Post-Diagnostic Support for Behaviour Changes in Young-Onset Dementia in Australia

Area of Science:

• Gerontology and Neurology
• Psychiatry and Psychology

Background:

• Behaviour changes are prevalent in young-onset dementia (YOD).
• Effective, age-appropriate support services are crucial for managing these changes.
• Understanding the current support landscape for YOD behavioural changes in Australia is needed.

Purpose of the Study:

• To identify common YOD-related behaviour changes requiring support.
• To examine formal services accessed for YOD behavioural support.
• To explore the experiences of individuals seeking support for YOD behavioural changes in Australia.

Main Methods:

• Cross-sectional online questionnaire distributed to individuals with YOD and their caregivers.
• Data collected on types of behaviour changes, services sought, and support experiences.
• Thirty-six responses analyzed.

Main Results:

• 83% of participants reported YOD-related behaviour changes needing support, most commonly appetite/eating changes, agitation/aggression, and apathy.
• 76% sought formal support, primarily from Dementia Australia, Dementia Support Australia, and GPs.
• Support access was suboptimal, characterized by unclear pathways, long wait times, and 28% not accessing non-pharmacological strategies.

Conclusions:

• Individuals with YOD experience significant behaviour changes requiring support.
• Current formal support access pathways are difficult to navigate, slow, and do not ensure best-practice management.
• Enhanced, well-resourced formal services and clear access guidelines are essential for effective YOD behavioural support.