Young Onset Dementia

Joint Solutions – Young Onset Dementia Project

In 2021 the Australian Institute of Health and Welfare (AIHW) estimated that over 28,000 Australians are living with young onset dementia.  This number is expected to double by 2050. Yet the supports and services these people need are rare to non-existent.

Joint Solutions is an Australian Department of Social Services (DSS) funded project.  It will map the services required by people living with young onset dementia (YOD) and their families from diagnosis to end of life care, and identify the programs best placed to provide support. The project will run until April 2025.

Project Consortium

Convened by the Alliance, a consortium of leading dementia organisations including the Young Onset Dementia – Special Interest Group (YOD-SIG), Eastern Cognitive Disorders Clinic (ECDC), and Dementia Australia (DA) will oversee the project’s research with:

• people living with young onset dementia and their families
• clinicians and specialist service providers
• consumers and industry.

Consultation will include small group discussions, a national survey and a series of roundtables involving:

• people living with young onset dementia and their families
• government funded programs (including the NDIS and health)
• service providers
• First Nations representatives
• culturally and linguistically diverse (CALD) organisations
• advocacy organisations and workers delivering direct support.

Project outcomes

The project will focus on systems responses for people with young onset dementia and their families and will identify where services need to be developed across the disease course as part of an integrated system of care.

Reports

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

A rapid review of models of care and pathways for people with young onset dementia

Undertaken by Associate Professor Nathan D’Cunha and his team at Canberra University, the Rapid Review looked at international models of care for people living with young onset dementia.

Three core types of young onset dementia models of care are described, including:

(a) systems-level models, including national frameworks, referral pathways, guidelines and funding models;

(b) specialised services and memory clinic models, including those within-systems, integrated and collaborative care models and

(c) supportive care models

Click here to read full report

The Joint Solutions Report

The Joint Solutions Report presents the outcomes of a series of surveys and focus group discussions undertaken by the Young Onset Dementia Special Interest Group (YODSIG) as part of the Joint Solutions Project’s work to describe a system of care for Australians living with young onset dementia.

The report argues that pathways to access services for both diagnosis and after a diagnosis of young onset dementia, are disparate because young onset dementia sits at the intersection of the health, disability, and aged care sectors. It concludes that people living with young onset dementia and their families wait too long for support, are offered services which are not age-appropriate, and fall through the gaps of these services.

Click here for full report

You may also be interested in the following:

1. A rapid review of models of care for young onset dementia – Associate Professor Sam Loi
2.  Joint Solutions Project results – Dr Clare Beard
3. Updating the Dementia Clinical Practice guidelines and principles of care – Professor Amy Brodtmann
4. Young onset dementia Project Infographic
5. ‘Call to Action’  This ‘Call to action’ was overwhelming supported by the Summit attendees.