Planning ahead as an LGBTQ+ person with dementia

Advice and practical tips for planning ahead as an LGBTQ+ person living with dementia.

Why planning ahead is important for LGBTQ+ people with dementia

It can be hard to think about the future, but it’s important to do it as soon as you feel ready. It can also be reassuring to get things in place early.It’s important that you are supported to make your own decisions wherever possible and for as long as possible.

However, as your dementia progresses, there will come a time when you no longer have the ability (known as ‘mental capacity’) to make certain decisions for yourself.

Thinking about what you want to happen in the future means your wishes will be taken into account when this time comes.

Planning ahead is important for everyone with dementia. As an LGBTQ+ person it can be particularly important for the following reasons:

  • If you don’t say who you want to make decisions for you, it is likely to be left to, or influenced by, health professionals or your family of origin. This may or may not be what you want to happen.
  • If you are trans, the law may not recognise your gender identity unless you go through a formal process to have it recognised.
  • If you don’t make a will, your partner or family of choice may not be entitled to the things you own when you die. They may also not be involved in arrangements after your death, such as your funeral.

By making your wishes clear now, you can avoid these problems in the future. This means that you can live the way you want to and get the care you want and that the people involved in making these decisions will be those you have chosen.

Advocacy services may also be able to support you if you are unable to make your own decisions. There are organisations that may be able to help with this, such as Galop and Stonewall.

Tips for planning ahead as an LGBTQ+ person with dementia

These are legal documents that give someone the authority to make decisions for you, when you can’t make them yourself. If you don’t think your family or a health or social care professional will know what you want, or will contradict you, you can choose someone else to make some of these decisions on your behalf. This can be anyone you choose – for example, your partner or a close friend.

In England and Wales, you can give someone the right to make decisions about your health and welfare, or your property and financial affairs (or both) using a Lasting power of attorney (LPA).

In Northern Ireland, the system is called Enduring power of attorney (EPA) and only applies to property and financial decisions.

If you are trans, you may want to get a Gender Recognition Certificate. This legally recognises the gender you identify as, if you meet certain criteria, and gives you the legal right to be treated as a person of that gender.

It’s important to remember that you don’t need to have a Gender Recognition Certificate to have your gender identity respected by others. You also don’t need to have a Gender Recognition Certificate to be legally protected from discrimination.

An advance decision is a legal document that sets out in advance your decision about medical treatments you don’t want to receive in certain situations. For example, you may decide not to have a blood transfusion or that you don’t want to be resuscitated in certain circumstances.

An advance statement is a tool you can use to record your wishes and preferences for the care you want to receive in the future. It is not legally binding but should be taken into account in decision-making as far as possible.

It’s a good idea for all people with dementia to make one, but there may be some extra things for you to think about. You might want to specify:

  • how you wish to be dressed
  • any prostheses you use
  • the pronoun you want to be referred to by (for example ‘he’, ‘she’ or ‘they’).

You might also want to specify the kind of care home or setting you would feel comfortable in, so this is taken into account when you need it.

Everyone should make a will, but this is especially true after a diagnosis of dementia. Making a will ensures that the people close to you will be able to receive the things you want them to.

This is particularly important if you aren’t close to your family of origin, or have a ‘family of choice’. This is because, if you don’t make a will, your possessions would pass to your family of origin unless you are married or in a civil partnership.

Even if you are, there may be circumstances where your family of origin may benefit – even if it’s against your wishes.

In your will, you can record what sort of funeral you would like to have. You can also do this using a ‘letter of wishes'. A letter of wishes is not legally binding, but it is a good way of setting out what you want to happen when you die.

Planning ahead as a person with dementia

People with dementia can put plans in place now that will be helpful in the future. Read our information on how best to plan ahead.

Read our information
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