Carers face dementia toll but there's 'joy to be had'

After a full day's work as a medical professional, Debra Graves' second shift began when she returned home to care for her husband Don.

Diagnosed with dementia in 2011, the former businessman and father's condition steadily deteriorated until his death seven years later, aged 84.

A leading pathologist, Dr Graves was accustomed to hard work, but the demands of her new caretaker role were exacting.

Apart from the round-the-clock work, the pain of watching her husband lose himself to the disease was it's own battle.

"It was heartbreaking in so far as the loved one that you knew was slipping away," she told AAP.

Dr Graves' experience is reflected in the Australian Institute of Health and Welfare's inaugural living with dementia survey released on Monday.

Published to coincide with the Dementia Action Week, the survey heard from 266 people with dementia and 1648 carers between May 2025 and January this year.

The survey probed the demands of caretaker duties, wellbeing outcomes for both patients and carers and the challenges surrounding accessing care.

It found that carers tended to rate their wellbeing lower than those they support, with about two thirds of carers recording low wellbeing.

The scale of the responsibilities caregivers are charged with are significant, with about half providing at least 40 hours weekly and nearly a third 70 hours or more.

"Survey findings make it clear that supporting people living with dementia must also mean supporting the people who care for them," AIHW spokesperson Bronte O'Donnell said.

More than 60 per cent of carers felt overwhelmed, while about half said some family relationships had suffered as a result of their duties.

The survey also probed the unique challenges facing patients, including difficulties accessing help and subjective struggles related to their conditions.

About 44 per cent of people with dementia felt frustrated while a similar number felt their diagnosis reduced their sense of control.