During National Advance Care Planning Week, 20 – 26 March, Advance Care Planning Australia and Dementia Australia are urging everyone to have brave conversations about their future health preferences in case there comes a time when they can no longer express their wishes.
More than 50 per cent of Australians will not be able to make their own medical decisions at end-of-life1 but worryingly, only 15 per cent of people have an advance care directive2. If you were too ill to make decisions about your treatment and care, who would make those decisions on your behalf - and would they know what you want?
Advance Care Planning Australia Program Director Xanthe Sansome says, “Whatever your health status, advance care planning is important. Through the pandemic, we have been confronted with the reality that any of us could become critically ill at any time. Advance care planning is not something any of us should delay any longer.”
Dementia Australia CEO Maree McCabe AM said if you have a life-limiting illness, dementia or another neurological condition, it is vital to have these important conversations at a time when you are well enough to make these decisions and future plans.
“In 2023 it is estimated that there are more than 400,000 Australians living with dementia,” Ms McCabe said.
“Without a medical breakthrough, the number of people with dementia is expected to double by 2058. Each and every one of us should have an advance care plan and this becomes even more compelling in the face of diseases such as dementia and other life-limiting diseases.”
Dementia Australia Dementia Advocate Ann Pietsch, who is a retired nurse living with Lewy Body Dementia, said she decided to start planning for her future by talking to her husband Timothy about her preferences and writing an advance care directive.
“After I was diagnosed at 59 years of age, I appointed my husband as my substitute decision-maker,” Ann said.
“Should the time come when I cannot make my own decisions, I know he will uphold my rights and values.
“I feel it is empowering to have a directive detailing what is important to me. I love my pets, fine music and being out in the garden. I want to stay home as long as practical. I would like visits from the church pastor, and I do not want to play bingo. I have covered how I want to be cared for. I don’t want extreme measures if I am very ill, and I don’t want tube feeding.
“My family will feel empowered to ensure I will be cared for as I wish as my advance care directive will go with me if I go into hospital or into care.”
Ann added some key advice, "I know it can be a shock after diagnosis of a condition like dementia but it is so important to get an advance care directive in place with tangible examples of what you do and don’t want.”
Dementia Australia Dementia Advocate and carer Heather said she cared for her mum who lived with dementia, and her grandparents. None of them had advance care planning documents that would have made things easier.
“I had to make really confronting, complex decisions in a crisis,” Heather said.
“Now I am caring for my dad, with cognitive decline, and I am seeing how conversations about his preferences can make a difference.
“Whatever your state of health, please make a gift to your family members or your carers by sharing your future health and care preferences.
“This would allow them to focus on loving and caring for you, rather than spending their time trying to understand the impacts of the treatment decisions they are being asked to make.”
National Advance Care Planning Week is the perfect time to talk to those closest to you about what is most important to you in your future health care. Write an advance care directive that can become a powerful statement about who you are, how you want to live and die, and what you value most about living.
For free advice or to request a printed starter pack, call the National Advance Care Planning Support Service on 1300 208 582 from 9am - 5pm (AEST/AEDT) Monday to Friday. Visit acpweek.org.au to access a free email starter pack and other information. You can also find face to face awareness raising events and online webinars available Australia-wide during National Advance Care Planning Week. Advance Care Planning Australia and Dementia Australia will host a joint webinar on 22 March which will be available as a recording afterwards. Advance Care Planning Australia is funded by the Australian Government.
Dementia Australia is the source of trusted information, education and services for the estimated more than 400,000 Australians living with dementia, and the more than 1.5 million people involved in their care. We advocate for positive change and support vital research. We are here to support people impacted by dementia, and to enable them to live as well as possible. No matter how you are impacted by dementia or who you are, we are here for you.
For support, please contact the National Dementia Helpline on 1800 100 500. An interpreter service is available. The National Dementia Helpline is funded by the Australian Government. People looking for information can also visit dementia.org.au.
When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines.