Out of the shadows

This article is taken from Community Care Apr 3, 2003 and is reproduced here with kind permission by the editor of Community Care. Go to the Community Care website: http://www.communitycare.co.uk

A principal aim of social work with older people is to empower them to make choices, to respect their decisions and to draw on support that reflects their individual backgrounds and preferences. In working with older people with mental health problems, in particular those with dementia, it can be difficult to engage and support people who are very confused.

The practice literature relating to older people now routinely incorporates discussion of issues such as ageism, and there is more widespread recognition of issues around the sexuality of older people, and around the experiences of people from ethnic minorities.

Yet there remains a dearth of practice-based evidence relating to older gay men and lesbians who have mental health problems. There is some literature from North America in this area, but it is apt to raise more questions than it answers.

But North American experience does show clear legal, political and ideological parallels with Britain. The needs of older people with dementia whose lifestyles do not fit a stereotypical norm are often unacknowledged and marginalised. Similarly, British social work often presumes people to be heterosexual.

For younger gay men and lesbians encountering social workers, the situation is often more positive. There is a general recognition that practitioners may support them in negotiating their sexuality, or advocate for those who wish to foster or adopt children. However, there is little of this good practice when it comes to working with different age groups around issues of sexuality.

Two things need to happen if this is to change. First, social work needs to acknowledge that sexual identity and preference are not limited by age and that a person's sexuality is likely to be undiminished by mental health problems such as dementia.

Second, we need to be aware that the onset of dementia may mean that private matters become public, domestic arrangements and personal circumstances become more evident to outsiders and it is more difficult to keep the information given about oneself secure.

Crises arising in dementia can result in a range of people entering an individual's home and personal space to provide intimate care. For older gay men and lesbians who may have lived a lifetime "passing" as heterosexual and whose private lives have remained just that, this must be of particular concern.

Other flashpoints may include admission to residential care, where making decisions and arranging financial matters can involve negotiation with families and partners. For staff in residential care settings there exists good practice guidance acknowledging that people with dementia may have relationships or sexual preferences that challenge staff stereotypes.1

Clearly, while staff should not be presumed insensitive or prejudiced, they may need support and training in dealing with their own emotions, as well as with negative comments which may be directed towards a gay or lesbian resident, or their partner, from visitors or other residents.

It can be all too easy to focus on residential care, where there is more recognition of such issues. But those providing care in the community may also need training. How to refer to same-sex partners may be easily clarified with some service users. More difficult issues may arise as gay men and lesbians providing care at home may be "invisible', as the few case studies of lesbian and gay experiences in dementia have illustrated.2 Similarly, little thought has been given to translating good practice from work with young people and their families to older age groups. This includes:

• Social workers being able to refer people to support groups. The Alzheimer's Society has a gay and lesbian network.3
• Care managers acting as advocates for people by commissioning services which promote anti-oppressive ideals and practice.
• Social workers offering their support to people of whatever age who are "coming out" to family or others.
• Care managers playing their part in educating themselves, other staff members and members of the gay and lesbian communities about legal, financial and accommodation issues, and other information relevant to people with dementia.

Dementia adds another dimension to all these general points. It can be difficult to determine a person's wishes, and support groups may not be nearby. In some areas it is difficult to "shop around" for appropriate dementia services because local provision is limited. The legal position of same-sex partners is unclear, although reform in England may be on the way, both for same-sex relationships and also in respect of decision-making and mental (in)capacity.

Effective service provision and good practice can be found, however, and one way to encourage recognition of the challenges involved in supporting marginalised groups is to share these. There are many possible reasons for the avoidance of issues of sexuality in old age and in mental health services for older people in particular (see panel, above) but until more research is done we will not know the significance of some or all of these.

Current expertise around sexuality and dementia tends to focus on problems or challenging behaviour, ranging from lack of inhibition to sexualised talk and the distressing effects these can have on other service users, carers and staff.

Raising the issue of sexuality may give carers and staff an impression that the gay or lesbian person with dementia has a problem or that their behaviour is difficult to manage. This may result in their sexuality becoming pathologised rather than being an integral part of who they are.

Dementia care looks set to "discover" gay men and lesbians with the condition in the same way as it is "discovering" other marginalised groups - younger people from ethnic minority communities, rural dwellers and so on. This "discovery", however, while raising the profile of marginal groups, risks emphasising differences and problems.

Social work practice therefore needs to consider what it has to offer marginalised groups in dementia care and to think how anti-oppressive values might translate into appropriate services and support. It needs to contribute to the debates on legal reform, not only in respect of children and families but also for older people and those with mental health problems. It needs to bring in its experience of working with younger age groups and influence models of good practice.

Gay and lesbian older people who have dementia are seemingly all but invisible to the practice and research communities. But there is now a cohort of gay men and lesbians approaching their older years who have not been accustomed to living in the shadows.

The North American experience suggests that as this more vociferous population ages there will be a demand not only to be recognised but also to be explicitly heard. The challenge for practitioners and service providers will be whether they are prepared to listen.

Why the neglect of sexual identity?

• Older people are seen as asexual, and assumed to be heterosexual
• Homophobic fear and prejudice continue
• Disabled people are seen as asexual
• Sexual expression among people with mental health problems is seen as symptomatic and pathological

Jill Manthorpe is reader in community care at the University of Hull and Elizabeth Price is a specialist social worker for older people with mental health problems in Kingston upon Hull social services department. E-mail G.manthorpe@hull.ac.uk

References

1 R Ward, "Waiting to be heard - dementia and the gay community", Journal of Dementia Care, May 2000, pp24-25.

2 Counsel and Care, Sex and Relationships: a guide for care homes, London, Counsel and Care, 2002, from 0207 2418555. 3 Alzheimer's Society Gay and Lesbian Carers Network.