitive impairments, many of those with dementia enjoy a high degree of sociability and the capacity to engage in intimate relationships. In fact, to be human is to be sexual—we are “hardwired” for this. Sometimes, the desire to be close to another person manifests itself in positive feelings of being cared for and desirable. Sometimes, this same desire for closeness is manifested in flirtation, affection, passing compliments, proximity to another, as well as sexual intercourse. The expression of sexual feelings can be directed to a spouse, a professional caregiver, to other residents in a facility, as well as toward adult children of the person with dementia. The adult child might closely resemble the person’s spouse when at a similar age. In this case, the sexual overtures are basically a case of “mistaken identity.”
None of us ever outgrow the need to touch others and to be touched, which is deeply ingrained in our biology. However, as we age, we are touched less and those with dementia are probably touched the least. This lack of touch might be a factor in the sexual behavior that is seen in those with dementia (Heerema 2013)
In general, there is a reduction in sexual drive in about 25 % of those with dementia (Miller et al. 1995). An increase in libido is reported in about 14 %. The incidence of sexually inappropriate behavior is reported to be relatively low in persons with dementia—ranging from 1.8 to 15 % in samples of residents in assisted living facilities (ALFs) who are diagnosed with dementia (Tsai et al. 1999; Alagiakrishnan et al. 2005). However, for a family or caregiver who is confronted with challenging sexual behavior, the low percentage is meaningless—to the recipient of the inappropriate behavior, it feels like 100 %!
A survey of 250 residents in 15 Texas nursing homes found that 8 % said they had sexual intercourse in the preceding month and 17 % more wished that they had. In the journal Clinical Geriatrics, 90 % of 63 physically dependent nursing home residents said they had sexual thoughts, fantasies, and dreams (Cirillo 2014).
Some of the concerns that surround sexual activity in ALFs and skilled nursing facilities (SNFs) are the occurrence of nonconsensual sexual activity, unwanted sexual comments, advances, coercive touch, sexual inhibition, including exposure of genitals, public masturbation , nudity, and hypersexual desire/demands, the use of obscenities, and false accusations of sexual abuse between residents as well as between staff and residents.
Sexuality is not determined by locale and continues wherever the person with dementia resides. These facilities are scrambling to develop policies to provide guidance and legal security as the incidence of sexual behavior among residents is increasing.
Sexuality is one of the major issues of conflict for family members as well as for caregivers within ALFs and SNFs. Both families and caregivers generally support the individual resident’s right to choose, but when confronted with sexual activity, the “right to choose” comes into question. One of the issues is the difficulty for staff members who work in a senior living facility to support decisions that do not align with their own beliefs; likewise, adult children may express displeasure with choices their parents are making that may seem out of character.
Risks Associated with Sexual Activity Among Older Adults
The frequency of sexual behavior in older people, with or without dementia, is significant. Fifty percent of those between the ages of 65 and 74 are sexually active, and 25 % of those aged 75 and older are sexually active. Only 38 % of men and 22 % of women over age 50 discuss sexual problems with their primary care physician (Bancroft 2007).
This fact is important for a number of reasons. Once the risk of an unwanted pregnancy no longer exists, individuals cease using protection when engaging in sexual intercourse. Old age does not lessen the risk of contracting and passing on a sexually transmitted disease (STD). In fact, a 2013 report from the Centers for Disease Control and Prevention (CDC) stated that the incidence of STDs among older Americans is on the rise (CDC 2013).
An estimated 25 % of Americans who are HIV positive are over 50 years of age. Chlamydia rates among men between ages 45 and 64 increased nearly 200 % between 1996 and the end of 2006, similar to that in women. The reason for this increase is that a significant number of men in that age group remain sexually active, some into their nineties, due to the use of erectile dysfunction drugs such as Viagra, Levitra, and Cialis. This same study by the CDC showed that STD rates among men using Viagra were twice those of males not using the drug. A study in the Annals of Internal Medicine found that older men who use Viagra and similar drugs are six times less likely to use condoms compared with men in their twenties (Jena et al. 2010). Furthermore, STD educational programs seldom target the elderly.
Increasingly, ALFs and SNFs are requiring STD screening and a sexual history as part of the required medical examination prior to admission. The following case study illustrates the need for STD screening.
Sam, a 70 year old, was recently been admitted to an Assisted Living Facility. Soon after admission, Sam developed several lesions on his penis and inner thighs. The nursing staff concluded that the condition was due to incontinence and the use of incontinence pads. The nurses treated the lesions with a protective skin barrier, but there was no improvement. Only after reviewing Sam’s medical records and consulting with the physician did they realize the truth. Sam had contracted genital herpes almost twenty years earlier and still suffered from periodic outbreaks. In this case, proper treatment, infection control, and staff education were delayed because the nursing staff had failed to thoroughly review Sam’s medical history and failed to recognize a common sexually transmitted disease.
Additional Facts About Sexuality Among Elderly with Dementia: The Value of Touch
Not everyone diagnosed with Alzheimer’s will have the same interest in sexual activity. For some, interest in sexual activity wanes in the earliest stage of the disease. Others continue to enjoy sexual activity through the early part of stage 6 on the functional assessment scale (FAST) scale . However, whether or not the person with Alzheimer’s continues to be sexually active, that person benefits from touch. Touch decreases sensory deprivation, increases reality orientation, stimulates the mind, decreases pain, isolation, and vulnerability, and conveys trust, hope, and reassurance. The person with dementia may still enjoy being stroked and hugged but may be unable to initiate such physical affection. When partners no longer share a bed, some people with dementia find it comforting to have something to cuddle, such as a soft toy or hot-water bottle.
A 1-year study looked at the effects of gentle massage on two groups of older nursing home residents. One group was suffering from chronic pain, and the second group had dementia and was exhibiting anxious and/or agitated behaviors. The certified nursing attendants were trained by a licensed massage therapist to deliver “tender touch” massage. The project was divided into three 12-week phases, where different staff and residents were involved in each phase. Fifty-nine of 71 residents completed the 12-week program. Pain scores declined at the end of each phase, and anxiety scores declined in two of the three phases. Eighty-four percent of the nursing attendants reported that the residents enjoyed receiving tender touch, and 71 % thought this type of massage improved their ability to communicate with the residents (Sansone and Schmitt 2000)
Increased Sexual Interest
Some people with dementia find that their desire for sex increases. Some partners find this a welcome change, while others feel unable to meet the level of sexual demand. When the latter is the case, it can be difficult for the person with dementia. In this situation, some partners have said they feel wary of showing normal affection in case it is mistaken for a sexual advance. If the level of sexual demand feels overwhelming, it can be helpful to find something else to do together that can meet the other person’s need for intimacy, rather than making an outright refusal to a sexual overture.
Sometimes, aggressive behavior is a response to a sexual overture being hurtfully refused. It helps if the person who is turning down the overture considers the feelings of the person who is initiating the sexual encounter. A response that acknowledges the initiator’s needs, is respectful, and does not hurt the feelings of the other may help to prevent aggression. In some cases, it may be a good idea to keep safely out of the sexual initiator’s way until his/her mood has passed.
When demands for sex are inappropriate—either directed to the wrong partner or demanded too often, it is important to speak about this with the person’s physician who may prescribe medication to lessen sexually aggressive behavior. If the person is behaving in a way that distresses private duty nursing assistants when they are providing personal care—for example, when they are providing help with bathing , toileting, and dressing—family members can become embarrassed and may feel they should stop employing outside help . It is important that families share the concerns of the care workers with the physician, who may be able to make suggestions about strategies to handle the situation. For instance, it is normal for caregivers to giggle or laugh from embarrassment when a person with dementia makes sexual comments or tries to touch the caregiver in an inappropriate manner. The best response is a consistent one from each caregiver. If the caregivers all respond in the same way, the inappropriate behavior may diminish. The response should include a stern face without a smile, and a firm verbal response such as the following: “Mr. Jones, I do not like it when you talk to me like that—it is wrong!” There can be no smiling or giggling on the part of the caregiver, only firm and consistent limit setting will help this situation. If that strategy does not work, the family caregiver needs to discuss the behavior with the physician who might prescribe medication that can help (such as citalopram 40 mg/day).

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