What does caring for someone with dementia involve?

Caregiving can be both rewarding and challenging. Some carers are in paid roles. Often, carers are unpaid family members or loved ones of the person living with dementia.

When you are caring for someone with dementia, you may be managing many things for them, like:

• making sure they take the right medicines at the right time
• arranging shopping or meals
• helping them with bathing, toileting or incontinence

These responsibilities may increase over time, as the person's needs change.

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

Your role as a carer may be on top of your own commitments like working, studying and caring for other people.

All these factors can make caregiving physically, emotionally and economically demanding. You may find yourself putting lots of time and energy towards caring for the person with dementia.

It's very important to look after yourself so that you can best care for the person with dementia in your life.

How can I manage the challenges of being a carer?

When you are physically and mentally healthy, you can give better care and keep caring for longer. It's important to look after yourself to prevent becoming ill or too stressed to keep caring for someone.

There are ways you can take care of yourself so you can be there for your loved one, including:

• having a healthy diet
• getting regular exercise
• getting enough sleep
• keeping connected with friends

Try to manage your time well by getting into a regular routine. Allow enough time to get through all that needs doing. It's important you also take time to relax.

You can develop a schedule that includes help from support services, friends and family members.

What support is available to a carer?

If you are a carer, you can get support in this important and demanding role.

Carers can get a wide range of help, including:

• peer support groups
• counselling
• respite care

It's important you ask for help — no one will know you need it unless you ask. Friends and family can be a great support. When they offer to help, accept it. This might mean:

• bringing a meal
• helping with the housework or shopping
• arranging appointments or helping to manage paperwork

There are many carer support groups throughout Australia. These groups often meet to talk about experiences that may be similar to yours. Attending these meetings may be comforting and helpful.

There are many organisations that can help. More information on resources and support can be found at the end of this page.

Financial support

If you are caring for someone with dementia, you may be able to receive financial support. This may include payments such as a carer allowance or carer payment. You can read more on the Services Australia website.

What is respite care?

Respite care is when someone else takes on the caring responsibilities for a while. This gives you a break.

Respite care can be provided at home, or in care centres.

Long term care centres may sometimes allow overnight stays for a short period of time, to give carers a break. These are not usually covered by insurance or Medicare.

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

In-home care

In-home care includes a range of services given at the home of someone with dementia, including:

• 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

Adult day centres

Adult day centres can help both the person living with dementia and you.

Adult day centres also give people with dementia an opportunity to socialise and do activities like music and art programs.

The person you are caring for may not want to go to a day centre at first. This is normal. They will often look forward to going once they start.

These centres offer different services, such as:

• counselling
• personal care
• behaviour management
• health services

What long-term dementia care options are available?

There may come a time when a person with dementia will need more than short term care or home care.

During the middle stages of dementia, you might feel the person needs supervision all the time to stay safe. As the disease 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 housing may be appropriate for people in the early stage of dementia.
• Assisted living typically offers a combination of housing, meals, supportive services and health care.
• Nursing homes provide around-the-clock care and long-term medical treatment.
• Alzheimer's special care units group people with dementia together on a floor or a unit within larger long-term care homes.

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

The best thing to do is to get information about your options and move forward. This is important to make sure the person gets the care they need.

What is hospice care?

Hospice care focuses on comfort and dignity at the end of life. In the final stages of dementia, hospice care can support people with dementia and their families.

The main goal is to manage pain and other symptoms during the last months of life. It focuses on giving comfort. People can get hospice care at home or in a nursing facility.

How can I access care?

Some aged care services are subsidised by the government. To access these services, the person with dementia must be assessed by an Aged Care Assessment Team (ACAT). This assessment will determine the level of care they need.

You can apply for an ACAT assessment and find more information through the My Aged Care website. You'll need your Medicare card to apply.

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

These things can change over time. The person may need more care in the future, or you might not be able to keep caring for them at home.

When choosing care, it's important to consider what you and the person need now and in the future.

When choosing care, you should ask the person you care for what they would like. You can also talk with their doctor and other family members about the options available.

Asking your support group about care options can also be helpful, as they may have been through the processes.

How much care the person with dementia needs

How much care a person needs depends on their health needs, safety needs 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. Consider if the person you care for engages more with activities, or spending time with other people.

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

Resources and support

As a carer, there are many support organisations that are tailored to help you in your important and demanding role:

• Call the National Dementia Helpline on 1800 100 500 for information about carer support groups.
• Explore the Carer Gateway website to get practical tips and support for carers.
• Explore the My Aged Care website for support and information for carers.
• Check support available through National Disability Insurance Scheme (NDIS) and Veterans' Home Care.
• Carer Conversations provide free face-to-face or online support groups for carers of someone living at home with frontotemporal dementia. To learn more, go to the Dementia Support Australia website.

To learn more about dementia you can visit:

• the Dementia Australia website
• the Alzheimer's Association website

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 24 hours a day, 7 days a week.