In Australia, multiple sclerosis (MS) is on the rise, with the number of people living with the condition soaring to 37,756 in 2025, a staggering 77% increase since 2010.
This chronic neurological disease, which typically strikes in early adulthood between the ages of 20 and 40, affects the central nervous system, leading to a wide array of symptoms, from fatigue and mobility issues to cognitive challenges. As healthcare advancements extend life expectancy, more Australians with MS are ageing with the condition, yet many are entering residential aged care facilities far earlier than the typical resident.
With the median age at admission to permanent residential aged care sitting at 85 years, people with MS often find themselves in these settings in their 60s or even younger, due to progressive disability rather than age-related decline alone. This “hidden” cohort highlights a critical unpreparedness in Australia’s aged care system for younger-onset neurological conditions like MS, where specialised care is essential but often lacking.
MS is a lifelong condition that evolves over time. While it usually begins with relapsing-remitting episodes, many progress to a secondary progressive phase where disability accumulates steadily. Improvements in treatments mean that around half of those living with MS are now aged 50 or older, but this longevity comes with complexities.
Comorbidities such as high blood pressure, anxiety, and depression, which are common in older people with MS, can worsen outcomes and accelerate the need for support.
Statistics paint a concerning picture. While the overall aged care admission age hovers in the mid-80s, people with disabilities like MS face barriers that lead to premature institutionalisation. The Australian Government has committed to reducing the number of under-65s in residential aged care to near zero by 2025, with figures dropping to 880 as of mid-2025.
However, for those with progressive MS, the transition from community living, often supported by the National Disability Insurance Scheme (NDIS) until age 65, to aged care can be abrupt and poorly coordinated. Delays in home care packages, with wait times up to 12 months and more than 87,000 people on waiting lists, exacerbate this issue, pushing individuals into residential facilities earlier to avoid hospitalisation or unmanaged decline.
MS Australia notes that inadequate supports for older people with disabilities risk quicker progression, loss of independence, and early aged care entry.
This early entry is not just a statistic. It reflects real human stories. A person diagnosed with MS in their 30s might manage independently for decades with disease-modifying therapies (DMTs), but as mobility wanes and fatigue intensifies, everyday tasks become insurmountable without round-the-clock assistance, assistance that community supports may not fully provide.
Once in residential aged care, people with MS encounter a system designed primarily for frailty and dementia, not the fluctuating, neurological-specific needs of MS. Staff training emerges as a major shortfall. Australia’s aged care workforce, predominantly personal care workers, often lacks specialised knowledge in neurological conditions.
A 2024 Aged Care Workers Survey revealed that while many hold basic qualifications such as a Certificate III in Individual Support (Ageing), there are significant gaps in understanding complex needs such as MS symptom management.
Key areas of deficiency include:
Mobility aids: MS can cause spasticity, weakness, and balance issues. Staff may not be trained in the proper use of assistive devices such as walkers or wheelchairs, leading to falls or improper handling that exacerbates symptoms.
Bladder management: Urinary dysfunction affects up to 80% of people with MS and may require catheterisation or timed voiding. Without targeted training, infections or discomfort can go unmanaged.
Fatigue: This hallmark symptom is not just tiredness. It is debilitating and unpredictable. Aged care routines often overlook the need for flexible scheduling, rest periods, or energy-conserving strategies.
Broader workforce issues compound this problem. Shortages of allied health professionals in aged care and disability sectors stem from limited exposure during training and negative perceptions of these fields.
In neurological care specifically, there is a noted lack of MS-specialist nurses, with varying experience levels hindering consistent support.
These gaps not only affect resident wellbeing but also increase hospital readmissions and strain resources.
Addressing these challenges requires systemic change. Mandatory neurological training modules for aged care staff could bridge knowledge gaps, covering MS-specific topics such as symptom recognition, DMT monitoring, and holistic interventions.
Partnerships with organisations such as MS Australia could deliver workshops, online modules, or on-site specialist visits, similar to existing programs for dementia care.
Enhancing multidisciplinary teams is also key. Integrating physiotherapists, occupational therapists, and MS nurses into aged care routines could promote brain-healthy lifestyles, including exercise, cognitive stimulation, and anti-inflammatory diets, to build functional reserve and slow progression.
Improved NDIS-to-aged care transitions, with seamless funding and assessment processes, would help prevent premature entry. Pilot programs trialling these approaches, potentially incentivising neurologically trained workers, could deliver cost savings by delaying institutionalisation.
Australia is not alone in grappling with this issue, and other countries offer valuable lessons.
In the United States, the National MS Society provides comprehensive resources for advanced MS care in nursing homes, emphasising patient-centred models that include family and community support.
Their framework focuses on sustaining care through education on life planning, hospice integration, and symptom management, reducing isolation for residents with progressive conditions.
The United Kingdom’s MS Society champions models of best practice, evaluating innovative services such as integrated multidisciplinary clinics in care homes.
One standout initiative includes volunteer-led support for practical tasks and companionship, easing carer burdens and enabling personalised care plans that respond to MS fluctuations.
In Canada, surveys of health providers have led to enhanced models of MS care, incorporating telehealth for remote neurological consultations in aged care facilities.
This approach reduces travel burdens for residents and ensures timely specialist input, particularly for monitoring DMTs in older adults.
Across Europe, a consensus from the International Advisory Committee on Clinical Trials in MS advocates for age-specific management, including deprescribing guidelines and brain-health strategies.
Countries such as Belgium emphasise multidisciplinary teams for personalised care, identifying needs such as sequential DMT selection and monitoring.
The European Brain Council’s RETHINKING MS initiative promotes comprehensive educational materials and integrated health and social care to support brain-healthy lifestyles.
These examples underscore the value of collaboration, education, and integration, principles Australia could adopt to better support its MS residents.
As MS prevalence continues to climb, driven by improved diagnostics and longer survival, Australia’s aged care homes must evolve. The hidden residents living with younger-onset neurological conditions deserve facilities equipped not just for ageing, but for living well with MS.
By investing in staff training, seamless care transitions, and international best practice, aged care can become a place of empowerment rather than mere refuge. For organisations such as MS Australia and policymakers alike, the time to act is now, before this growing wave becomes overwhelming.
