Sexuality in the context of non-normative memory change: Exploring theory and the phenomenon

Abstract

Explored within this dissertation is sexuality in the context of non-normative cognitive change affecting memory (e.g., dementia). To set the foundation, reviews of three key areas are described. First, an overview of the historical cultural, philosophical, and scientific underpinnings of human sexuality literature is provided. Additionally, an overview of the aging and sexuality literature, which explores myths and stereotypes and the normative and non-normative biopsychosocial changes that affect sexuality over time, is presented. Third, an overview of sexuality and dementia literature explores the complexities of additional sexual “actors” involved with individual sexuality as dementia progresses, challenges within healthcare settings related to person-centered, multidisciplinary support, and the philosophical, legal, and ethical challenges related to concepts of “self,” autonomy, and the capacity to consent to sexuality. A conclusion of these reviews was acknowledgement of a lack of integrated conceptual and theoretical frameworks utilized in the research of aging, dementia, and sexuality. This dissertation includes three manuscripts that further the understanding of the sexuality in the context of memory change phenomenon. The first manuscript is a scoping review of literature that intersect theory, aging, dementia, and sexuality (n=91). There were twelve overarching theoretical concepts identified that were disseminated via nine disciplinary and subject matter outlets between 1980 and 2018. Results are reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis framework (McGowan et al., 2020). Lacking in the findings of the scoping review were transdisciplinary theoretical approaches related to the intersection of aging, dementia, and sexuality that could serve to guide research, practices, and policy development. Building upon the findings from the first manuscript, the second manuscript proposes a transdisciplinary conceptual framework of optimal sexual expression to fill a gap in research, policy, and practice related to human sexuality and phenomena related to aging and sexuality, as well as dementia and sexuality. Proposed within the second manuscript is a theoretical framework that accounts for biological, psychological, and social system influences on human sexual behavior. The framework includes proposed sexual ethics principles to aid in identifying optimal and suboptimal sexual expression that informs supra system policy development related to sexual behavior, and interactive systems that reinforce sexual scripts for sexual interactions as well as practices that support whole-person wellness through clinical services and care providers. Sexual ethics principles are assessed for ideal sexual experiences by study participants (n=118) who participated in the qualitative study for the third manuscript. The third manuscript describes a qualitative study guided by the phenomenological framework of individuals reporting subjective memory change who were 40 years of age or older, in long-term relationships, and US residents. Individuals meeting these criteria were recruited from Amazon MTurk, research registries for older adults, non-profit organizations, and social media to participate in an online survey. The study design reflected four aims: 1) Describe perceived sexuality and intimacy changes experienced by individuals reporting subjective memory change; 2) Describe the contextual or structural influences related to perceived changes of individuals reporting subjective memory change; 3) Explore perceptions of anticipated changes to sexuality in the context of ongoing memory change through autobiographical future telling; and 4) Identify what family members, practitioners, and policymakers should know about the phenomenon and the future sexual and intimacy needs of individuals reporting subjective memory change. Additional survey questions provided data related to defining “optimal sexual expression” and descriptions of sexual ethics principles. Two subgroups of individuals potentially experiencing subjective mild cognitive impairment or early-stage dementia were identified based on the Ascertain Dementia 8 (AD8; Galvin, 2007). Subgroup 1 included individuals self-reporting memory change and spouses or partners experiencing memory change (n=9). Subgroup 2 individuals reporting memory change for themselves, but not for a spouse or partner (n=5). Affecting participants’ sexuality over time were normative (typical) and non-normative (atypical) biological and psychological changes related to sexual functioning, as well as relationship dynamics and changes in interpersonal communications within the relationship. Intimacy emerged as an important experience related to sexual expression over the course of the relationship, as well as in an anticipated future. Although the overall experience of perceived sexuality and intimacy changes in the context of memory change did not appear to be a distinct phenomenon from the perspective of typically experienced sexuality and aging change, participants described concepts that aligned with coping mechanisms (e.g., anticipatory grieving, “unawareness” of cognitive change), and themes of “hope” and “loss” when considering the future. Presented within each manuscript, and in the overall discussion chapter of this dissertation, are recommendations for future directions for research, policy, and practice.