Understanding and respecting lesbian and gay people

Lesbian, gay, bisexual and transgender people with dementia, and their carers, partners and relatives, face many challenges - not only those experienced by people not in same sex relationships, but possibly many more. This factsheet will help you to better understand some of the issues that lesbian and gay people with dementia may face and looks at how you can support them.

A carer who has looked after his partner with dementia at home for eight years is excluded from the funeral by the rest of the family. The Will leaving him the house they have shared for 40 years is being contested by the family.

A carer visits her partner in a residential home. She finds members of staff unwelcoming and rude. They imply that she has no right to be closely involved in decisions about her partner's care.

Do you respond with concern and compassion to these situations? Do you feel genuinely sympathetic when you know that the main reason for these carers being unable to express their relationship is that they are couples of the same sex?

Most professionals assume that their services are open to lesbian and gay people. They tend to take the view that the issue is 'private and no one else's business'. They ask: 'Is it relevant for us to know?'

Your first reaction may be to agree with this attitude. Some lesbian and gay people themselves lead an extremely private existence but this is often for fear of hostility and prejudice.

Stop and think for a moment. For many people, their family is an essential part of their life. In most social settings, people talk about their husband, wife or children in the natural flow of conversation. Many gay people are denied this freedom. How would you feel at a carers' group if you could not mention your spouse's name, or say what you have been doing recently in case a 'we' slips into the conversation? If you 'confessed' to being married in such a group, you wouldn't expect people to react with shock, surprise or rudeness. Yet many lesbian and gay people have to deal with these sorts of reactions.

What can professionals do to make a difference?

• Review the publicity material and policy documents produced by your group or organisation. Make sure that the language used is inclusive of carers who are not married and acknowledges that not all carers are heterosexual and/or blood relatives of the person with dementia. If pictures or photographs are used, think about including some images of people of the same sex.
• Don't assume that just because someone has never married they have never had an intimate partnership. Of course, this doesn't automatically mean that they are lesbian or gay either but be aware that a person may have had important romantic and sexual relationships that become invisible when they get older simply because they have not been legitimised by a marriage.
• If someone is living with someone of the same sex and you think it may be a gay relationship, try to offer positive messages in subtle ways. For example: 'You obviously mean a lot to each other'; 'Have you lived together a long time?' These kinds of questions do not compel someone to 'come out' if they don't want to, but they do give an opening, indicating that you are happy to talk about the relationship.
• If the person with dementia or their carer feels able to come out, your first and immediate reaction will be very significant. If you feel embarrassed or surprised you might change the subject or avoid direct acknowledgement of what the person has shared with you. This might stop the person feeling comfortable with you and opening up further. Find ways to give reassurance that you are not prejudiced - for example, 'Thank you for telling me. It must be hard having different professionals coming in to your house, not knowing what their attitudes are,' or, 'Let me know if there are any particular things we need to consider about services for you, which might make you feel more comfortable.'
• Take your cue from the person as to the kind of language you use. Not all lesbian or gay people feel comfortable with the relatively modern words 'lesbian' or 'gay'. They may refer to their 'friend' or 'companion' rather than to a 'lover' or 'partner'. Check with them what terminology they prefer and use those terms.
• If the person with dementia is lesbian or gay, they may have difficulties with the kind of support offered. The people they talk about, the memories that are important, their interests and humour will have been affected by their experience as a lesbian or gay person, but they may be unable to express this. It might be particularly important for the person to have contact with other gay people to support their identity and confidence at a time of loss and change.
  

In some situations, a person's preferred sexuality may be more evident because of reduced inhibition sometimes caused by their dementia. This makes it all the more important for them to be in a non-judgmental environment. It is as important to ensure that care workers supporting the person are not homophobic (displaying fear or contempt for gay people) or heterosexist (presuming everyone is heterosexual) as it would be to ensure that they are not racist or sexist.

Consider legal and financial issues carefully. Be aware that, unless a lesbian or gay partnership is registered (a civil partnership), there is little legal protection for gay and lesbian people. It is, therefore important to plan accordingly.

• The term 'next of kin' has a limited meaning, related to the disposal of property to blood relations in situations where someone dies without making a Will. The Mental Health Act 2007 gives equal recognition to same sex partners, as long as they are in a registered civil partnership.
• Encourage the person to set up a lasting power of attorney (LPA) as soon as possible. A personal welfare LPA allows the person/s you have chosen as your attorney to make decisions on your behalf about your personal welfare, eg where you live. A property and affairs LPA enables someone you trust (the attorney) to make decisions on your behalf about your property and affairs at a time when you are no longer able or lack the mental capacity to take those decisions yourself.
• Alert the carer to the importance of both partners having made a proper Will to ensure that inheritance of property and other assets are clearly indicated. This will be especially important if members of the family of the person with dementia are hostile to the couple and could possibly contest the Will.
  

If you are lesbian or gay yourself, you will need to consider whether it is appropriate to 'come out' to your client or their carer. Professional boundaries have traditionally dictated that offering personal information is not good practice. However, in some situations, and where you are confident and open about your own sexuality in the workplace, it might be entirely appropriate to reassure your client that, as a gay person, you might be able to offer empathy and support at a difficult time.

If you are heterosexual and have had little contact with lesbian or gay people, consider the extent to which you need to equip yourself with more information. You may need to carry out further informal research into specialist sources of support for a lesbian or gay person with dementia or their carer. You could contact a local lesbian or gay organisation or telephone someone from the Alzheimer's Society LGBT Support Group to find out more about what is available. If the carer would like to talk to someone over the phone, please recommend the Society's confidential service, which is run by lesbian and gay volunteers with a knowledge of dementia and understanding of the particular issues involved (see 'Useful organisations' for details).

Most important of all, avoid the excuse that it is 'nobody's business'. Be aware that, in your professional career, you will almost certainly have contact with several lesbian or gay clients or carers looking to you for support and understanding.

Your local Alzheimer's Society branch will always be willing to talk to you and offer advice and information to support your needs.

For more information, Dementia Catalogue, our specialist dementia information resource, is available on the website at
alzheimers.org.uk/dementiacatalogue.

Useful organisations

Alzheimer's Society LGBT Support Group

Devon House
58 St Katharine's Way
London E1W 1JX
T 0845 3000 336
E lgbtsupport@alzheimers.org.uk
W alzheimers.org.uk/lgbtsupport

Telephone support service for LGBT people with dementia and LGBT people who are current, or former, carers of people with dementia.

Stonewall

Tower Building
York Road
London SE1 7NX
T 0800 050 2020 (Info Line)
020 7633 0759 (Minicom)
E info@stonewall.org.uk
W www.stonewall.org

Stonewall works to achieve equality and justice for lesbians, gay men and bisexual people.

Factsheet 480

Last updated: June 2009
Last reviewed: June 2009

Reviewed by: Dr Elizabeth Price, Alzheimer's Society LGBT Support Group Steering Committee