Sexual Expression in Alberta’s Continuing Care Homes: Capacity, Consent, and Co-decision-making

Abstract

In this article, we explore the role of substitute decision-makers (SDMs) in matters of sexual expression for continuing care residents with diminished cognitive capacity. We examine how Alberta’s current use of SDMs can enable an “all-or-none” approach to competence, wherein a person either has capacity to make all decisions or is incapable of making any. Three factors facilitate an environment in which this approach can influence residents’ sexual expression. These include the wording of current legislation, lack of resources for SDMs, and relational dynamics between SDMs and care staff. We provide a critical review of existing legislation and empirical evidence of its challenges in practice. Though we focus on the Alberta context, there is reason to believe that similar issues persist in other Western jurisdictions. We offer several recommendations for how we can better support residents’ sexual autonomy in continuing care and avoid pitfalls of the “all-or-none” approach to competence.

Approaches to Determine and Manage Sexual Consent Abilities for People With Cognitive Disabilities: Systematic Review

“…A survey to determine factors that increase the risk of SDMs to decide an all-or-none outcome for a person’s sexual autonomy [ 83 ].…”

“…Capacity assumed—a client’s sexual decision-making capacity needs to be assumed intact unless proven otherwise [ 4 , 83 ]. It is unethical and discriminatory to use assessments to prove that a client is incapable of demonstrating consent capacity [ 17 ].…”

Navigating Tensions About Resident Sexual Expression in Alberta’s Continuing Care Homes: a Qualitative Study of Leaders’ Experiences

“…We heard descriptions of intense deliberations about capacity and consent. We explore this matter in greater depth in another manuscript (Brassolotto et al, 2019). In this paper, we focus on three key tensions: (1) tension between how sexual expression should be supported and how it is currently addressed in continuing care, (2) tension between private and public space in care homes, and (3) tension between a medical model of resident care and a conceptualization of sexual expression as an activity of daily living.…”

“…As noted earlier, fluctuating and diminished capacity can further complicate these tensions. The presence of dementia or traumatic brain injury can certainly influence how staff and families respond to cases of sexual expression (Brassolotto et al, 2019). Collectively, these phenomena work against residents' ability to exercise agency for sexual expression.…”

“…Supporting this private aspect of a resident's life is further complicated by the many parties who occupy the resident's space for the purposes of providing personal care, observation, and socialization. Residents with diminished cognitive capacity often have agents who legally act as substitute decision-makers and this can further complicate matters of resident sexual expression (Brassolotto, Howard, & Manduca-Barone, 2019).…”