How dementia can affect your end of life planning

May 14, 2021
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Bernadette Fulton

We have all seen the figures. Dementia and Alzheimers in Australia are affecting an ever increasing number of people. And as we are living longer, we know these figures will continue to rise.

We may see this information as disturbing, but somehow removed from us.  Until the times comes when we start hearing about people we know. Family members or friends who are now part of these statistics. And we realise it could happen to anyone.

I recently learnt about the diagnosis of two women close to me. One is a very long time friend who has been diagnosed with dementia.  And the other is a relative who has been diagnosed with early onset Alzheimers. So I started thinking - what if this happens to me? What legal rights and protections will I have?

The medical term ‘dementia’

Dementia is an overall term used to describe symptoms that impact memory, performance of daily activities and communication abilities. An Australian Government agency called Health Direct describes dementia as follows:

Dementia is a broad term used to describe the gradual loss of someone’s memory, intellect, ability to think rationally and social skills. But dementia is not one specific disease. Rather it is a collection of symptoms of a long-term brain disorder. Such as Alzheimer’s disease which is the most widely known. Or vascular dementia. At present there is no known cure.

How common is dementia in Australia?

Dementia Australia estimates around 1 in 10 Australians aged 65 and over is affected by dementia. It is more common with advancing age and remains one of the leading cause of death for men and women along with heart disease. But the medical profession does not consider it to be a normal part of ageing.

People in their 40s and 50s can also get younger onset dementia. In 2021, there are an estimated 28,300 people with younger onset dementia, and this is expected to rise to more than 40,000 people by 2058.

Government figures estimated that in 2020 there were between 400,000 and 459,000 Australians with dementia. That number has risen to 472,000 in 2021. And Alzheimer’s disease accounts for up to 70% of diagnosed cases.

The continued growth and ageing of Australia’s population will lead to an increase in the number of people with dementia. The Australian Government estimates the number of people with dementia will increase to between 550,000 and 590,000 by 2030.

But whatever the numbers, it does not truly reflect the number of people impacted by the disease, or the challenges that families face living with a loved one such a diagnosis.  

What steps should I take to protect my legal rights in the event I get dementia?

Get your personal affairs in order. Sooner than later. Most experts advise making legal preparations as early as possible. Aim to take these steps now, while you are still in full control.

You may have to have to give up some of your legal and financial independence and power to a substitute decision maker. Usually by nominating people you trust to represent you should you lose capacity as a result of dementia. But doing so now could help you avoid being taken advantage of at a later time, if your abilities are diminished.

The key legal documents you should consider are explained below.

Your Will

A valid, up to date Will is central to our end of life and estate planning. Your Will sets your wishes for any distribution of your estate and assets. And any other gifts or bequests you wish to make.

Don’t delay making a Will. Obtain professional advice and store your Will in a safe place. Preferably in safe custody with your solicitor or other professional adviser. And you can use Anticipate Life to record the location of your Will. So it can be readily found when needed. You can also use Anticipate Life to record the name of your Executor and other important information.

Dementia may affect your ability to understand legal concepts. A medical evaluation might determine that your mental capacity is compromised as a result of dementia. And you may not be able to enter into legal documents. So act now and avoid that risk.

Enduring Power of Attorney (Enduring Guardian)

A substitute decision maker who manages your legal, financial and personal matters, in some cases including medical decisions, may be called an Enduring Guardian or Medical Decision Maker.

By entering into an Enduring Power of Attorney you give that person certain powers. These can include making lifestyle and accommodation decisions. And power to manage your financial affairs. That person keeps your affairs in good order and makes sure your bills are paid.

But only if you are no longer mentally or physically capable of making those decisions yourself. For example, as a result of dementia. You retain the right to make your own decisions for as long as you have legal capacity.  And the attorney only manages these matters according to your instructions.

Note that each State deals differently with personal and medical decisions under an Enduring Power of Attorney. Several require that these come under a completely separate legal document. So ensure you obtain legal advice in the state you reside in.

Living Will (or Advance Health Care Directive)

A person with dementia or Alzheimers will reach a point where they cannot make informed decisions about important specifics of their medical treatment. Such as what procedures or interventions they may or may not want. This is probably a subject to discuss in advance with loved ones.

You can stipulate your wishes and preferences in a legally binding Living Will. This ensures that your wishes will be respected and followed. For more information on Living Wills and Enduring Guardianships you can read the Anticipate Life blogs on this subject.

Again, the regulations and terminology in each State are different so obtaining legal advice is essential.

Who decides if I have capacity to make decisions?

Australian legislation is based on the principle of ‘presumption of capacity’. This means that the law assumes you are capable of making decisions for yourself. Unless and until determined otherwise.

No one can just assert that a person with dementia is no longer capable of making decisions.  A legal decision will have to be based on a medical evaluation and determination, for example by a doctor or psychologist.

Get independent private legal and professional advice

Before you enter into any of these legal documents be sure to obtain professional advice from a solicitor. One who is acting solely on your behalf.  And to whom you can speak in private. It is important that these documents are properly drawn up and validly executed and witnessed.

Your solicitor will also make sure that you understand the legal significance and effect of the documents you enter into. Particularly the Enduring Power of Attorney you sign. And check that you have not been coerced or unduly influenced into signing anything. It is illegal to pressure someone to take financial or legal steps which are against their will. This includes using deception, coercion or undue influence. Whether the person has dementia or not.

Remember that you can place restrictions on the powers of your Enduring Attorney. Your solicitor can tailor the document to your specific instructions. For example you can prevent an attorney from selling your home. Or place other limits on their powers. And you can legally revoke this document at any time. For example if you suspect misuse of powers. You can discuss these matters with your legal adviser.

Who can be an attorney under an Enduring Power of Attorney

You can nominate a family member or a friend to take on this role. When considering who might be suitable keep the following in mind. The person must be:

  • at  least 18 years of age (a legal requirement)
  • someone you trust completely
  • living close enough to you to be able to take an active role in your affairs if necessary
  • able to deal with your financial and property-related matters
  • keep accurate records of any transactions made as your attorney, and
  • someone whose selection will not create conflict within the family.

Picking the right person as your Enduring Attorney or Guardian

Nominating one family member over others can sometimes lead to family conflict. But an implicitly trusted family member is often the best-placed person to nominate as your enduring guardian.

And you should generally grant this power of attorney to more than one person. Whether they are family members or not.

A system of majority voting and decision making among the attorneys can be an option. Especially where siblings are involved. But legal rules on this vary from state to state, so check first.

It can be a difficult decision but don't put it off for too long. Don’t leave it until it is too late to enact an Enduring Power of Attorney. This can happen once a person lacks capacity to look after their finances. Or make informed medical decisions as a result of dementia or otherwise.

Non-family guardian and attorney options

If  there is no suitable family member you can consider appointing your legal representative. Or other third party who has no conflict of interest.

And if you are worried at any time about managing your financial affairs due to age or ill health (mental or physical) there is another option. You can consider getting help from a public trustee, such as the government Trustee and Guardian services in each state . They have the necessary knowledge and expertise.

What if I haven’t appointed an attorney or substitute decision maker?

In very general terms if a person loses capacity the position is as follows. However, remember all cases are different.

If the person has not appointed an attorney to make financial decisions for them, a family member or third party can intervene, by applying to the relevant government Board or Tribunal, and requesting appointment of a substitute decision maker. This is usually a state administrator who steps in to mediate any major financial decisions.

And if the person has not appointed someone to make health care or personal decisions for them, then a ‘Person Responsible’ is legally appointed to make those decisions. This is usually a family member or someone who has a close relationship to the person.

Final advice to keep in mind

Don't wait too long to set up your Enduring  Power of Attorney. Once you lose the required mental capacity to enact one it will be too late.

If you give one relative an Enduring Power of Attorney consider notifying your other close relatives (in the interests of family harmony).

When you set up an Enduring Power of Attorney, remember to notify relevant people and institutions. For example, banks, your accountant and solicitor.

The legal protections set out in this article are central to all prudent end of life planning. Especially as we advance in years. For more information on these and other aspects of end of life planning, visit the Anticipate Life website.