Intimacy and Sexuality
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Intimacy and Sexuality

Key messages

  • There is little published literature of intimacy and sexuality for older people in a palliative care context outside of dementia.
  • Intimacy, sexuality, and sexual expression are basic human needs, continue to be important throughout life, and can provide physical and psychological benefits. [1-7]
  • Sexual expression in later life encompasses a range of behaviours from sexual intercourse to emotional intimacy and proximity. [3-6,8-10]
  • Safe, respectful and inclusive care of older people should respect diversity and include sensitive assessment of and response to intimacy and sexuality needs. [1-4,6,11-24]
  • With age, physical sexual activity can become increasingly difficult due to general physical health, changes to psychological state and cognition, male or female sexual dysfunction, the side-effects of medications, issues experienced by the person’s partner, or the absence or loss of a partner. [1,5-8,25]
  • Older people and healthcare professionals often find sexuality and sexual activity a difficult topic to broach. [1,2,4,7,8]
  • Transition to residential aged care can raise issues of privacy and staff unease, and many facilities may not have clear policies around resident expression of sexuality and intimacy. [2,26]
  • Government policies provide guidance related to sexual abuse and the needs of specific groups. [11-19,22]

Background

Sexual activity encompasses intercourse, emotional intimacy, close companionship, flirting, affection, hugging, kissing, arousal, desire and self-pleasure. Sexuality describes how a person experiences and expresses themselves as a sexual being. Sexuality encompasses biological sex, gender identity and roles, sexual activity and behaviours, sexual orientation and choices, eroticism, pleasure, intimacy, and reproduction. [3-6,8-10] A person may choose to express their sexuality through dress, grooming, styling, speech, actions, attitude, and sexual activity and behaviours. [3]

Intimacy is the emotional connection with another individual. Expressions of intimacy may include sitting close to someone; talking; holding hands; hugging; kissing; stroking someone’s face, hands, or arms; romance; and intercourse. [3,5-7] Relationships based on intimacy create a safe space for both people and actively try to maintain that sense of security for one another.

Sexuality and intimacy are lived experiences that mean different things to different people, at different stages of their lives. [7] Closeness or intimate relationships are an essential human experience which can provide a person with security, support, and connectedness across the lifespan including the period of a life-limiting illness. [7,23] Intimacy, sexuality and sexual expression are basic human needs which can contribute positively to health and quality of life. [1-7]

Older people report varied interest in sex and frequency of sexual activity and place a varying importance on sexual activity and intimacy. [1,4,5,8] Sexuality remains important to older adults and this can provide physical and psychological benefits. [1] Sexual expression in later life encompasses a range of behaviours from sexual intercourse to emotional intimacy and proximity. [3,5,6,8]

Evidence Summary

Older people are commonly viewed as asexual. They are conscious of social norms on sexual activity and report awkwardness in expressing their sexuality and discussing sexuality with their peers, family and health care professionals. [1,4,8] Many older people feel that this is a very private matter and are hesitant to raise questions about sexual issues [1, 4, 8] despite wanting discussions about sexual health. [1] When these issues are also not raised by health professionals, older people are left without help to deal with changes in sexual function and to identity and manage expectations for a changing sexual life. [1,4,8]

With age, physical sexual activity can become increasingly difficult due to general physical health, emotion, psychological state, sexual dysfunction, the side-effects of medications, issues experienced by the person’s partner or the absence or loss of a partner. [1,5-8,25] Often intimacy becomes more important. [1,6]

Healthcare professionals often find sexuality and sexual activity a difficult topic to broach and may consider it out of their scope of practice. [2,4,7] Yet, health professionals can play an important role in assisting both the person and their partner to explore the impact of advanced disease on intimacy and sexuality. [7] Older people perceive health care professionals as uninterested or ill-equipped for discussions about sexuality and sexual health. [1,8] Although they may feel very hesitant or unable to start these discussions, older people feel more inclined and at ease in discussing sexuality and sexual health if health care professionals appear interested, understanding, concerned and empathetic and clearly accepting of all sexual orientations. [1]

Dementia is increasingly prevalent in Australia and other countries. Dementia brings changes to a person’s ability to think, communicate and behave which can affect the way that a person living with dementia receives, experiences and expresses intimacy and sexuality. [6] Couples may actively seek ways to maintain couplehood.  [23] In all stages in life, relationships are dynamic, evolving with the influence of personal and contextual factors. Those looking after people living with dementia need to respond to changes with sensitivity and respond to perceived or actual problems by asking questions and communicating with relevant stakeholders.

The person with dementia may initiate sexual activity which may or may not be welcomed by the recipient of these advances or acts. More than half of the residents in Australian residential aged care facilities (RACFs) live with dementia and changes in sexual expression (lack of inhibition, inappropriate or aggressive behaviours) can pose challenges to staff and other residents. [27] The literature includes suggested ways that staff may approach these challenges. [28,29] The question of consent and consensual assent (acceptance or approval) is important to consider before responding.

Transition into a residential aged care facility (RACF) means adjusting to living in a shared space with new people in new surroundings. Residents find that the RACF environment is not conducive to sexual expression. Commonly cited reasons are the lack of privacy; constraints of the physical environment; staff unease at addressing and facilitating residents’ sexuality; and knowledge and attitudes of staff members, family members, and residents. [2,5] In this context, issues and concerns around expression of sexuality and intimacy are likely to differ in some respects from those encountered in a private dwelling.

In the Aged Care Quality Standards, Standard 1 part 3(c)(iv) requires that organisations demonstrate their capacity to support consumers to make connections with others and maintain relationships of choice, including intimate relationships. [24] Although some RACF staff believe that residents who have sexual needs should be supported, RACFs may not have policies dealing with resident sexual activity. [2,26]

LGBTI people have an increased risk of certain life-limiting conditions. [20,30] Stigma and fear of discrimination may delay entry into aged care and prevent access to care and support at the end of life. [20,21,30] LBGTI people accessing a RACF fear experiencing discrimination and that the status of their same-sex partner or family of choice may not be acknowledged. [21,30] LGBTI people look for services which are open, respectful, nonjudgmental and empathetic [20,21,30]

The Actions to Support for lesbian, gay, bisexual, trans and gender diverse, and intersex elders [18] developed under the Aged Care Diversity Framework [22] provides guidance for respectful, inclusive and culturally-safe care of LGBTI older people. It is noteworthy that relationships and intimacy are considered in the action plan for LGBTI people but are absent in the action plans for all diverse older people, older Aboriginal and Torres Strait Islander peoples, and older Culturally and Linguistically Diverse people. [15-18] The framework and action plans consider diversity in ageing in an aged care context without specific consideration to older Australians needing or receiving palliative care.

Some sexual contact may take the form of sexual abuse. Sexual abuse is defined as any sexual behaviour without a person’s consent. It includes sexual interactions and non-contact acts of a sexual nature. To help protect vulnerable residents whilst not restricting their sexual freedoms, the Aged Care Act 1997 has compulsory reporting provisions for unlawful sexual contact, that is, non-consensual sexual activity involving residents in aged care facilities. [11] When aged care staff consider reporting unlawful sexual contact, the capacity of the resident to consent to sexual activity be based on an assessment by a health professional and should be assessed on a case-by-case basis.

As part of the National Plan to Respond to the Abuse of Older Australians 2019-2023, the Australian Government has released a document (Everybody’s business) that describes the range of work already underway across Australia to prevent, intervene, respond to and mitigate abuse of older people. [13,14] Both documents look at sexual abuse in a general context without specific consideration to older Australians needing or receiving palliative care. The Directory of Key Services in Everybody’s business provides contact details for key national, state and territory services that can assist people seeking help with elder abuse including sexual abuse. [13]

Quality statement

The included papers were of acceptable to high quality. Most papers related to older people or aged care; those relating to palliative care were restricted to studies of people living with dementia and/or their spouse or partner.
 

Page updated 10 June 2021
 

  • References

  • About PubMed Search

  1. Bauer M, Haesler E, Fetherstonhaugh D. Let's talk about sex: older people's views on the recognition of sexuality and sexual health in the health-care setting. Health Expect. 2016 Dec;19(6):1237-1250. doi: 10.1111/hex.12418. Epub 2015 Oct 8.
  2. Aguilar RA. Sexual Expression of Nursing Home Residents: Systematic Review of the Literature. J Nurs Scholarsh. 2017 Sep;49(5):470-477. doi: 10.1111/jnu.12315.
  3. Bauer M, Fetherstonhaugh, D, Nay R, Tarzia L, Beattie E. Sexuality Assessment Tool (SexAT) for residential aged care facilities (3.1MB pdf). Melbourne: La Trobe University; 2013.
  4. Haesler E, Bauer M, Fetherstonhaugh D. Sexuality, sexual health and older people: A systematic review of research on the knowledge and attitudes of health professionals. Nurse Educ Today. 2016 May;40:57-71. doi: 10.1016/j.nedt.2016.02.012. Epub 2016 Feb 24.
  5. Mahieu L, Gastmans C. Older residents' perspectives on aged sexuality in institutionalized elderly care: a systematic literature review. Int J Nurs Stud. 2015 Dec;52(12):1891-905. doi: 10.1016/j.ijnurstu.2015.07.007. Epub 2015 Jul 23.
  6. Roelofs TS, Luijkx KG, Embregts PJ. Intimacy and sexuality of nursing home residents with dementia: a systematic review. Int psychogeriatr. 2015 Mar;27(3):367-84. doi: 10.1017/S1041610214002373. Epub 2014 Nov 10.
  7. Hordern A. Sexual dysfunction: discussing patient sexuality and intimacy in palliative care. In: Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC, editors. Oxford Textbook of Palliative Medicine. 5th ed. Oxford, UK: Oxford University Press; 2015. 
  8. Gewirtz-Meydan A, Hafford-Letchfield T, Ayalon L, Benyamini Y, Biermann V, Coffey A, et al. How do older people discuss their own sexuality? A systematic review of qualitative research studies. Cult Health Sex. 2019 Mar;21(3):293-308. doi: 10.1080/13691058.2018.1465203. Epub 2018 Jun 4.
  9. Dementia Australia. Intimacy and sexual issues [Help Sheet] (190kb pdf). Canberra ACT: Dementia Australia; 1999.
  10. World Health Organization (WHO). Defining sexual health. Report of a technical consultation on sexual health 28–31 January 2002, Geneva. Geneva: WHO; 2006.
  11. Aged Care Quality and Safety Commission. Guide for aged care staff - compulsory reporting [Internet]. Canberra ACT: Australian Government; 2020 [updated 2020 Jan 7; cited 2020 Jul 9].
  12. Australian Government Attorney-General's Department. Everybody’s business - Stocktake of elder abuse awareness, prevention and response activities in Australia (904kb pdf). Canberra ACT: Australian Government Attorney-General's Department; 2019 Mar.
  13. Council of Attorneys-General. National Plan to Respond to the Abuse of Older Australians (Elder Abuse) 2019-2023 (3MB pdf). Canberra ACT: Australian Government Attorney-General's Department; 2019.
  14. Aged Care Sector Committee Diversity Sub-group. Shared actions to support all diverse older people: a guide for aged care providers. Canberra ACT: Australian Government Department of Health; 2019 Feb.
  15. Aged Care Sector Committee Diversity Sub-group. Actions to support older Aboriginal and Torres Strait Islander people: a guide for aged care providers. Canberra ACT: Australian Government Department of Health; 2019 Feb.
  16. Aged Care Sector Committee Diversity Sub-group. Actions to support older CALD people: a guide for aged care providers. Canberra ACT: Australian Government Department of Health; 2019 Feb.
  17. Aged Care Sector Committee Diversity Sub-group. Actions to support LGBTI elders: a guide for aged care providers. Canberra ACT: Australian Government Department of Health; 2019 Feb.
  18. Australian Government Department of Health and Ageing. National Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) Ageing and Aged Care Strategy. Canberra ACT: Australian Government Department of Health and Ageing; 2012 Nov.
  19. Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012 May;15(5):602-11. doi: 10.1089/jpm.2011.0279. Epub 2012 Mar 8.
  20. Mahieu L, Cavolo A, Gastmans C. How do community-dwelling LGBT people perceive sexuality in residential aged care? A systematic literature review. Aging Ment Health. 2019 May;23(5):529-540. doi: 10.1080/13607863.2018.1428938. Epub 2018 Jan 22.
  21. Aged Care Sector Committee Diversity Sub-group. Aged Care Diversity Framework. Canberra ACT: Australian Government Department of Health; 2017.
  22. Holdsworth K, McCabe M. The Impact of Dementia on Relationships, Intimacy, and Sexuality in Later Life Couples: An Integrative Qualitative Analysis of Existing Literature. Clin Gerontol. 2018 Jan-Feb;41(1):3-19. doi: 10.1080/07317115.2017.1380102. Epub 2017 Nov 21.
  23. Australian Government Aged Care Quality and Safety Commission. Quality Standards [Internet]. Canberra ACT: Australian Government; 2018 [updated 2022 May 27; cited 2022 Jul 26].
  24. Feio da Maia Lima C, Amorim Corrêa Trotte L, Araújo de Souza T, Milton Oliveira Ferreira A, Pereira Caldas C. Sexuality of spouse-caregivers of demented older people: an integrative review of the literature. Rev Min Enferm. 2015 Apr/June;19(2):218-24. doi: 10.5935/1415-2762.20150036.
  25. McAuliffe L, Fetherstonhaugh D, Bauer M. Sexuality and sexual health: Policy in Australian residential aged care. Australas J Ageing. 2018 Dec 5. doi: 10.1111/ajag.12602. [Epub ahead of print]
  26. Dementia Australia. Dementia statistics [Internet]. Canberra ACT: Dementia Australia; 2018 [updated 2018 Sep; cited 2019 Apr 2].
  27. Tarzia L, Fetherstonhaugh D, Bauer M. Dementia, sexuality and consent in residential aged care facilities. J Med Ethics. 2012 Oct;38(10):609-13. Epub 2012 Jun 25.
  28. Dementia Australia. Intimacy and sexual issues [Internet]. Canberra ACT: Dementia Australia; 2019 [cited 2019 May 28].
  29. Bristowe K, Marshall S, Harding R. The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature. Palliat Med. 2016 Sep;30(8):730-44. doi: 10.1177/0269216316634601. Epub 2016 Mar 4.

Definition

Sexuality

'Sexuality is a central aspect of being human throughout life encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, legal, historical, religious and spiritual factors.' (WHO, 2006a)

Sexual Health

'Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled.' (WHO, 2006a)

Search strategy

(Sexual behavior[mesh] OR "transgender persons"[MeSH Terms] OR "health services for transgender persons"[MeSH Terms] OR gender identity[mesh] OR sexuality[tiab] OR sexual behaviour*[tiab] OR sexual behavior*[tiab] OR intimacy[tiab] or intimate behaviour*[tiab] or intimate behavior*[tiab] OR sexual orientation[tiab] OR bisexual*[tiab] OR heterosexual[tiab] OR homosexual*[tiab] OR lesbian*[tiab] OR gay*[tiab] OR transgender*[tiab] OR lgbt*[tiab] OR intersex[tiab] OR transsex*[tiab] OR gender identity[tiab] OR feminity[tiab] OR masculinity[tiab] OR sex role*[tiab] OR sexual health[tiab])