Planning for the Future

When any illness enters our lives, it can be difficult to think about practical arrangements for the future. When a diagnosis of dementia is confirmed it is important to think about legal and financial affairs as early as possible.

A diagnosis does not automatically mean that a person cannot make financial and legal decisions. In this section you can read about steps you should consider. Take time to think about this area of your life. Don’t delay, get the information and advice you need to make decisions which are important now and into the future.

Financial planning

It is important to consider and seek advice about financial affairs as soon as possible.

When a diagnosis of dementia is made it is very important to consider both legal and financial areas as early as possible. In the early stages of this condition a person with dementia can outline their wishes, put their affairs in order and if they want to, plan for the future.

Financial Supports for Carers:

If you are caring for a loved one with dementia, there are currently a number of payments that you may be able to apply for, each has a number of criteria which must be met to qualify for the payment. To get specific information about which supports apply in your situation, you will need to contact the Department of Employment Affairs and Social Protection. You can also contact the Citizens Information service who provide free advice about these payments and can help you to complete the forms. Call them or drop in to your nearest centre, contact details are below.

Legal Planning

When a diagnosis of Alzheimer’s disease or a related dementia has been made, it can be difficult to think about the future, but it can also be reassuring to know that the person you are caring for has made their wishes and preferences clear. There are a number of important legal arrangements which should be considered as early as possible.

It’s important for everyone to plan for the future, but legal plans are especially important for a person with dementia. The sooner planning starts, the more the person with dementia may be able to participate.

A person with dementia in the early stages of the condition may still be able to make plans in this area. A person in middle to later stages of the condition may not be able to do this. If you and your loved one are not sure about whether these decisions can be made, check with your doctor or solicitor.

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

If possible, your loved one with dementia should:

  • Visit a solicitor to make a will if they have not already done so.
  • Choose a person to manage legal, financial and certain personal care decisions if they are not able to do this for themselves in the future. This involves setting up an Enduring Power of Attorney (EPA), which must be done through a solicitor.

In both of these situations, professional legal advice is required. The solicitor must be satisfied that the person understands what they are doing and the effect it will have, and is not under undue pressure from anyone else.

When a person has a diagnosis of dementia, the solicitor may – and best practice suggests they should – ask for a medical opinion to confirm the person has the capacity to understand what they are signing, at the time of signing it.

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.

Making a Will

A will is a legal document that outlines, in writing, the wishes of a deceased person for their possessions and property after their death.

To make a will, a person must be deemed to “have capacity”, that is, they are considered capable of making decisions about their financial and legal affairs. For this reason a person with dementia who wish to make a will or change their will should seek legal advice from a solicitor as soon as possible after a diagnosis, while they still have decision making capacity. As a loved one, you can support the person to ensure they have an up to date will in place. If necessary a doctor can confirm whether the person has decision making capacity to make a will. Once the person is deemed to no longer have capacity, they will not be able to make a will.

To make a will, the person with dementia must:

  • Contact a solicitor – If the person with dementia does not have a solicitor, you can search for a solicitor in your area through The Law Society of Ireland or through the Solicitors for the Elderly.
  • Arrange for assessment through the GP – The GP will need to provide written medical opinion that confirms the person with dementia is capable of understanding the will and the implications at the time of signing. This is essential to prove that the person with dementia is of sound mind at the time of making their will.

Enduring Power of Attorney

Many people with dementia will eventually reach a point where they are no longer able to make certain decisions for themselves. When this happens, someone else, often a carer or family member will need to make decisions on their behalf.

An Enduring Power of Attorney, EPA, is a legal document that is put in place when a person is still able to manage their legal, financial and certain personal care decisions, but it only comes into effect when the person is no longer able to manage their own affairs.

It is still possible for someone to set up an EPA after dementia has been diagnosed so long as it is clear that they are fully aware of what is involved. A solicitor will need to create an EPA and it is advisable to set one up as soon as possible after a diagnosis to ensure that the person with dementia has the opportunity to consider their options and have their say while they still have the capacity to do so.

The person who is given EPA is called an Attorney. Family members or friends can become an Attorney and this must be set up with a solicitor. The solicitor must be satisfied that the person understands what they are doing and the effect it will have, and is not under undue pressure from anyone else.

When a person has a diagnosis of dementia, the solicitor may – and best practice suggests they should – ask for a medical opinion to confirm the person has the capacity to understand what they are signing, at the time of signing it.

If someone doesn’t have an EPA, the only option currently available if they ‘lack capacity’ to make decisions is to make an application through the High Court under the Wards of Court process. In this scenario the court has the power to make decisions on the person’s behalf, where they have been proved as an adult to no longer have ‘capacity’ to make their own decisions. The person’s property and money is brought under the control of the court and the Courts Service will have the duty of overseeing these in the person’s best interest.

Currently, the legislation on decision-making and capacity in Ireland is due to change. The new Assisted Decision-Making (Capacity) Act 2015 has been signed into law but has not been fully commenced. What this means is the Act has been accepted but not all sections have come into force yet. When this happens, no new Enduring Power of Attorneys will be created under the 1996 Act.

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.

Ward of Courts

If the dementia has progressed to the point where the person is unable to make an Enduring Power of Attorney (EPA), an application may have to be made to have the person with dementia made a Ward of Court. A Ward of Court is a person who is deemed to be incapable of making their own decisions and incapable of managing their own affairs. When a person is made a Ward of Court, a committee is appointed to control the person’s assets on their behalf through a ‘wardship’.

The Assisted Decision Making (Capacity) Act will eventually see the end of wardships, with no new wardships once the Act is commenced. Given the varying differences of capacity requirements, it may be found that some wards of courts have capacity, and if so they will be immediately discharged from wardship and their property returned to them.

It may be found that some people are more able to make decisions more independently than others, and will likely require varying levels of support under the new Act. For example a ward of court may be discharged with a Co-Decision-Making Agreement if the court finds that this level of support may enable them to make meaningful choices about their affairs. However if someone requires more intensive support then a Decision-Making Representative may be appointed who would take on a higher level of responsibility for decisions relating to that person.

For further information:

Planning 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.

Transition into a nursing home

Many people with dementia live at home, with support, for the majority of their journey with dementia. Not every person with dementia will move to a nursing home, but many people do.

This can be one of the most difficult transitions for everyone involved. There are many factors involved, sometimes a move to a nursing home is planned over a period of time, and sometimes it happens suddenly. It takes time for the person with dementia and their family to adjust and to build a new routine.

There are a number of factors involved in moving to a nursing home. Below you will find some practical information, however if you would like to speak to someone to talk through this decision, call our free and confidential Helpline at 1800 341 341.

Robert: Advice to Family Carers Contemplating Long-Term Care for Their Loved One With Dementia

Understanding late stage dementia

  • You may find it helpful to understand how dementia can impact a person during the final stages of the condition. Read our factsheet Understanding Late Stage Dementia
  • You can also speak with your doctor or public health nurse about care needs and if a nursing home is an option that needs to be considered.
  • You may experience feelings of grief and loss while caring for a loved one, read our factsheet Loss and grief when a family member has dementia for information and support.

Finding a nursing home

Financial Support

National Quality Standards for Nursing Homes

Robert: When long term care is the right decision

Driving and Dementia

A diagnosis of dementia does not mean a person must stop driving straightaway. However, a diagnosis does mean that certain things must be done to continue to drive.

Most drivers with dementia accept that over time dementia affects their ability to drive safely. With guidance and support from family and healthcare professionals, they will engage with regular assessments
and limit their driving when required. Most people will also engage in planning to stop driving and decide themselves they no longer want to drive.

Once a diagnosis is confirmed, it is necessary to take certain steps. Talk to your doctor about these steps and they can guide you on each one.

  • ​Inform your insurance company. If do not do this, your insurance may not be valid
  • Notify the National Driving Licence Service.
  • You may need to complete an ‘on-road’ assessment. Your doctor or your insurance company may ask you to do this.

At some point, a person with dementia will stop driving. This can be a difficult step, however there are alternatives to driving which can work very well.

For more information

Eamon: When driving is becoming an issue

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