Intimate and sexual health – a paradigm shift in dementia care.
“Dementia and Sexuality: A Story of Continued Renegotiation,” by Frauke Claes, MSc, and Paul Enzlin Ph.D., marks a pivotal turn in dementia research. Published in The Gerontologist in 2023, this study from KU Leuven’s Institute for Family and Sexuality Studies examines the impact of “how dementia may affect the sexual relationship between partners.”
Claes and Enzlin dissect the transformation of intimacy across the dementia spectrum – premorbid, preclinical, and clinical phases – each bringing its own set of challenges to a couple’s sex life.
This research serves as a clear call to healthcare professionals, advocating for a sex-positive approach in dementia care. It underscores the urgency of personalized care honoring the sexual needs of those wrestling with the nuances of dementia.
This article goes beyond detailing the struggles of dementia. It compels us to rethink our understanding of this condition, not just as a memory-altering but as a test of the deepest human connections.
Qualitative Insights
Claes and Enzlin employed a qualitative research methodology aimed at understanding the dynamics of sexual relationships between partners in the context of dementia. This methodology aims to construct a conceptual framework based on a systematic review of existing literature.
Across the reviewed studies, the demographics of participants vary, with research touching upon different types of dementia, gender differences in sexual satisfaction, and the impact of dementia on sexual activity and satisfaction. For example, Lindau et al. (2018) found that 37% of men and 12% of women with dementia reported at least one bothersome sexual problem, indicating significant variability in sexual experiences among individuals with dementia.
The results of the study are embedded in the development and implication of this framework, emphasizing the nuanced ways in which dementia affects sexual relationships over time. It also points out that around 25% of couples report a decline in sexual activity before receiving a formal diagnosis, showcasing the impact on intimacy.
Understanding Dementia and Sexuality
The results of this study suggest that sexuality varies across three key phases of dementia.
Premorbid Phase: Before the onset of dementia. The research found that sexual satisfaction before dementia predicts the preservation of a satisfying sexual relationship post-diagnosis.
Preclinical Phase: The appearance of dementia’s first, often unclear symptoms. The study found this phase could reduce sexual activity for some couples due to the stress and anxiety of the unknown.
Clinical Phase: Marks the day of a formal dementia diagnosis. Claes and Enzlin found gender, age of onset, and adaptability of the partner influenced the impact of the diagnosis on the couple’s sexual relationship.
The Crucial Role of Sexual Satisfaction in Pre-Dementia Relationships
The premorbid phase is important as it sets the stage for the evolution of people’s sexuality with dementia. How couples enjoy their relationship before dementia—with their sexual relationship shaped by their past experiences and attitudes towards sexuality—plays a big role in their post-dementia diagnosis. As the study points out,
“the quality of the sexual relationship in the premorbid phase is important for the quality of the sexual relationship after a dementia diagnosis.”
Qualities such as the couple’s level of affection, their sexual satisfaction, and the positivity and strength within their relationship.
Navigating the Early Symptoms of Dementia
Then, there is a change. It’s when those first, often misunderstood, symptoms of dementia begin, but there’s no formal diagnosis yet. This may take considerable time to achieve because receiving a formal diagnosis “can be a lengthy, extensive process.” Couples in the preclinical phase deal with the stress of not knowing. Their sexual lives are typically influenced by how they handle the uncertainty and their past sexual history.
The Complexities of Sexuality in Full-Blown Dementia
Finally, the clinical phase is all about the progression of dementia symptoms, from mild to severe. It’s not only “the attitudes toward dementia and sexuality” of the person with dementia and their partner but also the “attitudes of the broader family and the health care providers” who weigh in on the sexual relationship.
Healthcare Providers’ Approach to Sexuality in Dementia Care
Healthcare professionals play a critical role in navigating the complexities of sexuality and dementia.
The authors highlight the change needed in healthcare: “Healthcare providers need education and skills training enabling them to raise questions about sexual functioning.” This statement underscores the necessity for a more inclusive and empathetic approach towards addressing sexual needs in dementia care.
The research suggests healthcare professionals may hold a sex-negative viewpoint, which can clash with the desires and needs of those living with dementia and their partners. They emphasize a
“diagnosis of dementia instigates a journey of renegotiating sexuality in which gradually more actors – who often approach sexuality from a sex-negative point of view – become involved.”
This involvement necessitates a holistic, person-centered approach that respects and supports the sexual autonomy of individuals with dementia.
The article calls for a transformation in how sexual health is discussed and managed in healthcare settings, urging professionals to initiate open conversations about sexuality as part of routine care. It’s not just about understanding the physical aspects of dementia but also acknowledging and facilitating the intimate and emotional needs of those affected. This idea is supported by another article, titled “Ageism and Sexuality”, wherein Associate Professor Ateret Gewitz-Meydan and colleagues state “attitudes and beliefs towards older people expressing their sexuality in LTC [Long Term Care] facilities, including… people with dementia, became more permissive after staff education.” This quote further emphasizes the positive impact education and training can have on healthcare staff.
Claes and Enzlin’s work challenges healthcare professionals to rethink their roles and the impact of their attitudes on the lives of individuals living with dementia and their partners.
Future Directions
We must think beyond the conventional, to question, empathize, and innovate in a way that truly makes a difference in the lives of individuals with dementia and their loved ones.
The study sets in motion the requirement for future research and action in several key areas:
Expanding Understanding: Further research is needed to explore the dynamics of sexuality in dementia across various relationship types and cultural contexts.
Education and Training: There’s a critical need to educate healthcare professionals about the importance of sexuality in dementia care.
Person-Centered Care: Emphasis on a holistic, person-centered approach that respects the sexual autonomy and needs of persons with dementia.
Policy Development: Development of clear, sex-positive policies in residential care facilities to better support the sexual rights of residents.
Broadening the Conversation: Encouraging open discussion about sexuality as part of routine care for individuals with dementia.
Addressing Sociocultural Stereotypes: Challenging the stereotypes and myths that define older and ill people as asexual, fostering a more inclusive and understanding environment.
Overall, it’s imperative to recognize the enduring need for intimacy and connection as fundamental aspects of human life.
