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.
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. The Citizens Information service 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.
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.
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
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 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.
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
- The HSE provide a list of registered nursing homes in Ireland
- Our Helpline can also provide you with a copy of the HSE lists of nurisng home and a copy of our ‘Guidelines for Choosing a Nursing Home’ Call 1800 341 341 or email firstname.lastname@example.org
- Nursing Homes Ireland also provide a directory of nursing homes
- DSIDC booklet Finding a Suitable Nursing Home for a Relative with Dementia
- DSIDC booklet Specialist Care Units for People with Dementia in Ireland
- The Nursing Home Support Scheme, or Fair Deal, is the main financial support for the cost of nursing home care and this link will bring you to information about it and the application form.
- You can contact your local Nursing Home Support Office to talk to someone about your application.
- Your local Citizen’s Information Center can also provide help with completing your application
National Quality Standards for Nursing Homes
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.