What does caring for someone with dementia involve?

When you are a carer for someone with dementia, you may be helping them with many activities, such as:

• taking the right medicines at the right time
• arranging shopping or meals
• bathing, toileting or incontinence (bladder or bowel accidents)
• keeping them safe

These responsibilities might grow, as the person's needs change over time.

Some carers are in paid roles. Often, carers are unpaid family members or loved ones of the person living with dementia.

Depending on your role and your relationship with the person you care for, you may have different legal rights and responsibilities. This might also change over time as the health of the person you care for changes.

Your role as a carer may be on top of your own commitments like caring for your family, work or study.

You may find that you use lots of your time and energy caring for the person with dementia.

All these things can make caregiving demanding physically, emotionally and financially.

How can I manage the challenges of being a carer?

To manage the challenges of being a carer, looking after your health and wellbeing is very important.

There are ways you can take care of yourself and be there for the person you care for, including:

• having a healthy diet
• getting regular exercise
• getting enough sleep
• staying connected with friends
• having breaks from the caring role
• looking after your physical health
• having a regular routine

When planning your schedule, include help from support services, friends and family members where possible.

What support is available to carers of someone with dementia?

Support for carers of someone with dementia includes peer support, counselling, financial payments and respite care.

Family and friends may also be able to support you. Ask for help when you need it — others may not realise you need support unless you tell them. When friends and family can help, accept their support.

Peer support

Carer peer support groups often meet to talk about experiences that may be like yours. Attending these meetings may be comforting and helpful. If you can't attend in person, online peer support is available.

Online forums also allow carers to share their experiences and ask for advice and recommendations.

You can find information on peer support through organisations, such as Carer Gateway and Dementia Australia.

Counselling

It's normal to feel a range of emotions as a carer. Talking to a counsellor can help you manage these feelings and find ways to cope. Organisations such as Dementia Australia offer counselling in person, online, by phone and by video call.

Financial support

If you are caring for someone with dementia, you may be able to get financial support from the government. To apply for financial support, contact Services Australia.

What support is available when I can't care for my loved one?

Respite care is when a professional carer takes on the caring tasks for a while. This gives you a break.

Respite care can be provided at home or in a care centre.

Long-term care centres sometimes allow overnight stays for a short period of time to give the regular carer a break. There can be wait times for these services — plan ahead if you can and check if local centres offer respite care and how to book.

Government-funded respite programs are available. Visit My Aged Care to find out more about these programs.

It's very important to give yourself time to do everyday activities and to look after yourself. Taking breaks will make you a better carer.

In-home care

In-home care includes services given at the home of someone with dementia, such as:

• companion services — help with supervision or recreational activities
• personal care services — help with bathing, dressing and toileting
• homemaker services — help with preparing food, shopping and housekeeping
• skilled care — help with medicines and other medical needs

Support at Home is a government program that helps to provide access to in-home care services. You can find more information about this program through My Aged Care.

Centre based

Centre-based care offers care for a certain period during the day. This type of care gives you a break and people with dementia an opportunity to socialise and to take part in activities.

The person you are caring for might not want to go to a day centre at first. This is normal. Once they start this care, they will often look forward to going.

You can find out more about this type of care through My Aged Care.

What long-term dementia care options are available?

There may be a time when a person with dementia needs more care than can be provided at home or through short-term support.

During the middle stages of dementia, the person may need supervision all the time to stay safe. As dementia progresses, the person may need even more support. A long-term care setting may be best.

There are different types of care, depending on each person's needs.

• Retirement villages may be appropriate for people in the early stage of dementia.
• Low-level residential aged care typically offers a combination of housing, meals, supportive services and health care.
• High-level residential aged care provides around-the-clock care and long-term medical treatment.
• Dementia special care units group people with dementia together on a floor or a unit within larger long-term care homes.

Deciding on long-term care may be a stressful experience for families. Some carers may feel guilty and wonder if they are doing the right thing. These feelings are normal.

Get information about your options and talk them through with trusted family or friends. This can help make sure the person gets the care they need.

When can I introduce palliative care?

You can introduce palliative care at any stage of dementia. Palliative care is not just for people at the end of life. It can start at any time from the moment someone is diagnosed with a long-term illness.

Palliative care is a type of specialised medical care for people living with serious, chronic, life-limiting or terminal illness.

How can I access care for a person with dementia?

You or the person with dementia can apply for government-supported care through My Aged Care. The first step is getting an assessment to determine the level of care needed.

You can apply for an assessment online through My Aged Care or by calling My Aged Care on 1800 200 422. You will need a Medicare card to apply.

You can also start your application by booking a face-to-face appointment with an Aged Care Specialist Officer (ASCO) through Services Australia.

The National Disability Insurance Scheme (NDIS) provides funding for eligible people aged under 65. Visit the NDIS website to check whether the person you care for can receive NDIS funding.

How do I know which care option is best?

The type of care that is best for the person you are caring for will depend on:

• their personal preferences
• their financial resources
• their overall health and needs
• what dementia support they need

When choosing care, consider:

• what you and the person need now, and in the future
• that the person may need more care over time
• that you may no longer be able to care for them at home
• asking your loved one what care they would like
• speaking with their doctor and family members about the options available
• seeking recommendations from a peer support group

How much care does a person with dementia need?

How much care a person needs depends on their health, safety and social needs.

The person you are caring for may need specialised care. This can include:

• extra nursing care
• supervision for some activities
• hospice or palliative care services

Different people may have different social needs. The person you care for may engage more with activities, or they may like to spend more time with other people.

Think about if they need more care than they are currently getting, and if you can provide the care they need. This can help you choose the best care for them.

Resources and support

If you are caring for someone with dementia, organisations that can support you include:

• Dementia Australia has more information about dementia and support for carers. Call them on 1800 100 500 or chat online.
• Carer Gateway has practical tips and support for carers. Call on 1800 433 737.
• My Aged Care has information about how to get assessed for support services and support for carers. Call on 1800 200 422. This includes Support at Home services.
• Home support is also available through Veterans' Home Care. Call on 1300 550 450.
• Dementia Support Australia has factsheets for carers and online support groups for carers. Call Dementia Support Australia on 1800 699 799 or chat online.

Languages other than English

Visit Health Translations for translated information about caring for someone with dementia and respite care.

Information for Aboriginal and Torres Strait Islander peoples

Caring for Spirit has information about dementia and caring for someone with dementia.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.