Dementia - taking care of carers

This information is for people who know someone who cares for a person with dementia.

Maybe your friend has become the carer for a parent or grandparent. Maybe your cousin’s wife has had a diagnosis of Alzheimer’s. It could be anyone: an estimated 1.7 million Australians are involved in the care of someone with dementia, so the odds are you know one of them.

Carers can tend to disappear from the radar of people they know, especially if the person they’re caring for has constant needs. It means they’re often tired and stressed, and because they’re so focused on someone else’s needs, their own needs don’t get met.

You can help. It can be hard to know how, especially if you’re not familiar with dementia or what’s involved in caring. That’s what this page is for. With a bit of new knowledge, you can become part of a carer’s support team and make sure they’re cared for too.

Learn about dementia

Dementia is often misunderstood. You can read Dementia Australia’s guide to what dementia is, the different diagnoses and how they can affect people.

Learn what the carer needs

Now you understand dementia a little better, you’re ready to offer support to your carer friend. No one knows what they need better than them, so the best thing you can do is ask. But to get an idea, read Dementia Australia’s guide for carers on taking care of themselves. It will help you better understand the experience of carers generally, what kind of help they might need and where you might fit in.

The most important thing you can do for a carer is listen to them. They’ll tell you what they need, even if it’s just a conversation, or a phone call now and then. Don’t try and make them accept help or convince them of something they don’t agree to.

Your job is to help them on their terms. If you can do that, you’ll make life easier for someone who has put the needs of another person ahead of their own.

Caring for dementia carers - looking after yourself

It’s okay for carers to spend time taking care of themselves. Not only because carers will be better able to care for others, but because they’re a person who deserves care.

For personal insights from carers about why and how they make time for themselves, watch Dementia Australia’s video.

Dementia - What have you learnt?

“I thought I would cope with this better. But, I hadn’t factored in the 24 hours a day, and that’s challenging.”

– Dementia caregiver

Hear what carers and people living with dementia say about their lived experience of dementia in this short video from Dementia Australia.

Learn how to talk about dementia sensitively

If you’re new to talking about dementia, it can be hard to know what the right thing to say is, and what might offend or upset people. Here’s a guide to talking about dementia. Be mindful that in some communities there may be stigma around dementia. Talking sensitively about dementia helps to remove stigma.

Learn about spending time with someone with dementia

Dementia affects everyone differently, but there are things you can do to learn how to spend time with a person with dementia, and to make your home easier for someone with dementia to visit. This is not only good for the person with dementia, it can help their carers too.

Visiting someone with dementia

Spending time with someone who has dementia and/or their carer, either in person or on a video call, matters a lot. It's about being there for them. Providing emotional support can have a real impact on their wellbeing.

Visit the Dementia Australia's Staying connected webpage.

Creating a dementia friendly home

A dementia-friendly home is a place where someone with dementia can visit safely and comfortably. This creates social opportunities for carers and the person they care for. Changes may only be practical in the homes of family and close friends, where regular visits are likely or can be encouraged. Find tips for creating a dementia friendly home on the Dementia Australia's Creating a dementia-friendly home webpage.

Where to get help

• Your GP (doctor)
• National Dementia Helpline - Get free, confidential, and expert telephone advice about dementia. Available 24/7, every day of the year (1800 100 500). Language interpretation services are available through the Translating Interpreting Service on 131 450.
• Dementia Australia Library Guides - a curated list of resources by Dementia Australia Librarians to support carers.