What does caring for someone with dementia involve?

Caregiving can be both rewarding and challenging. Some carers are in paid roles, but often carers are family or loved ones of the person with dementia. This is often unpaid. It involves managing many things every day. In some cases, this may include working or studying while you care for someone with dementia.

Caregiving can be physically and emotionally demanding, so you need to look after yourself. You may feel you need to give more time and energy as the person with dementia needs more care.

Caring for someone with dementia may involve different tasks. These may vary or increase over time, as the person’s needs change.

Examples of responsibilities include making sure that the person you care for takes the right medicines at the right time, arranging shopping or meals, or helping the person with bathing, toileting or incontinence.

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

Learning about dementia can be helpful. It can also help to talk with family, friends and other people in a similar situation.

What support is available to a carer?

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

Being a carer can become more difficult over time. You may find it hard to balance your needs with those of your family and the person with dementia.

Carers can get a wide range of help — from counselling and peer support groups to respite care, home help and equipment.

It is 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.

Suggest ways that friends and family can help, such as by bringing a meal, helping with the housework or shopping. Even those who live far away can help with arranging appointments or managing paperwork.

In-home care

In-home care includes a range of services given at the home of someone with dementia to help them keep living there. Some examples of services include:

• companion services — helping 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 — wound care, injections and other medical needs
• transportation
• minor home maintenance and repairs.

There are many organisations that can help, such as the National Disability Insurance Scheme (NDIS), My Aged Care and Veterans’ Home Care.

There are many carer support groups throughout Australia. You might find comfort and practical help by attending these meetings.

FIND A HEALTH SERVICE — The Service Finder can help you find doctors, pharmacies, hospitals and other health services.

What is respite care?

Respite care is when someone else takes care of the person with dementia for a while, so that you can have a break.

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

Carer gateway is a great resource with more information and practical tips for carers and others can be found below.

What dementia care options are available?

Adult day centres

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

Adult day centres also give people with dementia an opportunity to socialise and do supervised activities. Although they may resist going at the beginning, they will often look forward to going once they start.

These centres offer different services, such as counselling, health services, personal care and behaviour management. Consider your and the person with dementia’s needs when choosing a centre.

While the person you care for is at the centre, you have time for yourself. If you work during the day, an adult day centre can also help you better balance your job with caregiving.

Long-term care

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

During the middle stages of dementia, you might feel the person needs supervision all the time to stay safe. As the disease goes into the late stages, the person may need even more intense support.

If a person with dementia needs more than home care, a long-term care setting may be best.

There are different types of care, depending on each person’s needs. These can include:

• Retirement housing — this may be appropriate for people in the early stage of dementia.
• Assisted living — this typically offers a combination of housing, meals, supportive services and health care.
• Nursing homes — these provide around-the-clock care and long-term medical treatment.
• Alzheimer’s special care units — they 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.

Most families who have done this say that the best thing to do is to get information and move forward.

The decision is based on making sure the person being cared for gets what they need.

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 at home or in a nursing facility.

How do I know which option is best for both of us?

Most people who need care will need it for a long time.

Understanding what might happen in the future will help you to plan. You might also want to think about the different stages you may go through in your caring role.

The person you care for should be respected, When possible, they should choose how they live, how they are treated and the kind of services they want. To make the best decisions, ask the person you care for what they would like.

You can talk with your family, doctor or other carers in a support group about the options. Talking to people who have been through this before may make it easier for you to plan.

It is important to know that things are likely to change over time, and that the person may need more care in the future, or you might not be able to keep caring for them.

The person may need special aids and special equipment, extra nursing care or home help. They may also need to move into residential care or need palliative care services.

Things to consider when choosing the right care for a person with dementia include:

• Safety — will they be safe? Do they need supervision for some activities?
• Health — do they need specialised medical care?
• Care — do they need more care than they are currently receiving? Are you able to give the care they need?
• Social — are they engaged in meaningful activities during the day or would they benefit from spending more time with other people?

How can I manage the day-to-day stresses of being a carer?

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

There are tips that can help you care for your loved one. Try to manage your time well. Do this by keeping a regular schedule, having a good routine and allowing enough time to get through all that needs doing.

When you have a schedule, you can more easily see what you can manage yourself, and what tasks support services or other family members can do.

Looking after yourself means keeping a healthy diet, getting regular exercise, enough sleep, and maintaining your hobbies and social connections.

Be realistic about what you can expect from yourself. Appreciate that taking care of yourself is really better for everybody.

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 (Free-call 1800 100 500) for information about carer support groups
• Explore the Carer Gateway website to get practical tips and support for carers
• Explore the Dementia Australia website to learn more about dementia
• Check support available through National Disability Insurance Scheme (NDIS) and My Aged Care and Veterans’ Home Care