Planning for the Future

Planning for the future can feel overwhelming at any time but when you are dealing with your diagnosis of dementia, it may feel like the last thing you want to do. Planning for the future is important so we can prepare for and influence events that may happen.

Planning for the future also includes talking with our family and doctors about our wishes and preferences should we become very unwell and unable to communicate.

Planning for the future is especially important when you have a diagnosis of dementia. Doing this at an early stage means there is a record of your preferences and wishes.

Planning your Financial Affairs

Organise your financial details, such as:

  • Writing a list with details of your bank accounts, savings, income, pension, trusts, properties, assets, loans and debts. Make sure to keep the list in a safe place.
  • Tell at least one person you trust where the list is; this could be a family member, your solicitor or both.
  • Take steps to ensure any savings or income will be accessible to pay for your future needs. This may include setting up an enduring power of attorney (EPA)
  • If you have a joint bank account, ask the bank or credit union about changes you may need to make in light of your diagnosis.

Manage your money day-to-day by:

  • If you find it hard to manage cash, limit the amount you carry daily.
  • Organise your wallet or purse; for example, clear out unnecessary cards or paper.
  • If you find it difficult to remember the PIN for your bank cards, talk to your bank about alternatives.
  • Set up direct debits and standing orders to pay your bills.
  • Make sure that household bills are not solely in your name so that someone (perhaps a family member) can help pay bills or address issues that may arise.
  • It is a good idea to have an up-to-date form of identification, such as a passport.

Planning your legal affairs

Thinking about your legal affairs is a vital step once a diagnosis of dementia is confirmed.

While it may be the last thing you may want to do, it is imperative to take time to consider your legal affairs and the implications of a diagnosis of dementia.

A diagnosis of dementia does not automatically mean a person cannot make legal decisions. In the early stages, it may still be possible to make or amend a will, draw up an Enduring Power of Attorney and make other legal decisions.

It's good to have things sorted out; I feel better to have it done and know that it is done.

Person with dementia and member of the Irish Dementia Working Group

This is the time for you to review your affairs and make decisions affecting your future. As the condition progresses, this will not be possible at some point. If you are unsure whether you can make legal decisions, talk to your doctor and solicitor.

We were told to look into our legal and financial affairs, we put it on the longer finger and then (my wife)'s dementia progressed and she wasn't able to participate. It was much more difficult. My advice is do this as early as you can, for both of you.

Anonymous, Kildare.

Assisted Decision-Making (Capacity) Act 2015

The Assisted Decision-Making (Capacity) Act 2015,  is a new law that commenced on the 26th April 2023. It allows you to make legal agreements on how you can be supported to make decisions about your welfare, property, and affairs.

What does the new Act do?

The Act established new decision-making  agreements to support you to make your own decisions. There are 3 levels of support.

The Decision Support Service  (DSS) is a new service that was set up under the new decision making act. It is an information service and it is where the decision support agreements are registered and checked.


Decision Making Assistance agreement 

  • Minimum level of support.
  • Allows you to appoint someone to assist you in making your decisions. They are called a decision making assistant.
  • The agreement must be in writing and must be signed by you and your decision making assistant. It must be witnessed by an approved person (e.g. a guard/ medical professional)
  • The agreement can last for up to 3 years and then a new agreement must be made.
  • You must notify the DSS for the agreement to be legal. It is €15 to do this.
  • You can apply for legal aid to have the fees waived.
  • There are a number of steps involved, and there are forms to be filled in. These are available on the DSS website, or you can contact them and they will post the forms out to you.
  • If you do this online, you need a myGovID . Alternatively you can verify your identity by sending in relevant documents to the DSS by post.
  • You do not need a solicitor.
  • Once the forms are filled in and signed , you have 5 weeks to send the agreement to the DSS 
  • To go from a decision making assistance agreement to a co-decision-making agreement, you will have to create a new agreement.

Co-Decision-making agreement 

  • Middle tier of support
  • Allows you to appoint someone you know and trust to make certain decisions jointly with you.
  • There are a number of steps involved.
  • If you want to apply online, you need a myGovID. Alternatively you can verify your identity by sending in relevant documents to the DSS by post.
  • You and you co-decision maker must sign the agreement in front of two witnesses.
  • You also need a statement from a medical professional saying that you have capacity to make this agreement.
  • Once this is done, you have 5 weeks to send the agreement to the DSS 
  • The agreement must be registered with the DSS before it is legal.
  • It costs €90 to register a co-decision making agreement with the DSS.
  • A Co-decision making agreement, can be changed. It costs €90 to change an agreement
  • You can apply for legal aid to have the fees waived.

Decision Making representation order 

  • If you are no longer to make certain decisions, the court can appoint a decision making representative to make those decisions on your behalf.
  • They will try to appoint someone you know and trust, but if that is not possible, the court can select someone from a panel of trained experts.
  • A decision making representation order is created when someone is applying for the fair deal scheme on your behalf.
  • The application is made through the courts.
  • There is a fee to make an application to the court. You can apply for legal aid to have the fees waived.
  • If possible, it is worthwhile creating an Enduring Power of Attorney while you have capacity.  This will allow you to document how you would like your legal, and financial affairs managed while you still can.

For further information:

Enduring Power of Attorney

An Enduring Power of Attorney, EPA, is a legal document that sets out who you would like to manage legal, financial and certain personal care decisions for you if you reach a point where you cannot make these decisions yourself.

This person is called your attorney. You can choose family members or friends to become your attorney. Setting up an EPA is a good idea. It means you can state who you want to manage this area for you when you can no longer do this.

Important points to know about creating an EPA include:

  • You need to create this document while you can manage your legal and financial affairs. Once it is set up, nothing will happen until you reach a point when you cannot manage your legal and financial affairs anymore.
  • It is a good idea to appoint two people to be your attorney in case one person cannot take up the role when the time comes.
  • There are a number of steps involved.
  • If you want to apply online, you need a myGovID. Alternatively you can verify your identity by sending in relevant documents to the DSS by post.
  • You can get more information and the forms that you need to fill in by going to the decision support service website. Click HERE to visit their website.
  • You will need to get a solicitor to sign a statement.
  • The EPA must be signed in front of two witnesses.
  • Once this is done, you have 3 months to send the agreement to the DSS 
  • You will need to get a medical opinion from your doctor and another healthcare professional confirming you understand the EPA and what it means when you sign the document
  • You must tell certain people (spouse, children etc) that you are making an EPA and give them a copy.
  • There is a fee to register the EPA- €30.
  • You may qualify for legal aid to help pay for this.
  • Your attorney will only begin to manage your legal and financial affairs for you when a medical report confirms you can no longer manage your affairs yourself. It costs €90 to notify the DSS of this.
  • When you die, your EPA ends. Your will or lack of will takes over.
  • Any EPA’s that were created before the 26th of April will continue to be managed by the solicitor and the courts. Any complaints on these EPA’s will be handled by the DSS.

Still Kathy - Part 3 Thinking ahead via The Irish Hospice Foundation

Planning your health and care needs

A male physician speaking to a female patient as they point at her chart

It can be hard to think about what might happen as your dementia progresses and about what your future care needs may be.

At some point, in the future, your dementia may prevent you from being involved in discussions about your care. This is due to the way dementia progresses.

Taking early steps to plan your care means that your family and your health care team can be made aware of your wishes and preferences.

Wishes and preferences

Here are some questions and points to think about:

  • Who would you like included in discussions about your medical condition and discussions about your health and medical care?
  • Are there cultural or religious preferences that you would like health care staff to know about when taking care of you?
  • Where you would most like to be cared for as your dementia progresses and at the end of your life?
  • Who would you like to visit you, or not visit you, as your dementia progresses?
  • Who would you like to be present, if that is possible, when you are dying?
  • If you have a partner and you are not married to each other, it is particularly important that you express your wishes about their involvement and presence as your dementia progresses and during the final days of your life.

It is a good idea to make sure that people know what is important to you and what you value. You can:

  • Talk to your family or to a trusted person.
  • Write down your wishes and preferences and keep this in a safe place with your financial documents.
  • Create an Advance Healthcare Directive
  • The Think Ahead: Speak for Yourself form can help you write down
  • Talk to your doctor or nurse about your dementia and what may happen as your dementia progresses.

Advance Healthcare Directive

An Advance Healthcare Directive is where you write down what you would like to happen in relation to the use of certain medical care treatments. This can sometimes be called a ‘living will’.

If you create an Advance Healthcare Directive you can:

  • select someone to speak for you if you can no longer speak for yourself. They are known as the designated healthcare representative.
  • and or state what you would like to happen – and what you do not want to happen – regarding certain care treatments.
  • If you state what you do not want to happen, this is legally binding and cannot be over ruled.
  • You can’t refused basic care such as water and food.

It is important to note that if you do not discuss or make plans in advance of your care that your family do not have the authority to make healthcare decisions on your behalf. Your doctor will make the medical care decisions in accordance with their professional guidelines and taking into account what they know about your preferences and wishes. They can also ask your family about what they know your preferences and wishes to help with their overall decision.

How do I create an Advance Healthcare Directive?

Your doctor can help you to create your Advance Healthcare Directive and answer questions you may have.

There are forms that can help you to write your Advance Healthcare Directive.

  • You can get the Think Ahead: My Personal Wishes and Care Plan form at or from your local Citizen Information Centre (developed by the Irish Hospice Foundation).
  • Your Advance Healthcare Directive must be signed by you, two witnesses and by your designated healthcare representative , if you decide to have one. More details can be found on the Decision support service website.

You can change your Advance Healthcare Directive. It is important that you regularly, perhaps once a year, check you are sure it still reflects your wishes and preferences.

Planning for what happens after you die

You may want to make some decisions now about what will happen after you die. Of course, you do not have to make any decisions at all. But here are some things you might like to think about.

  • Are there special funeral and burial arrangements that are important to you?
  • Would you like to donate your organs?
  • Would you like to donate your body for research, this can include donating your brain to help scientists understand more about dementia?

Talking to your family about your plans

A diagnosis of dementia can come as a great shock, even when it is expected. You and your family will experience a range of emotions as you come to understand the dementia you have and the changes it brings.

You may find some members of your family are open about your diagnosis and are there for you to talk to, however difficult the conversation may be. Other members of your family may seem withdrawn or even uninterested. People cope with this difficult news in different ways.

The amount of detail you want to share is up to you.

If you decide to plan for your future, it can be helpful to talk to members of your family about your wishes and decisions you have made. The amount of detail you want to share is up to you.

Your family may find it easier to know you have made plans. Be honest about what your diagnosis means and why you have taken these steps.

Here are some phrases that may help you to talk with your family:

  • “My dementia means that at some point in the future I will not be able to make legal and financial decisions and I will not be able to tell the doctors what I want to happen.”
  • “Because I have dementia, I have made some decisions now, about what I want to happen in the future.”
  • “I know this is hard for everyone, but it is important that I do this now, it is much easier for me to do this early.”
  • “I want to make sure you don’t have to face these decisions later without knowing what I want.”
  • “I want to let the doctors know about my wishes so that they can do their job with my input.”
  • “As much as I can, I want to avoid any legal or financial problems.”
  • “We should all plan ahead, even if we don’t have dementia. We shouldn’t be afraid of planning. It makes life much easier in the end.”
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