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Early onset dementia: there is still time to get your legal affairs in order

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Receiving a dementia diagnosis can be overwhelming and a highly emotional time for all involved, but if the individual still has mental capacity when they receive the news, they can and should make sure their estate planning needs are in order as soon as possible, writes Attwood Marshall Lawyers Wills & Estates Associate and Accredited Aged Care Professional Larisa Kapur.

Background

More than 400,000 Australians are currently living with dementia and that figure is set to double by 2058, according to our national peak body, Dementia Australia.

Dementia Australia estimates that more than 1.5 million people nationwide care for someone living with dementia, and more than two-thirds of aged care residents have “moderate to severe cognitive impairment.”

Nearly everyone has been touched in some way from the devastating disease, which sees previously healthy and articulate family members progressively decline as they lose their memory, intellect, and physical functioning.

At the end of July, rugby league legend Wally Lewis announced that he has been diagnosed with dementia. He told 60 minutes that after experiencing problems with his short-term memory, he went in for testing and his specialist advised him that they are 90 per cent sure he has chronic traumatic encephalopathy, a neurogenerative condition known as CTE, brought on by years of repetitive head knocks throughout his football career. Wally is 63 years old.

Another Australian celebrity, Chris Hemsworth, made headlines around the world last year after discovering at age 39 that he has an increased risk of developing Alzheimer’s Disease. While he was filming his docuseries Limitless for National Geographic, genetic testing revealed that he has two copies of the gene APOE4, which makes a carrier eight to ten times more likely to get an Alzheimer’s diagnosis in the future.

Hemsworth says that the news prompted him to reassess his priorities and dramatically changed his outlook on life, which included placing more importance on preparing for the diagnosis and end-of-life care.

There are several different types of dementia, including Alzheimer’s Disease, vascular dementia and frontotemporal dementia. It is most common after the age of 65.

Receiving a diagnosis would of course be a challenging concept to contend with at first. It can be overwhelming to consider the difficulties that lie ahead. However, if it is an early diagnosis, it doesn’t mean the end of an individual’s ability to make decisions for themselves and their future. If the individual still has capacity, it is important for them to review their estate planning documents as soon as possible, even if seeing a lawyer is the last thing on their mind.

The full suite of documents that should be in order are:

  • Your Will: this document should be reviewed and updated if it is out-of-date with the person’s wishes.
  • Enduring Powers of Attorney and (if in NSW) an Appointment of Enduring Guardian: these document/s grant one or more people with the legal authority to make financial, personal, and medical decisions on your behalf if/when you no longer have capacity to make decisions for yourself (whether temporarily or permanently) (in NSW an Enduring Power of attorney is for financial decisions only, and the Appointment of Enduring Guardian is for personal, health and medical decisions upon loss of capacity).
  • Binding death benefit nomination with your superannuation fund: this is a written direction to the trustee of your superannuation fund setting out how you would like some or all of your superannuation death benefits to be distributed. The nomination (if executed correctly) is generally valid for a maximum of three years and lapses if it is not renewed, however some (not all) superannuation funds offer a “non-lapsing” option.
  • Advanced Health Directive: this document enables a person to make decisions about future treatment or care, and to plan for the end of their life. It will only operate if/when a person no longer has decision-making capacity and allows you to go into more detail as to what your preferences are in relation to requesting or refusing specific types of medical treatment.


Capacity

When a person suffers from any form of dementia, an important legal issue that needs to be dealt with is whether that person has the decision-making capacity to carry out their estate planning.

People often believe that a person with a dementia diagnosis cannot make or change their Will or execute an Enduring Power of Attorney. This is a common misconception.

If the onset of the disease is still at an early stage, a legally binding document may still be executed depending on the person’s ability to understand the nature of the document and provide certain instructions. An experienced lawyer will be able to assess the individual’s capacity on the day of providing instructions and executing the legal document.

There are some necessary steps required for proving capacity, so it is important to consult with a lawyer specialising in this area who can advise on an individual’s rights and help with the assessment process to obtain an appropriate medical certificate or doctor’s report, if required.

When family members are unhappy with the contents of a person’s Will, or feel they have been unfairly treated by a recent change to a Will, they may look for symptoms that resemble dementia, such as forgetfulness, as grounds to challenge the validity of the Will.

In fact, the most common types of claims involving someone challenging a Will involve the testator suffering from conditions such as dementia and Alzheimer’s Disease, as well as Parkinson’s Disease or Motor Neuron Disease.

These illnesses can influence a person’s decision-making abilities, and so when drastic changes are made to Wills, there can be uproar in families that leads to litigation.

But challenging a Will based on an alleged lack of capacity is a heated and complex area of law.

If a dispute over a person’s testamentary capacity ends up in Court, the Judge will assess that person’s ability to:

  1. The Will maker must be aware and appreciate the significance of the act in the law upon which he or she is about to embark;
  2. The testator must be aware, at least in general terms, of the nature, extent and value of the estate over which he or she has a disposing power;
  3. The testator must be aware of those who may have reasonably be thought of to have a claim upon his or her estate and the basis for and the nature of the claims of such persons;
  4. The testator must have the ability to evaluate and discriminate between the respective strengths of the claims of such persons.


Transitioning to care

Another thing to consider when presented with an early dementia diagnosis is future living arrangements.

With an increasing ageing population, there are many people ready to transition to the next stage of their life, whether by downsizing their home or finding more suitable living arrangements like a residential park, retirement village or aged care facility.

There are several essential factors to consider once they’ve made a decision to move, including the different types of homes on offer, how they will be assessed for support, what they hope for their living arrangements and what funding options are available.

Having an early dementia diagnosis will, at the very least, focus attention squarely on future needs. Facilities with residency wings specifically for dementia or Alzheimer’s patients, along with a good track record of specialist care and expertise, should be at the top of a shortlist.

A lawyer specialising in aged care arrangements will be able to assist in understanding what needs to be considered for your future planning or provide advice to your attorney/guardian in the event of loss of capacity.

A specialist aged care lawyer can also properly assess the fairness of any residence contract, and make sure the terms and conditions align with the person’s wishes and their understanding of their new way of life. These conversations can take place as early in the process as you like. Preparation will be the key to planning effectively for the future.

Attwood Marshall Lawyers – helping people at every stage of life

The onset of Alzheimer’s Disease or another form of dementia is extremely difficult for families to navigate.

Attwood Marshall Lawyers has a dedicated team that practices exclusively in elder law and the aged care sector. Two of our lawyers are Accredited Aged Care Professionals who represent many clients who live in aged care facilities as well as people who require estate planning expertise and retirement planning advice. Obtaining advice from an Accredited Aged Care Professional means that you can make informed choices after obtaining up-to-date insights into the aged care industry, better understand your rights when moving to a facility, and compare the different options available to you as your life progresses.

For legal advice about transitioning to aged care or drafting or updating important estate planning documents like a Will, Enduring Powers of Attorney or Advanced Health Directives, please contact our dedicated aged care team – we are here to help. For enquiries, please call our Aged Care and Wills and Estates Department Manager, Donna Tolley, on direct line 07 5506 8241, email dtolley@attwoodmarshall.com.au or free call 1800 621 071.

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Larisa Kapur

Senior Associate
Wills & Estates

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Disclaimer
The contents of this article are considered accurate as at the date of publication. The information contained in this article does not constitute legal advice and is of a general nature only. Readers should seek legal advice about their specific circumstances. 

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