Caring for someone with dementia can be physically and emotionally tiring and stressful.
Families and carers can easily become isolated, particularly if they are unable to leave the person they are caring for. Regular breaks mean that you can have a rest, go out, attend to business or go on a holiday and gives carers something to look forward to and experiences to look back on.
Breaks are important for the same reasons for people with dementia. They can mean time for socialising, meeting other people or for doing activities they enjoy. Breaks can also provide an opportunity for getting used to other people other than their immediate family providing support and caring.
What stops families and carers taking a break?
- Putting their own well-being last
- Feeling that a break is not deserved
- Not knowing what is available, or how to get help organising a break
- Being too tired to make the effort
- Wanting a break, but the person being cared for doesn’t
- Feeling that it’s all too much trouble
- Believing that it is their responsibility to provide all the care, all the time
How to take a break
There are lots of ways to take a break. It depends on what suits you and your family. Breaks can be:
- Time for the person with dementia to enjoy themselves with new or familiar experiences
- Time to relax and recharge in whatever way suits you
- Taking time together away from the usual routines
Other family members and friends may be happy to help out by giving you a break from caring. Often it’s just a matter of asking.
The Australian and State governments fund a number of respite programs for regular, occasional and emergency breaks. They include out of home respite, in home respite and residential respite. Respite can also be provided in local day activity centres by attending planned activity groups. Some centres offer specialised activities for people with dementia.
Taking advantage of respite care
The care offered by day centres ranges from a few hours to several days a week. Some centres offer extended hours, weekend or overnight care. Another way to take a break is to have a care worker come to the house to enable you to do things outside the house. They may also accompany the person with dementia to an activity that they enjoy. This is often called inhome respite as it begins and finishes at home.
Respite can also be used to provide care in an emergency or arranged for a longer period of time in a residential facility. To use residential respite, the person with dementia must be assessed by an Aged Care Assessment Team (ACAT). Contact My Aged Care on 1800 200 422 or visit myagedcare.gov.au.
Planning for a positive experience
It is common for people with dementia to find new environments and new people unsettling. Because of this it is important to plan ahead for a positive respite experience. Many families and carers have found it useful to start using regular respite as early as possible so that everyone can get used to sharing dementia care. It is often best to start with small breaks and build up to longer ones.
You will know best how far in advance to tell the person with dementia about the break. Reassure them if they are anxious and make sure that they know that you are positive about the break, even if you’re feeling a little anxious yourself. Talking with other families and carers about ways they’ve managed to make respite a positive experience may give you some practical ideas for managing.
Ask for a break
- If you want to know more about how to take a break – just ask
- If you need help planning what might suit you now, or in the future – just ask
- If you just want to know what’s available – just ask.
The Government is committed to providing respite care and has funded many different types of respite to help carers. Many organisations will help you take a break. These are usually called respite care services and include church groups, local councils and community groups.
Carer Gateway is funded by the Commonwealth government to let you know what is available for you and the person you are caring for. They will help you find respite care in your local area and can answer your queries about types and costs of respite. Contact Carer Gateway on 1800 052 222 or visit carergateway.org.au.
If the type of respite you want isn’t available in your local area let someone know. 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.
Dementia Australia is the national peak body for people living with dementia, their families and carers and provides leadership in policy and services.
To find out more, contact us or call the National Dementia Helpline on 1800 100 500.