Misconceptions about dementia and decision-making

This article was written by Dr Rose Capp, Dementia Australia Policy Advisor with Ann Pietsch, chair of the Dementia Australia Advisory Committee. Ann is a retired health professional who lives with Lewy body dementia. Ann describes how a supported decision-making approach enables her active involvement in planning and decision-making in all aspects of her life.

What is dementia?

The word “dementia” covers more than 100 different conditions that affect brain function and can be diagnosed across life. It is a progressive condition with associated physical and cognitive changes that vary from person to person. Our risk of developing dementia increases as we age, but it is not a normal or inevitable part of ageing.

Some of the most common forms of dementia are Alzheimer’s disease, vascular dementia, frontotemporal dementia and Lewy body dementia. Symptoms can vary but typically involve changes in cognition, memory, mood, social skills, thinking and behaviour.

How common is dementia?

In 2025, it is estimated there are 433,300 people living with dementia in Australia. This includes 29,000 people living with “younger onset dementia”, which is dementia diagnosed in a person who is under 65. In First Nations communities, the rates are higher and the onset age is younger.i Dementia Australia predicts that the number of Australians living with dementia will double by 2054, unless there is significant intervention (we use this word to indicate changes not only in medical treatments but other therapeutic and social care approaches. I understand you want to make the language accessible but ‘action’ is not accurate in this context).ii

Even though dementia is common, the Australian Institute of Health and Welfare’s 2023 Dementia awareness survey of more than 5,400 people showed that “generally, Australians have limited knowledge about dementia”. The survey also shows that stereotypes and misconceptions about dementia persist.

Dementia and decision-making

Decision-making ability can be described as the ability to understand information that may be relevant to a decision (including the consequences), retain this information for decision-making purposes (even if only briefly), and communicate decisions (in some form).

If we are living with dementia, we might have difficulty doing those things. If we completely lose our ability to make decisions, we might need to someone to make decisions for us that reflect our wishes. But it’s quite possible that we still have the ability to make some of our decisions.

Decision-making ability can be influenced by a variety of physical, psychological and environmental factors, and it can fluctuate, even over the course of a day. Because of this, we might sometimes need support to make our decisions, which calls for a flexible and responsive approach.

Supported decision-making for people living with dementia

Supported decision-making is a rights-based, responsive approach gathering ground worldwide. It enables people with a disability, including those living with dementia, to make decisions about finances, health and other matters with support from a person or group of people they know and trust.

Supported decision-making acknowledges both the relational (making decisions in genuine partnership) and situational (decisions are context dependent) nature of decision-making. The type and level of help with decision-making our trusted person gives us will depend on how much, or how little, our dementia has affected our decision-making ability. Every person’s situation is different, and the support we receive needs to suit us and our unique circumstances.

Ann’s story

Ann was diagnosed with Lewy body dementia at 59 and needed to make a number of important decisions. After talking with her husband, they agreed that supported decision-making would enable Ann to be involved in her decision-making.

“Despite knowing quite a bit about dementia, receiving a dementia diagnosis was no fun at all. All of a sudden there were numerous decisions that needed to be made or at least considered. I gave up work, we downsized our home and before I knew it, this was the start of supported decision-making for my husband and me!

“I was able to make decisions – on finances, Centrelink, NDIS, and the list goes on - and my husband was involved in all these decisions, supporting me to be as independent as possible.”

Successful supported decision-making

For supported decision-making to work effectively, the person we choose to help us make decisions should be someone who knows us well, understands our wishes, and knows what we need to make good decisions.

For example:

• We may think more quickly and easily in the mornings, so our trusted person should be someone who knows this and will sit down with us for important decision-making at that time.

• We may have difficulty understanding verbal communication but be quite comfortable reading it, so our trusted person should be someone who knows to have a pen and paper ready for decision-making.

• If we come from a culturally, socially or ethnically diverse background, our trusted person will need to accommodate any differences in understanding dementia and decision-making to be able to encourage us to participate in our decision-making.

Because our cognitive and communications skills can vary with dementia, the way information is given to us might need to be responsive. Decision-making supporters might need to use a mix of writing, plain English versions, visual representations, audio and other formats.

Presenting decision-making options to us in a balanced way, checking that we’ve understood the information and communicating our decisions to others are all important parts of the supported decision-making process.

Living with dementia does not stop us making decisions, minor or major. As Ann Pietsch observes, “It is my human right to make decisions, and it is empowering.”

Australia’s new Aged Care Act

The Australian government has recognised the importance of supported decision-making by introducing a new law called the Aged Care Act from 1 November 2025. Supported decision-making principles and actions are embedded in a number of parts of the Act, including a new “supporter” role.

The Act stresses that a “supporter” is someone who helps a person living with dementia make decisions but doesn’t make the decisions for them. Supported decision-making underpins the Act’s Statement of Rights and Statement of Principles, which applies to aged care providers and anyone else performing functions or duties under the Aged Care Act.

More information

For more information about supported decision-making for people living with dementia, see Dementia Australia’s position statement on supported decision-making.

For other information and resources about dementia and supported decision-making, see Dementia Australia's website.

For information and advice about dementia, call the National Dementia Helpline on 1800 100 500

Compass has more resources about dementia. Click here