Behaviour changes are part of brain injury for most people, but it’s an aspect that often isn’t fully apparent until you return home and life outside of the hospital routines begins.
Brain injury affects everyone differently, so it can be difficult to predict the behaviour changes that may occur, how they are triggered, and the best ways to respond. While there are differences from person to person, we know that there are many commonalities, including those of the carer and family experience of behaviour change.
Adjusting to a new life
If there’s one certainty of the early days at home, it’s that it’s a period of adjustment. A loved one’s brain injury means a huge change for both of you, and other family members. Many people tell us they feel a wide range of emotions watching their loved throughout this time. Before their injury they may have had clear roles and responsibilities in life and witnessing them come to terms with how their brain injury impacts this and working out what life will look like from here can be really unsettling. It’s difficult for you too. It’s really helpful to have a level of awareness of what your loved one is dealing with in this time of adjustment, and to be able to show empathy around what they’re going through.
Additionally for carers, adjusting to all the elements of the ‘new normal’ is a big change. On a practical level, there are often shifts in your home life, financial responsibility and new roles to adapt to. And there’s a lot to be aware of for your loved one too, to be able to support them, such as functional impairments like memory and fatigue, as well as any physical limitations that may have occurred as a result of brain injury. .
Read more about how brain injury impacts families.
If you’d like to access information or supports we can help, contact us here or call 1800 673 074.
What do these changing behaviours mean?
Behaviours typically change after brain injury as a result of impacted impulse control and temperament. All behaviour serves a purpose and communicates a message. Understanding this can be useful in situations that may otherwise leave you feeling powerless and frustrated.
Behaviours are often an expression of adjustment experience, adapting to life now. Some may find this harder than others and acceptance levels will vary. Some people simply can’t accept the way things are, leaving them stuck on certain sets of behaviour as a coping mechanism for some time.
If we are able to look beyond behaviour we might be able to what it is behind it, what the person is trying to express. For example, some reactions are borne from sheer frustration over limited physical or cognitive function. It can be difficult for people with brain injury to articulate their experience or communicate and relate in the ways they previously would have.
Read more about the messages behind behaviour after brain injury
The most common behavioural changes
Some brain injuries can result in a loss of motivation and difficulty in getting started with activities. This lack of motivation, also called adynamia, is common with injury to the frontal lobes that occurs after a traumatic brain injury (TBI).
Difficulties with motivation can impact on many areas of life such as rehabilitation, learning coping skills, social functioning and a return to work or study.
Read more on Motivation and Initiation (Adynamia)
The ability to view the world from someone else’s point of view is a very complex cognitive skill that occurs in the frontal lobes of the brain. This is a very common area to be affected in a brain injury and other brain disorders which can cause self-centered behaviour.
Read more on self-centredness
Anger is a common emotional response after a brain injury and can be directly related to impairments caused by the injury.
A brain injury can damage areas of the brain involved in the control and regulation of emotions, particularly the frontal lobe and limbic system. Other effects of a brain injury can lead to irritability, agitation, lowered tolerance and impulsivity, which also increase the likelihood of angry outbursts. Anger issues are commonly associated with a traumatic brain injury (TBI) but occur with other types of brain injury as well.
Read more on anger after a brain injury
Behaviour change vs. functional adjustment
It’s important to differentiate between changing behaviours and adjustment to practical, every-day functions. While functional adjustments can be difficult, many of these challenges have simpler, practical solutions. For example, if someone has memory loss, there are tools to manage this, and new approaches that can be adopted. In comparison, behaviour change is more complex and often harder to grasp – it impacts on how you perceive your loved one’s personality and is emotionally complex.
Read more about managing behaviour
▶ Watch our video on strategies for supporting a loved one’s behaviour, fatigue, memory, and motivation
Handling challenging behaviours – know your limits, act early
Behaviour change will be different for everyone who has experienced brain injury, as are our responses and limitations as carers. Behaviours can be intimidating and confronting – there’s no definitive answer to ‘where to draw the line’ if behaviours are cause for concern.
The point at which you feel that you’re no longer safe or being treated with respect is key though. Be honest and know that it’s ok to reach your limit – no matter what that is. Don’t be afraid to speak up and find help whether it is for you or for your loved one. Bottom line, violence or abuse is never OK.
What can often be helpful, particularly in spouse relationships and when children are involved is to act early. Many behavioural challenges can be addressed quite successfully by the right people (medical specialists, healthcare workers, psychologists etc). It’s far better to put your hand up for help early than to wait and see if the behaviours get better on their own.
Where to find help and support
The Synapse Information and Referral Service can connect you with experienced, local service providers and support systems we believe are best suited to those impacted by brain injury.
1800 Respect can connect you to local domestic violence support and counselling
Emotional toll and self-care for carers.
Understanding and adjusting to behaviour change can be really difficult – it’s perfectly natural to feel stressed and overwhelmed. A big factor for many in the early stages is dealing with the grief of ambiguous loss – is a loss that occurs without closure or clear understanding of how things will change.
The sudden and abrupt nature of brain injury also places significant, unexpected demands you and other family members. As a result, you might experience distress, anxiety, frustration, depression and a range of other issues through the early stages of adjustment and beyond into everyday life. Remember that it’s equally important to take care of yourself and access outside support that may be available.
Our Carers Facebook group is a safe place for carers and family members of people with a brain injury to find support and connect with each other. [link to Facebook group page}
Read more about the support needs of carers
Read more about self care for carers and family members
▶ Watch our video on self-care for carers with Meredith Lade
Supports are available under the National Disability Insurance Scheme that may help with behavioural concerns. Specialist Behaviour Support is for more extreme type behaviours of concern and other items such as occupational therapy or psychological support are available for emotional regulation, changing of routine or communication issues. People with brain injury can speak with their LAC or support coordinator about whether any of these might be needed in your plan to help you achieve your goals. Remember, maintaining healthy and stable relationships with friends and loved ones is a valid and worthwhile goal.