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An Appeal for Autonomy: Sex and Dementia in Aged Care Facilities

Residential aged-care facilities (RACFs), which promote a balance between providing care and retaining autonomy, are often thought to be the best option for the elderly who can no longer live alone.

However, a 2012 study led by Dr. Laura Tarzia and published in the Journal of Medical Ethics has revealed that these services frequently come at the price of sexual expression. The study found that many RACF residents, specifically those with a form of dementia, were denied sexual relationships, which are considered by many to be a basic human right.

Although RACFs advertise an independent lifestyle, most lack sufficient privacy for sexual expression. If an opportunity for intimacy is indeed found, the privacy can be short-lived. Staff members are typically required to report any knowledge of a relationship. This is done so that management can be aware and the situation can be discussed with the families of the residents.

Such discussions often disregard the wishes of the resident. In these cases of resident sexuality, RACF management’s duty to appease the residents’ families often outweighs their duty to the residents’ independence.

The predominant attitude of the care and management staff at many RACFs may be a leading cause for the resistance toward sexuality. Elderly residents are often treated patronizingly by care workers, who see them as sexless or childlike. This mind-set, typical among members of the general public as well, is reflected in the term “ageism,” defined as the negative view of aging people, a view that is common in Western societies. Researchers Jocelyn Angus and Patricia Reeve note that ageism stems from cultural values including a fear of death, productivity-based societal worth and the association of youth with sexuality.

While ageism is a problem faced by many RACF residents who wish to be sexually active, it can become further complicated when those residents have dementia. Residents with compromised mental status undoubtedly risk exploitation. Therefore, when seeking to promote a safe environment for sexual expression in RACFs, staff members must clearly differentiate sexual abuse from consensual relationships between residents. For care providers, though, appropriately balancing nonmaleficence and autonomy can cause anxiety about the boundaries of their duty of care.  Because care providers often lack training and support when it comes to finding this middle ground, nonmaleficence tends to win out over autonomy to guard the residents from risk.

However, even when done with the best of intentions, it is unfair to generalize about all residents with dementia in this way. Dr. Tarzia writes, “Seeking to ‘protect’ individuals with dementia by not allowing them to express their sexual needs, thereby stifling their autonomy and personhood, is a far greater failure of duty of care.” What is really needed is a modern and accurate way to assess the risks involved.

More than 50 percent of people in RACFs have some form of dementia, but laws regarding consent don’t generally address people with dementia. Without specific guidelines, most RACFs favor a paternalistic, conservative approach to avoid criticism. Some demented residents have been deemed unfit to make high-stakes decisions related to finances or medical treatment, but the tests used for this are unsuitable for determining sexual-consent abilities. In these situations, a person-based, case-by-case plan needs to be developed to evaluate capacity for consent. Otherwise, the challenge will continue to be avoided by deferring judgment to people who are evaluating scores from inappropriate tests.

A person-based approach could be valuable in preserving autonomy for residents and improving their quality of life. Findings have indicated that maintaining meaningful contact and compassion can counter the negative health effects of loneliness in old age. As physical intimacy can be part of building and sustaining a strong bond in a relationship, allowing it when appropriate is in the best interests of all because it will help keep residents healthy. This situational approach would also allow the potential for abuse to be thoughtfully addressed without needlessly putting restrictions on safe, consensual relationships.

Dr. Tarzia summarized the team’s findings by saying, “You have got to remember these people are adults, they’re not children and yes they do have a diagnosis of dementia but that doesn’t mean they can’t make decisions for themselves about a lot of things.” Clearly, efforts need to be made to reverse the prevalent paternalistic attitude toward the elderly and establish appropriate guidelines for consent by people with dementia. And until then, care providers need to ensure that ageism does not pervade RACFs and undermine the autonomy of capable, consenting residents.

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Grace VanNoy

Grace VanNoy

Grace VanNoy is a past intern at the Montefiore-Einstein Center for Bioethics. She is a pre-med student at Bates College where she is studying Biology and Anthropology with a concentration in Public Health.

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