Planning ahead when you're living with dementia in Northern Ireland

Read about the different ways that you can plan for your future when you're living with dementia in Northern Ireland.

Planning ahead means you’ll get to decide how your affairs will be managed in the future, and who will do this. As well as giving you peace of mind, this can make things easier for those close to you.

This can include appointing people to make decisions for you when you can no longer make them yourself, making a will, and making your wishes for your future care clear. 

Ways of planning ahead

Enduring power of attorney

It can be a good idea to think about how your finances and other affairs will be managed if you can no longer manage them yourself. Creating an Enduring power of attorney (EPA) is a way to do this.

It means you can give the legal power to one or more people, the ‘attorneys’, to manage your finances and property when you’re no longer able to. You can choose whether you want your attorneys to act jointly or individually. 

It can be reassuring to know that you have given power to someone you trust to do this for you. It can also make things easier for those close to you in the future. 

An EPA can come into effect immediately. Your attorney(s) can start managing your affairs on your behalf right away, even if you’re still able to do that yourself. You don’t have to choose this option, but it can be a way of giving yourself some extra support.

Alternatively, you can continue to manage things yourself while you can and then later, if you become unable to, your attorney(s) can take over. 

Trusts

If you have assets such as property or savings, you may be able to set up a trust. This is a legal arrangement that allows someone else to manage these assets for you, in line with your wishes. It will make sure your money is used how you want it to be. The trust could also include money used to pay for your care or where you live in the future.

There are several types of trust and different ways to arrange them. Setting up a trust can be complicated and expensive because there are specific rules attached to them. It isn’t something everyone can do, so if you’re thinking of setting one up you should talk to a solicitor. For more information see Where can I get financial and legal advice?

Making a will

If you make an Enduring power of attorney, it will automatically come to an end when you die. If you want to plan what will happen to the things you own after you die, you need to make a will. If you already have a will, you may want to update it. For example, there may have been a change in your property, finances or family circumstances. 

A will is a legal document that says who should receive the things you own when you die – such as your property, savings or valuables. It’s a good idea to get help from a solicitor with this – see Where can I get financial and legal advice?

If you don’t have a will then some legal rules – the ‘intestacy rules’ – will decide what will happen to the things you own after you die. This may not be what you want, so it’s a good idea to make a will – to make sure your wishes are followed.

If you own anything jointly with someone else (for example, a property or a bank account), the whole of it will often automatically belong to the other person after you die. This will happen whatever your will or the intestacy rules say. You should get advice from a solicitor about what to do if you don’t want that to happen.

You need to have the mental capacity to make or change a will. No one – including an attorney – can do this on your behalf. In some circumstances the High Court can make what is called a ‘statutory will’ for you if you lack mental capacity to make a will yourself. However, this is rare. Speak to a solicitor for more information about this. 

Advance planning for your care and treatment

It isn’t possible to make an Enduring power of attorney that covers decisions about your care and treatment. However, there are some other things you can do to make your wishes clear in relation to your future care.

Advance decisions

An advance decision lets you state what forms of medical treatment you would not like to receive, in case you become unable to decide for yourself in the future. (It’s sometimes known as a ‘living will’ or ‘advance directive’.)  

An advance decision can be reassuring if you have particular views about  your treatment. You may not want to rely entirely on medical professionals making treatment decisions in your best interests if you’re unable to make them yourself. 

Whether or not medical professionals follow a person’s wishes on an advance decision depends on the circumstances. To try to make an advance decision effective, you should ensure that: 

  • It expresses your wishes as clearly as possible 
  • you understand what you’re doing when it is made – ideally this would be confirmed by a witness. 
  • It’s best to discuss your advance decision with your GP before drafting it. They can help to explain certain treatments, as well as the advantages and disadvantages of certain choices.

You should then put your advance decision in writing. You should give copies to: 

  • people involved in your care and treatment (such as your GP or hospital team) 
  • a close relative or friend 
  • anyone to whom you have given Enduring power of attorney. 

Advance statements

An advance statement is not as strong legally as an advance decision is.  But it’s a way of recording any wishes and preferences you have for your care in the future. This could include your favourite foods, hobbies and interests, music you like or your preferences about where you’d like to live in the future. 

An advance statement also gives you a chance to cover more difficult topics. For example, you can state whether you’d prefer to die at home or in a hospital.

This can be really helpful for those close to you and anyone caring for you because it tells them about your wishes. Anyone making a decision for you in the future should consider any advance statement you have made. 

If you decide to complete an advance statement, discuss it with family members and friends who you trust. You should also tell all the people involved in your care where the statement is kept. 

For more information and for a template advance statement see our booklet on Planning ahead.

What happens if you haven’t planned ahead? 

There are various processes that may be followed if you become unable to manage your affairs but haven’t put plans in place. 

Controllership

If you haven’t made an EPA and you become unable to manage your financial affairs, the Office of Care and Protection (OCP) may need to appoint a ‘controller’. This is someone who then has the power to manage your affairs on your behalf. 

A close relative usually acts as a controller, but it could also be a friend or a professional such as a solicitor or accountant. They will be appointed by the OCP so, unlike with an EPA, they may not be someone you would have chosen yourself. If nobody suitable can be found, the OCP can appoint the Official Solicitor to act as a controller. 

It’s not always necessary for a controller to be appointed. If managing your financial affairs only involves managing your income from benefits, it may be done through appointeeship. 

Appointeeship

You may eventually become unable to claim benefits or manage your income from benefits. If this happens, someone else may need to do these things on your behalf. This can be arranged by someone becoming an ‘appointee’. Only one person can be an appointee at any one time. 

If you’ve appointed someone as your attorney, or the OCP has appointed a controller in relation to your financial affairs, that person can manage your benefits. There is no need for an appointee as well. But an appointee can be useful if you don’t have any property or other assets and your only income is from benefits. 

The person prepared to act on your behalf should contact the Department for Communities (DfC) – see Other resources. They will need to fill out a form and will also be interviewed.

The appointee can be a friend or family member. They: 

  • must claim any benefits you are entitled to 
  • must report any change in your circumstances that may affect your benefit entitlement 
  • must spend the benefit in your best interests – although it is normally paid to them, the benefit is not theirs to spend on themselves 
  • are responsible for any overpayments. 

The Department for Communities will check the appointment regularly to make sure it’s still working for you. 

An appointee can resign if they don’t want to continue in the role. The DfC can also end the appointeeship if it has evidence that the appointee is not acting in your best interests. 

Decisions about your care and treatment 

Unless you’ve made a valid advance decision, decisions about your care and treatment will be made by the professionals looking after you (such as doctors or social workers).

Professionals should do this by looking at what is in your best interests. They should take account of anything you have said in any advance statement you have made. They should also involve those close to you as far as possible. 

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