6. Planning ahead
It can be hard to think about the future, but it is important to do it as early as you feel ready. It can also be reassuring to get things in place early.
As your dementia progresses, there will come a time when you no longer have the ability to make decisions for yourself (known as ‘mental capacity’). 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 LGBT 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 biological family. 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 may not be entitled to the things you would want them to be when you die. They may also not be involved in arrangements after your death, such as your funeral.
By filling in some forms now to make your wishes clear, you can avoid these problems in the future. This means that you will get the care you want, and the people you want to be involved in making decisions will be. For more general information and guidance on planning ahead see booklet 1510, Planning ahead.
Planning ahead: practical tips
- Lasting power of attorney (LPA) or Enduring power of attorney (EPA) – 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. In Northern Ireland, the system is called Enduring power of attorney and only applies to property and financial decisions.
- Gender recognition certificate – if you are trans, you may want to get a Gender recognition certificate. This legally recognises your change of gender, if you meet certain criteria, and gives you the right to be treated legally as a person of your gender. For more information on the current process for this see the GOV.UK website.
- Advance statement (or ‘living will’) – this is a tool you can use to record your wishes and preferences for future care. It is different from an advance decision, which is used to refuse treatment you don’t want. An advance statement is about the care you want to receive. It is not legally binding but should be taken into account in decision-making as far as possible. It is a good idea for all people with dementia to make one, but there may be some extra things for you to think about. If you are trans, 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’).
- You might also want to specify the kind of care home or care setting you would feel comfortable in, so this is taken into account when you need it.
- Make a will – everyone should make a will, but this is especially true after a diagnosis of dementia. Making a will ensures that those people who are 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, or have a ‘family of choice’. This is because, if you don’t make a will, your possessions would pass to your biological family unless you are married or in a civil partnership. Even if you are, there may be circumstances where your biological family may benefit – even if it is 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.