Can people with dementia still make decisions?

Making decisions is part of everyday life.

A dementia diagnosis doesn't take away a person’s right to make decisions but it may change the support they need to make them.

Since Ann's diagnosis of Lewy body dementia, the way she and her husband Timothy make decisions has evolved.

In the Making decisions after a dementia diagnosis episode of the Hold the Moment podcast, they discuss how they continue to navigate this in their day-to-day lives.

For Ann, accepting support was challenging, especially after a lifetime of capability and a strong career in leadership.

However, she recognised that Timothy’s support was important in avoiding becoming overwhelmed.

"You need that help, otherwise you're just living in a muddled mess, trying to make decisions, trying to get through the day," she said.

“If you get anxious, you can't make any decisions.”

While Ann is learning when to let go, Timothy is learning when to step in.

“There's no training for this,” he said.

“You learn on the job and you make mistakes. It is a matter of me listening to Ann and then working out how best to actually help her."

Rethinking what decision-making means

In the same podcast episode, UNSW senior research fellow Dr Craig Sinclair explained how supported decision-making could start from a simple idea – we all make decisions with help.

"We all have help and assistance in making decisions and going about living our lives,” he said.

“When I take my car to the mechanic, I've got no skills in that area.

“I rely on the help of a qualified person to talk me through the issues I need to think about."

For those living with dementia, that help is often more visible and more important however the need for support doesn't change the fundamental right to decide.

"There has been a stereotype that a diagnosis of dementia means a person is less able or unable to make decisions,” Dr Sinclair said.

“That can be really impactful on people's lives and it goes a long way to creating fear around the condition.

“We need to look at each individual, understand their decision-making abilities and what support they need."

In practice, supported decision-making might mean breaking a complex decision into smaller steps or sharing information visually as well as in text.

Knowing that someone is better placed to engage with a difficult question in the morning than the afternoon may also help.

It also means recognising that making a decision and communicating it are two separate things and that both need support.

The new Aged Care Act aims to formalise this approach.

As Timothy and Ann show, the practice itself is built from trust, communication and a commitment to keeping the person living with dementia at the centre.

About the podcast

You can listen to the Still Deciding: Making decisions after a dementia diagnosis episode on podcast apps, the Dementia Australia website and Dementia Australia's YouTube channel.

Dementia Australia's Hold the Moment podcast is full of stories about life after a dementia diagnosis.

It is co-hosted by Jim Rogers, who lives with young onset dementia, and Dementia Australia Ambassador and journalist Hamish Macdonald, whose father lived with Lewy body dementia and Parkinson's.

The podcast is available on podcast apps, the Dementia Australia website and Dementia Australia's YouTube channel.

Looking for support?

The Hold the Moment podcast is just one of the ways Dementia Australia supports people impacted by dementia.

You can also contact the National Dementia Helpline on 1800 100 500 (available 24 hours a day, seven days a week).

For more information on this topic, visit the Planning ahead page.