Young Onset Dementia: investigating lived experience

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This research is interdisciplinary, bringing together experimental arts, medicine, psychology, and public health with the aim of understanding the lived experience of young onset dementia, for the person and the members of their support network.

The aim of the research is ultimately to provide improved clinical care and management for people with young onset dementia as well as their support networks.

Dementia is not just an ‘old persons’ disease’ but is a lifespan illness, which can affect adults in the prime of life and even children. Young onset dementia (an onset of symptoms under 65 years) currently affects more than 25,000 Australians. Dementia at a relatively young age is often associated with significant diagnostic delay, during which time the person is labelled as suffering from stress, depression, mid-life or marital crisis, and/or menopause. The person’s family unit, which often includes a young partner and children still living at home, endures uncertainty and increased physical and psychosocial burden often for a number of years before the relative relief of diagnosis. People with young onset dementia report poor mental health due to this unexpected diagnosis as well as the sudden disruption and transformation of their life path, which can lead to significant financial burden. Due to the poor understanding of young onset dementia people can endure stigma and feel excluded from health and support services, which are almost exclusively targeted at the aged. Those with young onset dementia due to chronic drug and alcohol use endure a double stigma.

The candidate may have a background in psychology, psychiatry, community health or other relevant discipline with an interest in the first-person experience of dementia.

The candidate must be interested in an advancing innovative qualitative approaches to the study of lived experience.

The candidate must be willing to work in a transdisciplinary team spanning arts/technology, psychology, psychiatry and community health.


Supervisory team

Art & Design
National Institute for Experimental Arts

Public Health & Community Medicine

Prince of Wales Hospital
Sydney Dementia Collaborative Research Centre (DCRC)