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 make sure 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 with you daily.
  • Organise your wallet or purse, for example clear out any unnecessary cards or paper.
  • If you find it difficult to remember the pin number 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 else (perhaps a family member) can help to 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 extremely important 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, to draw up an Enduring Power of Attorney and to 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 take decision which will affect your future. As the condition progresses, at some point this will not be possible. If you are unsure about whether you can make legal decisions, talk to your doctor and your 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.

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 are able to 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 any more.
  • You need a solicitor to create an EPA.
  • You will need to get a medical opinion from your doctor and another healthcare professional that confirms you understand the EPA and what it means at the time you sign the document.
  • 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.
  • Your Attorney will only begin to manage your legal and financial affairs for you when there is a medical report that confirms you can no longer manage your affairs yourself.
  • When you die, your EPA ends. Your will or lack of will takes over

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

Assisted Decision-Making (Capacity) Act 2015

The Assisted Decision-Making (Capacity) Act makes a number of important changes to Irish law about what happens when people have difficulty with decision-making.

In December 2015, the Act was put onto the Irish Statute books. The Commencement Order has been signed; this is what will make it an active law in Ireland. To date three Draft Codes of Practice have been developed

The Assisted Decision-Making (Capacity) Act:

  • recognises that a person may be able to make some decisions and not others and that their ability to make decisions may vary over time;
  • introduces 3 new ways of supporting people who have difficulty making decisions, depending on how much support they need;
  • introduces new guidelines which everyone must follow when making decisions on someone else’s behalf. For example, the person’s wishes and preferences must be respected as far as possible;
  • creates a new Decision Support Service which will have responsibility for providing information and guidance and overseeing decision making arrangements;
  • abolishes the Ward of Court system and replaces it with the Decision Support Service;
  • makes some changes to the Enduring Power of Attorney Act 1996;
  • allows people to make Advance Healthcare Directives;

When the Decision Support Services is set up, more information will be available on the new arrangements for decision-making.

Planning your health and care needs

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;
  • and or state what you would like to happen – and what you do not want to happen – regarding certain care treatments.

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: Speak for Yourself form at www.thinkahead.ie or from your local Citizen Information Centre (developed by the Irish Hospice Foundation).
  • You can order Let me Decide, a book about health and personal care directives by Prof. D William Molloy, at www.letmedecide.ie

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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