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Dementia, sexuality and consent in residential aged care facilities
  1. Laura Tarzia,
  2. Deirdre Fetherstonhaugh,
  3. Michael Bauer
  1. Australian Centre for Evidence-Based Aged Care (ACEBAC), La Trobe University, Bundoora, Australia
  1. Correspondence to Laura Tarzia, Australian Centre for Evidence-Based Aged Care (ACEBAC), Level 5, Health Sciences 2, La Trobe University, Bundoora, Victoria, Australia; l.tarzia{at}latrobe.edu.au

Abstract

Sexual self-determination is considered a fundamental human right by most of us living in Western societies. While we must abide by laws regarding consent and coercion, in general we expect to be able to engage in sexual behaviour whenever, and with whomever, we choose. For older people with dementia living in residential aged care facilities (RACFs), however, the issue becomes more complex. Staff often struggle to balance residents' rights with their duty of care, and negative attitudes towards older people's sexuality can lead to residents' sexual expression being overlooked, ignored, or even discouraged. In particular, questions as to whether residents with dementia are able to consent to sexual activity or physically intimate relationships pose a challenge to RACF staff, and current legislation does little to assist them. This paper will address these issues, and will argue that, while every effort should be made to ensure that no resident comes to harm, RACFs must respect the rights of residents with dementia to make decisions about their sexuality, intimacy and physical relationships.

  • Aged
  • capacity
  • feminism
  • sexuality/gender
  • women
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Introduction

For most people living in Western societies, the right to be able to make decisions about one's life is taken for granted. These decisions include whether or not to engage in sexual behaviour whenever and with whomever one chooses, providing of course it is mutually consensual and within the boundaries of the law. Older people living on their own or with a partner generally continue to enjoy these rights and freedoms, even if they are in the early stages of dementia. However, when an older person moves into a residential aged care facility (RACF), circumstances often change. Notwithstanding the impact that ill-health and mobility can have on the desire and capacity for physical intimacy, a number of factors in aged care facilities can constrain the ability of persons to express their sexuality and sexual needs, including institutional policies and regulations, privacy, and attitudes of the staff. Existing literature strongly indicates that aged care facilities do not tend to be environments that are conducive to, or supportive of, the freedom of sexual expression.1 ,2 Furthermore, sexuality tends to be ignored or poorly addressed by RACFs in terms of their policies and institutional frameworks.3

Since it has been well established that sexuality and intimacy continue to be important in later life4 and are central to an individual's health and well-being,5 the lack of attention paid by aged care facilities to residents' sexual needs is concerning. For many older people, the expression of sexuality through kissing, hugging, touching, flirting, masturbation, feeling ‘masculine’ or ‘feminine’, and intercourse6 can be pleasurable, as well as a way of communicating, releasing tension, affirming life, and sharing affection and tenderness.7 This is also true of people living in residential aged care, where people continue to express their sexuality and intimacy needs in a variety of ways despite the presence of dementia or other cognitive impairment.2 ,8 ,9 Roach, for example, has argued that, ‘Sexual sensations are among the last of the pleasure-giving biological processes to deteriorate, and are an enduring source of gratification at a time when pleasures are becoming fewer and fewer.’1

Many aged care facilities, we contend, struggle to deal with the often complex moral and ethical issues that may arise when residents express their sexuality. Particularly when a resident has dementia, staff apprehensions about the abrogation of their duty of care and concerns about unlawful activity, anxiety about potential risks to the resident, and fear of negative repercussions from a resident's family make many facility managers wary of physically intimate activity among residents.

This paper will argue that the formation of relationships, physical intimacy and the expression of sexuality are a basic human right and a normal and healthy part of ageing, and that older people in RACFs, including those with dementia, have the right to make, and at the very least be involved in, decisions. It will explore some of the issues surrounding capacity and consent for residents with dementia living in RACFs, and argues that, while these issues merit careful thought and attention, they should not negate the right of sexual expression or the rights of residents to be involved in decisions about their own sexuality.

Current legislation, policies and attitudes in residential aged care

Ageing and older people tend to be viewed negatively in Western societies, and ‘ageism’ is widespread.10 ,11 Researchers have argued that ageism is connected both with a fear of death as well as an entrenched value system focusing on productivity.10 Ageism is also evident in the media's association of youth and beauty with sexual attractiveness, which consequently positions older people as ‘sexless’ and undesirable.12–14 These negative attitudes can also be held by staff members and families in RACFs5 and, consequently, sexuality has not been treated as a priority for care.15 ,16 Existing research, however, suggests that residents want their sexual expression acknowledged,17 and believe that health professionals should ask them about their sexual needs.18 ,19 While some recent evidence suggests that the attitudes of staff towards residents' sexuality may have improved,20 ,21 and some facilities even support and encourage residents' sexual behaviour,22 these are the exception rather than the rule, and many facilities still struggle to practically address sexual issues or proactively ensure that the environment is conducive to sexual expression.20 ,23 ,24 Most facilities do not have formal policy guidelines or training to enable staff to adequately meet residents' sexuality needs, and sexuality-related issues tend to be dealt with in a case-by-case, ad hoc manner.3 ,24 Privacy remains a problem, with residents often not able to lock their doors,25 and most rooms are equipped only with single beds. For residents with dementia, sexuality is viewed with even greater anxiety, either being labelled ‘inappropriate’ or a ‘challenging’ behaviour,26–31 or as a risk to the resident. Families are informed as a matter of course whenever residents with dementia express their sexuality, and, for the most part, ‘whether sexual relationships are discouraged, promoted, or ignored is a decision forged by a resident’s family along with assisted living management, often independent of the resident's choice.'2 Considering that families, in particular adult children of people with dementia, may be uncomfortable with the idea of their parent as a sexual being,32 they may not always make neutral decisions; however, the fear of legal action from families or their removal of the resident (and the associated funding) if staff permit sexual expression means that facility managers tend to take a conservative approach to the issue.2 ,33

As Heath has noted, the law ‘does not offer explicit guidance between promoting individual rights and protecting vulnerable people’15 when it comes to sexual expression. Although there is legislation on mental capacity for legal, financial and medical decisions that outlines what criteria are required in order to have one's decisions upheld, this does not necessarily assist aged care facilities in responding to residents' sexual decisions. In Australia, the only legal directives that exist regarding sexuality in RACFs are the guidelines for compulsory reporting of unlawful sexual contact set out in the Aged Care Act (1997). The fact that the only available legislation deals with the ‘worst case scenario’ is indicative of the way in which sexual expression for people with dementia is perceived, namely, as risky and dangerous.

The issue, then, is not so much that current laws and policies are against residents' sexual expression (although some religiously-affiliated organisations do ban sex outside of marriage), but rather that in the absence of formal guidelines and policies, RACFs have no incentive to change the current culture of oversight. In theory, RACFs are bound to uphold residents' rights to privacy and autonomy; however, in practice, this commitment is abandoned as soon as a risk is perceived or if there is opposition from family members.

Capacity and consent for residents with dementia

Central to debates surrounding the right of a person with dementia to express his or her sexuality is an understanding of the concept of capacity: whether a resident with dementia has the ability to give or withhold consent to the formation of a relationship and physical intimacy. The consent issue is particularly relevant when a person with dementia begins a sexual relationship with another person. From a legal standpoint, ‘sexual activity with someone who is unable to consent is a sexual offence,’34 and dementia, which is characterised by changes in behaviour and personality, memory loss, and a decline in cognitive impairment as the condition progresses, can add a level of complexity to the ability to make decisions. Individuals with dementia may not always be able to verbalise their choices, which makes determining consent or refusal, or decisional capacity, less straightforward.

There is a dearth of material about the specific intersection of decision-making capacity, dementia and sexuality. Authors typically focus either on ethical and legal issues surrounding dementia and decision-making capacity in general,35 or ways to assess capacity.36 The most well-known capacity assessment framework is probably that of Grisso and Appelbaum,36 who outline four criteria that they claim are essential to determining decision-making capacity. The person must be able to: communicate a choice; understand the relevant information; appreciate the situation and its consequences; and display reasoning. However, this framework, along with most of the decision-making literature, focuses on consent and capacity in the context of high-stake decisions such as those regarding medical treatment, participation in research or power of attorney. We suggest, therefore, that when it comes to relationships and intimacy, existing capacity assessment frameworks may be fundamentally inappropriate. That different decisions require different levels of capacity is a theory well supported within the literature,37 ,38 and a resident with dementia may not be able to ‘render informed consent to an operation that has a significant risk of death but may be able to decide on what flavour of ice cream he would like for dessert.’39 In most cases, suggest Richardson and Lazur, decisions about whether or not to engage in sexual behaviour are closer to those about ice cream than surgery.39 Lindsay40 has similarly argued that when making medical, financial or legal decisions that rely on logic, reasoning and awareness of the implications, it may be useful to apply standard, formulaic assessments of capacity such as those of Grisso and Appelbaum36 or the Mini-Mental Status Examination. When making decisions about sex, on the other hand, Lindsay suggests that relationships ‘do not necessarily form in a structured, logical manner…sex is not a decision most people make after carefully weighing the pros and cons or the biological implications of their decision.’40 While philosophers have argued for centuries over the relative importance of reason and passion in decisions about morality, surely in debates surrounding sex and intimacy more than any other topic, the role of passion and sentiment must feature prominently.

Frameworks that supposedly assist RACF staff in determining a resident's decision-making capacity specifically with regard to sexuality do exist; however, we argue that these have limited value. Guidelines such as those proposed by Borrell41 of the Senior Psychiatric Connection in Texas, USA, begin the assessment process with a Mini-Mental Status Examination on which residents must score at least a 14 to even proceed to the next round of questioning. The assessment tool of Lichtenberg and Strzepek,42 on which many subsequent guidelines are based, asks a series of questions about the patient's understanding of risks and consequences, and relies on the ability of the person with dementia to verbally communicate concepts and values. Although they acknowledge that capacity is not ‘all or nothing’, the assessment relies on a series of criteria that, on close examination, are overly restrictive. For example, requiring that a resident's behaviour be consistent with formerly-held beliefs and values both negates the right of the resident to change his or her mind, and also ignores the effect that dementia can have on an individual's personality. Philosophical arguments about the authenticity of personhood and the rights of the ‘now self’ versus the ‘past self’ aside, the simple fact remains that some types of dementia are known to significantly alter a person's behaviour, values and personality, and it is common for family members to claim that they are ‘not the same person’. Why then should consistency of sexual values be a criterion for determining capacity? Likewise, requiring the resident to state what level of sexual intimacy they would be comfortable with seems unrealistic, not to mention unromantic. How many of us, once we get past the teenage concept of ‘bases’, know in advance what we are going to want to do during a sexual encounter? Tests of sexual decision-making capacity also ignore the most important ethical and legal issue: that capacity should be assumed until proven otherwise. In other words, it should not be up to the individuals with dementia to ‘prove’ that they have the capacity to decide whether or not to engage in sexual behaviour, but, rather, the onus is on staff to prove—incontrovertibly—that they do not.

While it is certainly important to acknowledge the potential risks, and difficult questions surrounding the implementation of sexuality-friendly policy within RACFs should not be brushed under the carpet, the focus of current legal and ethical debates only serves to reinforce the medicalisation of dementia and the overprotection of the ‘vulnerable’. As Miles and Parker have argued, choices about sexuality are ‘transformed and removed from the resident by being ‘medicalized’ into the framework of supervised informed consent.’43 This medicalisation and overprotectiveness, argues Archibald,44 risk blurring the lines between duty of care and social control. These are issues also found in debates surrounding disability and decision-making with the difference that, in the case of people with disabilities, there is a general acceptance that promoting self-determination leads to a higher quality of life.45 On the other hand, in the case of people with dementia, particularly those living in RACFs, the pervading attitude is that all elements of risk must be removed in order to satisfy duty of care. The individual with dementia is often ‘perceived as needing protection from his or her own impaired memory and judgement.’8 This ignores completely the concept of ‘dignity of risk’. As Nay has argued, ‘We cannot eliminate risk without eliminating the person. Life is a risk. It is through struggling and overcoming challenges and taking risks that we become fully human.’46 Allowing persons with dementia to make autonomous decisions about their sexuality may indeed expose them to some elements of risk such as emotional distress if a relationship ends; however, these are risks that any sexually active person faces throughout his or her life, and we should not confuse a bad or unwise decision with incompetence. Seeking to ‘protect’ individuals with dementia by not allowing them to express their sexual needs, thereby stifling their autonomy and personhood, is a far greater failure of duty of care. It is also, we would argue, a violation of the fundamental human right of a person with dementia to be recognised as a person before the law.47

In Australia, failing to support residents' sexual decision-making is also in direct breach of the Commonwealth's Charter of Resident's Rights and Responsibilities,48 which, while not specifically addressing sex or intimacy, states that all residents living in a RACF have the right to ‘be treated with dignity’ and ‘to have his or her individual preferences taken into account and treated with respect’. This does not mean, of course, that staff intentionally attempt to violate residents' rights when they discourage or restrict sexual expression. On the contrary, the battle between non-maleficence—the desire to do no harm—and resident autonomy is common throughout the literature demonstrating that the issues are there precisely because staff believe that they are acting in the best interests of the resident. Jakobsen and Sørlie demonstrate this tension in their study of Norwegian care providers' experiences of ethically difficult situations within the nursing home. The staff spoke of patients refusing to be washed, which led to them resorting to weak restraint in order to force the patients to comply. One staff member commented: ‘One patient just won't get washed. She smells, and all those around her react to it. We have to help her regain her dignity.’49 While nurses in the study of Jakobsen and Sørlie believed they were acting in the best interests of the resident, and specifically to preserve her dignity when they physically forced her to bathe, Holm50 points out that assessing a person's desires and choices is an incredibly complex process, and no one single criterion can determine when, if ever, it is legitimate to over-ride the decision-making of an individual with dementia. It may be inconvenient, unpleasant or logistically challenging to support a resident's sexual needs within the RACF environment; however, failing to do so goes against the ideology of person-centred care, where the recognition of, and connection with, the person is the central principle.51

Furthermore, it is important to remember that dementia is defined in stages, with early or mild dementia manifesting as mild forgetfulness or confusion that is often mistaken for a normal part of ageing. As the dementia progresses to the moderate stage, the forgetfulness may increase, and the individual may experience some difficulty with activities of daily living. Mood swings may also occur. It is only when the dementia progresses to the most advanced stages that the individual requires a higher level of care, and may lose the ability to communicate and function.52 Clearly, there is a significant difference between the capabilities of a person with mild dementia and one with advanced or final-stage dementia and, therefore, a single approach to sexuality and ‘people with dementia’ is inappropriate. Additionally, there is plenty of support within the literature to suggest that people with dementia can and do continue to make decisions about various aspects of their daily lives, even if they are unable to decide how their finances are to be managed.53 ,54 Carpenter et al who examined the preferences and life evaluations of older adults with and without dementia found that, although overall participants with dementia as a group were less reliable than those without any cognitive impairment, there was a large degree of individual variability within the sample. As the authors describe it, some individuals without cognitive impairment ‘were not reliable in their reports, and others were very reliable, even later in the progression of dementia,’55 thereby highlighting that each person with dementia is an individual and that no one generic rule or principle can fit all. Interestingly, they also found that on the subject of the nature of marital relationships, reliability for individuals with dementia was particularly good, which reinforces the theory that dementia does not stop people from making, and continuously assessing, choices regarding intimacy. For individuals with moderate, or even advanced, dementia who may have lost the ability to communicate verbally, we argue that there are still ways in which they can convey preferences and choices including body language and facial expressions. Kinney and Rentz, for example, used various indicators to assess resident well-being and enjoyment of an art programme. Positive indicators included: ‘Verbal expression of pleasure while participating in the actual activity; eyes crinkled, smiles, laughter, relaxed facial expression; nods positively, relaxed body language.’56 Negative indicators included: ‘Closed body language, frown on face, angry verbal outbursts; facial grimacing, or brows furrowed; psychomotor agitation (hand tapping, moving in chair, leg jiggling, wincing); rapid breathing, eyes wide, frightened look.’56 It is evident, therefore, that people with dementia, at almost any stage, have the means to make, and communicate, a preference or choice, if a staff member is willing to interpret the signals.

If, then, individuals with dementia living in RACFs are able to make decisions about their clothing, meals, schedule, healthcare, whether to participate in research and other aspects of their daily living, why not sexuality? After all, as Kuhn states, ‘a resident may perform poorly on a mental status test but his or her preference for a special friend or lover may be quite evident.’8 Relative to making a decision about a surgery or invasive treatment, the decision to engage in sexual behaviour has very few serious ramifications. While every effort should be made to ensure that no resident is at risk of being forced to participate in unwanted sexual behaviour, contracting a sexually transmitted disease or otherwise being harmed, this protection should not descend into paternalism. Many of the practical risks associated with sexual behaviour can be mitigated through appropriate education and training; for example, providing condoms and sex education to residents (those who are able to comprehend it), managing falls risk, and assisting residents with pain management or positioning issues. Residents who exhibit hypersexuality, aggression, unwanted groping of residents or staff, or use foul language would also need to be monitored and managed to ensure that their behaviour does not impinge upon the rights of other residents. These behaviours, however, are relatively rare, and are often caused by medication or are a response to unmet care needs.16 Although good risk management is important, White points out that individuals with dementia should not be placed in the same category as those below the age of consent. She argues that, ‘the past consent of the involved individuals with dementia was previously valid’,33 and, furthermore, that the risk of pregnancy or distress for older people with dementia ‘from an unwanted sexual advance is considerably less’33 than a child's. Holding RACFs to a ‘higher’ standard of protection with regard to sexuality, argues Appel, ‘often serves as an obstacle to meeting both the wishes and interests of individuals who cannot conform to ‘real world’ standards of consent.’57 Additionally, while it is recognised that incidences of abuse of older people are under-reported, Teitelman and Copolillo58 estimate that 2%–4% of the older population in the community have experienced abuse, with only 0.3% of these cases being sexual abuse. Although data on sexual abuse in RACFs are virtually non-existent, it seems that many assaults are perpetrated by staff or uninvited visitors rather than other residents.59 This risk, while serious, is present irrespective of whether or not facilities support the sexual autonomy of residents. A more relevant consideration is the level of risk from sexual exploitation by other residents (either with or without dementia) who may have no qualms about engaging in sex with someone who has mistaken them for a spouse or partner. The level of risk, however, must be weighed appropriately against the significant risks negation of autonomy presents to emotional and mental well-being, such as depression and withdrawal,60 as well as the well-established negative effects of a lack of human touch on mental and physical health.61

A way forward: the pursuit of happiness

A number of legal approaches and ethical frameworks for managing sexuality within the RACF environment have been suggested within the literature.22 ,34 ,40 The problem with the majority of these, however, is that the focus is on whether or not residents of RACFs with dementia should engage in sexual behaviour. A person-centred approach, on the other hand, would take at face value the assumption that residents with dementia should have the freedom and indeed have the right to enjoy sexual expression, and, from there, examine strategies and guidelines that would support resident autonomy and manage risk. In other words, capacity is assumed as the default position under a person-centred model. As Lindsay suggests, RACFs should take as their motto, ‘How can we make sex safe and possible for this resident?’40 rather than seeking to control and limit sexual behaviour, or becoming bogged down in complex ethical dilemmas surrounding the definition of capacity.

Ehrenfeld et al are correct when they assert that ‘understanding the sexual needs of elderly people should become an integral part of the basic training and continuing education of staff.’9 Much of the concern surrounding sex, consent and dementia comes from a lack of education with regard to both the sexual behaviour of older people and people with dementia, as well as the effects of dementia on an individual's capacity to consent. RACF staff should keep in mind that persons with dementia have ‘lived with their sexuality for much longer than they have lived with dementia.’62 In light of this, we propose a sexual decision-making framework for residents with dementia that takes the pursuit of happiness as its guiding principle. Rather than rushing to initiate mediation or capacity assessments when sexual behaviour is encountered, RACF staff should begin with a more common sense approach and observe the resident/s interactions. Appel, in the context of non-verbal institutionalised individuals, has argued that a ‘rule of reasonability, derived from overt social cues, should guide caregivers in determining…acceptable conduct…A simple smile might be enough to betoken consent.’57 Naturally, Appel acknowledges that a smile does not necessarily mean consent; however, the point is that body language and non-verbal cues can provide a good first indication of whether a relationship or behaviour is welcome. On the other hand, Sherman asserts that the person with dementia ‘will usually react quite strongly when rejecting unwanted advances from others.’16 The only justification for interfering in a sexual relationship between two residents who appear happy, we suggest, is if one or both residents are not aware of the identity of the other person and believes the person to be someone else (spouse/partner). Mahieu and Gastmans point out that relationships based on mistaken identity can be psychologically harmful to the resident because ‘old memories may occasionally be stirred up leading to emotional moments of relational recollection. These moments of explicit residual continuity may arouse feelings of shame and regret as one becomes conscious of sharing an intimate relationship with a total stranger.’63

Negotiating the complexities of the intersections between dementia, decision-making and sexuality within the RACF environment will only increase in relevance as more individuals are diagnosed with the disease and move into long-term care. Considering the central role that RACFs are likely to play in Australia's future, they need to develop good policy surrounding sexual expression and decision-making that will enable residents to take charge of their own sexual choices, provided, of course that their actions are not harmful, abusive or illegal. Acknowledging the place of sexuality in the lives of individuals with dementia living in RACFs is an important first step in the process, considering that, ‘an individual with dementia's condition may worsen if that individual is no longer allowed to engage in any intimacy with his or her long-term sexual partner because of a loss of cognitive functioning due to dementia.’33 At present, rather than engaging with the delicate balancing act between resident autonomy and duty of care, RACFs are choosing to ignore the issues and tread on the side of caution; however, in the long-term this will not benefit either the facilities or the residents.

References

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Footnotes

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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