Self-care for carers

If you’re providing care for someone close to you who has dementia, it isn’t always easy to look after your own needs.

Because caring involves attending to someone with complex needs as a result of a medical condition, carers often end up feeling like they should put their own needs second, or even last. It can even feel like you don’t have any choice about it: the person you love has needs that are more important than yours, so you just have to go without.

But it’s okay to still have your own needs, and to spend time taking care of yourself. Not only because you’ll be better able to care for your loved one if you’re cared for, but just because you’re a person who deserves care, even as you care for someone else.

This page discusses some sensitive questions around the emotions, stresses, social experiences and physical aspects of being a carer. It’s okay to take your time reading, and to take a break if you need to.

Your emotional and mental health

Becoming a carer, whether it happens suddenly or over time, can come with some big, difficult emotions.

Carers report feeling anger, guilt, sadness, frustration, grief, and even resentment towards the person who has the condition and relief if they go to respite care.

The feelings can change over time, come and go, and sometimes be very intense. They can get complex, too: you can feel guilty about the other emotions you feel, for example.

You might experience a few, some or all of these emotions. Everyone’s experience is unique.

All of these feelings are common, and normal. There’s no such thing as a wrong feeling.

That doesn’t make them comfortable to experience, though. It’s okay to reach out to a counsellor or therapist: they will listen to you, help you understand and work through your emotions, and develop coping skills. It’s all confidential, so you safely say anything you need to.

Here are some things you can do yourself to help deal with big, complex emotions:

• Cry: it seems obvious, but allowing yourself time and space to cry helps get the emotions out, and triggers your body to release chemicals that will help you feel better.
• Keep a journal: a journal or diary is a private space just for you, where you can express anything at all, knowing no one will ever read it but you.
• Talk: if you have a trusted friend or family member, ask them if they can be a person you come to with big feelings. You could also try online carers’ forums or groups: it can sometimes be easier to talk openly if you’re anonymous and don’t know the other people. Finding people who know what you’re going through can be a very big comfort.
• Do things that make you happy: finding even a tiny amount of time to do little things for yourself can make a big difference. Five minutes to listen to your favourite music, do a crossword, pray or meditate, anything at all. Small moments of joy that are just for you add up.
• Tread carefully before making decisions: if you’re overtired or distressed, it can strongly affect your decision-making skills. Take your time with big decisions: if you find yourself suddenly tempted to make a big change, write it down and wait a day before coming back to it.
• Be kind to yourself: feeling these big emotions is understandable. It’s okay to let the feelings come and go without judging yourself for them.

Your physical health

The same things keep carers healthy that keep everyone healthy: nutrition, exercise, sleep and checking in with your doctor regularly. These pages are about ways to reduce your risk of developing dementia, but they’re good advice for everyone:

Avoiding physical injury

If you have to move or lift the person you are caring for, seek advice from your doctor or an allied health professional to reduce your risk of injury.

If you live together, making dementia-friendly modifications to your home will benefit you and the person you care for.

Have an Occupational Therapist visit your house to help create practical changes, which may enable the person you care for to require less physical support.

Social connection

Carers often report feeling socially isolated. It’s not always easy to go places and be socially active when you’re caring for someone living with dementia.

Family and friends can be a good social support, but those relationships can also be affected when you become a carer.

Dementia Australia has lots of ways you can make social connection through your role as a carer:

Asking for help

All of these ways to take care of yourself have one thing in common: they’re much easier to do with help.

Involving other people in your care helps you, and can be a terrific way to help the person with dementia stay socially active, too. A support team of family, friends, professionals and anyone else who you trust to take part can free up time for you, even if it’s just now and then, to look after your health and wellbeing.

Tips to try:

• Set up a care routine for the person with dementia that involves other people. 
• Suggest specific ways friends and family can help, like bringing a meal or helping you with housework or shopping.
• Ask a friend or relative to help with care to give you a few free hours.
• Speak with Dementia Australia about support services and programs to support you.

“I learned that people didn’t know what I needed, but they wanted to help. I learned I had to tell them point blank. I’d ring a friend and say ‘I just want to come over and vent all of my thoughts and frustrations to you for half an hour, and then change the subject. I don’t need you to do anything or try to say the right things, I just want to get things off my chest and then talk about the weather for a while. Can you do that for me?’ This way, my friends weren’t too overwhelmed by not being able to fix things.”

Building your support team

Caring for someone with dementia is easier if your support team understand dementia and your loved one’s needs.

Tips to try: 

• Explain how dementia affects their memory, thinking, behaviour and abilities.
• Send your support team members to the Dementia Australia website to learn more. 
• Ask people to come for short visits at first while you’re there.
• Suggest activities for a visit, like going for a walk, looking at a photo album or bringing a simple activity to do together.

We've made a guide you can send to people who might want to help but not know how:

Support groups

Throughout Australia, there are support groups for carers, in person and online. Many people find these group meetings offer comfort and practical assistance.

Led by a facilitator, each group brings together families, carers and friends of people with dementia. The facilitator is usually a health professional or someone with experience of caring for a person with dementia.

For further information, contact the National Dementia Helpline on 1800 100 500.

Taking a break

Regular breaks from your caring role mean you can rest, go out, get some things done, change your scenery and recharge.

For the person you’re caring for, it might also mean a chance to spend time with different people, making social connections as best they can.

There are lots of ways to take a break. It depends on what suits you both. If you’ve got a support team, you can ask one of them to come and give you a break for a while, maybe on a regular basis.

There’s also respite care. This form of care can feel scary or too hard, but many carers and people with dementia report positive experiences. See our guide to respite care: what it is and how to find it near you.

If the type of respite you want isn’t available in your local area, contact Dementia Australia or carer advocacy groups for advice on how to raise the issue of unmet respite needs. People often find that when respite needs are not met, informing local press and politicians can make a difference now and in the long term.