Lived experience perspectives about gaps and barriers in services for those living with, and those providing care, for people with young-onset dementia in Australia: Findings from the Joint Solutions Project

Introduction: Young-onset dementia (YOD) is a dementia where symptom onset occurs at less than 65 years of age. There has been increased recognition of YOD with improved diagnostic assessments and the introduction of the National Disability Insurance Scheme (NDIS). The Joint Solutions project aimed to evaluate the gaps and barriers along the pathway of care in Australia from a range of stakeholder perspectives to investigate access to services from those who have YOD and those who provide care for them. Methods: A cross-sectional quantitative approach was used, with questionnaires designed in consultation with general practitioners (GPs), clinicians, people with YOD, caregivers and community service providers. Results: 313 people responded, including 45% lived experience (n = 33 people with YOD; 105 caregivers), 30% clinicians (n = 7 GPs; n = 86 clinicians), and 25% community providers. All states of Australia were represented, with Victoria having the largest proportion of respondents (39%). Time to diagnosis was 12 months from symptom onset for 70% of caregivers. Up to 90% of caregivers reported their family member with YOD had cognitive testing and neuroimaging. Access to age-appropriate post-diagnostic support varied, with 40% of caregivers reporting their family member received allied health and psychological support. There was limited information provided on employment, driving, legal and financial issues. Sixty percent of people with lived experience stated they had difficulties accessing the NDIS. Discussion: There is improvement in the diagnosis of YOD but access to and availability of post-diagnostic support varies. More work is needed to improve equity and collaboration between service providers and clinicians and those affected by YOD.