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Get The Facts

Supporting a loved one after a Brain Injury - Fact Sheet

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Carers & family members

Supporting a loved one after a Brain Injury - Fact Sheet

Stress: It's a part of all of our lives.

Many of us struggle to cope with the daily stressors of traffic jams, minor arguments, or misplacing the car keys. Sometimes a big life event, such as marriage, the birth of a child, or a change of job can add significant stress on top of the everyday hassles that we all experience. So how do we begin to cope when something truly catastrophic occurs?

 

Many Australians, particularly those who have become caregivers for a family member recovering from a Brain Injury, routinely grapple with this question. Dr. Peter Stebbins is a clinical psychologist who has devoted much of his career to the adjustment and coping of caregivers for people with a Brain Injury.

 

"In my early research, I was always very interested in how people respond to the most challenging life events, and one of the most challenging life events known in the area of disability and rehabilitation is becoming a caregiver of someone who has a Brain Injury," says Dr. Pete. "Research has shown that this particular caregiving role is the most stressful when compared to caregivers of people with physical disabilities, dementia and other intellectual disabilities."

 

"Over the years, I've become passionate about trying to communicate simply and clearly the practical strategies from a behavioural medicine perspective for coping with stressful life events that these caregivers need to know."

 

The waves of life
His practice and research led to the development of the "Waves of Life" model. "In this model," says Dr. Pete, "we talk about stressful life events in terms of different-sized waves. There are the regular waves of life or daily hassles; big waves of life or disruptive events; and then the tsunamis, which are exactly like the real thing - devastating waves that absolutely wipe us out!"

 

Taking on a caregiving role for a person with a Brain Injury is one of these tsunamis in life. There are many things that are not dissimilar to caregiver challenges, such as the death of a family member - both of which involve grief and loss. Dr. Pete believes that seven of the predicted ten tsunamis in a lifetime will occur during midlife, with an average age of occurrence between ages 43 and 53.

 

"What began many years ago in clinical research with caregivers has evolved into a more simplified education program to help people manage those tsunamis in life and learn how to prevent wipeouts, or major episodes of stress, depression or anxiety" he says.

 

Adjustment & coping
Why is caregiver adjustment and coping such an important topic? Dr. Pete explains that one of the most powerful predictors of how a person adjusts to a Brain Injury is how the person's caregivers cope.

 

"It's quite logical when you consider that, for any one of us who has been a parent, when we're fresh and on top of things, we can manage our children better," says Dr. Pete. "In my research I have looked at caregiver coping across a range of disabilities and found that when the caregiver wasn't coping, the person with the injury or disability was significantly compromised."

 

Furthermore, Dr. Pete suggests that caring for someone with a Brain Injury is a particularly challenging role, and specific difficulties can be traced to cognitive and personality changes before the Brain Injury. The person with the Brain Injury often looks the same but these other changes are the core issues that cause major difficulties for caregivers.

 

In addition to these challenges, Dr. Pete describes caring for someone with a Brain Injury as a "socially devalued role," as opposed to the caregiving role of a parent, a role typically celebrated within our society. Caring for someone with a Brain Injury also often monopolises the care giver's time so self-care is pushed aside.

 

Changes in cognition, personality, mood and behaviour form the uniquely challenging aspects of caring for a person with a Brain Injury. Dr Pete realised in his early years working in respite care that it often wasn't the severity of the disability but the behavioural challenges that were causing the most distress for caregivers.

 

He tells the story of two parents with whom he worked, each with a child with a Brain Injury. "In some cases, cognition and physical ability can be relatively intact but mood and behaviour are very volatile, which can be extremely distressing for caregivers. Contrast this with someone who has severe cognitive and physical limitations but stable mood and behaviour, and often these are not the caregivers who are most distressed."

 

Four keys to inner wellbeing
Dr. Pete's approach emphasises four keys to inner wellbeing:

  • Mindset
  • Emotions
  • Lifestyle
  • Purpose.

 

It is these four elements that form the strategies that caregivers can use to cope with the many challenges they face. While the children in these two families differed in terms of the effects of their Brain Injuries, Dr. Pete says it was the marked contrast in mindset that made a difference in outcomes between the families for both caregiver and child. One caregiver had a mindset of Worry and Demand, while the other was Encouraging and Accepting.

 

The second element is emotions. Selfawareness, the development of coping strategies, and the use of relaxation techniques all play a role in the management of emotions. "The only thing we can change as caregivers is ourselves," he says. "Focusing on the things we can change and problem-solving is an important part of handling emotions so that they do not become overwhelming."

 

The third key is lifestyle. This element includes keeping a balanced diet, exercising regularly, and getting sufficient sleep. Lifestyle is the often first thing to be compromised when people become overwhelmed with the responsibilities and demands of a caregiver role. However, it is during these times that it is all the more important to ensure that we maintain our health routines. Other important components of lifestyle are social activities, hobbies and interests, through which caregivers can replenish their wellbeing and increase the ability to effectively cope with future demands.

 

The final element of inner wellbeing is purpose. Dr. Pete suggests that having a sense of direction or mission in life is imperative. Often, taking on a caregiving role occurs in the context of previous life directions becoming derailed. It is important to take time to revisit one's purpose and life goals in order to develop new directions that allow you to continue to live according to your values.

 

A support team
Dr. Pete suggests that having a stable support team is essential, and believes a clinical neuropsychologist can play a vital role in caregiver adjustment. "On the psychological side, a clinical neuropsychologist is familiar with the four elements of wellbeing and strategies to assist with coping," says Dr. Pete.

 

"On the neurological side, he or she will have the ability to understand how the neurological changes in the person with a Brain Injury will affect cognition, behaviour and personality."

 

Dr. Pete says that it is critical to be proactive. "Set up the relationship and lay out the expectations," he says. "Teach them about where you are and about your relative with the Brain Injury."

 

A majority of people, however, wait until there is a crisis to seek such help. "Unfortunately, most people are reactive in how they use specialist help and so they suffer the effects of serious decline in their own psychological wellbeing," says Dr. Pete. "It is ultimately more costeffective because you're not necessarily having to go through all of the expensive assessment and complicated, intensive appointment times if you already have contingency plans for a crisis."

 

Clinical neuropsychologists can often be accessed through a referral from your GP under a Better Access Mental Health Care Plan, including group or individual programs.

References and further information

PsyCare, a private psychology organisation with locations around Brisbane, runs group programs aimed at assisting caregivers of people with an ABI to adjust and cope in their new roles. If you are interested in accessing one of these programs or in contacting a clinical neuropsychologist for individual services, contact PsyCare on (07) 3839 4400, or visit www.psycare.com.au for more information.

 

Dr. Pete has published a book called "The 7 Mid-Life Tsunamis," which provides strategies for coping with major life stressors.

 

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