Dementia,women and sexuality: How the intersection of ageing,gender and sexuality magnify dementia concerns among lesbian and bisexual women

Abstract

There is a growing appreciation of the significance of socio-cultural context for the experiences of an individual living with dementia. There is, too, an emergent awareness that dementia is a gendered issue, disproportionately affecting women compared with men. However, little attention has been given as yet to the experiences of lesbian and bisexual women living with dementia. This article addresses this gap in knowledge, exploring the significance of the intersection of ageing, gender and sexuality for lesbian and bisexual women with dementia. It suggests that stigma and social marginalisation associated with dementia and with ageing, gender and sexuality intersect to compound the social exclusion of lesbians and bisexual women. This has implications for early diagnosis and treatment. Moreover, community care policy, which is predicated on heterosexist norms fails to take into account older lesbians and bisexual women’s support networks and so is less likely to be attuned to their needs. Residential care provision is perceived by older lesbians and bisexual women as being heteronormative at best and homophobic at worst. Services which do not recognise, validate and support their identities will compound their anxiety, confusion and distress. This may be contrary to Equality and Human Rights legislation and UK social policies. This paper draws upon, and analyses, extracts from a range of authorship, synthesising the material to present novel insights into the significance of gender and sexuality for the experience of dementia and dementia care.

Keywords

dementia ageing gender sexuality lesbian bisexual

Introduction

There is an emergent awareness that dementia is a gendered issue, disproportionately affecting women compared with men (Bamford, 2011). However, so far very little attention has been given to the fact that this includes lesbian and bisexual women. Little is known about how their respective sexualities/sexual identities inform their experiences of dementia, how they are supported in that experience – both informally and formally – and how their histories, identities and preferences are (or are not) validated and reflected in dementia care provision, especially residential care. This paper addresses this gap in knowledge, and considers the social policy and practice implications [Westwood, King, Almack, & Suen (2015)].

Older women are disproportionately affected by dementia primarily because of ageing demographics: women tend to live longer than men, and dementia is age-related (Knapp & Prince, 2007). Individuals aged over 80 living with dementia are twice as likely to be women as men, and individuals reaching 100 who are living with dementia are four times as likely to be women as men (World Health Organisation (WHO), 2007). Given that ‘dementia doesn’t discriminate’ (Newman & Price, 2012, p. 183) lesbian and bisexual women are at the very least at a similar risk of developing dementia as heterosexual-identifying women (Archibald, 2010). The size of the lesbian, gay and bisexual (LGB) population is unclear (Falkingham, Evandrou, & Vlachantoni, 2010) partly due to it being a hidden population (Benoit, Jansson, Millar, & Phillips, 2005) which is also inadequately audited (Yip, 2008). The estimated size of the LGB population is between 7.5% and 10% (Aspinall, 2009) of the total population, with many considering this to be a conservative estimate (Coffman, Coffman, & Ericson, 2013), particularly given the under-recognition of sexual fluidity among individuals, particularly women (Diamond, 2008; Traies, 2012). This means that a possible 10% (or more) of individuals with dementia are likely to be LGB individuals, and this includes those disproportionate numbers of women.

Yet at the same time, the voices of older lesbians and bisexual women are under-represented in dementia research, policy and practice (Barker, 2004; Price, 2008; Averett,Yoon, & Jenkins 2012). Even when dementia is addressed in relation to older LGB individuals, it is usually under a generic ‘LGBT’ (lesbian, gay, bisexual and trans) umbrella, e.g.

Triply marginalized by their LGBT identity, cognitive impairment and advancing years, aging dementia-affected LGBT care partnerships suffer from overlapping areas of stigma, regardless of who in the partnership identifies as LGBT (McGovern, 2014, p. 11).

This all-inclusive approach is problematic for several reasons. Firstly, there is no such thing as an ‘LGBT identity.’ Sexuality/sexual identity and gender identity are two different issues; while some trans individuals may also identify as lesbian, gay or bisexual, others identify as heterosexual (Stryker & Whittle, 2006). Secondly, there is also no such thing as an ‘LGB’ identity or, for that matter, an ‘LGB’ community (Pugh, 2002). Such homogenising discourse, while possibly strategically useful (Bernstein, 2009), masks considerable differences among and between lesbians, gay women and men, bisexual women and men (Cronin, Ward, Pugh, King, & Price, 2011). In particular, it masks gender differences and gender inequalities between and among them. It also obscures other social divisions such as class, ethnicity, religion and disability. For example, the experiences of lesbians and bisexual women with dementia who are from Black, Asian and minority ethnic (BAME) communities (All Party Parliamentary Group (APPG), 2013), will be different from those of White lesbians and bisexual women with dementia, particularly in relation to the accumulative effects of racism (Johl, Patterson, & Pearson, 2014).

Moreover, there is great diversity and difference among lesbians and bisexual women in terms of how they experience, understand and define their sexualities (Traies, 2012). Despite modern day binary constructions of hetero-, homo- and bi-sexualities, sexuality is far more complex, fluid and socially, historically and contextually contingent (Richardson, 2000; Weeks, 2010). Since Kinsey, Pomeroy, and Martin’s (1948, 1953) early work, there has been a growing recognition of the overlap between the hetero- and the homo- and of sexual fluidity in individual lives (Sedgwick, 1990), particularly the lives of women (Diamond, 2008; Kitzinger, 1987). Sexuality itself is a contestable term (Weeks, 2010), in terms of whether it describes a behaviour, an orientation (innate or acquired), a strategic identity (Bernstein, 2009), an actual identity (Calzo, Antonucci, Mays, & Cochran, 2011), with/out a politicised component (Adam, 1995; Power, 1995), a broader ethos (Blasius, 1994), or possible combinations of all. In terms of identifying as a lesbian or a gay woman, located against the backcloth of compulsory heterosexuality (Rich, 1980), for some women a lesbian or gay identity has been honed across a lifetime, for others it has been acknowledged in mid-life or even later life (Traies, 2012). For some women their lesbian identity is located in a broader feminist context, and among these women some have radical feminist lesbian identities (Jeffreys, 2003), including those who, particularly in the 1970s and 1980s, chose a lesbian identity over a heterosexual one as resistance to patriarchy, enacting the ‘rage of oppression’ (Kitzinger, 1987, p. 115). Some women who have led heterosexual lives form later life relationships with other women and choose not to label their sexualities at all (Traies, 2012). In terms of women who identify as bisexual (Dworkin, 2006; Esterberg, 2002), Halperin (2009) has described 13 different ways of understanding bisexuality. According to Barker, Richards, Jones, Bowes-Catton, and Plowman (2012, p. 3) these include people: who see themselves as attracted to ‘both men and women’; who are mostly attracted to one gender but not exclusively; who experience their sexual identities as fluid and changeable over time; who see their attraction as ‘regardless of gender’; who dispute the idea that there are only two genders. So there is a great deal of complexity of meanings and multiple social positions to take into account when considering the experiences of lesbians and bisexual women with dementia.

Intersectionality can help to make sense of these complex inter-connected issues. The concept emerged from Black feminist writers (Collins, 2000; Crenshaw, 1991; Hooks, 1982) who argued that the experiences of Black women could not be understood in terms of racism and sexism alone: Black women experience sexism differently from White women and racism differently from Black men. The work of these early authors has developed into a wide-reaching intersectionality paradigm (Davis, 2007). Intersectionality is ‘useful as a handy catchall phrase that aims to make visible the multiple positioning that constitutes everyday life and the power relations that are central to it’ (Phoenix & Pattynama, 2006, p. 187). It is a starting place for explanations:

Intersectionality refers to the mutually constructed nature of social division and the ways these are experienced, reproduced and resisted in everyday life. A successful intersectional practice thus explores relational and reinforcing inclusions and exclusions, the first steps of which are to identify and name these. (Taylor, 2011, p. 38)

Intersectionality can be problematic because of its complexity (McCall, 2005), differences in its conceptualisation and application (Walby, Armstrong, & Strid, 2012) and concerns about the mobilisation of identity categories (Yuval-Davis, 2006). It can, if over-simplistically applied, imply a neat and ordered interaction between identity combinations, which can mask the ‘intimate interconnections, mutual constitutions and messiness of everyday identifications and lived experiences’ (Taylor, Hines, & Casey, 2011, p. 2). There is a risk of an assumption of equality in different axes of oppression (Erel, Haritaworn, Rodríguez, Gutiérrez, & Klesse, 2008) and distinction between axes that may imply that they operate separately and in a detached way, when in fact they operate together (Cooper, 2004) and ‘mutually reinforce each other’ (Grillo, 1995, p. 27). Even so, when properly applied, intersectionality has much to contribute to engaging simultaneously with the complexities of multiple dimensions of identity and how they work with and through one another to produce inequality. This is so for the intersections of ageing, gender and sexuality (Calasanti & Slevin, 2007) in general, and, more specifically, in relation to dementia (Hulko, 2009), helping to understand ‘how various aspects of social location contribute to how the person with dementia makes sense of his or her experience’ (O’Connor, Phinney, & Hulko, 2010, p. 38).

There is a growing appreciation of the relevance of spatiality to inequality, and that space involves the discursive (i.e. everyday talk) and performative (i.e. everyday behaviours) production of intersecting identities (e.g. ageing, gender and sexuality) of varying spatial power and dominance (Podmore, 2013). Gill Valentine’s (2007) case study with a deaf lesbian, for example, showed how she felt marginalised by disablism when among hearing lesbians and gay men, and by heteronormativity and homophobia when among heterosexual deaf people. Mark Casey (2004) has also shown how the increasing presence of heterosexual women in lesbian and gay commercial spaces, on hen nights for example, serves to reintroduce and reproduce feminine heterosexual norms into spaces within which lesbians previously experienced sanctuary from them. Lesbians have also often found the processes of self-disclosure in health contexts a treacherous terrain to navigate in earlier life, many avoiding screening/treatment and/or choosing not to disclose their sexual identities to medical professionals, particularly during intimate physical examinations. Formal dementia care provision involves an overlapping of these two sites of vulnerability, in that they are sites of heightened physical dependency and also increased exposure to feminised heterosexual norms and normativities (Davidson, DiGiacomo, & McGrath, 2011). After a brief outline of methodology, these issues are explored in relation to: early diagnosis and treatment; community support; and residential care provision.

Method

The data/knowledge for this analysis have been drawn from four main sources. Firstly, the author conducted a systematic literature review for a wider study relating to ageing, gender and sexuality, from an equalities perspective, for a PhD in Law (Westwood, 2014). For the purposes of this paper, the author revisited and honed that review, specifically focussing on issues relating to dementia. Secondly, as part of that PhD, empirical data were also gathered. Sixty older LGB individuals aged 60 and over living in the UK, including 36 lesbians and bisexual women, were recruited via online advertising, marketing via social networks, opportunistic and snowball sampling. They participated in semi-structured interviews on topics relating to ageing, gender and sexuality from an equality perspective. Data were analysed using a staged process of thematic analysis (Braun & Clarke, 2006). One identified thematic stream related to anticipating future care needs and formal care provision (Westwood, forthcoming). This article has drawn upon a sub-set of that data, based on the narratives of women participants and issues associated with dementia in later life. The third source of data comes from Dementia Services Equality Impact Assessment conducted by the author for a local authority in a previous research capacity (Westwood, 2010). The fourth source of knowledge is from insights gained through the author’s professional activities, including managing a Dementia Adviser service, evaluating dementia advocacy services (Kendal, Westwood, & Tyas, 2013) and chairing and facilitating a workshop on LGBT individuals and dementia (Westwood, 2013b). The author has synthesised the data and/or knowledge from these various sources to produce the analysis offered here. This analysis has been clustered into themes relating to: early diagnosis and treatment; community support; and residential care provision.

Early diagnosis and treatment

Early diagnosis and treatment of dementia are predicated upon an individual and/or another person close to them identifying the early signs and symptoms and seeking a formal diagnosis. Many older LGB individuals are wary of engaging with healthcare providers due to concerns about heterosexism (the systematic privileging of heterosexual identities), heteronormativity (the assumption that heterosexual identities and relationship formations are the norm), homophobia and biphobia (prejudice and discrimination based on sexuality/sexual identity) (Ward, Pugh, & Price, 2011). In previous decades, lesbians and bisexual women were treated as mentally ill because of their sexualities. Some lost their jobs (e.g. being expelled from the armed forces) because of their sexualities (Clunis, Freeman, Nystrom, & Fredriksen-Goldsen, 2005). Some were forced to undergo psychiatric ‘cures’ including electric shock treatment. They can be very wary of engaging with healthcare – especially mental health care – institutions in later life (River & Ward, 2012). Their experiences of discrimination are not only historical: they are also based on more recent events (Hunt & Fish, 2008). Guasp, reporting on a YouGov survey of 1000 older LGB people in the UK, stated that,

One in six (17 per cent) [older] lesbian and bisexual women have experienced discrimination, hostility or poor treatment because of their sexual orientation when using GP services – 40 per cent of these incidents occurred within the last five years. (Guasp, 2011, p. 3)

Fish and Archibald gave examples of the types of more recent experiences that can deter lesbians and bisexual women from seeking medical assistance:

‘I was asked when I last had sex – I said my last experience of penetrative sex with a man was nine years ago – she said, never mind, I’m sure you’ll find somebody soon. With an instrument in place and my legs at 10 to 2, I didn’t feel comfortable telling her I was a lesbian!’ (Fish, 2006, p. 139)

‘Recently I visited my GP. She looked at my notes [where it was noted that she was a lesbian from a previous health-screening visit] and was obviously very embarrassed. “I don’t think we need to do a smear” she said. I don’t know whether she thought I was going to have an orgasm…’ (Archibald, 2010, p. 39)

Guasp also reported that many older LGB individuals do not access health and social care support when they need it, in disproportionate numbers compared with heterosexual-identifying individuals. Of disabled LGB people, ‘Almost two in five (37 per cent) did not access health services compared to 28 per cent of disabled heterosexual people’ (Guasp, 2011, p. 25) and in terms of mental health services ‘One in four (23 per cent) did not access mental health services compared to just six per cent of disabled heterosexual people’ (p. 25).

People with dementia who live alone are a significant and often hidden group of people who, through the nature of the dementia symptoms, may not be able to access and/or engage consistently with healthcare services. They may go undiagnosed for a considerable period of time and may only come to the attention of service providers when their dementia has progressed quite far. Often by the time they are diagnosed, sometimes as a result of a hospital admission for other reasons (Anderson & Holmes, 2005) they may no longer be able to live independently, and are at increased risk of direct admission to residential care provision (Gilmour, Gibson, & Campbell, 2003). Older lesbians and bisexual women are more likely than older heterosexual women and men to be disproportionately represented in this high risk group, because they are more often single and live alone (Guasp, 2011; Heaphy, Yip, & Thompson, 2004).

Very often an individual experiencing early signs of dementia will be encouraged and/or supported in seeking medical attention by members of their informal social support network (partner, children, extended family, close friends). Older lesbians and bisexual women are more likely to be single, and to have fractured relationships with extended family members (due to historical familial rejection because of their sexualities) (Guasp, 2011; Heaphy et al., 2004). Many lesbians have strong ‘families of choice’ (Weeks, Heaphy, & Donovan, 2001; Weston, 1991) friendship networks (Roseneil & Budgeon, 2004), particularly with other women. However, those families of choice are less likely to be intergenerational. While some older lesbians, especially those who were previously married (Traies, 2012), may have children, and thus potential access to intergenerational support (Cronin & King, 2013), many will not. The Stonewall study reported that ‘just over half of lesbian and bisexual women have children compared to almost nine in ten heterosexual men and women’ (Guasp, 2011, p. 3). The risk of an intra-generational network is that in older age all the network members may develop care needs at around the same time and be unable to provide each other with reciprocal support.

Heterosexual older people can call upon family for help. My family is my friends, but they are my age and so we will need to ask for outside help for ourselves. Will my sexuality be considered and accepted? Emily, 64, North East (Guasp, 2011, p. 20)

A lack of an intergenerational network can be particular problematic at times of increased health and social care needs:

While ‘families of choice’ do provide social support, a key problem that older LGB people may face is that members of their ‘family of choice’ may be the same age as them and so this network of family/friends is likely to have age related problems at the same time and may not be as effective at providing the social support that may be necessary (Musingarami, 2008, p. 4).

The benefits of an intergenerational network are demonstrated here:

Well I’m still not able to drive since my hip operation, and I’m not doing my own shopping. My sister moved in for about two or three weeks when I first came out of hospital and my daughter comes in a couple of times a week and my friend Ruth drives me to appointments and things. Rene, aged 63 (Westwood, 2014, p. 202)

This extract from Rene, a lesbian who was previously married, highlights the importance of an informal social support network when an individual has acquired additional needs. Rene’s personal community of significant women in her life has helped her with practical tasks (shopping, driving), personal support (staying with her when she had high personal care needs) and emotional support (regular visits) during a time of heightened need. This is an example of not only an informal social support network, but also a flexible informal social support network which can provide extra targeted assistance when needed (Croghan, Moone, & Olson, 2014). Rene’s support network also has an intergenerational component. Women without such an intergenerational component can feel more vulnerable in the face of growing care needs,

I think lesbians who don’t have children (like myself) have a more negative experience because you don’t have any younger people to look out for you and your needs. Susan, 63 (Guasp, 2011, p. 9)

I have no family and very few supportive friends and live alone, so getting older is a real worry. Shirley, 68 (Guasp, 2011, p. 9)

This can become particularly salient when an individual actually develops healthcare needs:

I’m finding hospitals and things like that overwhelming. I’m vulnerable sometimes, not being able to fight my corner… And I wonder who is going to advocate for me when I am in that position? I am going to have to depend on other people. And I want those people I depend on to recognise my difference and acknowledge what that might mean to me. Diana, lesbian aged 69 (Westwood, forthcoming)

Single, childfree, living alone, Diana was previously supporting friends of a similar age in attending hospital appointments themselves. Now she herself needs other people to help her with her own appointments, not only are her close friends (who she has been supporting) not in a position to help her, she is no longer in a position to help them either.

With increasing social acceptance, and legal recognition, of same-gender relationships and parenting, as well as greater access to reproductive technologies, it is likely that this intergenerational picture will change among future cohorts of lesbians and bisexual women. Those who were previously heterosexually married and ‘coming out’ in later life (of whom there are increasing numbers, Traies, 2012) are more likely to have access to children, and thus have an increased chance of intergenerational support from them, than those who were never married (Cronin & King, 2013). In this way older lesbian and bisexual women are differentiated not only compared with older heterosexual women, but also among themselves.

This section has highlighted how age, gender and sexuality and biographical narratives intersect to impact the social context of dementia. Ageing and gender put women at greater risk of dementia than men. Sexuality, and historical and recent discrimination, may lead to lesbians and bisexual women being wary of engaging with health and social care providers. Their varying personal histories, particularly in relation to children, means there are also differences in access to intergenerational support among and between lesbians, bisexual and heterosexual-identifying women with dementia.

Community support

Individuals with dementia are likely to live for longer within their own homes with appropriate support, both informal and formal. In terms of informal support, there is under-recognition of LGB carers among health and social care providers and in carer social policy and activist discourse (Parslow & Hegarty, 2013; Price, 2012; Willis, Ward, & Fish, 2011). Non-normative carers tend to be excluded from carers rights discourse:

Rights for carers require an intelligible model of the family that has no space for non-standard intimacies: polyamory, non-standard parental relationships, independent financial arrangements between partners, and close ties between friends. (Conaghan & Grabham, 2007, p. 20)

This exclusion from policy and rights discourse is often based on heteronormative and heterosexist community care policy and provision (Ward et al., 2011). This ‘sexuality-blind’ (Cronin et al., 2011, p. 421) approach is further nuanced by gender. Lesbians are additionally excluded by ‘the spinster model of care’ (Manthorpe & Price, 2005) which involves the assumption that single women caring for family members are heterosexual. Bisexual women (and men) who are carers are assumed to be heterosexual if in a different-gender partnership and lesbian if in a same-gender relationship (Jones, 2010). Black lesbian and bisexual women will be multiply marginalised by invisibilisation as LGBT and BAME carers (Johl et al., 2014). Moreover, there can be reluctance on the part of healthcare professionals to address issues of sexuality. Hinchliff, Gott, and Galena (2005) in a study of UK GPs, found that almost half reported that they would be uncomfortable discussing sexuality issues with their lesbian and gay patients. If so they would be unlikely to engage with them about non-heterosexual support networks, including their informal carers. Older LGB individuals are sensitive to this issue:

Moreover, more than two in five (43 per cent) [older] lesbian, gay and bisexual people are not confident that medical professionals would identify and consult the right person to make decisions about their care if they were unable to make their wishes known themselves; this increases to 50 per cent for lesbian, gay and bisexual people who don’t have partners. While 38 per cent of heterosexual people feel the same, there is no similar increase for single heterosexual people. (Guasp, 2011, p. 22).

Lesbian and bisexual women who are carers, especially those who have lived concealed lives, may be concerned about ‘outing’ themselves and/or the person with dementia (Brotman, Ryan, & Cormier, 2003). For this reason they may avoid accessing services for the person with dementia and/or themselves. If lesbian and bisexual carers are not recognised as carers, they will also not be provided with access much-needed resources (Grossman, D'Augelli, & Dragowski, 2007; Hash, 2006; Hash & Netting, 2009), increasing carer burden and the risk of carer breakdown (Ward et al., 2005).

Because they are more likely to be single, childfree and living alone, and have intragenerational rather than intergenerational networks, older lesbian and bisexual women are more likely to need formal social support earlier than, and in disproportionate numbers to, heterosexual women (Guasp, 2011; Heaphy et al., 2004). This is particularly if a partner has died (Almack, Seymour, & Bellamy, 2010). However, many older LGB individuals are concerned about community care provision which is perceived as being under-prepared to recognise and meet their needs (Concannon, 2009; Stein & Almack, 2012; Ward et al., 2011).

As an older lesbian I don’t think support services are approachable and would treat me with equality and I still think there is a lot of homophobia. Rebecca, 64 (Guasp, 2011, p. 8)

Sally Knocker gives an example of homophobic care experienced by a lesbian in her own home:

One older disabled lesbian woman describes being given leaflets by religious care workers suggesting that she could be ‘saved’; an experience that has made her feel unsafe and alienated in her own home. (Knocker, 2013, p. 10)

Other research gives examples of concerns that sexuality had impacted care, without it being made explicit:

Ann was living at home had a worker assisting her to shower because her partner Mary was no longer able to help her. Last week the worker asked if they were lesbians. Mary denied that they were because she was concerned that Ann would receive a lesser standard of care. However, one morning the care worker noticed they had both been sleeping in the double bed. The care worker refused to touch Ann in the shower. Mary was concerned because Ann needed a lot of assistance and she couldn’t understand why the care worker wouldn’t help. Ann was confused and distressed and Mary thought about ringing the service provider to make a report, but she didn’t know what she should say. (Birch, 2009, p. 22)

During a conversation with her personal care worker, Lucy mentioned that the woman in a photo next to her bed was her previous partner. She noticed that the care worker began to spend less time making sure her skin was dried properly and provided minimal assistance with dressing. Lucy wondered if this was because of the conversation but she didn’t want to ‘make a fuss.’ (Birch, 2009, p. 22)

The lack of appropriate community support can produce profound disadvantages for LGB individuals with dementia, as in this example, identified in the Equality and Human Rights Commission’s (EHRC, 2011) recent report on domiciliary care for older people:

An older gay man with dementia decided to stop receiving services because of the homophobic reaction of care staff. This had led to him having to move into residential care earlier than necessary as his elderly partner had struggled to cope alone with caring responsibilities. (EHRC, 2011, p. 37)

This example of an increased risk of admission to residential care provision associated with inappropriate community support means that an LGB individual with dementia (and their carers if they have them) then have to engage prematurely with provision which is also perceived as being unable to meet their needs (Price, 2010).

Sexuality intersects with dementia, to impact community support for older lesbians and bisexual women, compared with older heterosexual-identifying women, in several ways: under-recognition and hence less social support for carers; carer avoidance due to experiences of prejudice and discrimination; community care provision not geared up to meet the needs of lesbians and bisexual women with dementia; and associated increased risk of premature admission to residential care provision.

Residential care provision

Recognition

Reduced access to the crucial buffer of intergenerational support (Glaser, Price, Willis, Stuchbury, & Nicholls, 2009) means that older lesbians and bisexual women, including those with dementia, are at increased risk of needing formal social care provision sooner than, and in disproportionate numbers to, older heterosexual-identifying women (Heaphy et al., 2004). Single, childfree, older women are more likely to spend their final years in residential care (Arber & Ginn, 1991; Laing and Buisson, 2011). Older lesbian and bisexual women are more likely to be single and childfree, they are also more likely than heterosexual-identifying women to be present in this population. Yet at the same time, there are major concerns about those spaces, some based on fear, some based on first-hand experience of supporting loved ones (Pugh, 2012).

I live in an incredibly amount of fear about my future. Not just as an older person. But as a gay older person. Institutions, they’re very straight. My god I hope I don’t have to go into a care home, I really do… When I think about it, I find it quite scary. It frightens me that I am just going to be invisible, a nobody, that I am just going to be lost. And what I would want to do is just die. May, aged 64 (Westwood, forthcoming)

May is expressing a common fear among older LGB individuals about a lack of recognition based on heteronormativity in older age housing and care spaces (Phillips & Marks, 2006). Isolation is a closely-linked concern:

Everything is predominantly heterosexual orientated. Sheltered and residential housing is mixed with no provision for those who prefer the company of their own orientation. It’s depressing to think I might end up in a home where I could be isolated because to disclose/talk about my life would lead to ostracisation. Molly, 68 (Guasp, 2011, p. 27)

I don’t want to be sitting in a urine-smelling older person’s home with a lot of straight people singing Second World War songs. I’d rather be sitting with people that I can relate to, watching gay cabaret, or getting some of the LGBT film festival films coming in, you know, that sort of thing. Alice, aged 60 (Westwood, 2014, p. 226)

Both Molly and April are attempting to articulate their concerns about both the lack of choice in sheltered housing and residential care provision, including a lack of gender/sexuality specific provision (Carr & Ross, 2013) and the perceived everyday reproduction of heterosexism in care spaces. Although it could be argued that Alice is deploying ageist stereotypes (‘Second World War songs’) she has worked in care settings herself and is trying to describe how heteronormativity can be culturally reproduced in those care spaces. The importance of recognition and validation is paramount:

What I want is to be recognised as a human being, as a female. I want to be treated as any other and recognise that I happen to love a woman, that I have loved a woman – that is a part of me and that is important to me. (Archibald, 2010, p. 41)

Just as it is important to have someone who speaks English or the same language as you, so you can communicate, I need someone who can “speak lesbian!” Our culture is different and we have different ways of doing things. It is a bit indefinable, but it is really important. Rowena, older lesbian. (Knocker, 2013, p. 11)

These extracts highlight the importance of recognition of sexuality/sexual identity. A lack of recognition can result in marginalisation and isolation (Phillips & Marks, 2006). A lack of recognition of sexuality diversity is particularly significant in older age and dementia care contexts, where ageing sexualities are minimised, sexuality is seen as a behaviour rather than an identity (Ward et al., 2005), and a risky behaviour at that, something to be managed and controlled (Bauer et al., 2013; Bauer, Nay, Tarzia, & Fetherstonhaugh, 2014). In this way, one of the central ways in which lesbians and bisexual women with dementia are differentiated from heterosexual-identifying women with dementia is subject to heightened surveillance and regulation (Cronin et al., 2011), reducing the possibilities for recognition. It can also complicate possibilities for asserting one’s rights in care spaces:

They [older women/women with disabilities] were acutely aware of their lack of power in relation to many of the institutions and individuals on whom they relied for assistance… Fear of getting known as a complainer and of its possible consequences meant that participants who had complaints were reluctant to voice them…. Significantly, participants who felt in some way different expressed particular reluctance about speaking up on their own behalf… a lesbian participant who felt her case manager disapproved of her observed: “I’m already on thin ice. I have to be careful.” (Aronson & Neysmith, 2001, p. 161)

Concealment

Because of fears of discrimination, some lesbians and bisexual women may choose to hide their sexualities, their life histories and/or important relationships in order to feel safe. Such fears can be in relation to staff:

What if they [staff] took a dislike to me? I don’t think many people here would understand it or accept it somehow. Agnes, lesbian, aged 92, living in sheltered accommodation (Westwood, forthcoming)

Because of our sexuality there’s more to be abusive about potentially and because we’re still considered less than, then the idea of stealing from us, or you know being abusive in some other way, is even more attractive. Well who cares about the fag, who cares about the dyke, they don’t need the money, so in that sense we’re more vulnerable. Frances, lesbian, aged 66 (Westwood, 2014, p. 226)

But there are often even greater concerns about the attitudes of fellow-residents, their families and friends:

In the [sheltered] accommodation I live in, nobody knows I am a lesbian. They mustn’t. It is so gossipy and they pick on anybody who is different. It makes me very lonely. (Jean, 66) (Hubbard & Rossington, 1995, p. 69)

Be nice if you could have your partner’s photo up, or have a place where you can be private together, or even, in a public place, hold hands without it being nudge-nudge, wink-wink. Doris, lesbian, aged 69 (Westwood, forthcoming)

Diana spoke about a friend living in sheltered accommodation, who is not open about her sexuality:

… she lives her life privately. But she has to get involved in this sheltered unit, because there are coffee mornings and things like that and, you know, she doesn’t want to be unfriendly. She wants to feel part of that community. She also happens to be Black. And she’s had to listen to things, when people have been reading the newspaper, listen, when there’s some gay issue or something, to things like ‘Oh, if my daughter was like that I’d kill her’. No what does she do with that? If she challenges that she outs herself and then puts herself in a very vulnerable place. Diana, lesbian, aged 69 (Westwood, forthcoming)

So here we can see both how older age care needs adds new dimensions to the relatively risky performance of home for lesbians (Johnston & Valentine, 1995) and how older lesbians ‘continue to live in fear and hide their identities’ in care spaces (Harrison & Riggs, 2006, p. 49). Such fear can compound stress and anxiety associated with dementia:

‘Safety’ and ‘security’ are often interpreted as meaning physical safety or security. However psychological safety is equally important for a person who has experienced prejudice in the past and therefore may anticipate negative reactions in new situations. This might be especially true of a gay person who has dementia or is very dependent on others for aspects of their care, which puts them in a more vulnerable position. (Knocker, 2006, p. 14)

At the same time as many lesbian and bisexual women with dementia may feel they need to conceal their sexualities, dementia itself can complicate concealment. A person may inadvertently be ‘outed by dementia’ (Price, 2010, p. 165), ‘outing’ themselves and/or others, as they forget the ‘rules of the old game’ (Kelly, 2010, p. 545) of concealment, as Price highlights here:

In the residential home in which the person she [lesbian interviewee] and her partner cared for was resident… she was effectively ‘outed’ when they went to visit the person they cared for who would say:

R11(F): ‘Oh, that’s right, how long have you two been together?’ And I’m like oh, God, shut up, you know… And I could see out of the corner of my eye the whole staff turns round! (Price, 2010, p. 166)

Care provision which does not meet, and support the identities and relationships of care users will be contrary to a range of policies and legislation (Commission for Social Care Inspection (CSCI), 2008; Commission on Dignity in Care, 2012). Minimum care standards in the UK require that assessments of people newly admitted to residential care ‘should consider the person’s social interests, hobbies, religious and cultural needs’ and ‘carer and family involvement and other social contacts/relationships’ (Department of Health, 2003, p. 3–4). If a lesbian or bisexual woman with dementia is not recognised in terms of their sexualities or significant relationships, or if they feel the need to conceal them, then this standard will not be met. This is less likely to happen to a heterosexual woman with dementia, whose sexuality (even if only historical) will be assumed by default.

Identity work

Identity work and memory work are the essential components of good care for people with dementia (Melunsky et al., 2013) including lesbian and bisexual women:

Older LGB people need to feel safe to share their identity and life history in assessment and support planning, particularly for dementia… Feeling safe and able to disclose sexual identity and life history is vital for person-centred planning for support to live at home or in a residential setting… For older LGB people living with dementia, this is especially crucial, particularly if they are to benefit from life history assessments, reminiscence therapy or memory boxes (Carr & Ross, 2013, p. 3, 6)

Yet being in a minority, lack of recognition and/or concealment can undermine the possibilities for such memory work:

Being in care or being in an old people’s home and being the only gay woman – that is quite a daunting prospect that is – because one of the things that is important really isn’t it – is remembering things and talking about – do you remember when? – and that is part of how our memories work isn’t it? Gail, older lesbian (Pugh, 2012, p. 45)

If a lesbian or bisexual woman feels unable to share her true history among staff (which may include lesbian or gay sexuality workers who are themselves concealing, Manthorpe & Price, 2005) and/or other service users, this will compound her sense of loneliness and isolation (Concannon, 2009; Langley, 2001). A lack of recognition may also mean a lack of professional support in helping a lesbian or bisexual woman maintain links with her personal communities (Ward et al., 2012) which will again further restrict opportunities for memory work:

If I’m in a sheltered unit or an old people’s home, I want to be able to read and get information and I want to be able to connect with my community. I want to go to my [older lesbian group] still. Now how am I going to get to [older lesbian group] if my mobility is compromised? Is somebody going to get me a special bus? If I’m lucky I’ll have friends who’ll take me there once a month. But what if I have Alzheimer’s? Will it be assumed I’m heterosexual and I don’t need my friends to come and talk to me about my past? Diana, ‘lesbian’ aged 69 (Westwood, forthcoming)

Communities of friends hold particular significance for lesbians, especially those who have identified as lesbian for most of their lives (Richard & Hamilton-Brown, 2006), as a way of ‘resisting both the erasure and/or discipline of the heteronormative gaze’ (Gorman-Murray, 2013, p. 103). Failure to recognise important social connections for lesbian and bisexual women will again be a failure to meet minimum care standards:

Being lesbian, gay or bisexual is about more than defining your sex life. It shapes the way you have experienced life, your interests, likes, dislikes, humour, friendships and attitudes. It is therefore part of assessing people’s ‘social interests’ and ‘cultural needs’ as well as their ‘social contacts/relationships’. A care plan that neglects to include this huge part of a person’s individuality is clearly incomplete and is likely to fall short of meeting that person’s needs. (Knocker, 2006, p. 14)

At its most extreme, a lack of recognition and absence of informal social support can, if there is also an absence of prior legal arrangements for the recognition of significant others (Westwood, 2013a), lead to same-gender partners being separated:

Jane lives in a care home in the Calder Valley and has dementia. There was no discussion of sexuality at the admission stage. Jane kept asking for people. They were all women’s names, Jane called one name repeatedly. When asked by staff, Jane’s next of kin, a much younger brother, explained it this way: “When I was growing up I had a lot of aunties.” The oft repeated name is Jane’s partner. “She has her own problems and lives in another care home nearby.”… Two separate families decided that they should live in two separate care homes. Care Home Manager Interview 2012 (Walker, Hughes, Ives, & Jardine, 2013, p. 25)

The fear of being separated from a partner (especially prior to the Civil Partnership Act 2004 and the Marriage (Same Sex Couples) Act 2013, in England and Wales, and the Marriage and Civil Partnership (Scotland) Act 2014) is profound, particularly among ‘older older’ lesbians who may have lived extremely concealed lives (Traies, 2009).

Identity work also operates at an embodied level, in terms of dress and appearance (Twigg, 2007). Both are significant in the context of dementia and personhood (Twigg, 2010; Twigg & Buse, 2013). Some older lesbians who reject feminine norms for appearance may be concerned that they may be ‘dressed’ as heterosexual women in long-term care provision:

Elizabeth was aged in her eighties when she was placed in a secure nursing home, where the staff presumed that she would wear dresses. When her ex-partner visited she was horrified as Elizabeth had always worn long pants. However she did not know how to approach the staff about this issue. (Birch, 2009, p. 22)

One woman gives an example of a lesbian friend with dementia she knew who had always worn trousers being put in a crimplene dress and given a standard ‘old woman’s perm’. (Knocker, 2013, p. 12)

Services which do not recognise, validate and support the identities and lived experience of lesbian and bisexual women with dementia will compound their anxiety, confusion and distress, particularly as their dementia-related symptoms progress. In this way, sexuality adds a further dimension to issues of identity and memory in dementia care contexts.

Lack of choice

The lack of alternative forms of residential care provision is particularly problematic for those older lesbians and/or bisexual women with dementia who do not wish to receive care alongside men. Jane Traies recently conducted a survey of over 400 older lesbians in the UK and reported that three-quarters of her respondents expressed a strong preference for ‘lesbian-only’ or ‘women-only’ care and accommodation (Traies, 2012). This echoes other research, e.g. Quam and Whitford (1992), who reported that that 80% of older lesbians wished to live in a lesbian-only community; Kehoe (1988), who reported that two-thirds of her older lesbian participants expressed a preference for an exclusively lesbian environment (Kehoe, 1988); and Goldberg, Sickler, and Dibble’s (2005) more recent meta-analysis reiterated Kehoe’s findings. Reasons included: wanting solidarity and support; wanting a community of shared histories and common understandings; wanting not to be in a minority among heterosexual individuals; concerns about potential (hetero-)sexual harassment; a wish to receive care, especially personal care, only from women. It should be noted that many older heterosexual-identifying women might also want women-only care, although no one has asked them as yet.

For lesbians whose psychological safety is embedded in lives constructed separately from men (Traies, 2009), there is no dementia provision where they can spend their final years living separately from men. Class and socioeconomic status come into play here (Heaphy, 2009): those individuals with greater purchasing power may have increased choice of dementia services – ‘I will probably have access to more housing options than people who have less money than I do’ (Frances, aged 66, Westwood, 2014, p. 276). But greater purchasing power has limits: even those lesbians and bisexual women with sufficient material resources cannot obtain women-only or lesbian-only provision for individuals with high dependency needs if it does not exist. Moreover, dementia itself may undermine the ability to exercise such choices. As Alex, who still works in social care, observed:

In ten years’ time the people entering care homes are going to be so enfeebled, so dependent, many of them with dementia, that the element of choice, and the ability to exercise that choice is almost going to be non-existent. Alex, aged 60 (Westwood, 2014, p. 245)

A lack of choice of provision could have both legal and social policy implications. It could be argued that a failure by the state to ensure a range of provision is available, is discriminatory under the UK Equality Act 2010 and does not meet its Public Sector Equality Duty (Carr & Ross, 2013, p. 6). It could also be argued to be in breach of the European Convention on Human Rights in relation to ‘Right to respect for private and family life’, ‘Right to respect for home’ (Article 8) and ‘Right to freedom of thought, conscience and religion’ (Article 9 ECHR). This lack of choice disproportionately affects lesbian and bisexual women whose sexualities are under-recognised in mainstream provision, and who are more likely to want gender and sexuality specialist provision.

Lesbian and bisexual women with dementia are differently affected in relation to residential dementia provision compared with heterosexual women with dementia in terms of: less recognition; increased need for concealment; reduced opportunities for identity and memory work; and a lack of choice in provision. In this way sexuality adds further dimensions to the gendering of residential care for people (predominantly women) with dementia.

Conclusion

This article offers new insights in the growing recognition of the importance of social diversity and of personhood in relation to dementia, by demonstrating the significance of ageing, gender and sexuality/sexual identity for dementia. In doing so it complicates discourse about dementia and gender, and dementia and women, by showing how lesbian, bisexual and heterosexual women are differently impacted by dementia and dementia services. It shows how heteronormative and heterosexist community and residential care provision can compound the difficulties experienced by lesbian and bisexual women living with dementia, in ways which do not affect heterosexual-identifying women with dementia. It also highlights the paradox that those women most likely to require community and residential care provision for individuals with dementia – lesbians and bisexual women – are least likely to have their identities recognised and supported. Moreover, those women who do not want to share sheltered housing and/or residential care provision with men, and so who will be most disadvantaged by the lack of alterative provision are, again, lesbian and bisexual women.

‘Services and support which do not enable older people to hold on to their unique sense of self and their humanity are therefore dehumanising, not just disempowering’ (Bowers, 2009, p. 45). In this way the cumulative disadvantages of minority stress (DiPlacido, 1998) are iterated for lesbian and bisexual women living with dementia. Providing truly personalised services for all women with dementia – including lesbians and bisexual women – must be based on an understanding how age, gender and sexuality intersect to shape their experiences.

Footnotes

Acknowledgement

Thanks to Rosie Harding Ruth Fletcher and the anonymous reviewer for their helpful input to earlier versions of this paper.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Sue Westwood is a feminist socio-legal scholar, Sue Westwood’s research interests focus on the intersection of ageing, gender and sexuality in regulatory contexts. Sue has published several papers and book chapters and has a monograph and three co-edited volumes currently under construction, including (with E. Peel and R. Harding) Ageing & sexualities: Interdisciplinary perspectives (Ashgate) and (with E. Price) Lesbian, gay, bisexual and transgender (LGBT) individuals living with dementia: Theoretical, practical and rights-based perspectives (Routledge).

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