News

Australia’s first National Young Onset Dementia Summit was held in Melbourne on Tuesday 12 November, bringing together over 110 representatives, including people living with young onset dementia, care partners, clinicians, service providers and advocates.

The landmark event was hosted by the Joint Solutions Young Onset Dementia Project consortium, led by the Young People in Nursing Homes National Alliance (YPINHNA).

Young onset dementia – defined as dementia with onset between 18 and 65 – affects more than 30,000 Australians, a figure projected to rise to 50,000 by 2050.

Bronwyn Morkham, National Director, YPINHNA said “This condition is often poorly understood, with stigma, discrimination, and social isolation deeply affecting both those diagnosed and their families.

“Many face years of complex symptoms before receiving an accurate diagnosis. Approximately half of those affected report inadequate awareness of young onset dementia among general practitioners, with many initially misdiagnosed with a mental health condition,” Dr Morkham said.

Through the Joint Solutions Young Onset Dementia project, extensive consultation with stakeholders has highlighted the urgent need for changes in the way people with young onset dementia are diagnosed, treated and supported.

The Summit discussed the gaps in current dementia care and services for younger people.

“Living with young onset dementia can be an isolating experience,” said Dr Morkham. “With this Summit, we are creating a platform for critical change by bringing the voices of those affected to the forefront and calling on our governments for meaningful action.” The Summit concluded with a proposal to bring together advocacy and representation on young onset dementia in a drive for improved support, funding, and the establishment of a national peak body.

This ‘call to action’ aims to elevate young onset dementia as both a health and disability priority, ensuring the needs of this important community are addressed.