Helping an LGBTQ+ person with dementia with decisions about care

To record the person’s wishes about treatments they don’t want to receive, they can create an advance decision to refuse treatment in England and Wales, or an advance directive in Northern Ireland.

Health professionals in England and Wales must follow the person’s wishes if the person is unable to make a decision for themselves at the time. These wishes should also be followed in Northern Ireland. To make sure this happens, it’s important that the advance decision or directive is recorded in writing and includes certain information. 

The person with dementia may have other important wishes. For example, they might want to specify:

• how they wish to dress
• the pronouns they would like people to refer to them by (for example, ‘he’, ‘she’ or ‘they’)
• any prosthetics.

It’s a good idea to record the person’s wishes. An advance statement in England and Wales, or living will in Northern Ireland, is a document that lists a person’s general wishes and preferences for the future.

Advance statements and living wills are not legally binding, but they should be taken into account if future decisions are made on a person’s behalf. If a decision is made that goes against an advance statement or living will, there must be a very good reason for this.

A person who is trans can apply to the government’s Gender Recognition Panel for a Gender Recognition Certificate if they meet certain criteria. This gives the person the right to be treated legally as someone of their own gender.

Not all trans people will have a Gender Recognition certificate, and there are lots of reasons why a person might not have applied for one. It’s important to remember that a trans person does not need to have a Gender Recognition Certificate to have their gender identity respected by others.

They also don’t have to have a Gender Recognition Certificate to be legally protected from discrimination.

In some settings, care professionals may not have enough knowledge or awareness to support the needs of LGBTQ+ people with dementia. They may not realise that LGBTQ+ people access their services or understand that the person’s sexual or gender identity can have a big impact on their needs.

For example, reminiscence activities may focus on people’s family, not realising that some LGBTQ+ people may not be in touch with their family of origin or may not have children. In some cases, you may have to inform professionals and make them aware of these issues.

You could suggest that they read Age UK’s ‘Safe to be me’, a guide for health and social care workers supporting LGBTQ+ people.

Some care professionals may feel that they are not discriminating because they treat everyone the same. However, many LGBTQ+ people want their unique history and identity recognised and respected, and their individual needs met.

It’s important to find a setting where the person feels that they are understood, and their preferences and wishes are respected. This should also take into account the person’s cultural, spiritual or religious beliefs or practices.

It can be harder to find LGBTQ+ aware services. Try to think ahead and look around in advance for what is available. Consortium has a directory that might be useful. It includes LGBTQ+ services and support groups for older people. You might want to check if there is anything in your area.

You may also want to contact a local LGBTQ+ organisation in your area. They may know about any groups or services that are available locally for LGBTQ+ people with dementia.

Many people with dementia remain living at home independently when they have the right level of support in place. However, the time may come when the person needs to move into a care home.

If the person is moving into a care home, they may be worried about staff not supporting them or meeting their needs. They may also be worried about experiencing prejudice, discrimination or hostility from other residents. They might feel like their home is a ‘safe space’ where they are free to express their identity and may be worried about leaving it.

The person with dementia, with your support, may find it helpful to talk to care home staff about their sexual orientation or gender identity as early as possible.

This can help them find out whether staff have any negative attitudes towards LGBTQ+ people, and whether they are aware of the unique challenges an LGBTQ+ person with dementia may face.

If the person is trans but doesn’t want to share this with everyone in the care home, they may want you to tell one (or a few) of the care home staff.

It is against the law for care home staff to share the person’s gender identity without the person’s consent. It’s important to find a care home where the person can feel safe and accepted.

For advice on housing options for LGBTQ+ people, it may be useful to contact Stonewall Housing.

If you or the person with dementia feel unfairly treated by an organisation because of your or their sexual orientation or gender identity, ask for their complaints procedure.

If you follow this procedure and still don’t feel your complaint has been properly addressed, you can take the complaint further. The organisation’s complaints procedure should explain what to do next. If not, you can contact the relevant Ombudsman to make a complaint. Which one you talk to will depend on what the complaint is about and where you live. For more information see LGBTQ+ dementia care - Useful organisations.

If you need advice or support when making a complaint, there are lots of organisations that can help and support you through the process:

• If you are in England, you can contact your local Patient Advice and Liaison Service (PALS).
• For Wales, contact Community Health Councils.
• For Northern Ireland, contact Patient and Client Council.

You can also get advice and support from the Equality and Human Rights Commission in England and Wales, or the Equality Commission for Northern Ireland.

In some cases, if you feel you need more help with the process, you might need to talk to a solicitor to get legal advice.