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Caring for the carers

5 Sep 2014, by Informa Insights

brainA common saying is that when a person acquires a brain injury (ABI) they are not the only victims. The whole family suffers from an ABI.

When working with people with ABI more often than not you will also be working with their families, and other support people, both formal and informal. It is important when working with families to establish a good working relationship with them. If the family and support staff are all comfortable working as part of the team the chances of positive outcomes are greatly increased.

ABI is different to other injuries or illnesses in that it is very unpredictable. The experts still have a lot to learn, so it is understandable that some family members will be fearful and feel inadequate to the task of caring for a loved one with ABI. If their loved one had a broken leg or glandular fever, for instance, it would not be so daunting. Family members  can be overwhelmed by the amount  of new information they are learning, the responsibility of making decisions in an area they don’t fully understand and the burden of changed family dynamics.

Family members  can experience a bewildering array of emotions and feelings including shock, anger, disbelief, denial, depression, fear, stress, frustration, and relief. They will also experience grief over the loss of the person, lifestyle, and relationship they had before the ABI. Often this is accompanied by guilt.

Sometimes family members  will refuse counselling or support believing they should just be grateful that their loved one is still alive. Often they will take on more than they should, and refuse to let anyone else help them. This can come from feeling that they nearly lost the person once, so need to be there to protect them now.

When working with families and other support people:

  • Make sure they understand the consequences of the ABI on their loved one. Don’t assume they know the deficits involved. They may have been told at a time when they were under stress and being bombarded with information. Explain in clear, specific terms in a way that makes sense to them.
  • Take time to build a relationship with them. Include them in all decisions. The best chance for positive outcomes is to have everyone working as a team.
  • Be aware of family dynamics. Not all families are The Brady Bunch. If the person with an ABI indicates they do not want someone included, respect that wish.
  • Encourage them to seek support if you see it is required. Validate their feelings – it is ok to feel resentful of the person with ABI.
  • Be patient – some of them have been on a rollercoaster of mixed feelings and emotions. They may be very vulnerable. They may vent their frustration and fear on you for no apparent reason. Don’t take it personally.
  • Always remember they are victims too.

logo-ARBIASFor more information on supporting people with ABI, and practical advice and strategies to enable practitioners to empower people to achieve their full potential, please download the handbook “Looking Forward“.

Looking Forward is a publication by arbias.

About arbias National Intake and Response service

arbias National Intake and Response service provides information and resources to individuals, families and other service providers relating to arbias services and other brain injury services.

The intake team can offer secondary consultation to family and support workers to assist with strategies of supporting an individual with an acquired brain injury, (specialising in alcohol and substance related brain injuries); provide resources and service contacts relating to other brain injury services and provide assistance with referrals for arbias services.

Contact us today for more information  on 03 8388 1217, 1800 272 427 or email


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