Tracey Maxfield

Dementia Awareness: What You Need to Know About Intimacy, Sexuality and Behaviors in Dementia

There is a widespread assumption that as we age, we lose our sexual allure and desire. The thought of older people being sexually active is often joked about or thought of as just ‘icky!’ With aging, there is a lessening of libido and a drop in hormone levels that reduces sexual urges, but love, affection and a need for closeness remains.

Dementia is a monumental life event that severely impacts numerous people, no one however, is more impacted than the romantic partner. The diagnosis means that the relationship is changed forever. Just as the person with dementia loses cognitive and functional abilities, many partners may also lose tangible benefits they received from the relationship: companionship, intimacy, affection and division of household tasks.

However, the onset of dementia does not have to signal the end of a healthy sex life. Most people with dementia remain sexual beings with a need for emotional security, self esteem, affection and physical closeness. In fact, for the person with dementia, sexuality becomes a means of maintaining an identity and a way to grasp glimpses of love. Sadly, there are times, when sex or expressions of physical intimacy and closeness are the only way that the person with dementia has left to communicate with others.

Many couples find that they can still be close through their sexual relationship, even when other means of expression have diminished. Moreover, Some couples find new and different ways of sharing closeness, comfort and intimacy. Unfortunately, some partners may be so exhausted with caregiving responsibilities they are too tired to enjoy an intimate relationship; or may find that the physically intimate tasks they must perform for the person with dementia can put them off a sexual relationship. Other partners feel a complete disconnect in the relationship as the person with dementia has changed so much and is not the same person. For many partners, a conscious adjustment will be necessary for romantic life and/or a relationship too continue, expect less conscious acts of love, but know there will still be those subtle moments of love and closeness.

In general, dementia diminishes sexual behavior because there is:

• Less brain function, loss of the higher level cognitive capacitates necessary for communication of ideas and feelings. The emotional needs and desires remain; however, the expression of this need varies greatly from subtle gestures to highly inappropriate social behaviour.
• Less sexual hormones
• Less of everything to get things going!

Unfortunately, in some people with dementia, when short term memory vanishes, behaviors such as fear, sadness, happiness, anxiety and sexuality are heightened and this can be when inappropriate sexual behaviors first take place. For example, we know that in some people with dementia (especially with frontal lobe involvement) social inhibitions falter, that psychosis and paranoia create chaos in relationships, and that certain medications may lead to an increase in sexual activity, and this can leave the caregiver devastated and trying to deal with his/her own emotions. Caregivers are blindsided by the development of unexpected sexual behavior. Not only are they unprepared, but they also do not know how to react to it. Also, a well-known phenomenon in people with dementia is regression back to past experiences, and for many, they may regress to past sexual situations (due to neuro chemical structural deterioration) and exhibit prior behaviors e.g. same sex attraction.

When sudden, unexpected sexual behavior begins, ask yourself if the person with dementia has:

• Started a new medication or medication doses have changed
• Drunk alcohol
• An elevated blood sugar (if diabetic)
• Possible delirium

Strategies that may help you manage the behaviours:

• Redirection
• Distraction

It is important to try to not take the person’s behaviour personally, such behaviour is likely caused by difficulties and changed perceptions related to the dementia. However, do not tolerate behaviours that make you uncomfortable and/or unsafe. Talk to your doctor or geriatric psychiatrist. If sexual behaviour continues, then medication will likely be required.

Over time, and certainly as the dementia progresses, it is not unusual for some partners to form or want to find relationships outside their commitment to the person with dementia. This is a very difficult time, as they may encounter societal and religious pressures and feel enormous guilt. It is important to remember that the healthy partner is also experiencing tremendous loss of love and support and still needs to feel love and support too. Similarly, it is not uncommon for people with dementia in residential care homes to be attracted to and want to pursue relationships with other people in the care home.

Sexuality is an inherent part of being human, and is experienced by every person. If you have any questions or concerns, please reach out and speak to someone: your doctor, family, a trusted friend, a counsellor, a religious/spiritual advisor, community healthcare clinician or social worker, or call the Alzheimer’s Association 24/7 Helpline at 1-800-272-3900.