The physicians who diagnose Alzheimer's disease discuss the cognitive and behavioral changes a patient will experience during the course of the disease, and how these changes will affect their partner. But how will the diagnosis affect the intimate relationship between patients and their partners? Many couples are too embarrassed to ask the questions they really need answered.
Sex is important; to some people it is a non-negotiable need. Many couples find it beneficial to have a discussion soon after diagnosis about their individual expectations. Navigating the territory of sexuality and dementia can be murky. Ideally, decisions should be based on what works for both people individually and as a couple.
Most Alzheimer's patients are diagnosed in their mid-seventies. Although the aging body is no stranger to erectile dysfunction, vaginal dryness or changes in frequency, intensity or even ability to orgasm or ejaculate, these issues can often be accommodated with products, pharmaceuticals or good old-fashioned innovation. A dementia diagnosis not only introduces other sexual issues, it can also exacerbate existing problems. As a person's cognition changes, so do the ways in which they relate to their partner.
The ebb and flow of dementia symptoms can create tension in and out of the bedroom. A person with dementia may not always recognize his or her partner, and may respond inappropriately to verbal or physical cues. Personality changes can mean a person who was once meek may be more aggressive or vice versa. Dementia patients may make sexual advances toward strangers or forget their marriage vows, which they formerly treated as serious and binding oaths. Mistaking a relationship with one's partner is not uncommon. For example, a woman could think her husband is her father, deem his advances inappropriate, and react accordingly. Proper sequencing, something that is primary to both sex and intimacy, deteriorates with Alzheimer's. The unspoken language of a couple becomes disjointed. Partners often express a desire for sex in nonverbal ways, but these subtle cues may not be picked up or understood by someone with Alzheimer's. It's not just the couple's sex life that may suffer as a result, but any sustained form of intimacy.
In couples who have been together for decades, these changes can be disconcerting or even shocking for the partner without dementia. During the sex act, dementia-related symptoms such as limited attention span and lack of focus can make the partner without dementia feel unsatisfied, poorly treated or "used." The idea of being used is also fed by common situations such as a person with dementia not recalling their partner's name, yet continually making sexual advances. Conversely, some partners wonder if the person with dementia can give informed consent for the sex act"”even questioning whether their behavior could be classified as rape.
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A partner without dementia can sometimes misunderstand what is occurring; some actions aren't unequivocally sexual in the context of dementia. For example, a person with dementia might undress because his or her clothing feels uncomfortable, but will not explain the behavior, which may make it seem like a sexual overture. Hypersexuality in dementia patients, usually associated with men, is a myth based on accounts of disinhibition that can result in behaviors such as public undressing. According to the Alzheimer's Association, about 50 percent of men with Alzheimer's experience erectile dysfunction.
Sex and Late Stage Dementia
Most sex-related issues only are present in the early to moderate stages of dementia. In late stages, intercourse usually isn’t possible due to physical constraints. However, the agitation often experienced by late-stage Alzheimer’s patients can sometimes be alleviated by gentle touching and soothing words. The sexual parameters of this part of the disease course primarily encompass a softer form of physical comfort rather than more intense sexual encounters.
Many late-stage Alzheimer’s patients live in nursing homes where workers generally aren’t trained to see residents as sexual beings. Hence, even innocent interactions such as snuggling fully clothed with one’s partner can be met with anything from dubious stares to outright chastisement. There are some notable exceptions throughout the country where residents and their partners are accommodated by the facility. Several videos are available online to train staffers how to graciously allow nursing home residents their intimate moments.
What makes sexuality and dementia a particularly thorny issue is that many couples view sex as the ultimate expression of the love they feel for their partner. To these couples, it is yet another form of communication that dementia has robbed them of. Communication is further complicated when the person without dementia acts as both a caregiver and a partner. The duality of roles can be difficult, troubling and, for some, seemingly impossible. Support groups are essential for most couples dealing with a dementia diagnosis—and critical for partners without dementia. The Alzheimer’s Association is a good place to start searching for resources in your community.