Looking after someone with dementia? How to take care of yourself

It is very important that families and carers look after themselves while they are caring for someone with dementia. Here are some ways to manage stress and to ensure that support is there so that you can continue in your caring role.

The physical and emotional demands of caring for someone with dementia can be high. As the amount of care needed increases, more time and energy will be needed from you. It is important that you take care of yourself or these demands will wear you down. If you are worn down, caring will become even more difficult and it will not be easy to continue balancing your needs with those of your family and the person with dementia. You need support and assistance to care for someone with dementia.

Remember

You are not alone

There are a large number of carer support groups throughout Australia. Many people find comfort and practical assistance by attending these meetings with others who know what it is like to care for a person with dementia. Support groups bring together families, carers and friends of people with dementia under the guidance of a group facilitator. The facilitator is usually a health professional or someone with first hand experience of caring for a person with dementia. Contact the National Dementia Helpine for further information.

Managing stress

Everyone has different ways to manage stress. Managing stress improves your well being and may positively impact on your caring role, so it can be useful to learn some better ways to deal with it. All bookstores have a range of books and tapes on different ways to manage stress.

What to try 

A consistent schedule can make life a little easier when living with a person with dementia

• It often helps to remember that the person with dementia is not being difficult on purpose, but that their emotions and behaviours are affected by dementia

• Learning as much as possible about dementia and encouraging friends and relatives to do so as well can be helpful

• It is important to talk things over with family, friends and other people in a similar situation

• Look after yourself by looking after your diet, get regular exercise and maintain your social contacts and lifestyle

• Be realistic about what you can expect of yourself, and recognise that taking care of yourself is better for everybody

Getting out and about 

It is very important to continue with activities that you enjoy. Some people say that they feel guilty when they leave the house, or enjoy an activity without the person with dementia. However families and carers have the right to follow their own interests outside their caring role. In fact, it is essential that they do. Someone who has regular breaks will be a better carer. If you are having trouble coping with feelings of guilt about getting out and about, it may be a good idea to talk these feelings over with a supportive friend or relative, or a counsellor at Alzheimer’s Australia.

Asking for help

Taking care of yourself means asking for assistance now, as well as planning ahead for what help you may need in the future. Help often, but not always, comes from relatives, friends and neighbours. Seeking outside help is important for people. Doctors, psychologists and counsellors all have experience helping people who are caring for others.

What to try

Make it an aim to share the care of the person with dementia

• Don’t hesitate to ask for help

• Suggest specific ways that friends and family can help, such as bringing a meal or helping with the housework or shopping

• Organise regular breaks for yourself. A friend or relative may be able to care for the person with dementia on a regular basis so that you can have a few free hours. Find out about respite options in your local area

• Use the services of Alzheimer’s Australia and other support organisations

Friends and relatives 

Caring for someone with dementia can be made more difficult by a lack of understanding from other people. Helping friends and relatives understand what is happening will make your job easier. 

What to try 

Provide information about dementia. Useful material is available from Alzheimer’s Australia, much of it in community languages as well as English

• Explain that outwardly a person with dementia may look fine, but that they have an illness, which although devastating, is not contagious

• Accept that some friends may drift away

• Ask visitors to come for short times and not too many at once

• Suggest activities for the visit such as going for a walk, bringing a simple project to do together or looking at a photo album

• Prepare visitors for any problems with communication, and suggest ways that they might deal with these

Who can help?

Aged Care Assessment Teams (ACAT) provide assistance to older people in determining their needs for home based supports or residential care. A range of health care workers such as geriatricians, social workers and occupational therapists work together as part of the ACAT. You can contact your nearest ACAT by calling the number listed in the Age Page of your telephone directory. Your doctor or hospital can also help you to contact your local ACAT.

The Australian Government has established My Aged Care, a service to provide support and assistance with queries about access to home and community care, respite fees, and bonds and charges. They can also help you look for Government funded aged care homes that meet your particular needs. Call 1800 200 422 or visit the website

Commonwealth Respite and Carelink Centres around Australia provide information about the range of community care programs and services available to help people stay in their own homes. Visit the website or call 1800 052 222 for assistance during business hours.

For emergency respite at other times, call 1800 059 059. The Carer Advisory and Counselling Service provides carers with information and advice about relevant services and entitlements. The Australian Government has published a Carer Information Kit that offers information and practical assistance. 

The Dementia Behaviour Management Advisory Service (DBMAS) is a national telephone advisory service for families, carers and care workers who are concerned about the behaviours of people with dementia. The service provides confidential advice, assessment, intervention, education and specialised support 24 hours a day, 7 days a week and can be contacted on 1800 699 799.

This fact sheet has been reproduced with kind permission from Alzheimer's Australia. For more information, please visit Alzheimer's Australia.