Sexuality in Australian Long-term Care

Abstract:

Older people, including those with dementia who those who identify as lesbian, gay, bisexual, trans, or intersex (LGBTI), have experienced, and continue to experience stigma, discrimination, and prejudice in long-term care services. While sharing my work journey, the range of education, research, and policy in Australia aimed at improving understanding and attitudes, increasing acceptance, and supporting the expression of sexuality by older people in long-term care is discussed. This article also reflects on what is needed to develop better sexuality policy and practice guidelines in Australia.

Key Words:

LGBTQI people, sexuality, long-term care, Australia, policy and practice guidelines

The Story of Maureen*

Maureen was born a biological boy in the 1940s to a traditional Chinese family with four siblings. She recalled that as a young child, she did not enjoy playing with her brothers but preferred to spend time with her sisters playing with dolls and holding tea parties. She remembered being envious of her sisters in pretty dresses and felt disappointed when she was not allowed to wear a dress. As she developed, her desire to be a girl increased. She would secretly put on her sisters’ dresses and pretend to be a star. On several occasions, she was caught by her sisters dressing in their clothes and they told their parents. Her father punished her, she was beaten with a cane, and he told her that her behavior was “wrong” and “disgraceful.” She was also bullied by other boys at school and labelled as a “sissy” boy.

She felt angry with everyone and did not understand why she was unable to be a girl. In her early 20s, Maureen moved out of her parents’ home and took a job as a painter. During this time, she had relationships with several girls who broke up with her (some even calling her “weird” and “disgusting”) after she confided in them about her cross-dressing. Maureen became depressed, hid her gender identity, and shied away from new relationships.

A few years later she met Janice through a mutual friend. While Maureen was attracted to Janice, she was initially hesitant to seek a relationship with her, let alone discuss her gender identity. When Maureen decided to disclose her gender identity, to Maureen’s astonishment, Janice, while initially shocked when told, was supportive and accepting of Maureen’s gender identity. They started going out and eventually married. Janice accepted Maureen identifying herself as a female and dressing as a female at home as well as when they went out. Maureen’s family, on the other hand, disowned her and said that she brought “shame to the family name.”

When Janice died of cancer, Maureen, at age 63, was subsequently admitted to a nursing home due to poor health. During this time, she felt alone, she had no family support, and she felt concerned at being ostracized by nursing staff, residents, and their family, who made snide remarks whenever she chose to dress as a female. Eventually, to put an end to the hurtful reception she received, she felt compelled to stop cross-dressing. She said: “Janice accepted me. With her, I felt safe and comfortable to be who I want to be. Not anymore, I don’t fit in here, I am the laughingstock just like when I was a child.”

*Please note that the names in the story have been change. Maureen was referred as a female throughout the story to respect her chosen gender identity.

I met Maureen when I was in my late teens performing requisite community services at a nursing home overseas. At that time, I viewed Maureen as a sad, lonely (albeit peculiar) old man who was not well liked by nursing staff and seemed to need someone to talk to. Moving time forward to late 2009, I was a fresh postdoctoral researcher in Australia tasked with undertaking research and education on sexuality in long-term care due to mounting accounts of sexually “inappropriate” and “difficult” behaviors in older people that needed to be “managed.” Staff reported feeling “upset,” and “challenged,” and saying they would like these behaviors “stopped.”

As a Chinese immigrant from Singapore, I was initially taken aback with this task as the topic of sexuality, including expressions of sexuality and sexual behaviours, is regarded as private, even taboo in my cultural upbringing, and not readily discussed, let alone for older people or those with different sexual orientations or gender identities.

Over the years, I came to realize that sexuality is a neglected aspect of care in long-term care settings. As a researcher, I reflected on my original meetings with Maureen many years ago and felt I now understood Maureen’s personal challenges and recognized the value of the work I am doing in the areas of sexuality, including expression of sexuality and sexual behaviors by older people in long-term care.

Maureen’s story highlights the perpetual prejudice and discrimination faced by older people in long-term care, particularly lesbian, gay, bisexual, trans or intersex (LGBTI) individuals. Yet, it is also encouraging to see the growing work in Australia focused on acceptance and supporting the expression of sexuality in long-term care through the lens of research, education, and practice.

According to the Australia Institute of Health and Welfare (2022), 16% of the Australia’s total population (approximately 4.2 million) were ages 65 and older in 2020. An estimated 2.6% of individuals in this age group identify as a lesbian, gay, bisexual, or sexual minority, but this figure is likely to be underreported due to a lack of direct formal inquiry on sexual identity in the national census (Wilson et al., 2020).

Imagine yourself as an older person or an older LGBTI individual whose health is failing. You and your general practitioner recognize you need help with day-to-day activities of daily living, and you move into long-term care. The stereotypical views of older adults as asexual or non-sexual beings, together with the feelings of potential disapproval and embarrassment mean you are disinclined or hesitant to express your sexual needs to care staff.

Alternatively, the historical epoch of stigmatization and discrimination of LGBTI people, as well as your experiences of being verbally ridiculed and physically assaulted for being LGBTI, mean you are reluctant to disclose your sexuality to the care staff. Consequently, you live in fear of being “discovered,” become socially isolated, and reluctantly ignore your sexual needs.

Australians’ attitudes toward homosexuality have improved over the past two decades. A survey of adults reported that views of same-gender sex as “not wrong at all” have increased from 25% in 1993 to 47% in 2009. In line with this trend, the proportion of survey respondents who believed same-gender sex was “always wrong” reduced from 56% in 1993 to 37% in 2009 (Australian Consortium for Research & Political Research, 2009).

Support for the rights of homosexual couples also rose between 2005 and 2015 (Wilkins, 2015). Furthermore, 2019 survey results from the Pew Research Center highlighted that 81% of Australians believe the rights of LGBTI people should be acknowledged, an increase from 79% in 2013 (Pew Research Center, 2020).

Nevertheless, religious beliefs or lack thereof, and age, significantly influence attitudes. Religiously affiliated people are reported to be less accepting of the rights of the LGBTI community (Pew Research Center, 2020), and together with those born before 1940, they are more likely to believe that homosexuality is “wrong,” while pluralities of the non-religiously affiliated and those born after 1960 think otherwise (Australian Consortium for Research & Political Research, 2009).

Adding another layer of complexity to beliefs about sexuality are the groups of older people with congenital anomalies of the reproductive and sexual system who are deemed not to be the “norm” for either female or male (i.e., intersex) or whose gender identity does not fit into the societal expectations for the biological sex to which they were born (i.e., trans) (Australian Institute of Family Studies, 2022). There are reports of older trans people who are constrained to their biological gender when providers are unaccepting of or do not acknowledge their gender identity (ACT LGBTIQ Ministerial Advisory Council, 2014).

Besides the matters of sexual orientation and gender identity of older people in long-term care settings, health professionals and care staff can experience feelings of discomfort, distress, and embarrassment when sexual expressions are encountered, especially when they involve people with dementia (Jones et al., 2021; Tarzia et al., 2012). Doubts over the validity of such expressions can surface due to the dementia diagnosis and can also be commonly viewed as dementia-related responsive behaviors that need to be curtailed (Jones et al., 2021; Tarzia et al., 2012).

Notably, sexual rights of older people in long-term care, including those with dementia and those who identify as LGBTI, must be respected, protected, and fulfilled to ensure their sexual health and well-being (Everett, 2007).

Sexuality in Australian Long-term Care: Overview of Research, Education, and Practice

In Australia, a range of work has been undertaken to improve understanding and attitudes, increase acceptance, and support the expression of sexuality by older people in long-term care. Alongside continuing research in these areas (palliAGED, 2021), several educational resources have been created. For example, Alzheimer’s Australia published a booklet in 2010 titled Quality Dementia Care: Understanding Dementia Care and Sexuality in Residential Facilities (Alzheimer's Australia, 2010). This booklet defines sexuality and presents meaningful ways to support and enable sexual expression for people with dementia, without discrimination, to maintain their sense of self-esteem and dignity.

Issues of human rights and the complexity of care duties in long-term care settings are discussed. In 2013 (revised in 2014), I developed the Sexualities and Dementia: Education Resource for Health Professionals in partnership with the Dementia Training and Study Centres (DTSC) in Queensland (Jones & Moyle, 2013). This educational resource is focused on the crucial need health professionals have for education and training so that they are better prepared to respond to the sexual needs and expressions of sexuality in older people, including those with dementia and those who identify as LGBTI, to support their sexual health and well-being.

The national dissemination of this educational resource for health professionals has included a self-directed version on an eLearning platform (Jones & Moyle, 2016), as well as face-to-face workshops (i.e., offsite to the workplace) and interactive live webinars. There is also the Sexuality and People in Residential Aged Care Facilities: A Guide For Partners and Families booklet (Bauer, 2016).

Information in the booklet is aimed at preparing family members, or spouse/partners of older people in long-term care to understand all facets of sexuality, what it means and how and why it might still be important to their family member or spouse/partner, including those with dementia. It also will increase the awareness of family members, or spouses/partners of how they, and the care staff, can support their family member or partner to live a more fulfilling life.

Specifically, there was the inaugural 2015 Let’s Talk About Sex conference in Australia, which challenged older people and sexual intimacy–related stereotypes and assumptions in long-term care (Centre for Cultural Diversity in Ageing, 2015).

Following that was the development of the Sexuality Assessment Tool (SexAT) (Bauer et al., 2016). This is a 69-item instrument designed to support the expression of sexuality in residential care facilities by helping to identify areas where further improvements may be needed and monitor facility practices over time.

Similarly, Rainbow Health Australia, which is a state government–funded organization, has developed a national voluntary accredited program named The Rainbow Tick that outlines a list of six accreditation standards to attain for health and community organizations such as care providers (Rainbow Health Australia, 2022). Accredited organizations are recognized for their commitment to safe and inclusive practice, as well as quality assured service delivery environment for the LGBTI community. From the first Rainbow Tick accreditation in 2015, there are now more than 50 accredited Australian organizations (DailyCare, 2022).

More recently, I developed the Intimacy and Sexuality Expression Preference (ISEP) tool, which assesses older people’s preference for the expression of intimacy and sexuality (Jones et al., 2021). The ISEP tool, currently being trialled in a couple of residential care facilities, is intended for use in long-term care to enhance care and support via a person-centered approach. Insights received will inform practitioners about ways to improve not only physical and sexual health but also quality of life and psychosocial well-being. Author’s note: This research was supported by 2018 Dementia Australia Research Foundation Project Grants.

All in all, older people, including those who have dementia and who identify as LGBTI, have experienced and continue to experience stigma, discrimination, and prejudice in long-term care services when it comes to sexuality, expression of sexuality, and sexual needs and behaviors. In Australia, while work remains to be done, thus far, there appear to be concerted efforts made in the right direction to tackle the issues distinctive to LGBTI aging. These include the creation of a safe, welcoming, and inclusive space for LGBTI people in long-term care services through recent government legislation and policy measures (Peisah et al., 2018) and the aforementioned accreditation program in Australia.

Furthermore, there is an increasing awareness of the need in Australian long-term care service providers to build staff capacity through training in sexuality and aging (dementia as well as LGBTI), that positively changes practice. To assist such an understanding and practice change, there are several Australian educational resources and trainings as well as assessment tools that address heterosexual and non-heterosexual sexualities and diverse sex and/or gender identities in the long-term care setting.

In my opinion and as echoed in the recent published work of my colleagues (McAuliffe et al., 2020), what remains imperative is that there is work to be done developing policy and practice guidelines in Australia. McAuliffe and her colleagues (2020) found that Australian residential long-term care facilities have neither established policies nor have adequate policies driven by evidence to address sexuality or sexual health, highlighting the need for policy development in this area. Presently, staff training and practices vary within and between long-term care organizations as many do not have clear policy (if any) that addresses sexuality. A lack of readily accessible sexuality-related policy and practice guidelines can lead to inconsistent staff education and training, which affects knowledge and attitudes as well as care practices. Then practices can restrict, ignore, or dismiss the expression of sexuality as well as sexual needs and behaviors. Lack of policy and practice guidelines can lead to detrimental outcomes for older people in long-term care settings. “More systemic and national approaches to comprehensive policy development are needed” (McAuliffe et al., 2020).

Cindy Jones, PhD, GDipPsych, BA (Psych), BB (HRM), is an associate professor of Behaviour Sciences, in the Faculty of Health Sciences & Medicine at Bond University in Gold Coast, Queensland, Australia, and an adjunct research fellow at the Menzies Health Institute Queensland at Griffith University, in Nathan, Queensland. She may be contacted at cjones@bond.edu.au.

Photo credit: Lars Poyansky/Shutterstock

References

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