Many families wish to continue to support their person at home, as residential aged care is not usually tailored to the needs of people with younger onset dementia and often only accessible from age 65. To make living at home sustainable, it’s important to plan for the future, put the rights supports in place, and protect yourself from becoming exhausted by caring responsibilities.
Sometimes, living at home may become unsafe or unmanageable due to physical, cognitive, or behavioural changes. Planning ahead can help prevent crises, such as falls or other emergencies, and ensure that supports are in place before they are urgently needed. Accepting help or respite can be emotionally difficult, especially when there is pressure to keep caring at home, but support can make a significant difference for both you and the person you care for.
Residential aged care (RAC, or ‘nursing home’) is generally only accessible from age 65 through the aged care system (My Aged Care). Under the Australian Government’s Younger People in Residential Aged Care (YPIRAC) Strategy 2020-2025, the aim is for no one under 65 to live in residential aged care, and for younger people to be supported in more age-appropriate housing.
For people with young-onset dementia, some may be eligible for disability-based housing and support options, including:
- Supported Independent Living (SIL): provides staffing for daily support for a small group, including help with personal care, cooking, and cleaning, while encouraging them to develop their personal skills and live as independently as possible.
- Specialist Disability Accommodation (SDA): provides physical housing designed or adapted for people with high support needs who require extensive daily care.
To find out more, your NDIS planner or local area co-ordinator will be able to discuss your needs. There is an assessment process that requires evidence of need. Different providers deliver SIL and SDA services across Australia.
Even if the person you support continues living at home, it can help to explore SIL or SDA options early. This allows you to understand what’s available and gradually introduce support. You might start by trialling occasional SIL respite or visiting SDA homes to see what would work best.
Talking about the possibility of moving into SIL, SDA, or other supported housing can be difficult, but useful. Having these conversations (involving a counsellor or social worker if needed) can help reduce guilt, allow the person living with dementia to express their preferences, and give families time to prepare.
Other options may be available. The Younger People in Residential age Care System Co-ordinator Program is an Australia-wide program that provides case management for eligible people who have complex care needs, are ineligible for NDIS or other Australian Government aged care services, and have difficulty in managing to navigate systems of care and support.
Planning ahead also means considering legal, financial and medical practicalities. Pages in Section 5 Making plans and decisions details what you need to have in place. Ensuring a will, enduring power of attorney, and advance care directives are prepared early can provide peace of mind and ensure decisions can be made when your loved one is no longer able to do so.
Planning for the future
Include the person with dementia in conversations about planning for the future. Consider legal, financial, medical and future care and accommodation practicalities in your discussions.
Photo: Volodymyr Hryshchenko via Unsplash.
