Ethics, sexuality, and dementia in long-term care

Alisa Grigorovich and Pia Kontos suggest that long-term care residents with dementia can benefit from leisure and social activities that are supportive of sexual expression and the formation of intimate and romantic relationships.

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Recently, media stories on dementia have focused on the sexualities of persons living with dementia in residential long-term care settings, such as nursing homes. This media attention has been predominantly negative, consisting of descriptions of sexual violence, and apocalyptic warnings of the legal, ethical, and moral dangers of allowing persons with dementia to express their sexuality.

Often the primary criterion used to determine whether sexual encounters between residents with dementia are involuntary is the cognitive ability of the female resident. Frequently, she is characterized as globally incapable of agreeing to sexual activity because of cognitive impairment.

Consider, for example, the now infamous case of Henry Rayhons. He was accused (and ultimately acquitted) of sexually assaulting his wife who had dementia. As well, there is the lawsuit filed in a case involving two residents with dementia who had intercourse while living in Windmill Manor. While such stories highlight the importance of protecting vulnerable persons from sexual abuse, they ignore the need to also ensure that persons with dementia have opportunities to pursue intimate and romantic relationships.

Sexual expression is a universal human need that transcends age and disability. It has many positive health and wellness benefits, including the opportunity to experience pleasure, decreased pain sensitivity, and increased relaxation. However, older persons living in nursing homes often experience reduced sexual freedom.

Health practitioners and administrators often hold negative and judgemental attitudes about aged sexuality and dementia. And so, when they are confronted with overt sexual activity involving residents, though unsure about what to do, they nonetheless feel compelled to intervene. This is because the sexual expressions of persons with dementia are primarily seen as behavioral problems to be managed and treated. Sometimes, this treatment will include some form of restraint such as pharmaceuticals that suppress sexual desire.

As well, there are issues of privacy. The physical environment of long-term care facilities is not designed with the privacy of residents in mind. Many facilities have open concept designs and ‘open door’ or ‘no locked door’ policies. Meanwhile, few nursing homes have sexual expression policies. As well, information about residents’ sexuality is routinely shared with family members, such as spouses and children, without considering this to be a violation of residents’ privacy.

In these ways, the sexualities of older persons with dementia in long-term care facilities, are managed rather than supported. This is because the primary ethical approach used to guide decision-making is principlism. This approach defines appropriate ethical conduct for health practitioners with reference to four core principles: autonomy, beneficence, non-maleficence, and justice. These principles support intervening in residents’ sexual expression, as necessary, to prevent harm to self, or harm or offense to others. This approach, however, wrongly assumes that the capacity for self-expression, including sexuality, is entirely the product of autonomous, cognitive and reflective decision-making.

In our view, this approach to sexual expression of persons with dementia living in long-term care is problematic. It too easily justifies undue interference by justifying intervention rather than facilitating freedom of self-expression.

We propose an alternative ethic grounded in a model of relational citizenship. This model upholds sexuality as a form of embodied and relational self-expression that is fundamental to being human. It recognizes persons as corporeal, contextual, and embedded individuals with capacities, senses, and socio-cultural dispositions of the body that are central to self-expression, interdependence, and the relational nature of engagement. It also challenges the assumptions of loss of agency with dementia by treating the body itself as having both creative and intentional capacity.

Our ethic broadens the goals of dementia care from the exclusive duty to protect persons with dementia from harm, to the duty to also uphold and support their right to sexual expression. Furthermore, it underscores the importance of supporting sexual expression through institutional policies, structures and practices that nurture and facilitate the realization of sexual rights. This duty requires concerted efforts at the individual, organizational and societal levels. In particular, it demands that we recognize that persons with dementia have sexual rights, and that we support creating opportunities for them to express these rights.

We advocate for the introduction of health promotion and public policy initiatives to raise awareness of, and to counteract deeply seated prejudices about, aged sexuality and dementia. We also advocate for the development and provision of diverse leisure and social activities for long-term care residents that are supportive of sexual expression and the formation of intimate and romantic relationships.

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Alisa Grigorovich is a Postdoctoral Fellow in the Dalla Lana School of Public Health at the University of Toronto. @AlisaGrig

Pia Kontos is a Senior Scientist at Toronto Rehabilitation Institute-University Health Network and Associate Professor in the Dalla Lana School of Public Health at the University of Toronto. @PiaKontos