Sex After Dementia

Desire for physical intimacy doesn't disappear when Alzheimer's sets in. Supporting that aspect of a patient's wellbeing raises a host of ethical questions.
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Earlier this year, a sex worker in Sydney, Australia -- I'll call her Emma -- got a call from a woman whose 93-year-old father was confined to a nursing home with dementia.

"You could tell in her voice that she was really nervous. But you could also tell that she knew what she wanted for her dad," Emma said. He missed the intimacy of sex.

Emma works a day job in elderly care, but she has also been a sex worker specializing in working with people with disabilities, including dementia, for 30 years.

"The needs and importance for social and physical relationships and in particular intimacy continue well into the moderate to severe stages of dementia."

This nursing home resident had been an "openly sexual" person in his later life and had now asked his daughter to find him a woman. The nursing home staff was supportive, welcoming Emma into the facility and assisting her to move the elderly man into a comfortable position.

Many of Emma's clients don't have long to live. The man died within a month and a half of her visit, but his daughter said he was more relaxed, less agitated, after seeing Emma. She remained grateful to her for her services.

"I've got something to give," said Emma. "I've got the most intimate gift of all."

How residents in care facilities should receive this gift is an ethical minefield. A study by Australian researchers found that nursing home residents "including those with dementia, saw themselves as sexual beings and with a continuing need and desire to express their sexuality." But a further study in the Australian Journal of Dementia Care by some of the same authors found that only 20 percent of Australian nursing homes had policies about sexuality or sexual health. Most of them framed intimacy among residents as disruptive or problematic behavior.

According to the World Health Organization, 35.6 million people have dementia worldwide and that number is projected to double every twenty years. A large proportion of those people with dementia will die in a residential aged care facility. While the elderly are free to do what they like in their own homes, once in facilities, their sex life is regulated by staff. Far from all of them are as sympathetic as the nursing home that Emma described.

The study in the Australian Journal of Dementia Care found that staff were anxious about addressing sex among their residents. They were chiefly concerned about the reactions of a resident's family, as well as the legalities of the arrangements.

Dementia can be caused by a range of pathology -- most commonly Alzheimer's, as well as small blood clots in the brain, and abnormal proteins called Lewy Bodies, among others. In some cases the frontal lobe, which is responsible for sexual drive and interest as well as inhibition, may be affected. As Carmelle Peisah, New South Wales branch chair of the faculty of psychiatry and old age at the Royal Australian and New Zealand College of Psychiatrists, told me, it can affect "the part of the brain that stops people from acting on their sexual urges in public, such as masturbating. People have thoughts that they wouldn't act on without dementia, but with dementia they might act on it because of this lack of impulse control."

In instances where residents might express their sexuality inappropriately -- say, by masturbating in public spaces of a nursing home, Peisah says that it is crucial for staff not to chastise the person. Instead they should be redirected to a private space, or be provided with an appropriate outlet for the expression of their needs and behavior -- or both.

Other aspects of sexuality, such as emotional feelings like intimacy and warmth, are driven by the limbic system of the brain. "The needs and importance for social and physical relationships and in particular intimacy continue well into the moderate to severe stages of dementia," Peisah said.

Then there is memory loss -- the most infamous and obvious symptom of dementia, eventually including the diminished ability to recognize people. Residents may not know who the object of their erotic interest is. "Sometimes people can't tell the difference between their spouse, the care worker, or a fellow nursing home resident," Peisah said.

In Alice Munro's 1999 short story "The Bear Came Over The Mountain," which was subsequently made into the critically acclaimed film Away From Her, the protagonist has to cope with his Alzheimer's-stricken wife entering a nursing home and falling for another resident, forgetting about her husband. The scenario is not uncommon in real life.

Last year, my own grandmother entered a residential aged care facility with vascular dementia. When I visited, she had little interest in talking to me. Instead, she held hands with Eric, a cheerful fellow resident with a room across her corridor. He introduced my grandmother as his wife. In Russian (she spoke no English), she told me that he was a neighbor from Belgorod, our hometown. I hope for their sake that whatever they had -- if they wanted it to -- extended beyond handholding, because within six months both of them had died. Neither Eric nor my grandmother had living spouses, and situations like Munro's story can be very distressing for living partners who feel they have been replaced. Still, considering the importance of the happiness and well-being of your loved one in their current, new reality, can be reassuring.

3868720982_e9fc117736_z.jpgSimon Blackley/Flickr

Peisah warns, too, that certain residents with dementia could be vulnerable to sexual or financial exploitation. These situations could be flagged by a power imbalance between a resident with dementia and their "partner" either due to a substantial difference in age or intellectual function, such as sex between a person with dementia and someone who doesn't have dementia, such as a carer.

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Marina Kamenev is a journalist based in Sydney.

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