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 sexual choices, eroticism, pleasure, intimacy, sexual activity and reproduction. [1-9] A person may choose to express their sexuality through dress, grooming, styling, speech, actions, attitude, and sexual behaviour. 
Intimacy is the emotional, affective and physical 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. [3,6,7]
Many studies have considered the older person or residents in residential aged care facilities. [3-6,8,10,11] However, there is very little literature on intimacy and sexuality in older people in a palliative care context. Those which consider older adults in a palliative care context related to people living with dementia. [7,9,12,13] One paper investigated bereavement in lesbian, gay, bisexual, transgender, intersex (LGBTI) people of all ages.  A tool has been developed for residential aged care facilities to support the expression of sexuality of residents, both with and without dementia. 
The included systematic reviews [4-8,10,11,14-16], integrative reviews [9,12,13,17] and tool  are of acceptable to high quality.
Other papers were included to give context to this topic. [1,2,18-34]
Many papers note that the quality of their included studies was low or variable, citing weaknesses in research deign and methodology and small sample sizes.
Sexuality and older people
Sexuality remains important to adults over 65 years of age and this can provide physical and psychological benefits. [4,10] Sexual expression in later life encompasses a range of behaviours from sexual intercourse to emotional intimacy and proximity. [1-7]
Closeness and intimate relationships are an important human experience which can provide a person with security, support, and connectedness across the lifespan.  Intimacy, sexuality and sexual expression are basic human needs which can contribute positively to health and quality of life. [3,4,6-8,10]
Although a delicate issue, there is emerging evidence about the facts and myths of sexuality and sexual activity in older people. Like young adults, older adults feel the need for physical comfort, love, and social and emotional connectedness. Older people report varied interest in sex and frequency of sexual activity and place a varying importance on sexual activity and intimacy. [4-6,10]
Older people do report a satisfying sex life; some report a better sex life than at a younger age commenting that ageing has diminished the burden of expectation and fear of pregnancy, and brought greater comfort within one’s own body and with partners.  Sexual satisfaction in older people can be derived more from non-penetrative sexual activity such as romance, cuddling, kissing, hugging, foreplay and masturbation.  The need for and the expression of sexuality and sexual activity are very personal and views on what constitutes sexual activity and romantic activity varies between men and women. [5,6] In response to erectile dysfunction, couples can find sexual satisfaction without erection or penetration; these include cuddling, kissing, hugging, and holding hands. 
A common perception is that older people are asexual - lacking sexual appeal and desire. [4-6,8,10,11,16] Older people are conscious of constraints of social norms on sexual activity and report awkwardness in expressing and discussing sexuality with their peers, family and health care professionals. [4,5,10] Many older people feel that this is a very private matter and are hesitant to raise questions [4,5,10] despite wanting discussions about sexual health.  If 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. [4,5,10]
Healthcare professionals find sexuality and sexual activity a difficult topic to broach and usually consider it out of their scope of practice. [4,8,16] It is suggested that gender plays a role in the way that health care professionals view and evaluate appropriateness of sexuality in patients.  Female healthcare professionals are the largest group of participants in research conducted to date. The research suggests that female health care staff have a less permissive attitude than their male counterparts but the influence of gender in the perception of sexuality as a problem behaviour needs further exploration. 
Older people perceive health care professionals as uninterested or ill-equipped for discussions about sexuality and sexual health. [5,10] Although they may feel very hesitant or unable to start these discussions, older people feel more inclined and at ease if health care professionals appear interested, understanding, concerned and empathetic and clearly accepting of all sexual orientations.  An open-ended style of questioning seems to be useful. 
Education is needed for healthcare professionals to understand and respond to sexuality issues for older people in their care. Emerging research suggests that education can change attitudes towards permissiveness. More detailed and higher quality studies are needed to understand the sustainability of any effect of education, the effect of variables such as personal attitudes and knowledge, time spent in caring for older people, familiarity with an older person, exposure homosexuality, bisexuality and other diverse sexualities, and sexuality within different cultural groups. [4,10]
Changes in sexuality
Despite a healthy sex life in older people, ageing can bring with it multiple causes of decrease or compromise in sexual interest, frequency of sexual activity and sexual satisfaction. [4-6,8,10,12,13] These include general physical health, changes in psychological state and cognition, sexual dysfunction, the side-effects of medications, issues experienced by the person’s partner or the absence or loss of a partner. [5-7,10,12] Some of the causes are treatable yet many are not treated as they are not discussed in health care consultations. [5,10]
Expression of sexuality and sexual activity of older people are closely linked to previous experiences and sensitivity to perceptions of the community in which they live.  Adapting to these changes, sexuality and sexual activity for older people and couples may change towards intimacy. [5,6]
Intimacy and sexuality and older people in residential aged care
Very few studies have focussed on sexuality issues in residential aged care [6,8] but a tool has been developed for residential aged care facilities to support the expression of sexuality of residents, both with and without dementia. 
Across Australia on 30 June 2018, there were 886 organisations providing residential aged care through 2,695 services.  Transition into and life in residential care can require significant adjustment for the person and their family. Although residential care may well serve care needs, it may mean that a couple no longer live and sleep together, and that a couple or a person has little or no privacy. [6,8]
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.  Yet, residential aged care facilities may not have policies dealing with resident sexual activity. [8,34] A survey published in 2019 of 1,094 residential aged care facilities in Australia revealed that 23% had a written policy regarding sexuality and 13% for sexual health. Analysis of 50 policy statements provided by respondents showed that statements about respecting privacy or sexual expression were common. However, resident sexual health and resident sexual assault or abuse were only included in one third of the policies, and asking a resident whether they wished to discuss their sexuality and intimacy needs was rarely included (4%). 
Residents who do wish to express themselves sexually do this through a wide variety of behaviours including daydreaming, reminiscing, reading romantic or erotic books, dressing up, making witty flirtatious remarks, giving compliments, proximity, hand holding, hugging, touching, stroking or caressing, kissing, fascination, intercourse, oral sex, and masturbation. 
Residents find that the care facility 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. [6,8]
Residents’ interest in sex is very personal and varied. [6,8] Evidence suggests that emotional, intellectual, social and non-sexual physical intimacy are more important than physical sexual intimacy.  Mood, memory, sleep and appetite are considered as or more important. [6,8] Although residents may think about sex, there may be no opportunities for sexual expression in residential aged care. 
When asked about what they think of fellow residents being sexually active, they tend to consider the type of sexual activity, the level of privacy, whether the activity is or can be offensive or disruptive, whether there is consent given by those involved, and the marital status of the couples.  It seems that residents are attuned to the perceived appropriateness of sexual behaviour with religious beliefs often forming the basis for their attitudes. 
Residents of aged care facilities may feel that this aspect of care is a personal matter and not in the remit of the aged care staff, [6,10] yet one study showed that residents wanted care staff to be open to and ready to discuss sexuality.  Some careworkers have a positive attitude to intimacy and sexuality in residential aged care facilities. 
Despite evidence that suggests that healthcare professionals find sexuality and sexual activity a difficult topic to broach and usually consider it out of their scope of practice [4,8,11], some residential aged care staff believe that residents who have sexual needs should be supported.  Older age, work experience, and formal and informal education positively influence these staff attitudes whereas religious beliefs restrict this open or supportive attitude.  The attitude of staff can be influenced by the gender of the resident and severity of dementia, and whether the sexual behaviour was directed toward care staff or other residents.  A recent systematic review highlights the opportunities organisations and their nursing leaders have in facilitating sexuality of older people in health and aged care settings. This can be done through the adoption of a sex‐positive, LGBTI‐inclusive, organisational philosophy with supporting policies, procedures, staff attitudes and care practices; the provision of education, role modelling and opportunities for open discussion; the promotion of opportunities for older people to make personal connections and express their sexual identity; and the maintenance of an environment and amenities that support private sexual experiences. 
Some residential aged care facilities do respond to a need for privacy by using a ‘do not disturb’ sign on the door, blocks on windows, or taking the residents to their rooms when public masturbation occurs. 
The actions to support lesbian, gay, bisexual, trans and gender diverse, and intersex elders  developed under the Aged Care Diversity Framework  provide guidance for inclusive and culturally-safe care of older LGBTI people. Although the intention was to include intimacy and sexuality across the action plans [24-26,32] developed under the Framework, relationships and intimacy are only explicitly considered in this action plan for LGBTI people. (Page reviewer 2019, personal communication) 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.  When aged care staff consider reporting unlawful sexual contact, the capacity of the resident to consent to sexual activity may 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. [29,31] 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. 
Intimacy and sexuality and dementia
Dementia is increasingly prevalent in Australia with almost 440,000 Australians living with dementia in 2018. Dementia is the single greatest cause of disability in older Australians and the third leading cause of disability burden overall. Fifty-two per cent of all residents in Australian residential aged care facilities (RACFs) live with dementia. 
Dementia brings about many changes. Dementia affects thinking, behaviour, communication and the ability to perform everyday tasks. Brain function is affected enough to interfere with the person’s normal social or working life.  These changes can affect the way that a person living with dementia receives, experiences and expresses intimacy and sexuality.  Yet, there is evidence that sexuality continues to be an important part of life for older people living with dementia.  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 onset of a chronic illness such as dementia can have a significant and progressive and negative effect on a couple’s relationship.  An increasing necessity for the spouse or partner to do many of the activities of daily living and household chores can make them feel that they are more of a full-time carer than spouse or partner and that the relationship may seem more like that of a parent-child rather than an adult couple. Feelings of frustration, anger and/or grief for the spouse or partner may appear with the decline in memory, decreasing engagement in discussions and activities, and increasing dependence in the person with dementia. 
Many couples find ways to continue to do tasks together, enjoy the time that they have together and enjoy simple intimate moments.  Adapting to keep the bond of a couple ie, couplehood is often supported by the sense of commitment to each other and to their marriage vows.  The ability of a couple to reminisce and share positive memories can help the couple and individuals to adapt and cope to the changes brought about by dementia.
Elements of a couple’s relationship which often fade or disappear with dementia are reciprocity and communication. This can be noticed by the spouse or partner and the person living with dementia. The spouse or partner may feel isolated or ignored as the person with dementia ‘retreats’ and becomes less receptive and less expressive.  Good communication is seen as important in maintaining couplehood so when this is affected by dementia, strategies to avoid triggers or reactions can be used. 
Another element of a couple’s relationship which may fade or disappear with dementia is sexual activity. Sexual activity and satisfaction may remain or may be replaced by signs of affection eg, kissing or holding hands. 
Intimacy, sexuality and sexual activity expressed by people living with dementia is not predictable or homogenous. There are a wide spectrum of expressions of intimacy and sexuality observed by people living with dementia. These may be regarded as normal, abnormal or 'problem' sexual behaviour and this may be within the relationship of a couple or between co-residents. Many factors can influence what is perceived as normal, abnormal or 'problem' sexual behaviour. There is a need to consider the individual perspectives of the older person and the staff member when reviewing behaviour. In the latter case, aged care staff may express concern as to the participants’ capacity to consent which is best dealt with on a case-by-case basis. [7,30] See the Practice Centre.
As people living with dementia may have trouble verbalising their needs, they may use gestures and behaviours to express their needs.  Expressions may range from greetings to sexual acts including hugging, kissing, holding hands or having intercourse with another person. These verbal or physical expressions may become disinhibited, inappropriate or aggressive and include sexual language, masturbating in public, touching the body parts or genitals of another person, or intercourse. [6,7,13] The question of consent and consensual assent (acceptance or approval) is important to consider before responding. See the Practice Centre.
Carers and residents can be the victims of sexual acts.  It is important that aged care staff assess the capacity for residents living with dementia to understand, resist and stop unwanted sexual activity towards them. [7,13] And that risks be identified for staff and residents so that harassment or abuse can be prevented. 
Reactions to these expressions can vary from person to person. For example: a person getting into bed with another resident may be interpreted as the person needing to be close to another or as a sexual advance.  A person exposing their body or partially undressed may be interpreted as sexualised exhibitionism or a loss of decorum due to dementia  or a sign of physical discomfort, the need to go to the toilet, or that the person is feeling hot. The attitude of aged care staff can be influenced by the gender of the resident and severity of dementia, whether the sexual behaviour was directed toward care staff or other residents. 
Makimoto et al.  provide a template inventory for reporting sexual expression and responses to facilitate a more objective and consistent identification and management of sexual expressions in RACF for people living with dementia. To consider the context of these behaviours and better understand them, this inventory looks at the characteristics (of the initiator) and the antecedents, behaviours and consequences of the actions. Identifying antecedents such as bathing and dressing – ADL activities - may help understand and limit triggers in this population.
Policies may or may not exist and, those that do, are not homogenous and can be influenced by religious affiliation. 
Intimacy and Sexuality for older Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) individuals
Retrieved articles explored (1) the perceptions of sexuality for older LGBT in relation to residential aged care but not palliative care , (2) the bereavement experiences of LGBT people  and (3) the needs, experiences and preferences of a general adult population of sexual minorities in an end of life and palliative care context. 
It is estimated that up to 11% of Australians have diverse sexualities, relationships, genders and bodies.  An estimated 61,000 Australians aged 65 and older identify as non-heterosexual. This equates to approximately 2% of males and 1% of females in that age group. 
While being lesbian, gay, bisexual, trans or gender diverse and/or intersex is an important part of a person’s identity, it is not the sole part of a person’s identity. LGBTI communities are diverse and diversity within each group also exists.[11,23]
LGBTI people may or may not be involved or active within LGBTI communities. Most LGBTI people have strong connections outside LGBTI communities, through their family, friends and social and community groups.  LGBTI people may have experienced rejection from their biological family, and to counteract this, will create a 'family of choice' - people that they consider family even though they are not biologically or legally related. [11,23] These people may be more important to LGBTI people than their biological family and should be included in care planning.
A LGBTI person who is currently receiving aged care services has lived through an era of significant discrimination, hostility and changing attitudes. Whilst reforms have happened and are happening, many older LGBTI people hide their diverse sexuality, relationships, genders or bodies because they continue to fear discrimination. The experience of discrimination has a detrimental impact on the health and wellbeing of LGBTI people. [11,14,15,23] LGBTI people look for services which are open, respectful, nonjudgmental and empathetic [11,14,15] and in Australia a number of organisations have begun to respond to the needs of older LGBTI people. 
With open discussions and an open attitude, LGBTI people will be more likely to reveal their sexuality and their needs [11,15] and this can have a positive effect on bereavement of partners and family of choice.  Without open discussions and an open attitude, older LGBT people feel that they are doubly invisible behind a veil of ageist and heterosexist attitudes. [11,15,23]
LGBTI people have an increased risk of certain life-limiting conditions and may not access care and support at the end of life. [14,15] Stigma and fear of discrimination may delay entry into aged care. [11,15] LBGT people fear experiencing discrimination in RAC and that the status of their same-sex partner or family of choice may not be acknowledged. [11,14]
Many LGBT people indicate that they would prefer to be cared for at home or live with family (family of choice) and should they need care in a residential facility, they would prefer a LGBT-specific facility of which there are only a few.  This is an individual choice.
Attitudes of nursing staff and heterosexual residents toward LGBTI older people range from disgust to acceptance and support.  Religious beliefs are cited as a strong barrier to an open and accepting attitude as are general presumptions of heterosexuality and that older people are asexual and a general discomfort in discussing sexuality.
Under the Aged Care Act 1997, people from LGBTI communities are identified as people with special needs.  In 2012, The Australian Government released the National Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) Ageing and Aged Care Strategy. As part of the implementation of the LGBTI Strategy, a collection of LGBTI-specific ageing and aged care resources for LGBTI community communities, their loved ones, carers and aged care service providers have been published. 
The Actions to Support lesbian, gay, bisexual, trans and gender diverse, and intersex elders  developed under the Aged Care Diversity Framework  provides guidance for respectful, inclusive and culturally-safe care of older LGBTI people. The section on respectful and inclusive services highlights the need for recognition and respect of relationships (which may include several partners/connections/romances) and the importance of the involvement in care decisions of the person’s partner and family of choice. Aspects of care that may need attention are the suitable or preferred gender of healthcare professionals, sensitivity to certain personal care needs, use of appropriate language, and access to sexual and sexuality-related services.
- Intimacy and sexuality of older people is an emerging and taboo topic requiring further attention.
- We know little about the needs and views and the experiences of older people about intimacy and sexuality in a palliative care context. Little is known about the views, attitudes, experiences, and actions of palliative care professionals in relation to intimacy and sexuality of older clients or residents.
- There is not a clear definition of the distinction between normal sexual behaviour and abnormal or 'problem' sexual behaviour in residents including residents living with dementia.
- There is a need for the development of instructions for carers and facilities to support an older person’s sexuality and intimacy needs.
- There is a scarcity of literature exploring the needs, preferences, views, experiences of older LGBTI people in aged care, palliative care and bereavement.
- More needs to be understood about the how education can help (1) individual health professionals and teams to explore their attitudes and biases in relation to intimacy and sexuality of older people and (2) create a positive, open approach to intimacy and sexuality of older people in aged care or palliative care services.
Page created 29 May 2019