Journal of Gerontological Nursing

Guest Editorial Free

Are Gerontological Nurses Ready for the Expression of Sexuality by Individuals With Dementia?

Cindy Jones; Wendy Moyle

Education prepares gerontological nurses to assess, treat, and care for older adults and their families. However, it is not clear whether they are prepared for what has been described by the media as a future tsunami of older adults with dementia (Russell, 2015). In 2015, approximately 46.8 million individuals 60 and older had dementia and, alongside population aging, this figure is expected to double every 20 years (Alzheimer's Disease International, 2015). With no imminent cure in sight, a significant nursing focus has been on improving quality of life of individuals with dementia through a person-centered approach to symptom management within a supportive living environment. However, an often-neglected aspect of dementia care, and one that gerontological nurses may be less prepared for, is the sexual health and expression of sexuality by older adults, as ageist perceptions continue to promote older adults as being asexual (Bauer, Haesler, & Fetherstonhaugh, 2016).

Sexual health is viewed as a sexuality-related state of “physical, emotional, mental and social well-being” (World Health Organization [WHO], 2015, p. 5), a vital aspect of the human lifespan, and a human right (Lindau & Gavrilova, 2010; Robinson & Molzahn, 2007). Sexuality is more than a simple need for penetrative sex or other acts of sexual gratification. Sexuality also encompasses gender identities and roles; sexual orientation; and the need for affection, intimacy, romance, companionship, and relationships (WHO, 2015). The sexual rights of older adults are not always supported, particularly by staff working in aging services. Consultations with older adults regarding their sexual needs, preferences, and concerns are minimal, if they happen at all. This lack of consultation may be due to feelings of embarrassment and discomfort by older adults and health care professionals to initiate such conversations, as well as the negative and dismissive attitudes expressed by health care professionals (Bauer et al., 2016; Dyer & das Nair, 2013). This issue is further complicated when older adults have dementia.

Dementia causes many changes in an individual's life, including changes to intimate relationships, sexual feelings, needs, and expression of sexuality. The diminishing cognitive capacity of individuals with dementia creates a challenging and complex issue, particularly for those living in an aged care service (i.e., nursing home or long-term care), where it is often difficult for health care professionals to discern between what is normal and abnormal sexual activity, as well as between consensual and nonconsensual sexual relationships. With inadequate understanding and awareness of the sexual needs and rights of individuals with dementia, health care professionals may be overly protective and restrictive when individuals with dementia are involved (Mahieu, Anckaert, & Gastmans, 2017). Furthermore, tensions can be driven by the family. Concerns regarding capacity to consent to being involved in a sexually intimate relationship can, at times, result in the needs and wishes of older adults being secondary to those of the family. Compounding this is the issue of incongruent sexual needs and behaviors exhibited by older adults before and after a dementia diagnosis. Questions arise, for example, of whether the genuineness of new sexual needs and behaviors can be deterred or less favorably regarded because of an inconsistency with sexual needs and behaviors demonstrated before dementia.

An individual's cognitive capacity for consent to sexually intimate relationships is closely linked to a nurse's duty of care, which must be exercised by the management of aged care services in their policies and daily operations. However, this often results in a conflict, with legal ramifications, between the potential risk of individuals with dementia being harmed and the limitations the management of aged care services place on a person's ability to develop, engage in, or maintain sexually intimate relationships within the care setting. Therefore, dementia-specific guidance is needed to ensure that the sexual needs and behaviors of individuals with dementia in aged care services are managed in an ethically, legally, and socially responsible manner. One means to manage guidance is through the education of gerontological nurses (Kazer, Grossman, Kerins, Kris, & Tocchi, 2013; Steelman, 2018; see also the November 2013 Journal of Gerontological Nursing's Special Issue on Sexuality in Older Adults).

Health care professionals are reportedly untrained or lack the knowledge or ability for either a discussion or assessment of sexual health of healthy older adults, let alone those with dementia (Bauer et al., 2016). Furthermore, education on sexuality and older adults, including those with dementia, is often a low priority for aged care services, with evidence suggesting limited training options (Shuttleworth, Russell, Weerakoon, & Dune, 2010). Recent research highlighted that providing education to health care professionals can improve knowledge and attitudes on sexuality and older adults, including those with dementia (Bauer, McAuliffe, Nay, & Chenco, 2013; Jones & Moyle, 2016). Not only did education improve health care professionals' understanding and awareness, it also led to reported better responses toward the expression of sexuality by individuals with dementia. Continuing work-force training and education is an important step toward facilitation of a person-centered approach to the verbalization and expression of sexual needs and preferences by individuals with dementia. Importantly, policy that governs sexual expression in aged care services is needed to ensure that attention is paid to sexual health, sexual identity, sexual vulnerability, and access to sexual services agency while emphasizing safety, protection, privacy, independence, and freedom for individuals with dementia. Such policy will ultimately contribute to an improvement of care outcomes (e.g., quality of life, health, well-being) for individuals with dementia in aged and long-term care services.

Cindy Jones

Research Fellow

Menzies Health Institute Queensland –

Optimising Health Outcomes Program

Lecturer

Griffith University

School of Nursing and Midwifery

Wendy Moyle

Program Director

Menzies Health Institute Queensland –

Optimising Health Outcomes Program

Professor in Nursing

Griffith University

School of Nursing and Midwifery

Queensland, Australia

References

  • Alzheimer's Disease International. (2015). World Alzheimer Report 2015: The global impact of dementia. An analysis of prevalence, incidence, cost and trends. Retrieved from https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf
  • Bauer, M., Haesler, E. & Fetherstonhaugh, D. (2016). Let's talk about sex: Older people's views on the recognition of sexuality and sexual health in the health-care setting. Health Expectations, 19, 1237–1250. doi:10.1111/hex.12418 [CrossRef]
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  • Russell, L. (2015, September1). The dementia tsunami: Alzheimer's disease and other dementias expected to triple by 2050. Retrieved from https://www.smh.com.au/opinion/the-dementiatsunami-alzheimers-disease-and-other-dementias-expected-to-triple-by-2050-20150901-gjcfvn.html
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  • Steelman, R. (2018). Person-centered care for LGBT older adults. Journal of Gerontological Nursing, 44(2), 3–5. doi:10.3928/00989134-20180110-01 [CrossRef]
  • World Health Organization (2015). Sexual health, human rights and the law. Retrieved from http://apps.who.int/iris/bitstream/10665/175556/1/9789241564984_eng.pdf
Authors

The authors have disclosed no potential conflicts of interest, financial or otherwise.

10.3928/00989134-20180413-01

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