Organising legal matters when living with dementia

Key points:

• Legal capacity refers to a person’s ability to understand the consequences of a legal, medical, personal or financial decision
• Organising your legal documents and affairs early on after a dementia diagnosis can ensure your future is taken care of according to your wishes
• Choose someone you trust to support with decision making when you are no longer able to

Any person that is organising legal matters needs to have “legal capacity” to do so. That means you need to have the cognitive understanding of what you are agreeing to when making decisions. However, as a person living with dementia you can fall into a grey area when it comes to your decision-making capacity.

Ideally, you want to organise your legal affairs as early into a diagnosis as you can. This can include Enduring Power of Attorney documents, your Will, Advance Care Directive, and other important documents.

Even if you make these decisions early on and change your mind, up to a certain point, you can still change these decisions through the right channels.

What is legal capacity?

Every citizen in Australia has the right to make legal decisions for themselves or access supports to ensure they can make decisions.

Legal capacity means you are able to make legal, medical, personal or financial decisions about your life. This could be where you want to live, what health services you receive, what you want to spend your money on, or how you want your assets distributed if you die.

Dementia can impact your legal capacity, as the disease can affect your thinking ability, memory, and behaviour – which can be important components of legal capacity.

Legal capacity regulations can differ from State to Territory, so it is important to understand the laws in place where you live if you have been diagnosed with dementia.

It is also important to remember that your decision making capacity can fluctuate depending on your situation, health or environmental factors. Additionally, just because you can’t make decisions on financial matters doesn’t mean you cannot make decisions on health care matters.

Legal capacity isn’t necessarily a blanket rule for everything in your life, it is based on your current circumstances and what the decision is about.

Earlier the better

While organising your legal affairs after a recent dementia diagnosis can be a difficult task to do straight after hearing the news, it is necessary to ensure you are well set up in later years.

Dementia is different from person to person, and may gradually develop in a person over many years or could rapidly progress in a couple months.

It can be vital to have all legal matters settled and organised in case of either scenario. You can still revisit any documents or affairs later on if you change your mind and are still able to make legal decisions.

Having your affairs sorted early means you are still able to have a say in your future even if you are no longer able to make decisions yourself.

Talk to the professionals

After a dementia diagnosis, you should talk to your doctor about your decision making capacity. Your doctor will be an important component when organising legal documents with a legal professional.

Your lawyer will likely have an input on your legal capacity including what level of capacity you may need when organising a certain legal document.

Generally, your legal capacity can be determined through a range of tests from either a doctor or psychologist. These tests will determine if you are still able to make informed decisions and judgements when making decisions.

Depending on the progression of your dementia, you and your family may decide that it is best for your substitute decision maker to step in to make decisions on your behalf, which is why it is important to have all your legal documentation in place early on.

Keep in mind that if someone believes or has concerns that you are no longer able to make decisions, they are able to apply to the relevant Board/Tribunal in your State/Territory to request an assessment to see if you can continue to make decisions for yourself.

Supported decision making

When you are organising your affairs, you may look at implementing an Enduring Guardian or Enduring Power of Attorney (EPOA).

The person you choose for this role should be someone you trust and someone who will make legal decisions on your behalf when you are no longer able to.

It is important you choose a person that understands you and will make the effort to include you in decision making.

While you may have lost capacity to make legal decisions, it doesn’t mean you still can’t have a say in what happens with your affairs or personal life.

Your EPOA should be willing to listen to you and take anything you say into account when it comes to decision making, even if you don’t have the legal capacity to make decisions anymore.

If you would prefer to have multiple people involved in your decision making supports, you can appoint more than one person to be a substitute decision maker. Make sure to include instructions on how you want these people to interact. For example, do they need to agree on decisions together or can they make decisions independently of one another?

Be aware of legislation in your State/Territory, as it can differ throughout Australia. Some EPOA’s are only able to make financial decisions while other jurisdictions allow health related decisions to be included.

Advance Care Directives, which provide an outline of your medical wishes, can also include a substitute medical decision maker that makes medical treatment decisions on your behalf.

If you don’t put in place a substitute decision maker, things can become really complicated when you become too unwell to make decisions for yourself.

For instance, if you are determined by your State/Territory to not have legal capacity, then a family member may need to apply to be made a decision maker or if there is no family member to be made a “person responsible”, you could be assigned a Public Guardian.

Review your legal documents and substitute decision makers regularly to ensure these important documents are up to date while you have legal capacity.

If you have questions about legal capacity or organising your affairs as a person living with dementia, contact the National Dementia Helpline for information and assistance on 1800 100 500.

Did you organise your legal matters early into your dementia diagnosis? Tell us in the comments below.

Related content:

What is an Enduring Power of Attorney?
Creating a strong estate plan
What should you specify in your Advance Care Directive?
Do I really need a Will and last testament?