Older informal caregivers aged 65+ years account for 34% of all carers in the USA (Family Caregivers Alliance, 2016), 22% in England and Wales (Carers UK, 2015), and 24% in Australia (Deloitte Access Economics, 2015). For many older carers, this means looking after their spouse or intimate partner who in many cases has dementia (Donnellan et al., Reference Donnellan, Bennett and Soulsby2015). As the incidence of dementia increases, the need to understand the impact of caring on these intimate relationships becomes more vital, so the experiences of spousal caregivers can be anticipated, validated, and supported. It is also important to understand the gender differences in these care relationships, so that education and services can be tailored to meet the different needs of men and women caregivers. Sexual activity in later life is associated with both mental and physical health (Ganong and Larson, Reference Ganong and Larson2011; Anderson, Reference Anderson2013), and is therefore, important to maintain, perhaps even in the context of caring for someone with dementia.

In this issue, the paper by Nogueira et al. (Reference Nogueira2017) found the presence of dementia impacts on the sexual relationship between the person with dementia and their spouse-caregivers, with decreased sexual activity and changes in sexual activity being positively correlated with reduced satisfaction. For the person with dementia, this was more apparent in the early stages, perhaps because they are more aware of the changes when in the mild stage of the disease. For caregivers, sexual dissatisfaction was associated with gender, with female caregivers being less sexually satisfied than male caregivers. How sexual satisfaction is defined, however, was not made clear and as the instrument used (Questionnaire on Sexual Experience and Satisfaction) is not available in English, it is difficult to determine what is actually being measured.

The authors suggest that the presence of sexual dissatisfaction among female caregivers may be due to the multiple roles that they take on, making them too busy to prioritize sexual intimacy or making them feel more like a mother to the person they are caring for than a spouse. The latter finding may be due to gender differences in the way that the caregiving relationship is played out (Dow and Meyer, Reference Dow and Meyer2010). For instance, women are much more likely than men to be caregivers earlier in life and often have multiple caring roles over the life course, whereas men are more likely to become caregivers in older age and usually care for a spouse. This impacts the way that men experience the caring role. Men are more likely to see it is a new role, something that has to be learnt and something they can expect others to help them with. They often see caregiving as a job, to be managed and contained (Dow and Meyer, Reference Dow and Meyer2010). They may also be happy to have the opportunity to reciprocate care they have received from their wives earlier in life (Fisher, Reference Fisher1994). Women, on the other hand, are likely to have been caring for children, parents, or others earlier in life, so are more likely to associate caring with parenting or caring for a parent. Qualitative interviews with women spousal caregivers support this contention, yielding descriptions such as, “I am now his mother rather than his wife” or “I've got another baby” (Dow, Reference Dow2003) p129). As the authors of the current article point out, this gives sexual intimacy an incestuous quality, which deters women from wanting sexual intimacy.

Other qualitative studies reveal a more nuanced picture than this article suggests, with the quality of sexual relationships depending greatly on the previous marital relationship (Harris et al., Reference Harris, Adams, Zubatsky and White2011) and in some cases, improving as a result of the dementia caregiving relationship (Eloniemi-Sulkava et al., Reference Eloniemi-Sulkava2002). The latter study of 42 caregivers of people living with dementia found that one in ten caregivers had experienced positive sexual behavioral changes, and one-third had found that expressions of tenderness toward them had increased. Harris and colleagues (Reference Harris, Adams, Zubatsky and White2011) suggest that sexual intimacy may even be an important coping mechanism for the caregiver, a way of maintaining something that is familiar in the relationship when all else changes. According to Roach (Reference Roach2004) sexual sensations for the person living with dementia can be a lasting source of satisfaction as pleasures become fewer over time.

For those PwAD in residential care, sexual expression can still be important but can be difficult to maintain (Bauer et al., Reference Bauer, Fetherstonhaugh, Tarzia, Nay, Wellman and Beattie2013b). Accommodation is often not conducive to sexual intimacy (a lack of double beds and/or private rooms), staff can be generally disapproving or lack awareness or understanding, or do not respect residents’ privacy, or are concerned about consent issues; and individual organizational philosophy can play a large part in determining whether residents’ sexual expression is accepted or censured (Bauer et al., Reference Bauer, Fetherstonhaugh, Tarzia, Nay, Wellman and Beattie2013b).

For lesbian, gay, bi-sexual, transgender, and intersex (LGBTI) partners the difficulties are compounded further, as services have conventionally assumed that users are heterosexual. Moreover, the historical experience of stigma and discrimination has led to a wish to hide their sexual orientation due to a fear of unwanted disclosure based on personal safety issues (Birch, Reference Birch2009, Tinney et al., Reference Tinney, Dow, Maude, Purchase, Whyte and Barrett2015). A tool developed in Australia addresses the issue of intimacy in residential-aged care, the Sexuality Assessment Tool (SexAT) is designed to help support the sexual expression of residents, both heterosexual and LGBTI (with and without dementia), and is aimed at raising awareness amongst staff and management about their attitudes and practices (Bauer et al., Reference Bauer, Fetherstonhaugh, Nay, Tarzia and Beattie2013a).

There are clearly many barriers to maintenance of sexual intimacy in the presence of dementia, especially as the disease progresses. It may be difficult to know if the person with dementia is truly consenting to sexual intimacy and intercourse; they may have difficulty following the usual sequence of sexual activities they had previously enjoyed with their partners; and/or they may have co-morbid physical illnesses or functional decline that make sexual activity impossible.

This article (Nogueira et al., Reference Nogueira2017) raises some important issues, particularly in regards to gender and sexuality. However, a tool for measuring the changes that occur in sexual satisfaction between couples over time, rather than providing a static measure of satisfaction at any given time point, is required. Future research in this area would be welcomed, as would larger, mixed methods studies. As the incidence of AD increases the world over, epidemiological data from population samples combined with qualitative insights, would provide the background for developing programs and services that continue to support PwAD and their spousal caregivers to maintain as “normal” a life as possible; particularly given the significance of sexual intimacy for many older people and its associated impact on health and well-being.

It is also important that this aspect of the care relationship is considered by health practitioners. Just asking a question about the sexual relationship may be enough to give clients/patients and their caregivers permission to speak about it if they want to. It is also important for caregivers to understand that they are not alone in this experience. Organizations, such as Alzheimer's UK and Australia, have information about the impact of dementia on sexual relationships on their websites, suggesting they are very aware of the importance of the issue for caregivers. It should also be incorporated into psycho-educational programs for caregivers and PwAD.