Out of the shadows

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.   www.alzheimers.org.uk/carers/gay