Carers & family members
Supporting a loved one after a Brain Injury - Fact Sheet
Stress: It's a part of all of our
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
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
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
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
Dr. Pete's approach emphasises four keys to inner
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
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.