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

Abstract

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.

Young‐onset dementia diagnosis, management and care: a narrative review

“…However, recent research suggests that people with YOD and their families continue to have difficulty accessing the NDIS and finding suitable services with which to spend their funding. 61 Post-diagnostic care for younger people with dementia should be tailored, flexible, affordable and provide meaningful engagement. 60 An assessment of the specific disabilities experienced by the person will help to guide non-pharmacological treatment and care.…”

“…The transferral of funding arrangements for social and allied health care services for YOD to the National Disability Insurance Scheme (NDIS) in 2017 was therefore welcomed by people with YOD and their families. However, recent research suggests that people with YOD and their families continue to have difficulty accessing the NDIS and finding suitable services with which to spend their funding 61 …”

Recent research advances in young-onset dementia

“…A “case manager” or designated professional who could assist individuals with dementia and their family navigate the often challenging healthcare pathway would help with person-centred and timely care [29,34]. Community supports, programs and activities have to be age-specific [29], but accessing funding for support could be unnecessarily complicated, with a lack of appropriate activities and understanding about what a younger person with dementia might need [36 ▪ ].…”

Cross‐sector learning collaboratives can improve post‐diagnosis care integration for people with young onset dementia

“…However, our recent research has identified continued barriers to accessing best-practice care for people with YOD (Cations et al, 2022). People with YOD and their families report that the aged, disability and healthcare sectors each have strengths and weaknesses, but that service fragmentation limits access to the benefits of each.…”

“…In Australia, since the 1980s long‐term public dementia care has been delivered through the nationally funded aged care sector with input from the healthcare system on health‐related aspects where needed. In 2016, as part of a broader restructuring of services with the introduction of a National Disability Insurance Scheme (NDIS) for people aged under 65 years, care for people with YOD (but not for older people with dementia) was moved to the disability system (Cations et al, 2022). This was consistent with advocacy efforts from people with YOD, their families and care providers who argued that the strengths‐based, capacity building, and individualised funding structure of the disability system was most suitable for their needs (Neurological Alliance Australia, 2017).…”