My Health Record offers more choices for people living with dementia

eNews sign-up

Sign up for our eNews and discover more about what we're up to, the difference we're making, and, most importantly, how you can help.


Dementia Australia has welcomed the potential offered by My Health Record as well as acknowledging the importance of a three-month opt-out period to ensure Australians can make informed choices about their healthcare.

Dementia Australia Executive Director Consumer Engagement, Policy and Research, Kaele Stokes, said that with more than 425,000 Australians living with dementia it is essential that our healthcare system is flexible enough for people impacted by dementia to be supported in the way that they need and deserve.[1]

As advocates for consumer choice, Dementia Australia has long called for Australians to have access to information that empowers them to make choices about their use of the My Health Record program, especially as people living with dementia may not be aware of the details of My Health Record or the process of opting-out.

“A safe and effective electronic health record system should ensure there is streamlined, appropriate access to an individual’s medical and health records and reduce some of the confusion and distress that people with dementia can face in clinical and hospital settings,” Dr Stokes said.

“People living with dementia won’t have to repeat their health history each time they see a healthcare provider.

“And when supporting a person living with dementia or acting with power of attorney, families and carers, as well as health professionals, will be able to access vital information such as their medication lists, shared health summaries, organ donor decisions, allergy information and advanced care plans with ease and simplicity.

“At the same time, we understand that some people may not wish to have a single electronic health record and that people with a cognitive impairment, particularly, need support to make the decision to opt out of the system over the coming months,” Dr Stokes said.

Theresa Flavin, a 52-year-old mother of five who was diagnosed with younger onset dementia at the age of 46, welcomes the My Health Record but recognises the importance of the opt-out model.

“There have been a number of instances where things have gone wrong because I get asked all kinds of questions by health professionals that I cannot answer because I can’t remember or I get might get confused, and this has been very distressing,” she said.

“I am happy to trade off some privacy to reduce the risks of mistakes. It is not okay to expect my family, particularly my kids, to remember all of my health history or my medications - so I can’t argue against the My Health Record.”

Dr Stokes said the start of the three month opt-out period heralds a significant step in Australia’s digital health strategy. By the end of 2018, every Australian will have a My Health Record unless they choose not to have one.

“A well-functioning e-health system is also integral to supporting the ongoing move to consumer directed care across the aged care and disability sectors, by providing individuals with greater control over their own health and wellbeing and allowing them to make choices about the types of care and services they access.”

Dr Stokes said dementia is one of the largest health and social challenges facing Australia and a renewed and sustained focus on dementia is needed for the millions of Australians impacted by the disease every day currently and in the future.

“Without the right supports at the right time in the appropriate care settings, dementia can also present a significant cost to our health system. The new era of the My Health Record is a move which we anticipate will support people living with dementia and their families and carers.”


Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and carers. It provides advocacy, support services, education and information. An estimated 425,000 people have dementia in Australia. This number is projected to reach more than 1.1 million by 2056. Dementia Australia is the new voice of Alzheimer’s Australia. Dementia Australia’s services are supported by the Australian Government.

National Dementia Helpline 1800 100 500

Interpreter service available

(The National Dementia Helpline is an Australian Government Initiative)

Dementia is a National Health Priority Area

Media contacts: Christine Bolt 0400 004 553, [email protected] and Monika Boogs 0407 019 430, [email protected]

When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines.