Caring for a person living with dementia can be both rewarding and challenging. The role of caring can bring joy, personal growth, and a feeling of being close to family. However, it can also be stressful. You may experience frustration, grief, fatigue, social isolation, and financial pressure. Many carers also experience guilt at not being able to do enough.
Understanding more about dementia and reaching out to support services can help you in your carer journey. Here you’ll find a range of information and resources that can support you.
If you feel overwhelmed, remember that you are not alone. Caring for someone is not easy and there are many services available to help you in your role.
Counsellors can provide invaluable support, advice and practical assistance to carers and people living with dementia.
The following organisations provide free counselling services:
- Carer Gateway provides counselling specifically for carers. Counsellors are available over the phone from 8am to 6pm, weekdays.
- Dementia Australia provides individual and family counselling for both carers and people living with dementia.
Learning more about dementia – and how it impacts the person you care for – can support you in your caring role.
There are a range of education programs which cover topics like:
- coping with changes in behaviour
- making your home dementia–friendly
- dealing with grief following a dementia diagnosis.
If you want to learn about dementia in your own time, online learning (including webinar sessions and courses) can provide a flexible option.
Dementia Australia runs webinars for both carers and people living with dementia.
Webinars cover topics like:
- understanding dementia
- dealing with behavioural changes
- learning effective communication methods
- the process around moving into an aged care home.
Carer support groups
Carer support groups can offer you a safe place to talk about your role as a carer. They can put you in touch with other carers so you can share advice and tips to support each other.
Respite care can allow you to have a break while someone else looks after the person you care for. There are different types of government-subsidised respite services available. This includes day and overnight respite and short stays in residential aged care homes.
Read more about planned and emergency respite services.
Changes in behaviour
It is important to understand how dementia can affect a person’s behaviour. Knowing what to expect can help you plan your care.
Changes in behaviour can include:
- reduced or confused communication
- anxious or agitated states
- hallucinations and false ideas
- loss of inhibition
As a carer, these behaviour changes may upset you, but remember that they are not your fault. And often there are things you can do to help manage or reduce these symptoms. Visit the Dementia Support Australia website or call them on 1800 699 799 (24 hours a day) to get help coping with behaviour change.
Changes in needs
As you look after a person living with dementia, their care needs can change.
You may notice changes in their:
- communication needs
- eating and nutrition needs
- hygiene needs
- sleeping habits
- memory abilities
- oral and dental health
If any changes occur, you may feel unsure about what to do. For information about how to support changing needs, visit the Dementia Australia website. If you are concerned about any changes you notice, speak to the doctor looking after the person you care for.
As dementia progresses, you'll likely meet many health professionals involved in the care of your family member or friend. Think of these people as part of your team.
Some tips to help you work with health professionals:
- Be sure to explain that the person you care for has dementia.
- Have a list of key questions to ask them. You can find some suggested questions in Diagnosis, treatment and care for people with dementia: A consumer companion guide.
- If you don’t understand something the doctor tells you, don’t be afraid to ask for a clearer explanation.
Making legal and financial decisions can get harder as dementia progresses. It's important to help the person you care for get their affairs in order at the earliest time possible. This ensures they have a say in planning for their future.
Planning ahead for the person you care for means you should consider:
- arranging for an enduring power of attorney or an enduring guardianship. You can find out more about this on our legal information page.
- making sure their personal preferences are known through an Advance Care Directive.
- checking that their will is up to date.
Find out more about legal planning and dementia on the Dementia Australia website.
There are a few ways you can help the person you care for with their financial planning. This can include setting up meetings with their bank manager, an accredited financial adviser, or a lawyer. Any (or all) of these people will work out who will help manage their money if needed. They will also help them decide what arrangements they may need to make.
Read more about the options you have for seeking help and guidance on our financial support and advice page.