Introduction
Recent years have seen the growth of person-centred and relationship-based approaches to dementia care. It is increasingly recognized that the behavioural and psychological symptoms of dementia (BPSD) can be most usefully understood as communication of unmet needs.Reference Brechin, Murphy, James and Codner1 Estimates suggest that BPSD occurs in 80–97% of those with Alzheimer's diseaseReference Brechin, Murphy, James and Codner1–Reference Gauthier, Cummings, Ballard, Brodaty, Grossberg, Robert and Lyketsos3 and that frequency and severity are positively associated with institutionalization and caregiver distress.Reference Gauthier, Cummings, Ballard, Brodaty, Grossberg, Robert and Lyketsos3 Literature often refers to or acknowledges sexual BPSD,Reference Gauthier, Cummings, Ballard, Brodaty, Grossberg, Robert and Lyketsos3 but tends to focus more on other BPSD, such as agitation, aggression or affective symptoms.
Writers point to the need to consider sexuality in dementia in the context of ageing, referring to ageist stereotypes that position older adults as asexual and assume that sex is for the young.Reference Doll4 The state of knowledge regarding sexual behaviour and experience in middle and later life is poor compared with other areas of sexology.Reference Tsatali and Tsolaki5 It is argued that ageing itself does not cause a loss in libido but rather factors associated with age (physical, psychological and situational) may act as barriers to sexual expression and reduce interest or importance.Reference Gott and Hinchliff6 However, many older adults continue to engage in sexual activity and report a continued interest and enjoyment.Reference Doll4, Reference Gott and Hinchliff6, Reference Ward and Manchip7 Many authors are keen to point out that the onset of cognitive impairment does not necessarily diminish the need for sexual intimacy, love or affection.Reference Harris and Wier8
The literature highlights the challenges in defining sexualized behaviours in dementia. The impact of social and cultural norms has particular relevance in understanding sexuality, and makes the conceptualization of sexuality problematic.Reference Doll4 Some researchers approach the subject of sexuality just in terms of sexual behaviours, and others seeking a broader definition,Reference Tarzia, Bauer, Fetherstonhaugh and Nay9 which encompasses a wide range of sexual expression.
Much of the literature refers to Inappropriate Sexual Behaviours in Dementia (ISBD), although there has been a move away from this terminology, due to the subjectivity and judgement inherent within it.Reference Ward and Manchip7 In their review, Ward and Manchip outline a group of behaviours that are commonly regarded as ISBD but report a varied prevalence rate (1.8–25%) due to discrepancies in definition.Reference Ward and Manchip7 They stress that true hypersexuality (resulting from an organic cause) is rare and that most reported instances and other ‘inappropriate’ sexual behaviours can typically be conceptualized as expressions of normal sexual behaviour.Reference Ward and Manchip7, Reference Tsatali, Tsolaki, Christodoulou and Papaliagkas10 Attempts have been made to define sexual behaviours in terms of the extent to which behaviour interferes with normal care or activities of life and/or in relation to the effect it has on others.Reference Tsatali, Tsolaki, Christodoulou and Papaliagkas10, Reference Alagiakrishnan, Lim and Brahim11 In line with this, we will use the term ISBD to apply only to hypersexuality, and instead use the term sexual BPSD or sexual behaviours that challenge.
Many authors draw attention to the distress caused by sexual BPSD.Reference Higgins, Barker and Begley12 Caregivers’ reports suggest ‘hypersexual’ behaviours are the hardest to manage of all BPSDReference Tsatali, Tsolaki, Christodoulou and Papaliagkas10 and are positively associated with entering institutional care.Reference Tsatali, Tsolaki, Christodoulou and Papaliagkas10 There is a consensus across the literature and within practice guidelines that, as with other BPSD, the behaviour that is causing concern should be fully assessed within the context of a biopsychosocial stepped care model, and non-pharmacological approaches tried before medicating.13–Reference Banerjee15 However, in practice it can seem that medication is used as a perceived ‘quick fix’ when managing sexual behaviours, and it was notable that a far greater literature on pharmacological approaches was available to us in conducting this review. We have focused our review on non-pharmacological approaches to managing sexual behaviours that challenge in dementia. We have not attempted to include literature looking specifically at policy and legal issues, such as mental capacity, which is beyond the scope of this review.
Search methods
Medline and PsychINFO databases were used to identify English language journal publications published from 1995 to 2014 containing the keywords: sexual* OR hypersexual*, OR couple intimacy, AND dementia OR Alzheimer's disease OR frontotemporal dementia OR cognitive impairment. Initially over eight hundred peer-reviewed articles were found. These were screened to ensure they were relevant (i.e. related to patients with dementia, sexuality of patient or caregiver and considered management or best practice approach) and not related to electroconvulsive therapy (ECT) treatment, or pharmacological management. In addition to the literature identified through these means some has been used for reference if previously known to the authors, or identified via references and informal searches.
Understanding sexuality in the context of home and long-term relationships
Estimates of the proportion of couples affected by dementia who experience a change in sexual relations have been up to 80%.Reference Harris, Adams, Zubatsky and White16 Variables related to patient, care partner and the relationship have been considered. Changes in the person with dementia could affect the sexual relationship: for instance, the cognitive ability of the person with dementia to sequence behaviours that form a love-making script or remember instances of recent sexual contact may be impaired. Changes in emotional and behavioural responses may also have an effect on relationships; increased apathy in the person with dementia has been associated in particular with reduced marital satisfaction.Reference Gott and Hinchliff6
Poor physical health and low mood in the care partner is associated with decreased sexual activity.Reference Harris, Adams, Zubatsky and White16 Some have found the role of carer to feel incompatible with a continuing sexual attractionReference Ballard17 and there may be concerns regarding their partners’ ability to consent to sexual activity.Reference Ballard17, Reference Dourado, Finamore, Barroso, Santos and Laks18 Aspects of a couple's relationship, including their sexual history, are particularly important in understanding how dementia may affect sexuality.Reference Harris, Adams, Zubatsky and White16–Reference Dourado, Finamore, Barroso, Santos and Laks18 As noted in the introduction, problems relating to hypersexuality, or what we have defined as ISBD only rarely cause difficulties,Reference Ward and Manchip7 although when these do present the impact on partners may be considerable.
The impact of changes in sexuality on couples affected by dementia
Harris et al.Reference Harris, Adams, Zubatsky and White16 and Dourado et al. Reference Dourado, Finamore, Barroso, Santos and Laks18 explore the impact of changes to sexual activity on couples affected by dementia using semi-structured interviews and a range of quantitative measures, including dementia severity, insight, mood, sexual attitudes and experience, and caregiver burden. Unfortunately the conclusions that can be drawn from Dourado et al. are limited, as they do not fully report either the interview results or method of analysis. However, they do provide a perspective of the person with dementia. In contrast, the phenomenological study of Harris et al.Reference Harris, Adams, Zubatsky and White16 reports a rigorous method of qualitative analysis, but unfortunately does not involve the person with dementia.
Both studies found a change in sexual activity following the onset of cognitive impairment, and refer to ways in which this can negatively affect couples. In providing a perspective from the person with dementia, the study by Dourado et al.Reference Dourado, Finamore, Barroso, Santos and Laks18 is fairly atypical of the literature. They focus on the dissatisfaction reported by both patient and care partner with the changes in their sexual relations. Although they found this to be linked with severity in spousal reports, this was not linked with dementia severity, gender or awareness in the accounts of people with dementia. The actual proportion of interviewees who were dissatisfied with their sexual relationship, however, is not reported and the couples who did not appear to report ‘interruption’ of sexual activity is not discussed.
Harris et al.Reference Harris, Adams, Zubatsky and White16 outline a complex process by which care partners attempt to adjust to the role changes necessitated by their partner's dementia, whilst trying to maintain an emotional and physical connection to their spouse. This seems to echo a process described by BallardReference Ballard17 in her discussion paper, in which she draws attention to the challenge for care partners in dealing with unanticipated loss and change, at a time when many are dealing with the developmental tasks of their own ageing. Both papers consider the different responses care partners may have to changes in sexual relations with their partner. Harris et al.Reference Harris, Adams, Zubatsky and White16 note how some are too overwhelmed or distraught to continue sexual activity, whilst others accept the loss of physical intimacy, especially in situations where a couple's history of sexual connection is poor. The quality of the relationship prior to the onset of Alzheimer's disease appears to act as a buffer and is seen as extremely important by Harris et al.Reference Harris, Adams, Zubatsky and White16, who point to better outcomes for these couples.
Arguably the conclusions that can be drawn from Harris et al.Reference Harris, Adams, Zubatsky and White16 are limited, due to the small sample size, and lack of demographic and clinical information and patient perspective. Despite this, the richness of the data allows for a more detailed, complex report of the subject matter and clear links are made to clinical implications. Given the dramatic changes in relationships that the authors note, they encourage professionals to include questions relating to changes in sexual activity and a history taking that incorporates an understanding of the couple's relationship and sexual history prior to dementia. The importance of providing a context in which care partners feel able to talk about sexual issues is emphasized; without this opportunity care partners and people with dementia may not feel able to initiate discussion about this.
Both BallardReference Ballard17 and Harris et al.Reference Harris, Adams, Zubatsky and White16 emphasize how couples may wish to continue an active sex life. Some couples see sexual connection as a source of support, reassurance and a way of copingReference Ballard17 and people with dementia may see their role as a sexual partner as one role they can continue to fulfil, and reciprocate when other ways of providing for their partner have been lost.Reference Davies, Zeiss, Shea and Tinklenberg19 Ballard calls attention to how professionals’ beliefs, attitudes and values can limit the help received by families and points to the need for staff training. Her paper is one of the few we identified to set out clear, practical guidelines for readers to follow in attempting to respond to sexual behaviour displayed by people with a dementia.
Applying principles from couple therapy
Two papersReference Davies, Zeiss, Shea and Tinklenberg19, Reference Loboprabhu, Molinari, Arlinghaus, Barr and Lomax20 attempt to apply principles from couples therapy and sex therapy as a means to address some of the relationship issues encountered by people with dementia and their partners.
The ability to continue to enjoy a sexual relationship is linked by Davies et al.Reference Davies, Zeiss, Shea and Tinklenberg19 with research that indicates that people with dementia are more likely to stay at home in relationships where the care partner feels some reciprocity. Again the importance of staff attitudes is highlighted, and Davies et al.Reference Davies, Zeiss, Shea and Tinklenberg19 propose an exercise to enable staff to separate their own sexual values from those of the people they work with. They go on to propose an interview framework (the PLISSIT model) from which to assess sexual concerns sequentially, encompassing interventions such as increasing understanding of changes associated with ageing as well as specific suggestions aimed at particular sexual problems. The authors illustrate their discussion with quotes from care partners who have benefited from this approach, but do not say how many couples have tried this approach and there is no formal evaluation.
A discussion paper by Loboprabhu et al.Reference Loboprabhu, Molinari, Arlinghaus, Barr and Lomax20 sets out to consider the meaning of the ‘marital bond’ and how this might be disrupted by dementia. As the authors found a lack of relevant literature they attempted instead to draw together different theoretical constructs with their clinical experience, in order to develop a framework for offering support to couples affected by dementia. Unfortunately the authors neglected to provide any method relating to how particular theoretical constructs were selected, or to disclose any information about their own theoretical orientation. Nevertheless the authors provided a fresh perspective to understanding these issues. The marital therapy framework, which sets out specific interventions (e.g. conduction of marital life review in order to foster a sense of continuity in the relationship; exploration of sexual issues in order to decrease shame and improve intimacy), has direct clinical applicability. Consistent with other authors already discussed, Loboprabhu et al.Reference Loboprabhu, Molinari, Arlinghaus, Barr and Lomax20 conclude by highlighting the importance of professionals acknowledging the sexual dimension in relationships. Of these studies that focus on couples, they are unique in advocating the significance of the spiritual dimension to relationships.
Specific clinical interventions where sexual behaviours that challenge occur at home
Only one paper was identified that specifically considered an intervention designed to alleviate challenging sexual behaviour in the context of the family home.Reference Mee Huong and Razali21 This case study report describes an intervention with a man with a vascular dementia who was reported to have become hypersexual and aggressive towards his wife, whom he believed to be having an affair. He is described as being preoccupied by sex and both physically and verbally aggressive towards his wife. The intervention began with a psychiatric in-patient admission, and focuses both on pharmacological treatment, which was initiated along with psychoeducational work, carried out with the man's wife and children. There is reported to be an improvement in his presentation, including his physical health, and also in their relationship. The authors acknowledge the need to consider psychosocial interventions as a first-line intervention and point to the impact of the psychoeducational work, which enabled the family to better understand the behaviour. The case is helpful in illustrating the kinds of challenges that may arise, where it is necessary to prevent harm and provide support to the care partner, whilst managing the needs of the person with dementia. The case study also illustrates how it may be possible for a couple affected by dementia to renegotiate the intimate aspects of their marriage. Unfortunately, however, as the pharmacological and non-pharmacological approaches were used in parallel, it impossible to know which aspects of the intervention were helpful with which aspects of the patient's presentation.
Considering sexual behaviour in the context of residential care settings
A large proportion of the literature focuses on the management of sexual behaviours within the context of institutional settings for older people, and comprises a small number of studies that discuss case management of specific sexual behaviours that challenge. Although not all studies discussed here are specific to people with dementia they have been regarded as relevant, given that in the UK, it is estimated that 80% of older people living in residential care settings have a dementia,22 although many are undiagnosed.
Characteristics and contexts for sexual expression
One aspect of this literature relates to the factors which appear to create contexts for sexual behaviours that create a challenge within institutional care settings. Several authors have attempted to describe or categorize the sexualized behaviours observed in institutional settings. One such categorization places behaviours under the broad groupings of ‘sex talk’, ‘sex acts’ and ‘implied sex acts’,Reference Ward and Manchip7 which may be useful when reporting prevalence. Others have tended to group sexual behaviours in terms of motivation, e.g. ‘love and caring’, ‘romance’ or ‘eroticism’.Reference Ehrenfeld, Bronner, Tabak, Alpert and Bergman23
With the onset of a cognitive impairment sexual behaviours may be expressed publicly rather than privately, due to a range of possible factors associated with the dementia, such as misinterpretation or reduced inhibition. Some authors have focused on the need to redirect residents to a private room, and highlight the difficulties caused by insufficient privacy, or a lack of facilities allowing for intimacy between residents (e.g. two seater chairs or double beds). Reactions of other residents, family and staff members may then influence the negative impact of challenging behaviours, possibly inadvertently reinforcing them.
Staff attitudes and behaviour
Self-report dataReference Doll4 suggests that the majority of staff (85%) are aware of sex acts within their place of employment. Fewer (22%) recognize that there have been residents who would identify as lesbian/gay/bisexual/transgender (LGBT). A variety of staff variables have been suggested as impacting on staff perceptions and reporting.Reference Doll4, Reference Di Napoli, Breland and Allen24
Research suggests that staff report neutral-positive attitudes towards residents living with dementia forming intimate relationships. Di Napoli et al.Reference Di Napoli, Breland and Allen24 found several positive associations between factors such as education, and knowledge and attitudes to both dementia and sexuality. On the other hand, duration of employment was found to be negatively associated with attitudes, although this finding was not replicated by Doll,Reference Doll4 whose sample differed from that of Di Napoli et al.Reference Di Napoli, Breland and Allen24
Staff attitudes are not always found to be positive. Whilst reporting positive attitudes on questionnaires, in De Napoli's focus group most staff reported that sexual expression should be ignored and commonly adopted a tone of disapproval.Reference Di Napoli, Breland and Allen24 Consistent with this, Mayers and McBrideReference Mayers and McBride26 report that residents’ sexuality tends to be discussed in an insulting and demeaning manner, labelled with value judgements and viewed as a non-issue. This is not a problem unique to dementia care; nurses’ perceptions of sexuality in older people tend to be negative regardless of cognitive health.Reference Mahieu, Van Elssen and Gastmans27
Villar et al.Reference Villar, Celdran, Faba and Serrat28 investigated staff attitudes and reactions towards romantic relationships between residents by presenting simple case examples. Interviewee's perceptions of abuse were explored and a cautionary stance was found to be common, especially when an inequality in the couple's cognitive ability was perceived, and staff were understandably concerned with reducing risk. In this study permissive reactions were uncommon and staff mostly indicated that they would seek advice or separate the couple in such a scenario. Managers indicated to DollReference Doll4 that in response to sexual behaviour, nursing staff will most commonly seek advice from superiors or peers, redirect residents, follow policy or, less commonly, react with disgust, ignore the issue, or panic.Reference Doll4
DollReference Doll4 found opinions on how sexual behaviour should be managed to be varied. Many responses referred to institutional policy regarding consent; however, few of the homes’ policies included anything specifically related to resident's rights to sexual expression.Reference Doll4 Unsurprisingly, given this lack of relevant policy, other authorsReference Bauer, McAuliffe, Nay and Chenco25 have reported that nurses do not routinely enquire about or conduct sexual health assessment and patients are not provided with information regarding how their sexual needs will be respected.
Tools for staff training
Somewhat surprisingly, despite a clear call by authors and staff for staff training in managing sexual behaviours that challenge within institutions, we found little published which seeks to develop, implement or evaluate the use of such tools. We were able to identify only two papers which attempt to evaluate a staff intervention. Both Mayers and McBrideReference Mayers and McBride26 and Bauer et al. Reference Bauer, McAuliffe, Nay and Chenco25 delivered a 3-hour workshop, the content of which was largely similar. The topic of dementia was covered within the broader context of sexuality and its relation to ageing, institutional care, and other barriers to sexuality (including dementia). Attitudes and stereotypes, legal and ethical issues (e.g. consent assessment and staff/resident rights) and appropriate communication (e.g. openness and adoption of residents’ terminology) were also covered.Reference Mayers and McBride26
Bauer et al.Reference Bauer, McAuliffe, Nay and Chenco25 found a significant effect of the workshop, particularly on items relating to understanding sexual needs, to homosexual relationships, and to dementia and sexuality, as measured by several surveys of knowledge and attitudes completed pre- and post-intervention. Unfortunately effect sizes were small (there was a suspected ceiling effect on some items and others appeared to be immune to change) and they did not conduct a delayed measure.
Mayers and McBrideReference Mayers and McBride26 used telephone interviews 5 months after the workshops, in which staff reported positively. In particular staff valued the opportunity for open discussion, although there was consensus that further discussions as well as definitive answers and practical solutions would have been an improvement. Thirty-five per cent reported a change in awareness and attitudes towards geriatric sexuality (describing an increase in acceptance, knowledge and recognition).
Whilst Mayers and McBride's staff reported reduction in embarrassment when talking to patients, neither study otherwise sought to assess the impact of training on staff–resident interactions or on residents. Bauer et al. have subsequently developed the Sexuality Assessment Tool (SexAT),Reference Bauer, Fetherstonhaugh, Tarzia, Nay and Beattie29 the aim of which is to help facilities identify and in turn improve on aspects of environment and practice which are supportive of older adult's sexual expression. Developed using a rigorous multiphase design, the pool of items includes a few which relate specifically to dementia and to consent assessment issues. As of yet the researchers have not evaluated the use of such a tool in practice but state that they will focus on this. A tool such as this, which assesses a broader range of areas than staff attitudes, could be used to gauge the impact of educational approaches and to identify aspects of interventions or specific institutions most in need of attention
Case management of behaviours that challenge
Two papers, both from Israel, describe interventions in which researchers worked with staff to consider individual situations arising in care settings. Ehrenfeld et al.Reference Ehrenfeld, Tabak, Bronner and Bergman30 and Tabak and Shemesh-KigliReference Tabak and Shemesh-Kigli31 both describe a decision-making process in which a nurse and research team worked together to generate possible alternative actions, selecting those that were felt to maximize patient autonomy, privacy and needs whilst minimizing staff, family and resident distress. Both provide examples of cases, which include justifications of decisions, but do not attempt to evaluate the decision-making technique or efficacy of selected management techniques. Changes in practices over time and across cultures also have implications in extrapolating from these studies.
Another case report was foundReference Tune and Rosenberg32 which describes hypersexuality in a 68-year-old man living with dementia. Assisted-living staff described prolonged periods of agitation, which involved intimate touching and grabbing of female residents and staff. Previous attempts to treat the behaviour had included isolating the patient and the use of anti-psychotic medications. On admission to hospital the patient was given a 3-foot stuffed ‘Pink Panther’ toy which he groped and fondled, and telephone follow-up confirmed that the patient consequently refrained from inappropriate touching of residents and staff. The researchers argue that a creative case-by-case approach may be a better clinical management solution than a standard approach to care in such cases, due to the heterogeneous nature of dementia.
Care for residents with LGBT sexual identities
Within this research authors also commonly identify a need to consider the needs of the LGBT community.Reference Doll4, Reference Villar, Celdran, Faba and Serrat28, Reference Price33 PriceReference Price33 reports findings from a series of interviews exploring the experiences of 21 LGBT men and women who cared for a person living with dementia. This paper explores how their experiences of providing care influenced their thoughts about their own ageing trajectories. Respondents expressed concerns over the possibility of entering residential care themselves, having observed service providers struggle to provide genuinely person-centred services for the people they were caring for, most of whom were heterosexual. Anxieties were expressed about the quality of care and support they themselves might receive as a member of a sexual minority. Respondents doubted that their diverse sexualities would be acknowledged, respected or (even less likely) celebrated.
When asked by PriceReference Price33 whether specialist care provision for LGBT service users should exist, responses were mixed but surprisingly negative given earlier studies conducted in the USA which suggested that most people were in favour of such provisions.Reference Hubbard and Rossington34 Many were of the opinion that a societal attitude change that fostered truly inclusive care services would be preferable. Respondents felt that gay people with dementia should be able to access gay literature and entertainment and have their sexuality acknowledged, irrespective of their cognitive abilities. One participant proposed that a ‘kitemark’ be used by dementia care providers to act as a visible sign to the LGBT community that they are entering an environment that allowed for, and respected the spectrum of sexual identities (such an idea has been previously suggested by Heaphy and YipReference Heaphy and Yip35 in relation to old age services).
Conclusions
Although there is a large literature relating to sexuality and dementia, much of this focuses purely on pharmacological management or issues around policy and/or legal perspectives. Research and literature-seeking to evaluate non-pharmacological approaches is limited, and limited further by problems of definition and a lack of rigorous methodology. Whilst there is an international perspective within the literature, which points to commonalities in terms of stigma around ageing and sexuality and the importance of staff attitudes and training, the conclusions that can be drawn from this body of literature are limited by vast differences in the types of provision available in different countries. This is of concern, given that clinical guidelines now stress that non-pharmacological approaches must be used as a first–line treatment in managing BPSD.Reference Brechin, Murphy, James and Codner1, Reference Banerjee15 It seems imperative that we develop a better evidence base, in order to assist practitioners to more effectively respond to the challenges presented by sexual BPSD, and one that does not focus almost solely on pharmacological management.
Having said this, there appears to be a broad consensus that (a) the sexual needs of people with dementia and couples affected by dementia should be acknowledged, and (b) whether working in the context of home or an institutional setting, staff training is key. The delivery of this must be guided by an understanding of how staff attitudes are shaped by cultural and societal stigma, and myths about sexuality and ageing, as well as dementia. Whilst there are a number of models of staff education proposed, we found it difficult to find any that had been formally evaluated.
Although we have focused on the need for staff training, we recognize that such interventions will only be helpful if supported by clear policy and practice guidelines. What is apparent throughout the literature is complexity. The decision-making process that staff are faced with can be challenging and requires the balancing of the various (and sometimes conflicting) needs and opinions of the person with dementia, peers, care partners, family members, and other staff. Given the ethical and legal complexity in this area, as well as the emotional responses it appears to generate, it is important that staff feel supported and not blamed.
Responding helpfully to sexual behaviours relies on clearly clarifying behaviour and developing an understanding of what needs it might express. This is consistent with models for responding to other forms of BPSD, and it is important to emphasize that sexual behaviours should be understood within this same framework, where non-pharmacological approaches should be tried before considering medication.Reference Brechin, Murphy, James and Codner1 Indeed, one author argues that to treat sexual behaviours as if they are different only serves to reinforce taboos around them.
Finally, we note the limited number of papers seeking to include the perspectives and experiences of care partners of people with dementia, and of people with dementia themselves. There are clear methodological challenges in interviewing people with dementia about sexuality.Reference Tarzia, Bauer, Fetherstonhaugh and Nay9 Many of these challenges that relate to difficulties in communication also exist in other areas of dementia research, and strategies have been found to manage them.Reference Cheston, Bender and Byatt36 Further challenges arise due to a discomfort with the subject matter of sexuality. In order to fully consider how we might work most effectively to address issues around dementia and sexuality, it seems vital to gain a better understanding of the views of people with dementia and of those who care for them.
