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, friends, or other important people. However, it’s normal to feel stress, frustration, fatigue, grief and social isolation. Many carers also experience financial pressures and guilt from feeling they aren’t able to do enough.
If you’re a carer for someone living with dementia, it can be helpful to learn more about the condition. There are resources and support services available to help you in your role. Remember, you are not alone.
What support is available?
Counselling
Counsellors can provide advice and practical assistance to carers and people living with dementia.
The following organisations provide free counselling services:
- Carer Gateway is a national network of providers who help carers access in-person, phone and online support services.
- Dementia Australia provides individual and family counselling for both carers and people living with dementia.
Education
Learning more about dementia – and how it impacts the person you care for – as a carer.
Education programs can help you:
- cope with changes in behaviour
- make your home dementia-friendly
- understand and manage grief following a dementia diagnosis.
To learn more, visit Dementia Australia.
Webinars
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.
For information about support groups in your area, visit the Dementia Australia website or call the National Dementia Helpline on 1800 100 500.
Carer respite
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.
What can a person living with dementia experience?
The symptoms and experience of dementia can vary depending on the person, the type of dementia and the stage of cognitive decline.
Changes in behaviour
It is important to understand how dementia can affect a person’s behaviour. Knowing what to expect can help you plan their care.
Changes in behaviour can include:
- agitation or aggression
- anxiety
- apathy, or a lack of emotion
- hallucinations
- being up at night
- personal care
- wanting to leave
- loss of inhibition.
As a carer, these behaviour changes may upset you, but remember that they are not your fault. 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).
Changes in needs
It is normal for the care needs of people living with dementia to change.
As a carer, you may notice changes in their:
- communication needs
- eating and nutrition needs
- hygiene needs
- continence
- sleeping habits
- memory abilities
- oral and dental health.
If any changes occur, you may feel unsure about what to do next. To learn more about how to support changing needs, contact Dementia Australia website.
If you are concerned about any changes in the needs of the person you care for, you should speak to their doctor.
Working with health professionals
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:
- Make 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 them to explain it again using simpler terms.
Making financial and legal decisions
Making legal and financial decisions can get harder as dementia progresses. As a carer, you can support someone with dementia to consider their legal and financial affairs, including future care needs. It’s a good idea to do this as early as possible to ensure the person living with dementia has a say in planning their future.
Legal planning
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.
Financial planning
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.