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 Lawyer Chloe Wilson.
“I would like to be buried here” – The King’s final wishes
In a deeply moving interview with The Australian in September 2025, rugby league legend Wally Lewis opened up about living with chronic traumatic encephalopathy (CTE). He also revealed that he wishes to be buried at Lang Park, now Suncorp Stadium. His wife, Lynda, told the publication she understands his wish completely, noting that the stadium has been his life.
The couple’s story highlights the importance of documenting final wishes while you still can and underscores why early planning matters so much when facing a dementia diagnosis.
In July 2023, Lewis announced that he had been diagnosed with dementia after experiencing problems with his short-term memory. His specialist advised him that they are 90 per cent sure he has chronic traumatic encephalopathy (CTE), brought on by years of repetitive head knocks throughout his football career. Lewis is now 65 years old.
Actor Chris Hemsworth made similar headlines in 2022 after discovering at age 39 that he has an increased risk of developing Alzheimer’s Disease. Genetic testing revealed 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. The news prompted him to reassess his priorities and place more importance on preparing for diagnosis and end-of-life care.
More than 425,000 Australians are currently living with dementia – a figure set to more than double by 2065. Dementia Australia estimates that more than 1.7 million people nationwide care for someone living with dementia.
The full suite of essential documents
Receiving a diagnosis like dementia doesn’t mean the end of an individual’s ability to make decisions for themselves. If the individual still has capacity, they need to review their estate planning documents as soon as possible.
Several key documents should be in order:
- Your Will: This document should be reviewed and updated if it is outdated in relation to the person’s wishes. This is where you can document important preferences regarding your funeral, burial or cremation wishes, as well as how you want your estate distributed.
- Enduring Powers of Attorney and (if in NSW) an Appointment of Enduring Guardian: These documents grant one or more people with the legal authority to make financial, personal, and medical decisions on your behalf if you no longer have the capacity to make decisions for yourself. In NSW, an Enduring Power of Attorney is used for financial decisions only, and the Appointment of Enduring Guardian is used 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 your superannuation death benefits distributed. The nomination is generally valid for a maximum of three years and lapses if not renewed; however, some 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 only operates when a person no longer has decision-making capacity and allows you to specify preferences for requesting or refusing specific types of medical treatment, including palliative care preferences.
Why final wishes matter: burial, cremation and everything in between
Wally Lewis’s desire to be buried at Lang Park – while perhaps unique in its specific location – reflects how we all have preferences about what happens to our remains and how we want to be remembered.
It’s important to discuss your wishes with an experienced estate planning lawyer, as not all instructions may be able to be fulfilled. Often, when requesting for your ashes to be scattered at a specific location, or your body to be buried somewhere outside of a cemetery, additional approval or permits must be sought by the executor of the estate.
Additionally, without clear documentation about your wishes, disputes can arise that add unnecessary stress during an already difficult time.
In Queensland and across Australia, there is no automatic “right” to control what happens to a deceased person’s body. The law recognises a duty to dispose of remains respectfully. Still, disputes between family members about burial versus cremation and where to lay someone to rest are surprisingly common.
Courts have had to intervene in heartbreaking cases where parents disagree about whether their deceased child should be buried or cremated, where cultural or religious beliefs clash with a deceased person’s stated wishes, or where family members contest whether remains should be scattered in a particular location.
For more detailed information about cremation options, see our article ‘Cremation and What You Can Do With a Loved One’s Remains.’
One of the most valuable aspects of documenting your final wishes is the peace of mind it provides to your loved ones. When families know exactly what you want, they can focus on grieving and celebrating your life rather than arguing about logistics.
Without clear instructions, well-meaning family members may genuinely disagree about what you would have wanted. These disputes can fracture relationships and create lasting rifts at a time when families most need each other’s support.
To learn more about how these disputes arise and how to prevent them, read our articles on:
‘Disputes Over the Dead: Burial or Cremation?’
Transitioning to care
Another consideration when presented with an early dementia diagnosis is future living arrangements. Facilities with specialist dementia care should be prioritised.
A lawyer specialising in aged care arrangements can assist in understanding what needs to be considered for future planning and assess the fairness of any residence contract.
Palliative care
An Advanced Health Directive also allows you to specify preferences about palliative care, including whether you wish to die at home surrounded by loved ones if possible.
For more information, see our article ‘Dying at Home: National Palliative Care Week.’
Understanding capacity: You can still plan even after a diagnosis
If the onset of the disease is still at an early stage, legally binding documents may still be executed depending on the person’s ability to understand the nature of the document and provide instructions.
According to The Australian, Lewis manages his daily life with the help of a worn blue diary and his wife, demonstrating that with the proper support, people with early-stage dementia can continue to function effectively.
An experienced lawyer will be able to assess an individual’s capacity on the day of providing instructions and executing the legal document.
There are necessary steps required to prove capacity, so it is essential to consult with a lawyer specialising in this area who can advise on rights and assist with the assessment process to obtain an appropriate medical certificate or doctor’s report if required.
When capacity becomes an issue
If a dispute over a person’s testamentary capacity ends up in Court, the Judge will assess that person’s ability to understand the significance of making a Will, be aware of the nature and extent of their estate, know who might have claims on their estate, and evaluate the strengths of those claims.
Claims challenging a Will commonly involve testators with dementia, Alzheimer’s, Parkinson’s or Motor Neuron Disease, as these conditions can influence decision-making and lead to family disputes.
Proper documentation of capacity at the time of signing your documents can help protect against future challenges.
The importance of having these conversations
One of the most powerful aspects of Wally and Lynda’s story is their willingness to speak openly about challenges that many families face in silence. According to The Australian, other former footballers experiencing similar symptoms are going to Lewis for advice. At the same time, Lynda has fielded calls from wives of former footballers struggling to get their husbands to acknowledge problems and seek help.
The reluctance to plan – whether due to fear, denial, or simply not knowing where to start – can leave families in difficult positions when capacity is lost or after death occurs. The time to have these conversations and put plans in place is when you still can.
Attwood Marshall Lawyers – helping people at every stage of life
Whether you need to document final wishes, update an existing Will, establish Enduring Powers of Attorney, create an Advanced Health Directive, or plan for transitioning to aged care, our team is here to help you navigate these important decisions with compassion and expertise.
For legal advice, get in touch with 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.
This article was updated in November 2025 to include recent developments in Wally Lewis’s story and expanded coverage of final wishes and burial preferences.
