Sexuality and dementia

First published May 2007, updated December 2021

Key points:

• Many couples in whom one partner suffers from dementia, want to maintain a sexual relationship, experiencing sexual intimacy as a source of comfort, reassurance and mutual support.
• Almost a quarter of couples in whom one partner suffers from dementia, remain sexually active; of those couples no longer sexually active, a significant proportion are dissatisfied by the absence of a sexual relationship.
• Physical intimacy, such as kissing and cuddling, is unlikely to result in sexually inappropriate behaviour by a patient who suffers from dementia.
• Competency is always context specific and no diagnosis, not even dementia, precludes a patient’s capacity to reach competent decisions in specific areas, such as engaging in sexual relationships.
• If a patient in institutional care is not competent to decide, staff have a duty of care towards the patient to ensure that no harm results.
• Inappropriate sexual behaviour is not particularly common in dementia.

There is limited empirical information about the impact of dementia on sexual function, despite the high prevalence of dementia, and despite the concerns often expressed by patients and their partners. In an uncontrolled survey of 55 men with Alzheimer’s disease (AD), researchers found that in 53 per cent of these men the reported onset of erectile dysfunction occurred at the same time as the cognitive impairment started¹. This was not related to age, degree of cognitive impairment, physical illness or medication. There are no published studies regarding the prevalence of female sexual dysfunction in dementia.

Established relationships The onset of dementia does not erase sexuality, but rather alters sexual behaviour and expression in many patients, which can be extremely distressing to both the patient and their partner. Despite these difficulties, many couples want to maintain a sexual relationship €” experiencing sexual intimacy as a source of comfort, reassurance and mutual support. The more the partner can retain the ability to view the patient as a person with whom to enjoy sexuality, the more likely that the relationship can endure with some quality. Some partners, however, may lose sexual attraction and interest as the disease progresses and as they adapt themselves to the role of carer, while others may seek sexual satisfaction elsewhere, through private masturbation, prostitutes or an outside relationship. This may lead to guilt, especially if the patient is still living at home. This is a particularly difficult area to manage, as partners are understandably reluctant to talk about it. If they do, a non-judgmental supportive approach is vital².

In one study, 38 spouses of patients with AD were interviewed over a year-long period to assess the impact of the disease and its progression on the couples’ pattern of sexual behaviour³. The patients were categorised by their partners as moderately impaired and requiring assistance with common activities of daily living. Most of the healthy spouses acknowledged that their sexual relationship had changed since the onset of the disease, but there were few reports of behaviours characterised as bizarre or inappropriately expressed outside the marital relationship. Common sources of distress were:

• awkward sequencing of sexual activity;
• requests for activities outside the couple’s sexual repertoire; and
• lack of regard for the sexual satisfaction of the healthy partner.

Additional problems in established relationships include:

• loss of sexual interest;
• increased sexual demands; or
• inadequate sexual advances by the patient with dementia; and
• marital strain or loss of intimacy resulting from the patient’s cognitive and behavioural decline4 . Some carers will express concerns that their partner with dementia may not have the capacity to consent to sexual relations.

Another study found a high rate of erectile dysfunction in partners of patients with dementia and its authors postulated that this may be due to the additional stress placed on the relationship by the illness⁵. Other authors reported the findings of two surveys of community-dwelling married couples, where one individual had a diagnosis of AD⁶. The first, a survey of 135 couples, found that 80 per cent of spouses reported a change in the patient’s sexual activity. This was not linked to degree of cognitive impairment or gender of the patient. The second study reported the results of a questionnaire about sexual relations before and after the onset of AD. Indifference to sexual activity was common among patients (63 per cent of respondents). Most respondents who reported a change in sexual activity noted a decrease in it. Although increased sexual demands were rare in this study (only eight per cent of respondents), this problem may be more common in other types of dementia, especially frontal lobe dementia and Pick’s disease. Furthermore, increased sexual demands may be particularly upsetting for carers, and very difficult to discuss with others². Another survey of 40 spouses of patients with dementia found that nine (23 per cent) couples were sexually active⁷. Of those no longer sexually active, almost 40 per cent were dissatisfied by the absence of a sexual relationship.

A five-year follow-up study of two groups of couples, one in which one partner had dementia, and a control group where neither partner was ill has also been reported⁸. At baseline the partners in the two groups reported the same levels of affection and sexual activity. Over the five years, the reported affection remained steady for the control spouses, but it declined in the spouses in the dementia group except when the individual with dementia had been admitted to institutional care €” after which affection in the spouse recovered significantly. Fewer couples with a partner with dementia maintained sexual activity (27 per cent at five years after onset of dementia) compared to control spouses (of whom 82 per cent were sexually active at the same period). However, in those partnerships with dementia where sexual activity was maintained, the mean frequency of sexual contact was higher than in controls, and demands for frequent contact were reported by 50 per cent of their carers. Sexual activity in these couples was also related to the spouses’ physical health and absence of depression, but not to the cognitive state of the partner with dementia. Counselling about the reasons for the patient’s altered sexual behaviour, and an explanation that this is related to the dementia, may help to reassure partners and alleviate their distress. It is important to emphasise that a lack of sexual activity should not preclude physical intimacy, and that physical intimacy, such as kissing and cuddling, is unlikely to result in sexually inappropriate behaviour by the patient⁹.

New relationships

A person with dementia may attempt to start a sexual relationship with a new partner, which inevitably raises issues of competency. This is not an uncommon occurrence, particularly within institutional settings like a residential or nursing home. Although this behaviour may be difficult to cope with for health and social care staff and family alike, it requires careful thought about the individual’s rights and serious attention to the complex task of determining the capacity of the patient (and the other party) to make informed judgments regarding new relationships. It is important to remember that competency is always context specific and no diagnosis, not even dementia, precludes a patient’s capacity to reach competent decisions in specific areas.

In order to facilitate decisions regarding a patient’s ability to consent to sexual relationships, a structured assessment process has been developed, which provides a helpful framework for clinicians¹⁰ (see Table 1). This includes ascertaining the patient’s awareness of the nature of the relationship, the ability to avoid exploitation and the awareness of potential risks. The paper also describes the specific steps involved in this assessment process, and acknowledges the difficulties that can result from complaints by family, visitors or even other staff as a result of the implementation of this caring and respectful policy.

If a patient is deemed competent to understand, consent to and form a relationship with another competent adult, then the choice is primarily for the patient to make €” preventing a patient from doing so would be a violation of their basic human rights. Staff may have a role in supporting this decision (for example, by ensuring access to private space). If a patient in institutional care is not competent to decide, staff have a duty of care towards the patient to ensure that no harm results. Whether a noncompetent patient should be allowed to engage in a sexual relationship is a diffi cult decision to make and will need to be carefully considered in the light of the person’s background and previous choices, and the nature of the contact. A discussion with the patient’s family may be helpful.

Sexual expression in institutional care

Sexual expression is not limited to intercourse and should be interpreted broadly to reflect a wide range of physical acts, which include intercourse, masturbation, oral sex, fondling, kissing and hugging as well as a person’s need for closeness, tenderness and warmth. Although health and social care staff are generally reported to show a positive attitude towards sexual expression of residents in residential and nursing homes¹¹, it remains debatable whether these positive attitudes are consistent with the implemented policies in institutional care in general, and with the actual behaviour of staff in particular. Cultural values, personal beliefs and especially inadequate training provide obstacles for staff (as well as carers) in confidently and sensitively responding to residents’ sexual expression. In this context, very few care homes provide their residents with double beds, and many such facilities have quite draconian rules disallowing sex in keeping with acute hospitals of all disciplines. There are authors who advocate that in cases where competency to engage in sexual activity is established in both individuals, appropriate facilities (a double bed, time in private, condoms, water-based lubrication and, if desired, sex toys) should be provided by care facilities for their residents².

Inappropriate sexual behaviour

Inappropriate sexual behaviours can be defined as sexual behaviours not suited to their context and that impair the care of the patient in a given environment¹². There is sometimes a fi ne line between appropriate and inappropriate sexual behaviour, which often depends on the values of the staff and relatives of the patient concerned.

Underlying the assessment of €˜appropriateness’ are the often-pervasive bias of ageism, the stereotypical view of older adults as asexual and, particularly in the medical literature, the notion that sexuality in dementia tends to be a problem rather than a normal human form of expression in the context of a specific condition. Inappropriate sexual behaviour is not particularly common in dementia. One study found that seven per cent of 178 people with AD living at home, in residential care or in hospital showed sexually inappropriate behaviour with about equal frequency in men (eight per cent) and women (seven per cent)¹³. There was a significant positive association with severity of dementia. A review of the literature in this specific area found few references to inappropriate sexual behaviour in patients diagnosed with AD, noting that between two per cent and seven per cent displayed this difficulty, but reported that as many as 14 per cent may show an increase in libido¹⁴.

An observational study of 40 men with dementia living in long-term care facilities noted inappropriate sexual behaviours (defined as sexually explicit comments, touching someone other than a partner on the breast or genitals, and exposing breasts or genitals in public) in only 18 per cent of patients¹⁵. Ambiguous sexual behaviours, such as appearing not fully dressed in public, occurred in less than four per cent of the 1,800 time segments coded. There was no evidence of sexually aggressive behaviours toward staff or other residents. Various authors have classified inappropriate sexual behaviours into common types^4,12 which include:

• Inappropriate sexual talk. This is the most common form of inappropriate behaviour and involves using sexually explicit language in a manner out of keeping with the patient’s premorbid personality.
• Sexual acting out. These include clear sexual acts that occur inappropriately, either solitary, or involving staff or other residents, in private or in public areas. Examples are acts of grabbing, exposing, publicly masturbating and fondling, making sexual advances toward staff, and getting into bed uninvited with other residents.
• Implied sexual acts. These include openly reading pornographic material or requesting unnecessary genital care.
• False sexual allegations. Deliberate dishonesty excluded, these may occur as part of a variety of psychopathological symptoms occurring in dementia such as hallucinations and delusions. The possibility that a patient’s allegations are true must always be considered.

Clear assessment of the type of behaviours displayed is paramount for a balanced management plan to be developed. This includes the frequencies of the behaviours, what they are, when and where they occur, and with whom. A simple and convenient general method of recording behaviours is the ABC system, where staff record the:

• antecedents (A);
• behaviours (B);
• and consequences (C)¹⁶

Alternatively, a more complex standardised system such as dementia care mapping could be utilised¹⁷. The effects of interventions to alter sexual inappropriate behaviours cannot be properly evaluated without clear baseline records¹⁸. However, problems should not have the last word. One should end with a recognition of the beauty and importance of sexuality in later life. This quotation comes from an interview with a 74-year-old woman: €˜Sex isn’t as powerful a need as when you’re young, but the whole feeling is there; it’s as nice as it ever was. He puts his arms around you, kisses you, and it comes to you €” satisfaction and orgasm €” just like it always did… don’t let anybody tell you different’^19,20.

References

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2. Warner J. Sexuality and Dementia. In: O’Brien, J., Ames, D. & Burns, A. (eds). Dementia (2nd edn), 2000; 267€“271. Arnold, London
3. Duffy LM. Sexual behavior and marital intimacy in Alzheimer’s couples: a family theory perspective. Sexuality and Disability 1995; 13: 239€“54
4. Haddad PM, Benbow SM. Sexual Problems associated with Dementia: Part 1. Problems and their Consequences. International Journal of Geriatric Psychiatry 1993; 8: 547€“51
5. Litz BT, Zeiss AM, Davies HD. Sexual concerns of male spouses of female Alzheimer’s disease patients. Gerontologist 1990; 30: 113€“16
6. Derouesne C, Guigot J, Chermat V et al. Sexual behavioural changes in Alzheimer’s disease. Alzheimer Disease and Associated Disorders 1996; 10: 86€“92
7. Ballard CG, Solis M, Gahir M et al. Sexual relationships in married dementia sufferers. International Journal of Geriatric Psychiatry 1997; 12: 447€“51
8. Wright LK. Affection and sexuality in the presence of Alzheimer’s disease: a longitudinal study. Sexuality and Disability 1998; 16:167€“79
9. Davies HD, Zeiss A, Tinklenberg JR. Till death do us part’: intimacy and sexuality in the marriages of Alzheimer’s patients. [see comments]. Journal of Psychosocial Nursing and Mental health Services 1992; 30: 5€“10
10. Lichtenberg PA, Strzepek DM. Assessment of institutionalized dementia patients’ competencies to participate in intimate relationships. Gerontologist 1990; 30: 117€“120
11. Bouman WP, Arcelus J, Benbow SM. Nottingham Study of Sexuality & Ageing (NoSSA I). Attitudes regarding sexuality and older people: a review of the literature. Sexual and Relationship Therapy 2006; 21: 149€“61
12. Black B, Muralee S, Tampi RR. Inappropriate sexual behaviours in dementia. Journal of Geriatric Psychiatry and Neurology 2005; 18: 155€“162
13. Burns A, Jacoby R, Levy R. Psychiatric phenomena in Alzheimer’s disease. IV: disorders of behaviour. British Journal of Psychiatry 1990; 157: 86€“94
14. Cummings JL, Victoroff JI. Noncognitive neuropsychiatric syndromes in Alzheimer’s disease. Neuropsychiatry, Neuropsychology, & Behavioral Neurology 1990; 3: 140€“158
15. Zeiss AM, Davies HD, Tinklenberg JR. An observational study of sexual behavior in demented male patients. Journals of Gerontology Series A- Biological Sciences & Medical Sciences 1996; 51: M325€“9
16. Wells A. Cognitive Therapy of Anxiety Disorders. John Wiley and Sons, Chiceste,1997
17. Kitwood T, Bredin K. A new approach to the evaluation of dementia care. Journal of Advances in Health and Nursing Care 1992; 1: 41€“60
18. Bouman WP. Sexuality in later life. In: The Oxford Textbook in Old Age Psychiatry, 2007. Tom Dening, Robin Jacoby, Catherine Oppenheimer, Alan Thomas (eds.). Oxford University Press, Oxford (in press)
19. Oppenheimer C. (2002). Sexuality in old age. In: Psychiatry in the Elderly, 2002/ Robin Jacoby & Catherine Oppenheimer (eds.). Oxford University Press, Oxford
20. Weg RB. The physiological perspective. In: Sexuality in the later years; roles and behaviour, 1983. R.B. Weg (ed.). New York: Academic Press