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Post-diagnosis young-onset dementia care in the National Disability Insurance Scheme

Objective: Post-diagnosis service delivery for young-onset dementia (with onset prior to 65 years) recently moved to the disability system in an attempt to address systemic barriers to best practice in aged care. The objective of this study was to examine experiences and satisfaction with disability services so far among people with young-onset dementia and their care partners and identify strategies for service and system improvement. Methods: The 151 participating Australians living with young-onset dementia or providing informal care to a person with young-onset dementia were recruited via social media, advocacy bodies and specialist medical clinics. A cross-sectional online survey asked participants to provide a timeline of their interactions with the disability system so far and rate their satisfaction with the disability system, aged care and disability services. Results: Participants reported a mean age at symptom onset of 55 years. In all, 53% were diagnosed with Alzheimer’s disease and 25% were diagnosed with frontotemporal dementia. Sixty percent had received an approved plan from the National Disability Insurance Scheme, although 3% were rejected. More than 27% waited longer than 6 months to receive their plan, and half waited at least a month post-approval to access services. Less than 30% agreed that the National Disability Insurance Scheme understands dementia, and fewer than half felt that the process of accessing National Disability Insurance Scheme funding is easy and fast enough. Nonetheless, respondents remained overwhelmingly in favour of young-onset dementia services remaining in the disability system rather than in aged care. Conclusions: While people with young-onset dementia and their care partners strongly agree with their inclusion in the National Disability Insurance Scheme, a relatively low level of experience with dementia in the disability workforce and a lack of integration with the healthcare and aged care systems continue to create important barriers for accessing the services they need.