How a timely dementia diagnosis is improving quality of life

There are approximately 400,000 Australians living with dementia, but around half of those remain undiagnosed, underlining the urgent need for new approaches to ensure a timely diagnosis.

“My [dementia] diagnosis allowed me to get the help I needed, and an early diagnosis gave me time to get on with my life,” says Ann Pietsch, who was diagnosed with younger onset dementia at the age of 59.

Ms Pietsch is just one of approximately 400,000 Australians living with dementia, but peak advocacy body Dementia Australia reports that about half of those remain undiagnosed, underlining the urgent need for new approaches to ensure a timely diagnosis.

Flinders University has a host of research teams exploring the multiple aspects of dementia, across its many different forms, such as Alzheimer’s disease (which is the most common), Lewy Body dementia, frontotemporal dementia and others. This enables earlier analysis of the different dementia conditions, examining how to slow their impact, and developing solutions that can delay decline in memory, thinking, and ability to manage everyday activities.

Online tools elevate awareness

Identifying the early signs of dementia and seeking timely diagnosis are vital to help people enjoy quality of life.

To elevate broader understanding of dementia, Flinders researchers have helped develop online resources as part of the Face Dementia national public awareness campaign. Its website includes a checklist that can be used to help people identify symptoms and advise how to have difficult conversations with at-risk family members or friends, and to initiate discussions with a GP.

Flinders’ Professor Kate Laver says the resource was designed through working with people living with dementia, families, older people and health professionals, to ensure it meets everyone’s needs. A second arm of the program has been designed to specifically help GPs and practice nurses in detecting and managing dementia.

Since Pietsch’s diagnosis she has become an advocate for Dementia Australia and dedicates time to supporting people who are newly diagnosed, along with their families and carers, as well as raising awareness about what it is like to live with dementia.                                                                 

Improving our knowledge of Alzheimer’s disease

Alzheimer’s disease currently has no cure or effective therapy, partly due to gaps in our understanding of how this progressive neurodegenerative disorder arises in the brain. A key focus for Flinders researchers is on tau protein, which is of central importance in Alzheimer’s disease.

New research lead by Flinders investigators has revealed how tau protein, a critical element in the formation of Alzheimer’s disease, is also involved in normal learning processes in a healthy brain – and this discovery provides a focal point for future drug therapies. 

Employing a sensitive method named proximity labelling, the Flinders team identified all proteins that tau comes in contact with within brain cells, labelling and identifying the whole collection of interacting proteins as they went.

In another published study, Flinders researchers found that tau protein may help molecular processes of memory formation. They identified one enzyme that critically controls neurotransmitter sensors. This enzyme, called NSF, is inhibited by tau, so this protein discovery will help improve diagnostics and treatment for Alzheimer’s Disease.

Age is no barrier to dementia

The impact of dementia reaches across all age groups, and Flinders experts have also been focusing on the problem of childhood dementia, a devastating group of genetic disorders which result in potentially irreversible brain damage that begins in childhood.

The reach of this under-recognised illness is alarming. One in every 2,900 babies is born with a condition that causes childhood dementia – and half of all children with dementia die by the age of 10.

An estimated 91 Australians die with childhood dementia each year, which is almost as many who die from childhood cancer.  

Like adult dementia, childhood dementia is progressive, meaning children lose their ability to talk, walk, read, write and play.

Professor Kim Hemsley, head of the Flinders University Childhood Dementia Research Group, is driving world-leading research to develop new treatments for childhood dementia. Crucial funding from the Little Heroes Foundation, in partnership with the South Australian Government, is supporting discoveries that have the potential to improve the quality of life of thousands of affected children.

Like adult dementia, there are numerous different diseases for childhood dementia, including Sanfilippo Syndrome and Niemann-Pick disease. Research has focused on treatments for Sanfilippo Syndrome – including a drug that changes some childhood dementia-impacted cells to make them more like normal cells. The team is now expanding its research capacity to target other types of childhood dementia, including Niemann-Pick disease. 

Bold advances in broad dementia research and important diagnosis developments, such as the specialised iDementia tool, underlines that Flinders is the home of experts delving deeper into the mysteries of dementia.