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.
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.
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.
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.
"How to respond to this in an appropriate and sensitive way that is respectful of human rights is very complex," said Peisah, especially when family members see one resident as a victim and the other as a predator.
Facility staff are also often unsure about the legalities of sexual activity with someone who is unable to consent. However, Peisah and other Australian experts agree that people with dementia can often make choices about sexuality.
"It's not possible to make blanket statements that anyone with dementia lacks capacity and that they can't make decisions about things. People with dementia do make decisions on a daily basis. Taking medication for example, if they don't want to swallow a tablet they will let you know in some way -- they may spit it out, you can see they don't want it in their mouth," said Michael Bauer, a senior research fellow at La Trobe University and an author of the studies about attitudes to sex among care workers and residents with dementia.
Bauer suggests that staff need to look for non-verbal cues such as facial expressions and other body language to identify whether a resident is comfortable and wants to be with someone. "The staff need to take in a whole range of factors about the person, the sort of person they are now and were and the behaviors at this point in time with dementia. Behaviors can also fluctuate from moment to moment," he said.
Saul Isbister, a sex worker and president of Touching Base, a non-profit organization that helps people like Emma connect with disabled clients, has mentioned that memory loss can be a concern. "We have had cases where people have forgotten that they've been visited by the sex worker, and they feel like the staff are lying to them," he said.
In one case, a token system was set up for the client, where a sex worker would leave the resident a token as proof of the encounter.
In Australia, the closest thing to formalized guidelines around these issues is the Charter of Residents Rights and Responsibilities, which essentially intends to ensure that every older person be treated with dignity and respect, and live without exploitation and abuse. According to the charter, residents in elderly care facilities have a right to social and personal relationships without "fear criticism or restriction." Furthermore, residents have a right to privacy. Peisah says that carers should consider the charter before making a decision about intervening in sexual activity. "Nursing homes facilities have an obligation to support and facilitate intimate and social relationships of their residents," she said.
Nursing specialists say this doesn't always take place. Rhonda Nay, a registered nurse and an Emeritus Professor at La Trobe University, who also contributed to Bauer's studies, believes that in a significant proportion of cases, sexual situations among dementia patients are not managed well. "There is a long tradition of not knocking when staff look into an older person's room. That has improved to the extent that the nurses knock but they tend not to wait for an answer," Nay said.
Emma has also had experiences with limited privacy: "They walk across the room and I'm draped across an elderly gentleman's lap while he's in a wheelchair and I'm dressed in stockings and suspenders."
Dealing with confronting situations is something that nursing home staff may have to get used to. The Parliament of Australia is conducting an inquiry into the care and management of Australians living with dementia. The National LGBTI Health Alliance submitted that homosexuals and transgender people have "unique challenges" in aged care facilities. The Alliance says that currently same-sex partners are not always consulted about care decisions, even when they have provided power of attorney. In nursing homes, same-sex couples are also often restricted in the way they can express affection.
The Alliance also wants staff in residential care facilities to be trained in the needs of transgendered people, such as trans-specific health needs. "For example, trans women living with dementia and BPSD will require daily vaginal dilation, if they have had vaginoplasty," the submission says.
Isbister, from Touching Base, has not noted a rise in older clients from non-heterosexual backgrounds. "It hasn't become obvious yet through our referral system, but that is an inevitability with an aging population who are more comfortable expressing their diversity and sexuality," he said
"There are fears associated with aging that obviously may include death or loss of sexual function," Isbister said. "When you have an opportunity to allay those fears I think it brings a lot of psychological comfort as well as physical relief."