Caring for someone with dementia? You might need to take a break
Why it's important to take a break from caring, how to organise it and who can help.
Taking a break is important for familes and carers
Caring for someone with dementia can be physically and emotionally tiring and stressful. Families and carers can easily become isolated from social contacts, 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.
Taking a break is important for people with dementia
Most people take breaks of some sort, perhaps pursuing hobbies that they enjoy, or weekends and holidays away. This gives us something to look forward to and experiences to look back on. Breaks are important for the same reasons for people with dementia. It gives the person an opportunity to socialise and meet other people, and to get used to other people providing support and caring for them.
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. 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 in-home 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) to determine the level of care required.
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.
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.
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. Contact your closest Carer Advisory and Counselling Service on 1800 242 636 or visit the Carers Victoria website.
If you have concerns about accessing respite discuss these with 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.
If the type of respite you want isn’t available in your local area let someone know.
Contact Alzheimer’s 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.
This fact sheet has been reproduced with kind permission from Alzheimer's Australia. For more information, please visit Alzheimer's Australia.