Support
for carers

Understanding and accessing respite

Respite provides a break for carers while ensuring the person living with dementia continues to receive the support they need. Taking a break from caring is an important part of maintaining your own health and wellbeing.

 You do not need to wait until you are exhausted or in crisis before considering respite.

Respite can look different depending on your needs. It may include:

• Someone coming into the home to provide care for a few hours a week, while you take a break

• Day or centre-based activities for the person you care for

• Overnight or weekend respite in a community setting

• A short stay in residential facility

• Emergency respite if you unexpectedly become unable to provide care

For most government-funded respite services, the first step is an assessment through My Aged Care. The assessment helps determine what services you may be eligible for and what type of respite might best meet your needs.

When looking for respite, it can be helpful to ask:

• Is the service dementia-specific?

• Can they support the person's individual needs?

• How long can respite be provided?

• What does it cost?

• Can I trial the service first?

• What happens if the person becomes distressed or refuses to attend?

Helpful resources

• My Aged Care – Respite care →

  Or call 1800 200 422

• Carer Gateway →

  Or call 1800 422 737

• Younger onset dementia and the NDIS

  If you live with younger onset dementia, you may also be able to access respite services funded through the National Disability Insurance Scheme (NDIS).

  Call 1800 800 110

Understanding and responding to changed behaviours

Some people living with dementia may experience changes in their behaviour or mood because of neurological changes.

Changes can include things such as increased confusion, agitation, anxiety, withdrawal, changes in sleep or changes in how someone responds to everyday situations.

Understanding why changes may be happening can help carers find ways to respond and support the person. Support is available to help you understand changes in behaviour, how they may affect daily life and strategies for managing them.

Helpful resources

• Dementia Australia – Mood and behaviour changes →

• Dementia Support Australia – Understanding behaviour changes →

Financial and practical support

Caring can have financial and practical impacts on both the person living with dementia and their carer. It can be useful to find out what financial assistance, concessions and other supports may be available.

Depending on your circumstances, support may include:

• Carer Payment

• Carer Allowance

• Carer Supplement

• Concession cards

• Assistance with aged care costs

• Financial counselling or advocacy

Eligibility varies, so it is important to check your individual circumstances.

Helpful resources

• Services Australia – Carer Payment →

• Carer Gateway – Financial support →

  Or call 1800 422 737

Planning ahead

A dementia diagnosis does not mean that decisions need to be made immediately, but planning early can help the person living with dementia have a say in their future care and make things easier for families later.

You may want to talk about:

• Future health and care preferences

• Who the person trusts to make decisions if they can no longer do so

• Legal and financial arrangements

• Advance care planning

• Driving and transport

• Future living arrangements

Helpful resources

• Dementia Australia – Planning Ahead →

• My Aged Care – Managing Legal Affairs →

Staying safe, driving and getting out and about

A diagnosis of dementia does not necessarily mean someone needs to stop driving straight away. In the early stages, some people may be able to continue driving safely, depending on how dementia is affecting their memory, thinking, judgement and other skills needed for driving.

It is important to regularly review driving with your GP and follow any medical or licensing requirements. Planning ahead can also help make the transition to alternative transport easier if driving becomes unsafe in the future.

You may want to consider:

• Driving and when to seek advice

• Transport alternatives

• Having a plan for emergencies

The Victorian Multi-Purpose Taxi Program provides subsidised taxi for eligible Victorians with a permanent disability or accessibility needs that prevent them from safely and independently using public transport. A dementia diagnosis alone does not automatically make someone eligible, however, some people living with dementia may meet the eligibility criteria depending on their individual circumstances.

A medical practitioner needs to provide information as part of the application process.

If you are an unpaid carer, you may be eligible for a Victorian Carer Card. Card holders can access concession fares on public transport, free weekend travel and free travel during National Carers Week. Carers can also register for free off-peak travel vouchers.

Helpful resources

• Dementia Australia – Driving and dementia →

• VicRoads – Medical conditions and driving →

• Victorian Multi-Purpose Taxi Program →

• Victorian Carer Card →

Considering permanent residential care

Many people living with dementia continue to live well at home for many years with the right support. Over time, however, care needs may change and living at home may become more difficult or less safe.

Permanent residential aged care can be a positive option when someone needs more support than can reasonably be provided at home.

 There is no single “right time” to consider residential care. It is a personal decision based on the needs, wishes and circumstances of the person living with dementia and those supporting them.

How do we access permanent residential care?

Step 1. Contact My Aged Care
The first step is to contact My Aged Care and request an aged care assessment for residential aged care. You can apply online or call 1800 200 422. A family member, friend or carer can help with the application.

Step 2. Have an assessment
An aged care assessor will arrange a time to talk with you, usually in the person's home. They will discuss the person's care needs, safety, support at home and future needs. The assessment determines whether they are eligible for permanent residential aged care.

Step 3. Receive your assessment outcome
If the person is approved for residential care, you will receive an assessment outcome and support plan. You can then begin looking for a suitable aged care home.

Step 4. Understand the costs
Once the person has been approved for permanent residential aged care, you will need to work out what they may need to pay. This is done through a financial or ‘means’ assessment with Services Australia.

Services Australia will need information about the person’s income and assets. This may include details about their Centrelink payments, savings, investments, superannuation and home. If they already receive a Centrelink payment, Services Australia may already have some of this information.

You can complete the assessment online through MyGov, or contact the Services Australia Aged Care line on 1800 227 475 if you need help. An Aged Care Specialist Officer can also provide information about the financial side of aged care.

Once the assessment is completed, Services Australia will provide a fee advice letter. This letter helps you and the aged care home understand what you may need to contribute towards the care and accommodation.

It is a good idea to complete this process before choosing an aged care home, so you have a better understanding of the costs involved.

Step 5. Visit and compare homes

It can be helpful to visit several homes before making a decision. Consider whether the home has experience supporting people living with dementia, whether it feels welcoming and comfortable, and whether it can meet the person's individual needs and preferences.

Step 6. Choose a home and plan the move
Once you have found a suitable home, the provider will work with you to plan the move and understand the person's routines, preferences, medications and support needs. 

Moving into residential care is a big change, but it can also be the beginning of a new chapter. Many people continue to enjoy meaningful relationships, activities and a good quality of life after moving into residential care.

Helpful resources

• My Aged Care – Aged care homes →

• My Aged Care – How to get assessed →

• My Aged Care – Connecting with aged care homes →

• My Aged Care – Understanding residential aged care costs →

• Services Australia – Residential aged care →

• Services Australia – Financial Information Service →

  Or call 132 300

Getting help when things suddenly change

If the person you care for suddenly becomes confused, unwell, unsafe or their care needs change significantly, it can be difficult to know who to contact.

Medical emergency: Call 000.

Urgent change in health or care needs: Contact the person's GP, treating team or My Aged Care.

If you suddenly become unable to provide care: Contact Carer Gateway on 1800 422 737 to discuss emergency respite.

If you are concerned about changed behaviour, Dementia Support Australia can provide advice and support.

Helpful resources

• Carer Gateway →

  Or call 1800 422 737

• National Dementia Helpline →

  Or call 1800 100 500

• Dementia Support Australia →

  Or call 1800 699 799