VOL-14
In this issue
BRAIN DISORDERS
An evidence-based
approach: Brain Injury
and Brain Disorders
bridging
THE GAP
And yes, they are the same thing... sort of.
BRIDGE VOLUME 14 - March 2014
03
ISSN 1448-9856
General Editor:
Contributing editors:
National Development
Manager:
Barry Morris
Alice Corcoran
Jessica Irons
About concussion
By Sports Concussion
Australasia
Glen Farlow
Synapse
PO Box 3356
South Brisbane 4101
P: 61 7 3137 7400
F: 61 7 3137 7452
E: info@synapse.org.au
W: http://synapse.org.au
The Bridge is the quarterly magazine produced by
Synapse, an organisation dedicated to improving
the quality of life of people living with and
affected by Brain Disorders. Published nationally,
internationally, and online, it features practical
strategies, current news and research, and personal
stories. We welcome contributions and news,
especially from academics, community groups,
other organisations or those who have personal
experience to share.
07
Learning, Collaboration,
and Planning for the Future
Stroke
By the National Stroke Foundation
09
Advertising rates available on request.
VISUAL DIFFICULTIES: Visit www.synapse.org.au
and view the free online version which can be
expanded on screen.
DISCLAIMER: While all care has been taken to
ensure information is accurate, all information
in this publication is only intended as a guide,
and proper medical or professional support and
information should be sought. Synapse will not be
held responsible for any injuries or damages that
arise from following the information provided.
Material within does not necessarily reflect the
policies of Synapse or the staff and Board of
Management. References to other organisations
and services do not imply an endorsement or
guarantee by Synapse.
1 / BRIDGE MAGAZINE
INDEX
In Synapse’s 30 year history we have seen
and experienced a lot. We have seen carers
and clients achieve the seemingly
impossible. We have seen advancements in
medicine and therapies; such as neuroplasticity,
early intervention, behavioural intervention
and advanced brain mapping.
What we have struggled with over the last 30
years, is an accurate, evidenced based definition
of “Brain Injury”. While we continue to fight
for awareness and education, we are often
amazed at the lack of understanding by doctors
and disability workers around what a Brain
Injury actually is (or that it even exists)... maybe
we shouldn’t be so surprised.
With significant misdiagnosis or no diagnosis
at all, the “Invisible Disability” lives up to its
name; it’s no wonder for the lack of evidence
and research. So here is our learning...
Most of what we have been calling Brain
Injury in the past is actually a Brain Disorder
(technically called Neurocognitive Disorders).
A Brain Injury is part of a spectrum of disorders
relating to the brain.
Here is an easy way to think of it; a Brain
Injury is more around a specific ‘injury’ to the
brain, such as an accident, a king hit, or lack
of oxygen. A Brain Disorder is more around
brain degeneration such as MS, Parkinson’s or
Alzheimer’s.
03 An evidence-based approach:
Brain Injury and Brain Disorders
And yes, they are the same thing... sort of.
05 Multiple sclerosis
The facts from MS Australia
06 Brain tumours
By the Cancer Council Queensland
07 About concussion
By Sports Concussion Australasia
09 Stroke
By the National Stroke Foundation
10 Caring for a partner
Dianne’s journey after her husband’s stroke
11 Is it justice?
Injustice, the justice system & brain injury
13 Brain disorders and dementia
By Alzheimers Australia (Qld)
14 Family concerns
A brain injury affects the entire family
15 Alcohol-related violence
An objective look at a hot topic
AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS
17 Brain injury? But you look fine!
How to respond to when they don’t believe
19 Why I care about Youngcare
Get young people out of nursing homes
21 I’m bored - I’m chairman of the board
Tips on fighting boredom in recovery
23 Common questions about behaviour
By ABIOS
25 Living with traumatic brain injury
Moving forward after a brain injury
26 Intimate relationships
Brain injuries make these even trickier
27 A bumpy ride
The tough journey caring for a partner
29 Making the most of memory
Handy tips from our cousins in the UK
QLD
QLD
QLD
AUS
NSW
VIC
TAS
WA
SA
NT
Synapse Inc.
ABIOS (Acquired Brain Injury Outreach Service)
Headway Gold Coast
Brain Injury Australia
Brain Injury Association of NSW
BrainLink Services
Brain Injury Association of Tasmania
Headwest
Brain Injury Network of South Australia
Somerville Community Services
Why is this even important?
The National Disability Insurance Scheme
(NDIS) is being rolled out across the country,
and the assessment tool being used is primarily
functional; it does not take into account the
significant cognitive or behavioural issues that
are so common with our clients. Unfortunately,
T: 07 3137 7400 T: 07 3406 2311 T: 07 5574 4311 T: 1 800 BRAIN1 T: 02 9868 5261 T: 03 9845 2950 T: 03 6278 7299 T: 08 9330 6370 T: 08 8217 7600 T: 08 8920 4100 Jennifer Cullen, CEO of Synapse
this will affect the level of care or support some
people will receive.
This definition is important because we
believe that everyone with a disability deserves
a quality of life based on their decisions and
choices.
Every organisation featured in this edition
provides services to people affected by Brain
Disorders, and most of the time we work
seperately. Synapse believes in working together,
through sharing costs, resources and research.
Diagnosis is important, but labels aren’t...
we must work collaboratively if we are going to
provide meaningful services to the people who
truly need them.
Y
Jennifer Cullen
CEO of Synapse
E: info@synapse.org.au
E: abios@health.qld.gov.au
E: admin@headwaygoldcoast.org
E: admin@braininjuryaustralia.org.au
E: mail@biansw.org.au
E: admin@brainlink.org.au
E: enquiries@biat.org.au
E: admin@headwest.asn.au
E: info@binsa.org
E: scs@somerville.org.au
www.synapse.org.au
ww.health.qld.gov.au/abios
www.headwaygoldcoast.org
www.braininjuryaustralia.org.au
www.biansw.org.au
www.brainlink.org.au
www.biat.org.au
www.headwest.asn.au
www.binsa.org
www.somerville.org.au
2 / BRIDGE MAGAZINE
2
HAD ENOUGH?
WE CERTAINLY HAVE!
An evidence-based approach:
Brain Injury and Brain Disorders
And yes, they are the same thing... sort of.
Over 1.6 million Australians are affected
with some form of Brain Disorder - that’s
over 1 in 12 according to statistics from
the World Health Organization (2006).
Brain Disorders (technically called
Neurocognitive Disorders) are a complex
spectrum of disorders that refers to any type of
(organic) damage to the brain or neurological
disruption occurring after birth.
The Diagnostic and Statistical Manual of
Mental Disorders 5 (DSM5) has recently
moved to the term ‘Neurocognitive Disorder’ as
a descriptor for this condition which includes
Brain Injury, with causes including (but not
limited to) trauma, vascular disease, Alzheimer’s
disease, Parkinson’s disease and infections.
The term Neurocognitive Disorder, however,
provides a diagnosis for people experiencing
cognitive symptoms alone, without memory
or physical impairments. This means that
3 / BRIDGE MAGAZINE
many individuals who are not currently
receiving recognition or services (due to the
lack of memory or physical impairments) will
have this opportunity for understanding.
With your help we want to show the
community how to send a message of support
to all those adults and children living with a
Brain Disorder:
•When “one punch doesn’t kill”,
•As a result of falls, motor cycle and motor
vehicle accidents, and other trauma,
•As a result of degenerative diseases, brain
tumours,
Dementia,
Parkinson’s,
Huntington’s, Multiple Sclerosis, Cerebral
Palsy and other brain illnesses,
•As a result of stroke and other cardiovascular
diseases,
•As a result of alcohol, drug abuse, concussion
or repeated knocks to the head from sports.
Through our work and the work of our
affiliates across Australia, we know that the
current statistics don’t mirror society. They
grossly underestimate the real numbers, and
many people with a Brain Disorder are either
misdiagnosed or undiagnosed. Unfortunately
it is often the most vulnerable people in the
community affected, but never diagnosed,
including:
• Indigenous Australians,
• Homeless people,
• Survivors of domestic violence,
• Soldiers who survive the ravages of war,
• People in the criminal justice system.
Around twice as many people are diagnosed
each year with Brain Disorder compared to
breast cancer and yet very few people know
about Brain Disorders (AIHW, 2010).
Recognition of brain disorders, preventions
strategies and long-term support for those
affected are all long overdue.
It’s time to turn our outrage
on those who hide behind
alcohol, drugs and anonymity.
It’s time to turn the tables on
the ‘dicks’ who think bashing some
poor stranger will make them feel
better about themselves.
The only thing this senseless violence
has ever achieved is to ruin people’s lives.
Far too many lives. Far too many times.
We know because we deal with the human
tragedy that follows.
Enough is enough. Add your voice across
social media to help get the message out...
that violence destroys lives!
Here’s the hashtag #DontBeADick. Now use it!
4 / BRIDGE MAGAZINE
Fetal alcohol
spectrum
disorder (FASD)
Fetal Alcohol Spectrum Disorder is an umbrella
term used to describe a range of disabilities and a
continuum of effects that may arise from prenatal
alcohol exposure, and it is widely recognised as the
most common preventable cause of birth defects and
brain damage in children.
FASD is not a clinical diagnosis in itself but represents
a range of diagnoses that fall under the spectrum.
These diagnoses are Fetal Alcohol Syndrome (FAS),
partial Fetal Alcohol Syndrome (pFAS), Alcohol Related
Neurodevelopmental Disorders (ARND) and Alcohol
Related Birth Defects (ARBD).
How much alcohol is safe during pregnancy?
Alcohol is a teratogen and a neurotoxin i.e. an agent
that is known to adversely affect fetal development
and cause birth defects and brain damage. Researchers
do not know how much alcohol, if any, is safe to drink
during pregnancy, and there is also no safe time for
consuming alcohol. What they do know is the risk of
damage increases the more you drink and that binge
drinking is especially harmful. So less alcohol is better
but even small amounts may cause changes to the
developing brain so no alcohol is the safest choice for a
healthy pregnancy.
Diagnosis & prognosis
FASD is a lifetime disability. It is not curable, however
early diagnosis and appropriate interventions can
make an enormous difference to the life of the person
with the disability. An individual who receives a
correct diagnosis is in a much better position to benefit
from intervention than one who is not diagnosed or
mis-diagnosed and receives only partial treatment.
What are some of the signs?
Children who have been exposed to alcohol during
pregnancy, may have problems with learning,
remembering things, attention span (ADD/ADHD),
communicating, doing maths and/or controlling their
behaviour. A minority of children with FASD may also
be small, their faces may look different, and they may
have vision and/or hearing problems.
Because of their disabilities, people who are affected
by FASD may have special needs that require life long
help - even when they are adults - regarding handling
money, learning, understanding the consequences of
their behaviour, interacting with other people socially,
and keeping a job.
This information is an excerpt from the website of
the Russell Family Fetal Alcohol Disorders Assocation
(RFFADA). Visit http://rffada.org for more information
on these disorders. The Foundation is dedicated to
ensuring access to diagnostic services, support and
multidisciplinary management planning in Australia, and
that carers and parents are supported with a “no blame
no shame” ethos.
5 / BRIDGE MAGAZINE
Brain tumours
Multiple sclerosis
An estimated 23,000 Australians live
with multiple sclerosis (MS)
The term ‘sclerosis’ is a Greek word
meaning ‘hardened tissue or scars’. These
scars form as a result of cells in the body’s
own immune system entering the central
nervous system and causing inflammation to
the brain, spinal cord and optic nerves.
Recurring episodes of MS can cause many
scars to appear in the central nervous system
as inflammation created by the body’s immune
system cells breakdown myelin, the insulating
material that covers the nerve fibres. This can
result in impairment of motor, sensory and
cognitive functions to a greater or lesser extent.
‘Multiple’ describes other aspects of what
is often a frustratingly unpredictable disease.
Episodes can occur at varying times affecting
different areas of the central nervous system.
There is no one symptom that indicates the
presence of MS. No single test can establish an
accurate diagnosis.
It can be benign - in rare cases apparently
disappearing altogether after one or two
episodes. Or it can progress steadily over many
years, bringing about a slow deterioration in an
individual’s capabilities. In reality, no two cases
of MS are the same.
No one knows the exact cause of MS, but a
mixture of genetic and environmental factors
are likely to play a role in the development of
the disease.
Symptoms
MS symptoms are varied and unpredictable,
depending on which part of the central nervous
system is affected and to what degree. The
symptoms can be any combination of the five
major health problems, including:
•
Motor control - muscular spasms and
problems with weakness, coordination,
balance and functioning of the arms and legs
•Fatigue - including heat sensitivity
•Other neurological symptoms - including
vertigo, pins and needles, neuralgia and visual
disturbances
•Continence problems - including bladder
incontinence and constipation
•Neuropsychological symptoms - including
memory loss, depression and cognitive
difficulties.
Treatment & management
There are numerous treatments available to
ease specific symptoms and slow progression
of the disease. Medications might also be
prescribed to manage acute symptoms such as
pain, spasticity, fatigue, and bladder difficulties.
There are also many important lifestyle tips
that some people have used to limit the impact
of MS on their lives. Ultimately, each case of
MS is different and treating and managing MS
symptoms really comes down to an individual,
their families, carers and loved ones finding the
mix that best suits them.
MS Australia is the national peak body for people affected
by MS, including carers, loved ones, fundraisers, the MS
research community and of course people with MS. This
article is an excerpt of important information available
from their website at http://ms.epublisher.com.au
Practical advice from the Cancer Council Queensland
A brain tumour can be benign (noncancerous) or malignant (cancerous). It
can also be a primary tumour, arising in
the brain itself or a secondary tumour, spread
from another part of the body. In benign brain
tumours, if the tumour can be removed
successfully it should not cause any further
problems.
However a small proportion do regrow slowly
and these recurrences can usually be removed,
when necessary, by a further operation. It is very
rare for primary malignant brain tumours to
spread to other parts of the body, but they may
cause problems by invading the normal brain
tissue which surrounds them.
Many brain tumours found and treated
early cause little or no permanent damage to
mental or physical abilities. Many others can be
treated with surgery, radiation, chemotherapy
or a combination of these methods, resulting
in prolonged life. Each year, further progress
in treating this disease is made by dedicated
researchers.
What to expect
The effects of a brain tumour are varied
and usually depend on the type of tumour,
the size, and location in the brain. The brain
is surrounded by a bony skull and there is a
limited amount of space inside the hard confines
of the skull. This means the growth of anything
that doesn’t belong there causes changes in
normal brain function. These changes may be
temporary or permanent, depending on the
cause.
Tumours may cause direct pressure which
affects brain cells, shifting of the brain due
to tumour growth, or pressure which affects
brain areas distant from the tumour, causing
changes in their function. You may experience
several generalised symptoms. These can be
due to emotional or physical stress caused
by treatment or by the tumour itself. Lack
of appetite, depression, irritability, fatigue,
sleeplessness, sexual difficulties, erratic memory
and restlessness are common complaints.
Nausea, bladder problems or constipation can
also occur.
Blockage of the natural flow of cerebrospinal
fluid (CSF), the brain’s ‘water bed’, may cause
problems. Some may need a by-passing (shunt)
to relieve the blockage. Irritation in parts of
the brain caused by a tumour may result in
epilepsy. Interruption of nerve function may
result in weakness or loss of muscle control. If
this involves one side of the body, it is called
hemiplegia. Medication used to treat brain
tumours, for example, Dexamethasone, can also
cause side-effects such as irritability. Remember,
your health care team is there to help you deal
with these problems.
Coping strategies
There is no one right or wrong way to cope
with the challenges of a brain tumour but the
following strategies may help.
Don’t bottle things up. It is normal to
experience difficult thoughts and feelings after
a brain tumour diagnosis and treatment.
Upsetting thoughts can build up like steam in
a pressure cooker. Talking about how you feel
can relieve some of the pressure, allows others
to understand, and opens the way for others to
offer support. Some people find that writing
down their thoughts and feelings provides a
release and helps them gain perspective.
Take up offers of support. Think about
what would make a difference to you (e.g. go
with you to appointments, keep other people
informed, cook meals, drop off children, attend
an activity/outing with you). Then when people
offer to help, you can give them some ideas in
advance. This helps you as well as allowing
others to feel useful and more involved in your
journey.
Make regular time to unwind. Don’t wait
for feelings of stress to become overwhelming.
Make sure you plan to do something to wind
down each day such as going for a gentle walk,
listening to music, doing meditation or just
spending time alone.
Take care of your health. Exercise and good
nutrition can help you to cope mentally and
physically with the demands of diagnosis and
treatment. Even gentle activity can sometimes
help with fatigue and reducing feelings of stress.
Eating the right kinds of food during and after
treatment can help you feel better and stay
stronger.
Avoid numbing the pain with drugs or
alcohol. Trying to avoid unpleasant emotions
by numbing them will only make things more
difficult to cope with in the long run.
Know where to go for support. There
are a number of services that can provide
you with different types of support during
and after treatment. Support groups provide
information and contact with others in similar
circumstances.
This is an excerpt from information provided by Cancer
Council Queensland which is committed to providing
all Queenslanders with the best possible prospects of
preventing, detecting, effectively treating and surviving a
cancer diagnosis. Contact the Cancer Council Helpline by
ringing 13 11 20 to discuss support services to suit your
needs.
6 / BRIDGE MAGAZINE
athlete who has lost consciousness as a result
of a blow to the head or body. Indications for
urgent referral to hospital include:
•Fractured skull
•Penetrating skull trauma
•Loss of consciousness
•Deterioration in conscious state following
injury
•Increasing confusion
•Worsening headache post injury
•Persistent vomiting
•Any convulsive movements
•Focal neurological signs
•More than one episode of concussive injury in
a match or training session
•All children with head injuries
•
High-risk patients (e.g. hemophilia,
anticoagulant use)
•
High-risk injury mechanism (e.g. high
velocity impact, missile injury)
•Inadequate post injury supervision.
About concussion
Dr Ryan Kohler explains how to keep our athletes safe on and off the field
Concussion is a disturbance in the ability
of the brain to take in and process
information. The slower function of the
brain represents damage to nerve cells (neurons).
The neurons can be damaged by a direct blow
to the head, which causes the brain to collide
with the skull. Indirect impact to the body can
transfer an impulsive force to the brain and
have a similar outcome.
The effect varies from athlete to athlete,
producing signs that depend on which part of
the brain has been affected. Concussion signs
visible to others at the time of the collision
include:
•Loss of consciousness / unresponsiveness
•Upper limb muscle rigidity
•Upper limb spontaneous movement
•Loss of overall body tone
•Loss of control of the neck (“rag doll effect”)
•A fit / seizure soon after contacting the surface
•Balance difficulty
•Slow responses
•Vacant stare
•Confusion
•Disorientation
•Holding the head
•Facial injury
•Speech slurring.
After the impact injury, the athlete can start
to feel unwell as a group of symptoms start to
randomly present themselves. The athlete may
complain of:
•Headache
•Nausea / vomiting
•Blurred vision
•Memory loss / difficulty
KEY MESSAGES ABOUT CONCUSSION
Two to three players in your team this season will have a concussion.
An athlete does not have to lose consciousness to have a concussion.
Suspected concussion? The athlete must stop playing, and not return to sport or training that day.
Symptoms can evolve over time – keep monitoring the athlete for at least 72 hours.
All athletes with suspected concussion should see a medical doctor as soon as possible.
7 / BRIDGE MAGAZINE
•Dizziness
•Tiredness
•Not feeling right
•Intolerance of bright light & loud noise
•Sleep difficulty
•Poor attention & concentration
•Sad or irritable or frustrated
•Fatigue
•Lethargic, low motivation
•Slow reaction time.
How common is concussion in sport?
1.6 to 3.8 million concussions occur in sport
per year in the United States. Across football
codes in Australia, the probability of concussion
is approximately 1 in 10 across all sports.
The issue
It is recognised that most concussions
get better in seven to 10 days. However,
ignoring concussion signs and symptoms or
not recognising them, can result in potentially
catastrophic consequences. Acute brain
swelling, traditionally referred to as “second
impact syndrome” is usually fatal. Prolonged
symptoms, recurrent concussion, learning
difficulties, and personality problems have also
been reported. A recent study showed how the
recovery time from concussion became longer
with each concussion.
What should parents, coaches and
administrators do before the season?
Secondary prevention can be explained
as effective preparation. Gathering baseline
information on the athlete is able to provide the
first step to effective post concussion treatment.
The important components of concussion
screening are:
•Baseline brain function testing with Axon
Sports
•Baseline symptom assessment
•Baseline balance testing.
What should parents, coaches and
administrators do at the event?
Use available resources to recognise or
suspect concussion. Any athlete with suspected
concussion must be withdrawn from the event
or training immediately. Furthermore, no
athlete with concussion or suspected concussion
should return to the same event or practice that
day. ALL athletes with concussion or suspected
of concussion need a formal medical assessment
in the soonest possible time.
Before getting to a medical doctor, be on
the lookout for signs of serious neck or head
injury. Protect the athlete’s neck and secure an
open airway when the athlete is not responsive.
Urgent hospital referral is necessary for any
See a medical doctor as soon as possible
A concussed athlete should see a medical
doctor with experience in managing concussion
as soon as possible after the impact. The medical
doctor should see the athlete on a number of
occasions, performing serial assessments. At the
first visit, the doctor will do a full neurological
examination and document current symptoms.
It is recommended that balance testing and
computerised brain function testing be repeated
and compared to the baseline test report.
Recovery from concussion may take longer
in younger athletes under 18 years of age,
therefore a conservative approach to playing
sport again should be followed in these cases.
How does the athlete get back to sport?
Athletes should only return to high intensity
exercise when their symptoms have gone away
and cognitive function has returned to normal.
Once the athlete feels better after about 72
hours, some low intensity exercise in the form
of vision and balance training can begin.
Progression of exercise challenge can occur
every 24 hours. If athletes start to feel unwell
during or after exercise, they should rest for
24 hours and then attempt the same exercise
challenge. Only when an athlete has completed
all the stages of exercise challenge can they
obtain written medical clearance from a medical
doctor. The athlete should give this medical
clearance to their coach.
Sports Concussion Australasia specialises in providing
Concussion Management Systems to organisations, schools
and clubs. Visit www.sportsconcussionaustralasia.com for
handy information and resources for parents and coaches
such as the new App and wallet card key tag.
Soldier On
Soldier On is about Australians coming together
to show their support for our physically and
psychologically wounded – we will always have
their backs. It’s about giving those who have served
our country the dignity they deserve and the
chance to do and be whatever they choose through;
providing access to inspirational activities, supporting
rehabilitation and providing opportunities that
empower individuals.
John Bale and Cavin Wilson founded Soldier On in the
summer of 2012 to give something back to their mates
and colleagues that had been wounded, physically or
psychologically, on contemporary operations.
John joined the Army with schoolmate Lieutenant
Michael Fussell who was killed by an improvised
explosive device in 2008. Cavin worked as a
movements officer in the Middle East in 2010 where
one of his roles was to coordinate the aero-medical
evacuation of those wounded. Cavin saw first hand the
effects that these wounds had on the soldiers and their
friends and families..
The initial idea was to run a simple fundraising event
that would give all money to an Australian charity that
supported our wounded. However, even if they were
able to raise money, there was no Australian charity
that directly supported wounded soldiers.
This was quite different to other countries where
charities like H4H and the Wounded Warrior Project
had dramatically changed the way the wounded were
cared for in Great Britain and America.
There was a clear requirement for a charity that could
engage all Australians to physically and emotionally
support their wounded. To achieve this, Soldier On
was founded in January 2012 and publicly launched in
April that year.
Visit their website at http://soldieron.org.au for more
information or to get involved.
8 / BRIDGE MAGAZINE
Stroke
Caring for a partner
How to recognise and minimise
your chances of having a stroke
A stroke happens when blood supply to
the brain is interrupted. Blood is carried
to the brain by blood vessels called
arteries. Blood contains oxygen and important
nutrients for your brain cells. Blood may be
interrupted or stop moving through an artery,
because the artery is blocked (ischaemic stroke)
or bursts (haemorrhagic stroke). When brain
cells do not get enough oxygen or nutrients,
they die. The area of brain damage is called a
cerebral infarct.
Brain cells usually die shortly after the stroke
starts. However, some can last a few hours, if
the blood supply is not cut off completely. If
the blood supply can be returned in the minutes
and hours after the stroke, some of these cells
may recover. If not, they will also die.
A transient ischaemic attack (TIA) happens
when there is a temporary interruption to
the blood supply to the brain. It causes the
same symptoms as a stroke, but these go away
completely within 24 hours.
Even though symptoms may go away it is
also important to get treatment as quickly as
possible by calling 000.
Signs of stroke (FAST)
Recognise the signs of stroke and call 000.
A stroke is always a medical emergency. Using
the FAST test involves asking three simple
questions:
•Face: Check the face; has the mouth drooped?
•Arm: Can they lift both arms?
•Speech: Is their speech slurred? Do they
understand you?
•Time: This is critical. If you see any of these
signs call 000 straight away.
Facial weakness, arm weakness and difficulty
with speech are the most common signs
of stroke, but they are not the only signs.
Other signs of stroke may include one, or a
combination of:
•Weakness or numbness or paralysis of the
face, arm or leg on either or both sides of the
body
•Difficulty speaking or understanding
•Dizziness, loss of balance or an unexplained
fall
•Loss of vision, sudden blurring or decreased
vision in one or both eyes
•Headache, usually severe and abrupt onset
or unexplained change in the pattern of
headaches
•Difficulty swallowing.
The signs of stroke may occur alone or in
WHAT YOU CAN DO TO REDUCE THE CHANCES OF A STROKE
High blood pressure, high cholesterol, smoking, obesity, inactivity and too much alcohol all increase the
chance of stroke.
A balanced diet eating fresh foods where possible is recommended. It is also important to maintain a
balance between exercise and food intake; this helps to maintain a healthy body weight.
People who take part in moderate activity are less likely to have a stroke. Try and build up to at least
30 minutes of moderate physical activity most days of the week. Talk to your doctor about an exercise
program as people with high blood pressure should avoid some types of exercises.
Stop smoking, and stay within recommended limits for drinking alcohol. These are two standard drinks
per day if you’re male and one standard drink per day if you’re female.
9 / BRIDGE MAGAZINE
Her husband’s stroke turned Dianne Stewart’s
retirement into a challenging journey
combination and they can last a few seconds or
up to 24 hours and then disappear.
Stroke rehabilitation recovery
When you first go home after a stroke your
family and friends will be your most valuable
support. It is important, as much as possible,
to get back to the life you enjoyed before your
stroke.
After a stroke, both the stroke survivor and
the family are often frightened about being
at home again and getting used to life after
stroke. Carers might be worried about leaving
the stroke survivor at home alone or about the
possibility of another stroke. If you have any
questions and fears about being at home, talk
to your doctor and the stroke team.
Life after stroke has its own particular
challenges that will take time, support and
determination to adjust to. A stroke survivor
has to get used to doing things differently and
it can impact on intimacy, relationships and on
work and hobbies. Help might be provided by
your GP, by family or friends, from other stroke
survivors or through organisations like us.
The National Stroke Foundation works with stroke survivors,
carers, health professionals, government and the public to
reduce the impact of stroke on the Australian community.
This article is an excerpt of important information available
from their website at http://strokefoundation.com.au
Each year we celebrate Kevin’s survival
and mark this day by reflecting on
milestones along the road to recovery. My
husband found this difficult for the first few
years, as he grieved for the lifestyle he’d left
behind. But now we see it as the beginning of a
“new normal” for us.
From our involvement with many support
groups, it is evident that everyone’s acquired
brain injury is unique. Kevin is now a left
hemiplegic with visual deficiencies, occasionally
epileptic, and has difficulty walking. His poststroke difficulty in initiating activities and
sequencing tasks has affected his personality.
He can be impulsive, intractable and emotional,
and sometimes gets himself into situations
he can’t handle (he was previously a dynamic
business executive).
Coping with behaviour & emotions
I am involved with a support group for
partners of people who have a brain injury.
Although diverse in age and background, we
are alike in wanting to stay in our relationships
and determined to give it our best shot. When
our carers’ group first formed, it didn’t take
long to work out that changes in emotions
and behaviour cause the most distress in
relationships with our partners.
We roll with the punches when it comes to
their physical limitations, but the indefinable
effects of their brain injury have resulted in
changes to our personalities as well. Overlooking
our partners’ seeming lack of appreciation,
we make allowances for their (sometimes
outrageous) confabulations and have learnt to
smile at the black humour of our situations. We
take one day at a time – for we know that no
two days are the same.
This is as good as it gets
Prior to our partners’ brain injuries, each
person in our carers’ group had interesting and
fulfilling lives, with dreams and plans for the
future. Then, through one cataclysmic event,
their lives changed forever – and so did ours.
Another common thread in our group is that
for the first year or so, we still hoped our old
lifestyles might resume – until we realised “this
is as good as it gets”.
Caring for someone can be a lonely experience
– friends move on, people avoid asking you to
join their activities, and you take on many new
responsibilities. Family members with their
own lives to lead try to fit you in, but often it’s
just too hard.
Carers often need to cope with spontaneous
unsociable behaviour from their charges, and
the reactions this elicits from other people.
Thinking for two becomes part of the daily
routine, as even the most basic task may require
a decision or supervision. Typically, your own
well-being becomes secondary, without the
opportunity to look after yourself as before.
Women can feel as if they are losing their
femininity, and can easily become weary, teary
and forgotten.
Scant recognition of huge contributions
For the younger women in our group there
is the prospect of caring for a husband who
is often less cognitive than their school-aged
children, and they can expect a lifetime of
limited independence and opportunities –
financially, socially, intellectually and sexually.
As their partners are still young men, their
loss of independence, income, masculinity and
identity is more likely to be expressed through
violence, or impulsive and reckless activities.
The injured person’s parenting abilities
are often negligible, and their children may
respond poorly to the situation, putting more
pressure on the wife/carer. I have nothing but
admiration for these dedicated women who
face many decades of caring for their loved
ones at the cost of their own security, ambitions
and independence. Their contribution is
immeasurable – but sadly, recognition is scant
from both society and government.
Not so golden years
So we don’t have the golden years we had
envisaged, but life rolls on and there are
many things we still have fun doing together.
We get pleasure from our home and garden,
family occasions, short trips away, dining out
and socialising, and have become discerning
film buffs and armchair football experts.
We’ve made some lovely new friends, who
accept our limitations. Many of them also
have impairments. We consciously choose
medical professionals who are pleasant and
accommodating; after all, we do spend quite
some time in their company. We know as
patients we are entitled to be treated respectfully.
Time to remember the carers
I paraphrase the ditty “who takes care of
the caregiver’s welfare while the caregiver’s
busy giving care?” If there’s one thing I could
ask of our politicians, it would be for greater
recognition of the role carers play and their
value to the community. Most of us have given
up careers, and with it the benefit of employer
superannuation to support us in our own later
years. This is a real concern for carers. Perhaps
in future government elections it will be our
time to be remembered.
10 / B R I D G E M A G A Z I N E
Cerebral palsy
Human
chameleon
Cerebral palsy (CP) is a developmental disability
that results from damage to or dysfunction of the
developing brain. The impairments associated with
cerebral palsy are nonprogressive but permanent.
Varying degrees of disability related to functional
mobility (movement and posture), daily living
skills, and communication / socialisation skills
results from these impairments.
Although Cerebral Palsy is a permanent condition,
as a person learns and grows and practices skills,
more control over movement may be achieved.
No two individuals are affected in the same way.
. . some people may suffer minor motor skill
problems, while others may be totally physically
dependent.
With effort it is possible to maximise function and
minimise the disadvantage a person experiences
as a consequence of disability or society and create
new opportunities for greater participation and
enhanced quality of life for people with cerebral
palsy.
With cerebral palsy, messages from the brain
may be sent to the rest of the body at the wrong
time, to the wrong place, or not at all. Just like
crossed telephone lines, the result is a confused
muscle. Some people appear clumsy; for others,
the muscles shake and jerk at the wrong time, or
become completely relaxed.
Cerebral palsy is not a disease - you can’t catch it.
It’s also not hereditary, nor does it mean there is
something wrong with the muscles. It’s simply the
brain sending the wrong signals at the wrong time.
Why does it happen?
Cerebral palsy is usually caused by injury or changes
to the brain during development. Lack of oxygen
during birth, injury or extreme premature birth
may also be causes. Common symptoms include:
• Clumsiness
• Involuntary muscle movements
• Drooling
• Slurred speech or no speech
• Stiffness or paralysis .
People with cerebral palsy have abilities and
goals just like everyone else they don’t like to be
thought of as victims in useless bodies - many can
live independently and be very successful. The
more society understands about cerebral palsy,
the easier it will be for those with the condition
to be accepted and participate fully in community
life.
This information is reproduced with the permission
of Cerebral Palsy Australia, the national peak body
of organisations that work with people with cerebral
palsy. Please visit
www.cpaustralia.com.au
for more information.
11 / B R I D G E M A G A Z I N E
In his 1983 fake documentary Zelig, Woody Allen
plays a character, Leonard Zelig, a kind of human
chameleon who takes on the appearance and
behaviour of whoever he is with. Now psychologists
in Italy have reported the real-life case of AD, a
65-year-old whose identity appears dependent
on the environment he is in. He started behaving
this way after cardiac arrest caused damage to the
fronto-temporal region of his brain.
When with doctors, AD assumes the role of a
doctor; when with psychologists he says he is a
psychologist; at the solicitors he claims to be a
solicitor. AD doesn’t just make these claims, he
actually plays the roles and provides plausible
stories for how he came to be in these roles.
Is it justice?
Suzanne Brown and Glenn Kelly from Diverge
on the injustice of the justice system
People with Acquired Brain Injury (ABI)
are significantly over-represented in the
criminal justice system. Recent Australian
and international research has found that over
40% of prisoners have acquired a brain injury.
Studies that included people who experienced
loss of consciousness, concussion or mild
traumatic brain injury have reported prevalence
rates of approximately 60% to 90% among
prison populations. Given the numbers of
people with a brain injury, intellectual disability,
and mental illness within Corrections, it is
arguable that employees of the Department of
Justice work as much in a disability system as a
justice system.
Recent Australian research indicates that,
compared to the general population, people
with a brain injury have higher rates of contact
with police, more court appearances and more
convictions, longer periods of incarceration,
and are more likely to be victims of crime.
People with a brain injury generally commit
relatively minor offences (e.g., 40% of offences
relate to theft and road traffic infringements),
are under the influence of alcohol at the time
of the offence, and have difficulty accessing
information about their rights or legal situation.
Those who come into contact with the
criminal justice system typically have very
complex life circumstances. Many present
with multiple and complex needs, and may
be experiencing co-existing mental illness,
alcohol or drug dependence, health complaints,
breakdown of the family unit or unstable
accommodation. There is evidence to suggest
that complex circumstances can be precipitated
and exacerbated by contact with the criminal
justice system.
Cognitive and behaviour changes
Cognitive and behaviour changes that often
follow a brain injury (such as disinhibition
and impaired impulse control, poor social
judgement, irritability, low-frustration
tolerance, anger and aggression) can lead to
behaviour that falls outside societal norms and
contravenes the law. For example, poor memory
and executive function may result in a person
forgetting to pay for purchases, or neglecting
fines and being legally pursued. Impulsive
behaviour may compel someone to put a
grocery item in their bag, and subsequently be
charged for theft.
Disinhibited behaviour in a community
setting, such as swearing or urinating in public,
may result in charges for offensive behaviour.
People with a brain injury sometimes sign
contracts that they don’t fully understand (such
as rental agreements, mobile phone offers,
loans or a house mortgage) and then fail
to comply with the agreement, resulting in
prosecution for fraud. Reduced frustration
tolerance, susceptibility to stress and poor
anger management can result in heated social
exchanges or assault (as either a perpetrator
or victim). These difficulties can create a cycle
where a person is charged, convicted and
sentenced, rather than treated, rehabilitated and
supported in the community.
The cycle of recidivism
Both individual factors and systemic barriers
present significant challenges, and unfortunately
these can contribute to a cycle of recidivism. The
individual may have limited understanding of
their legal rights, respond impulsively without
thinking strategically through the issues, be
intimidated and make false confessions, have
trouble controlling their emotions in court, or
have difficulty communicating.
The ‘system’ may fail to identify that the
person has a cognitive impairment, may fail to
provide a fair and equitable response with respect
to dealing with disability issues, be unable to
arrange affordable legal services as needed,
or not provide adequately trained staff and
appropriate procedures for dealing effectively
with persons with cognitive impairment.
We have a long way to go in terms of equity
and just responses. People with a brain injury
can be disadvantaged at each stage of the
criminal justice process. For example, a police
officer might assume that a victim of crime
who has a disability will not be a credible
witness when presenting evidence, and so the
case may not be pursued as rigorously. Duty
lawyers may not recognise ABI (the “hidden
disability”), thereby leaving a charged client
to be judged without adequate consideration
of their disability. People with a brain injury
are not eligible for the same service supports
as people with an intellectual disability. Only a
small proportion of these people are managing
to access specialist disability legal services.
Lack of support
Release from prison to the community would
normally be considered to be a positive change
of circumstances, however, release planning
processes can be inadequate, and individuals
with a brain injury are sometimes released into
homelessness, with limited or no specialist
support, or time-limited support from generic
services without the benefit of case history or
knowledge of the ABI service sector.
Individuals with cognitive deficits lose the
routine, structure, and predictability of the
prison environment that can help achieve stable
behaviour and mood. The stage seems, then, to
be set for recidivism and continued involvement
with the criminal justice system.
There is hope. A number of initiatives have
been rolled out in recent years to address the
inequities. Our team at Diverge is currently
working on a booklet of rights and resources
that will provide valuable information for
service providers, individuals and families.
Further information is available in the report “Issues and
inequities facing people with ABI in the criminal justice
system”, Brown & Kelly (2012). You can download the full
report at www.diverge.org.au, email info@diverge.org.au
or call 03 9329 4330.
Diverge is a non-profit organisation based in Victoria with
specialists in brain injury, complex cases and behavioursupport services.
To investigate further, Giovannina Conchiglia
and colleagues used actors to contrive different
scenarios. At a bar, an actor asked AD for a cocktail,
prompting him to immediately fulfil the role of
bar-tender, claiming that he was on a two-week
trial hoping to gain a permanent position. Taken
to the hospital kitchen for 40 minutes, AD quickly
assumed the role of head chef, and claimed
responsibility for preparing special menus for
diabetic patients. He maintains these roles until
the situation changes. However, he didn’t adopt
the role of laundry worker at the hospital laundry,
perhaps because it was too far out of keeping with
his real-life career as a politician.
AD’s condition is a form of disinhibition, but
it appears distinct from other well-known
disinhibition syndromes such as utilisation
behaviour, in which patients can’t help themselves
from using any objects or food in the vicinity. For
example, AD didn’t touch anything in the hospital
kitchen.
His tendency to switch roles is exacerbated by
anterograde amnesia (a loss of memory for events
since his cardiac arrest) and anosognosia – a lack of
insight into his strange behaviour.
“AD seems to have lost the capacity to keep his own
identity constant, as he adapts himself excessively
to variations in the social contexts, violating his
own identity connotations in order to favour a role
which the environment proposes”, the researchers
said.
One wonders if politicians might acquire a similar
syndrome in their efforts to be all things to all
people as they try to stay in power!
Conchiglia, G., Rocca, G.D. & Grossi, D. (2007). “On
a peculiar environmental dependency syndrome
in a case with frontal-temporal damage: Zelig-like
syndrome”, Neurocase, iFirst, 1-5.
Source: http://bps-research-digest.blogspot.com
and authored by Christian Jarrettl
12 / B R I D G E M A G A Z I N E
Brain disorders and dementia
Family concerns
Information and tips to reduce your chances of this
devastating brain disorder
Over 321,600 Australians are currently
diagnosed with dementia, and the impacts
of the disease are felt by countless more of
1
the carers, family and friends of those affected.
Research shows that people who have acquired
a brain injury are more likely to develop
dementia in old age than the general
2
population. Fortunately, there are a number of
changes that can be made in our own lives to
3
reduce our risk of dementia, and there are a
range of community organisations dedicated to
improving the quality of life of those currently
living with the disease.
What is dementia?
Dementia is a broad term used to describe
a range of symptoms, the most well-known of
3
these being a gradual loss of a person’s memory.
Other symptoms of dementia can include
deterioration over time in speech, motor skills,
thinking and planning, and the ability to carry
3
out daily tasks. People with dementia can lose
their ability to control their own behaviour
and may at times be socially inappropriate or
3
unaware. The disease is progressive, meaning
that symptoms become worse over time, and
towards the later stages of the disease people
require full-time care from family members or
staff in a nursing home. Dementia is a terminal
disease and at present, despite the best efforts of
3
our medical researchers, there is no cure.
There are a number of different types of
dementia, the most common being Alzheimer’s
disease, and others including vascular dementia
(usually related to stroke), Parkinson’s disease
dementia, alcohol-related dementia, and Lewy
Body Syndrome.
While the risk of dementia increases with
3
age, it is not a normal or natural part of ageing.
Although rare, people in their 50s, 40s and even
30s can be diagnosed with “younger onset”
4
dementia.
How are dementia & brain injury related?
Research has shown that people who have
had a moderate to severe brain injury are more
2
likely to develop dementia in later life. The
pattern of changes seen in the brain following
a moderate to severe brain injury can appear
similar to those changes seen in Alzheimer’s
2
disease. It is not as clear whether there is an
increased risk of dementia for those who have
2
had a mild ABI, such as a brief concussion.
Repeated, mild ABIs, such as those
experienced by professional sports people like
boxers and footballers, are related to a condition
similar to dementia known as Chronic
5
Traumatic Encephalopathy (CTE). This
condition is also seen amongst war veterans
who have experienced repeated, mild head
5
traumas. CTE has particular symptoms such
as changes in mood, thinking, behaviour, and
5
difficulties with balance and motor skills.
Reducing your risk of dementia
Researchers at the World Health Organisation
(WHO) have found that a person is more likely
to develop Alzheimer’s disease if they have
3
diabetes, high blood pressure or depression. A
person is also at greater risk if they are obese,
FIVE WAYS TO REDUCE YOUR RISK OF DEMENTIA
LOOK AFTER YOUR HEART Have your blood pressure, cholesterol, blood sugar levels and weight checked
regularly by your doctor. Avoid smoking.
BE PHYSICALLY ACTIVE National Physical Activity Guidelines recommend at least 30 minutes of
moderate-intensity exercise (e.g. walking, dancing, swimming, cycling) most – but preferably all – days.
MENTALLY CHALLENGE YOUR BRAIN For example, learn a new skill, participate in an educational course,
read about interesting or novel topics, or have a regular, engaging hobby.
FOLLOW A HEALTHY DIET Eat a variety of foods, including two serves of fruit and five serves of
vegetables per day. Limit your alcohol consumption to no more than two standard drinks in any one day.
ENJOY SOCIAL ACTIVITY Organising regular social outings with friends and family, joining a community
or volunteer group, or having a regular social leisure activity (such as cards) helps keep the brain active.
More information on how to maintain brain, heart and body health can be found at Alzheimer’s
Australia’s website (http://yourbrainmatters.org.au).
13 / B R I D G E M A G A Z I N E
don’t exercise regularly, if they smoke, or if they
3
have low levels of education. Other types of
dementia have other risk factors: for example,
heavy drinkers are more likely to develop
3
alcohol-related dementia. Based on these risk
factors, there are five important steps that we
can take to reduce our risk of dementia:
•Look after your heart
•Be physically active and follow a healthy diet
•Mentally challenge your brain
•Enjoy social activity.
Concerned about your memory?
If you are concerned about your memory or
that of someone close to you, it’s important to
speak to a doctor. A doctor will be able to listen
to your concerns and investigate a range of
possible causes of memory difficulties. An early
diagnosis of dementia ensures that a person has
access to support, information and treatment
options. Additionally, it provides that person
with an opportunity to be involved in the early
planning of their future care, including an
opportunity to discuss financial and lifestyle
wishes. When visiting your doctor, it may be
helpful to write down your concerns before the
appointment, and consider bringing along a
close friend or family member for support.
Thanks to Jeanette Van Luyn from Alzheimer’s Australia
(Qld) for contributing this article. Visit Alzheimer’s Australia
(Qld)’s website at fightdementia.org.au/Qld for a range of
information and fact sheets for people with dementia,
those who care for them, and the general community. You
can also contact the National Dementia Helpline (1800 100
500), a free telephone service that provides information,
support and advice about dementia and memory loss.
REFERENCES
1 Australian Institute of Health and Welfare (2012).
Dementia in Australia. AIHW: Canberra.
2 Shrively, S.; Scher, A.I.; Perl, D.P.; Diaz-Arrastia, R. (2012).
Dementia resulting from traumatic brain injury: What is the
pathology? Archives of Neurology, 69(10), 1245-1251.
3 World Health Organisation (WHO). (2012). Dementia: A
Public Health Priority. WHO: Albany, NY, USA.
4 Sampson, E.L.; Warren, J.D.; Rossor, M.N. (2004). Young
onset dementia. Postgraduate Medical Journal, 80, 125-139.
5McKee, A.C.; et al. (2010). Chronic traumatic
encephalopathy in athletes: progressive tauopathy
following repetitive head injury. Journal of Neuropathology
and Experimental Neurology, 68(7), 709-735.
No matter who experiences it, a brain
disorder ends up affecting the entire family
“No one is immune to getting that phone
call — the one that tells you something
bad has happened to your family. Be it a
diagnosis of a life-threatening disease or an
involvement in a horrific accident, you never
expect it to happen to someone you love,”
writes caregiver and mother of eight Dixie
Coskie.
No matter who experiences it, brain injury
ends up affecting the entire family. We use our
brains to relate to others and to communicate
our needs; and when that connection is
disrupted by a brain injury, life can suddenly
feel chaotic and stressful.
Although the injury happened to Dixie’s
13-year-old son, she notices the rippling effect
it has on her relationships with her other
children, her husband, her friends … her whole
life. In fact, many people notice that their
family roles can change significantly after a
brain injury. A spouse can become a caregiver;
a child might experience challenges at school.
Oftentimes, families experience a tremendous
amount of stress due to the struggles they face
after injury, but the good news is that there are
a number of resources available that can help
families navigate life after a brain injury.
And like many other parents after a family
member sustains a brain injury, Dixie had to
learn how to talk to her other children about
what had happened to their brother and how
his injury might affect their lives in the long
term.
What are some common concerns that
families express after a brain injury?
While no family is ever prepared for the
life changes a brain injury brings, almost
every family following a brain injury wants to
know how they can help during the recovery
process, and they want to learn about ways they
can protect themselves against the financial,
psychological and social upheaval that a brain
injury can cause.
Immediately after a brain injury, it’s common
for families to place all their energies and focus
onto the person with the injury. As the person
begins to move through the rehabilitation
process, family members begin to ask questions
that extend beyond the person’s physical wellbeing. They want to know about what kinds
of programs and services are available, and they
may even seek out a brain injury support group
to help gain additional insight about dealing
with brain injury.
After some time has passed, families begin
asking questions about the long term. They
want to learn ways they can minimize the
damage caused by the injury, and they want
to find ways to improve the quality of life for
everyone in the family.
Where can families turn to for support and
guidance?
Most major hospitals have case managers or
social workers who can suggest local support
groups for families dealing with brain injury.
You should never underestimate just how
helpful a support group can be, because they
act as information-rich meetings where people
can learn about the best resources. They’re also a
great forum for people to discuss the emotional
side of the injury.
One of the best things a family member can
do is to become as educated as possible about
the injury. Brain Injury Associations usually
offer free information packets to families,
and often have number of family guidebooks
available for order or download.
Another major resource available to family
members are state and national conferences
that focus on brain injury. Many people
find themselves inspired and revitalised after
attending talks and meeting other people who
understand the challenges caused by brain
injury.
Used with permission from BrainLine.org, a WETA website.
www.BrainLine.org
FURTHER READING
Visit http://synapse.org.au for our extensive range of fact
sheets. Some of the behavioural topics include:
• Changes in Relationships
• Self-care Strategies for Carers and Families
• Coping with Conflict.
14 / B R I D G E M A G A Z I N E
and are not supported by the hotel and alcohol
lobby. As a result, governments are often too
cowardly to support them.
Restrictions used in the Newcastle model
The ‘Newcastle Model’ is often quoted as the
‘gold standard’ in this area and is most probably
the most well studied strategy in this area in the
country. Prior to March 2008, Newcastle had
the highest rate of alcohol-fuelled violence in
NSW. A series of restrictions was placed on 14
licensed premises (most of whom were trading
to 5am) including:
•a mandatory, precinct-wide 3.30am closure
•a 1.30am lockout
•from 10pm – no sale of shots, no sale of mixed
drinks with more than 30ml of alcohol, no
RTDs stronger than 5% alcohol by volume
were permitted to be sold, and no more than
four drinks were to be sold to any patron at
one time.
Some of the identified (and often quoted)
benefits of the ‘Newcastle Model’ have included:
•33% fall in alcohol-related non domestic
assaults, a 14 year low
•50% reduction in night time street crime
•
26% reduction in related hospital ED
admissions.
Alcohol-related violence
Paul Dillon from Drug and Alcohol Research & Training Australia
discusses possible solutions to this alarming trend
With yet another teenager in a critical
condition in hospital in NSW after being
‘king-hit’ (that so shouldn’t be how we
describe this violent act) in Kings Cross, the
community is yet again debating what should
be done about what appears to be a growing
alcohol-related violence problem in this
country. What makes this incident so much
more distressing is that it happened just metres
away from where Thomas Kelly was killed after
being punched in an act of senseless violence
just months ago.
if they haven’t been a victim of alcohol-related
violence themselves, there’s a good chance they
know someone who has been.
Over the years I have been interviewed
countless times on this topic and my answer has
always been the same – if you want to reduce
alcohol-related problems (including violence)
then increase the price of alcohol, reduce
accessibility and remove alcohol advertising and
sponsorship of sport. It’s a simple answer for an
extremely complex problem but is that really
what the evidence says?
Is there an answer to the problem?
There are 70,000 victims of alcohol-related
violence in Australia each year. Some 14,000
people are hospitalised, almost 3,500 of them
with brain injuries, and research estimates that
anywhere between 23 to 73% of all assaults in
this country are linked to alcohol. This is not a
small problem, it affects many Australians and
The link between alcohol and violence
What is the link between alcohol and violence?
Certainly heavy drinking and intoxication are
associated with physical aggression, but the fact
is that the majority of drinkers do not become
perpetrators of violence, so the link is not so
simple. The evidence suggests it is a result of a
complex interaction of variables:
15 / B R I D G E M A G A Z I N E
•pharmacological effects of alcohol on the
cognitive, affective or behavioural functioning
of the drinker
•individual characteristics of the drinker – age,
gender, personality traits, predisposition to
aggression, etc.
•effects of the drinking environment – a range
of factors such as overcrowding in a venue,
role and behaviour of venue staff, etc.
•societal attitudes and values, including a
culture of drinking to deliberately become
intoxicated.
There is very little we can do to impact on
the first two variables, so most of the research
in this area has concentrated on making change
to the drinking environment – e.g. making
venues and the outside environments safer.
Unfortunately, many (but not all) of the
strategies identified in the research are often
about reducing or limiting access to alcohol,
Why don’t other cities use restrictions?
So if it worked so well, why hasn’t it been
picked up and implemented across the country?
Certainly the main reason is that the hotel and
alcohol industries don’t want it to happen.
There has been a general trend towards
the liberalisation of liquor licensing legislation
across Australia, as well as a deregulation of
the sale of alcohol. This has led to a substantial
growth in the night-time economy, something
governments don’t want to lose. Also lobby
groups fought hard to get these changes and
they certainly have no intention of losing some
of what they have gained without a fight!
To be completely honest, there are a range of
other barriers too, many of which simply didn’t
exist 10 to 15 years ago.
When it comes to alcohol promotion
and marketing, we’re now competing with
supermarket chains – no-one knows how to
market like they do and the retail alcohol
market is worth $14 billion a year! We are
encouraged to buy alcohol in bulk, with huge
discounts offered by the supermarket chains
when you buy more.
Pre-loading, side-loading and post-loading
are all new phenomenon identified across all
ages – drinking before you go out is the norm
today. And let’s not forget the relationship
between alcohol and sport – this is locked in
tight! Play sport or watch it – drinking is usually
sold as part of the experience.
Cultural changes are needed too
We need to make change to the drinking
environment (it’s certainly the simplest of the
four variables to implement) but if we don’t
try to make cultural change at the same time,
we are not going to get anywhere. Everyone
keeps talking only about the ‘binge drinking’
culture but let’s not forget the ‘glorification of
violence’ culture that is growing, particularly
in sport. Footballers bashing each other in the
head and cricketers verbally abusing each other
and it is being justified and even celebrated by
commentators and the public alike.
What can we do?
So as an individual, and particularly a parent,
what can you do in a simple way to start the
process of cultural change? Here are my four
simple tips:
•Make sure to take a close look at your own
drinking behaviour and try to identify the
messages you’re modelling.
•Footballers are footballers – they aren’t
gladiators. This move towards the idea of
a Roman arena that is heavily promoted,
particularly in the NRL is dangerous. Young
people need to be made aware that a punch
on a football field is still violence and it can
be deadly.
•Most people who get punched do not get back
up again without an injury – the violence we
see on the TV, in movies or in video games
does not reflect what really happens. I’m
certainly not saying we should shield them
from watching anything but having regular
discussions about what they are seeing is vital.
•Most importantly, bullying is not acceptable
in any form – talk about the consequences
and make your values clear.
When Thomas Kelly died in 2013 I was
quoted many times as saying that his would
become the face of the alcohol-related violence
issue and would result in some sort of change.
I had no idea that we would have so many
more faces to add to the list of those affected
by this senseless violence in such a short period
of time. Of course it’s a binge-drinking issue
and increasing the price of alcohol, reducing
accessibility and removing alcohol advertising
and sponsorship of sport will make a difference,
but we also need to address other cultural issues
or we will simply be wasting our time.
This is a condensed version of a post titled “Can we prevent
alcohol-related violence?” on the ‘Doing Drugs with Paul
Dillon’ blog. Visit http://doingdrugs-darta.blogspot.com.au
to read the full version.
Paul Dillon is director of Drug and Alcohol Research and
Training Australia (DARTA) which provides education
and training expertise as well as high quality research
assistance on a wide range of alcohol and other drug issues.
Visit the DARTA website at http://darta.net.au
Families
facing alcohol
dependency
A dependency on alcohol or other drugs can
emerge after a brain injury for a number of
reasons. The person may have already had a
problem before acquiring the brain injury. The
dependency may have arisen from trying to cope
with depression and frustration at the recovery
process. Or personality changes arising from
impulsivity may mean the controls are lifted on
what was once a safe usage.
If the family member with a brain injury is still in a
rehabilitation program, advise the team and work
with them to:
•Encourage your family member to take
responsibility for his or her own behaviour
•Provide support and consistent feedback
•Help your family member deal with the feelings
that may have caused the dependency.
Be aware that since brain injury may lead to
decreased judgment, poor memory, and difficulty
in concentration, the person may not listen to your
advice. Sometimes the best way to prevent use of
alcohol and other drugs is to make sure your family
member has enjoyable activities and relationships
to fill the day. Preventing social isolation can go a
long way to preventing a drug dependency.
Talk with your family member about what he or
she will do when friends offer a drink. Discuss
ways of coping with stress and other problems in
a positive way. Go over ways to have fun without
drinking.
Remove alcohol, tobacco, and other drugs from
the house. If that isn’t possible, at least keep them
out of sight where possible. Also keep an eye on
over-the-counter drugs and substances that could
be inhaled. Ask one doctor to take responsibility
for all medications to prevent your family
member from misusing or abusing prescription
medications.
If drinking or using drugs is causing problems for
someone you care about, you are not alone. Help
your family member take charge of his or her
life. You can talk with rehabilitation specialists
and health educators, or attend support groups
like Al-Anon and Nat-Anon. Contact the Brain
Injury Association in your State for a list of useful
organisations.
16 / B R I D G E M A G A Z I N E
information showing that even in cases where
people were not unconscious, they may face
lifelong difficulties with short-term memory,
emotional instability and a wide range of other
effects, a far cry from the instant recovery
portrayed by Hollywood.
Parkinson’s
disease
Parkinson’s disease is a poorly understood disease.
Many people associate the disease with an elderly
relative or the odd celebrity on TV. The majority of
the population understand it to be ‘just the shakes’.
The reality is much different – it is the second most
common neurological disease in Australia after
dementia, and affects 100,000 Australians.
Ongoing physical issues
Unfortunately, survivors of a brain injury
are often left with much more than life-long
cognitive effects, such as susceptibility to
stress, inability to work, memory problems and
extreme fatigue. Traumatic brain injury often
leaves lasting effects in terms of musculoskeletal
problems, migraines, auditory and visual
disabilities, and neuroendocrine disorders.
Insurance companies and generic rehabilitation
services are often unaware of the frequently
ongoing nature of deficits from traumatic brain
injury and that a ‘return to normal health’ does
not occur in the majority of cases. In some cases
survivors need to take legal action to obtain the
rehabilitation and support that their insurance
guarantees.
There is a public perception that legal
compensation payouts are often very large;
but such multi-million dollar awards take into
account that the person will need cognitive
and physical therapy or support for the rest of
their lives.
Parkinson’s is a neurodegenerative disorder of
unknown cause. While advancing age remains the
greatest risk factor, one in 10 sufferers are diagnosed
before they reach 40. There is no objective test, or
biomarker, for Parkinson’s disease, so the rate of
misdiagnosis can be relatively high, especially when
the diagnosis is made by a non-specialist.
Whilst living with Parkinson’s will require
modifications in some areas of your life, it is important
for you to remain positive during the changes and
maintain a healthy and active lifestyle. A variety
of medications is available to effectively treat the
symptoms and help you lead a full life.
Parkinson’s disease results from the loss of cells in
various parts of the brain, including a region called
the substantia nigra which produces dopamine. Loss
of dopamine causes neurons to fire without normal
control, leaving patients less able to direct or control
their movement.
The exact cause of Parkinson’s disease is unknown,
although research points to a combination of genetic
and environmental factors. The single biggest risk
factor for Parkinson’s disease is advancing age. Men
have a somewhat higher risk than women.
People are generally most familiar with the motor
symptoms of Parkinson’s disease:
• Slowness of movement
• Rigidity
• Resting tremor
• Postural instability, or balance problems.
Other physical symptoms, such as gait problems
and reduced facial expression, may also occur. Other
symptoms can include:
• Cognitive impairment
• Mood disorders
• Sleep difficulties
• Loss of sense of smell, called hyposmia
• Constipation, speech and swallowing problems.
This information is an exerpt from the Shake It Up Australia
Foundation, a not-for-profit organisation that promotes
and fund Parkinson’s disease research in Australia. Visit their
website at http://shakeitup.org.au for more information
about Parkinson’s disease.
17 / B R I D G E M A G A Z I N E
Brain injury?
But you look fine!
How do you respond when people refuse
to believe you have a brain injury?
Acquired Brain Injury (ABI) is often
called the invisible disability because a
person may outwardly appear to be
unaffected, particularly if the cause was a brain
tumour, near drowning, mild stroke or drugs.
Even when the injury is caused by trauma such
as a motor vehicle accident, the scars may heal
so well that the person appears to be fully
recovered.
Unfortunately even a so-called ‘mild’ brain
injury can leave a person facing cognitive
deficits in memory, concentration, motivation,
fatigue, stress, depression and reduced self
awareness. Survivors of a brain injury often find
that family, employers and friends have trouble
accepting there can still be problems when there
is no easily observed physical evidence.
Family members often have the most trouble
understanding the invisible nature of acquired
brain injury. With effort, the survivor of a
mild to moderate brain injury can often hide
or compensate for their cognitive deficits so
that most people will not detect any problems
for a while. But families get to see beyond the
‘public face’ due to the amount of time they
spend together.
After the brain injury the family is frequently
confronted with a ‘new’ personality — a family
member who may be negative, unmotivated,
unable to carry tasks through to completion,
constantly forgetting things, unable to take
others’ needs into account, and prone to
depression or angry outbursts.
Before the brain injury, the person usually had
some degree of control over these areas and how
they chose to act and speak. Now they may have
lost these abilities and may only regain some
control through compensatory strategies, if at all.
How to convince others
How does a survivor convince sceptical
family or friends that they do have a brain
injury? Trying to discuss the issue is often
difficult. Family members are often resentful
if they have been coping with some of the
more unpleasant sides of a brain injury, such as
anger or self-centredness. Discussions can break
down into recriminations, and the brain injury
can be seen as a poor excuse for inappropriate
behaviour.
Families often come to an understanding of
ABI through simply reading about it. Previously
their ideas may have been based on what they
had seen in movies — a person is knocked
briefly unconscious, forgets who they are, their
memory is restored by another bump to the
head, then they are fine again.
There is a wealth of medical research and
What about the ultimate sceptics?
Some people may refuse to believe a brain
injury exists unless there is firm medical proof.
Usually a moderate to severe brain injury leaves
scarring that will clearly show on MRI or CAT
scans. The brain does have a limited ability to
heal itself; and in milder cases, a scan conducted
years or even months after the injury may no
longer show evidence, although the cognitive
deficits remain.
There is also diffuse brain injury, where
the damage occurs at a microscopic level
throughout the brain, and will not show on
scans despite the huge impact it can have.
In these latter cases a neuropsychological
assessment is used to identify a brain injury,
its effects and the strategies needed for
rehabilitation. Testing includes a variety of
different methods for evaluating areas such
as attention span, memory, language, new
learning, spatial perception, problem-solving,
social judgment, motor abilities and sensory
awareness.
These tests can be quite expensive. Universities
offering programmes in neuropsychology often
provide evaluations at low cost or on a sliding
scale as part of their student training.
It is no wonder that brain injury survivors get
discouraged when others won’t accept that they
have this disability, and the survivors have to
face criticism instead of support.
Helmet petition
In the last issue of Bridge we reported on the messy
state of affairs when it comes to helmet standards and
rules in Australia. The conflicting rules and regulations
result in a number of issues:
•Crossing some State borders renders a helmet illegal
•In some States it is impossible to buy a legal helmet
•These contradictions defer much-needed reform of
the Australian standards for motorbike helmets
•Importers are deterred by the mess so helmet prices
increase and range of helmets decreases.
Synapse began a petition to force the relevant
Government departments to begin cleaning the
mess up and begin the reforms that will lead to safer
helmets and hopefully less brain injuries in the long
run. There are over 900 signatures to date, with more
predicted as motoring publications pick up on the
issue.
Visit http://synapse.org.au and read our “Motorbike
Helmets and Brain Injury Prevention” fact sheet.
Hearing issues
A brain injury can damage both mechanical and
neurological processes and result in a variety of
hearing difficulties. Our hearing process has two
stages: the mechanical and a neurological process. The
mechanical process is carried out by the ear which has
three sections, the outer, middle, and inner ears. The
outer ear, consisting of the lobe and ear canal, protects
the more fragile parts inside.
The middle ear begins with the eardrum, a thin
membrane which vibrates in sympathy with any
entering sound. The motion of the eardrum is
transferred across the middle ear via three small
bones to the inner ear where a tube called the cochlea
is wound tightly like a snail shell. From here the
neurological process begins and the brain translates
vibration into electrical impulses.
Trauma most commonly affects the mechanical
process. An eardrum may rupture, any of the small
bones could break or there could be bleeding or
bruising of the middle ear. Sometimes damage to the
parietal or temporal lobes can disrupt the neurological
process. Thankfully many hearing difficulties are not
permanent and can be reduced or eliminated with
treatment.
Visit http://synapse.org.au and read our “Hearing
Problems” fact sheet.
18 / B R I D G E M A G A Z I N E
Why I care about Youngcare
Lisa Cox knows only too well that for many young Australians, aged
care facilities are the only place they can call home
Brain Disorders are usually thought of as
something affecting older people. But for
the thousands of young people with a
brain disorder who need 24/7 care, aged care
facilities are usually the only place they can call
home.
I celebrated my 25th and 26th birthday
with your grandparents. Well, maybe not
your grandparents but they were somebody’s
grandparents.
A bit of background
My story appeared in the June 2012 edition
of Bridge but here is a condensed version . . .
At age 24 I went into hospital following a brain
hemorrhage. I was discharged a year later but
returned after several months to have my hip
replaced. Last year I returned for (my second)
open heart surgery.
See a pattern here? My health complications
are similar those of older people, so I’ve spent
much of the last few years in rehabilitation
rooms, hydrotherapy pools and hospital wards
with people old enough to be my grandparents.
Don’t get me wrong, the “oldies” (as we
affectionately called them) were a delight and
the staff were great but I still couldn’t wait to
get out!
One of the things that kept me sane and
optimistic was knowing that eventually I would
get home to my loved ones and see friends my
age again. Unfortunately, there are over 7,500
young Australians living in aged care, and sadly
they may never be going home.
Why are so many young Australians in
nursing homes? Because they need 24/7 care
and living alternatives are very limited. It is
a terrible reality but one that Youngcare and
Synapse are working to remedy.
Youngcare is dedicated to helping young
people get out of aged care and nursing homes.
I’ve been an outspoken supporter for nearly a
decade and volunteered in their first Brisbane
office back in the days when it was just a
handful of us squished into a back room
of someone else’s office. It’s been wonderful
to watch Youngcare grow and gain wider
community support.
Like Synapse, Youngcare is improving the
quality of life for people they support. But
neither Youngcare nor Synapse will rest on
their laurels because there is still a lot of work
to be done.
Young people deserve young lives
Unlike my fellow patients, I didn’t have
stories to share from the world wars and I didn’t
have grand kids to talk about. In fact some of
their grandkids were older than me!
Nobody shared my taste in music or my
enthusiasm to eventually re-enter the workforce
– they had all retired many years earlier. I
experienced the sorts of things that youth
had not prepared me for, like the death of
several elderly patients around me. I could
go on but as I’ve said in many talks on behalf
of Youngcare, aged care is no place for any
young person. I’m just grateful that my living
arrangements weren’t permanent.
The following has been adapted from the
Youngcare website and further highlights the
need for change.
In addition to the 7,500 young Australians
living in aged care, a further 700,000 are being
cared for at home by family and friends, often
with limited support.
Being young is about having a lifetime
ahead of you, yet aged care is designed for
people at the end of their lives. The realities
of aged care mean a young person will share a
residence where the average age is 83 and the
average life expectancy is just three years. More
importantly, in most cases, their specific care
needs will not be met and differ greatly to those
of the elderly residents.
For those young people living in aged care,
statistics suggest that:
•44% will receive a visit from friends less than
once a year
•
34% will almost never participate in
community based activities such as shopping
•21% will go outside the home less than once
a month.
Having overcome tremendous personal health obstacles,
Lisa Cox is a passionate advocate for disability awareness
and is a Synapse Ambassador. Visit http://lisa-cox.com to
read more about Lisa’s inspiring story and work.
YOUNGCARE – HELPING TO GET YOUNG PEOPLE OUT OF AGED CARE
21% of young people in aged care facilities go outside less than once a month.
19 / B R I D G E M A G A Z I N E
Lisa Cox became a staunch supporter of
Youngcare after acquiring a brain injury. She
appeared in this Youngcare poster to raise
awareness of younger people forced to live in
aged care facilities.
Youngcare was established in 2005 following the inspirational story of one woman’s battle to find relevant and dignified care. Currently more than 7,500 young
Australians (under the age of 65) with full-time care needs are living in aged care simply because there are few alternatives. There are also 700,000 more young
Australians being cared for at home by family and friends, often with limited support.
All young people deserve to live young lives. Youngcare is committed to raising awareness of the issue to drive change and create real choices for young Australians
and their families.
Youngcare’s work includes raising awareness, a support and information phone service, lobbying Government, providing At Home Care Grants, building more
Youngcare housing, and undertaking research. Visit the Youngcare website at www.youngcare.com.au
20 / B R I D G E M A G A Z I N E
I’m bored – I’m
chairman of the bored
Life can be tedious after a brain injury
– here’s what you can do about it
Diagnosing a
brain disorder
Diagnosis of brain disorders has had a distinctly shaky
history. Over the years, many people have acquired
brain injuries which were not detected by doctors, as
there was no coma involved.
In fact, it has only been over the last decade or so
that most medical authorities realised that a person
can acquire a brain injury even when no period of
unconsciousness occurs after an accident.
When the head is struck or moved violently there
will sometimes be no loss of consciousness, and the
person may not seem to need medical attention. Even
so, there may be some mild damage to the brain that
can interfere with everyday living. The injury may
not be diagnosed, but the person may be observed
responding more slowly than usual, or complaining
about physical and mental problems. Symptoms of
mild brain injury may include fatigue, headache,
dizziness, hearing loss, ringing in the ears, memory
problems, sleep difficulties, irritability and short
attention span. Although termed “mild”, this type of
injury can lead to long-term cognitive problems that
severely impact on the individual’s life.
It’s been a few months since you acquired
a brain injury. You’ve been discharged
from hospital, finished whatever
rehabilitation was on offer and have settled back
in at home. It has been very frustrating finding
all these limits on what you can and can’t do
anymore. Initially you were relieved to be alive
but now you are bored and finding it hard to
fight depression.
This is a very common state for many, as the
long wait begins to see if you’ll recover enough
to eventually go back to work, study, and all
the things you previously did. It’s important
to fight that boredom before it turns into full
blown depression that is much harder to tackle.
Pace yourself
You will already know that if you overdo
things you’ll be hit with fatigue that can take
a few days to recover from. It’s crucial to not
overdo things and wipe yourself out! Work out
how long you do physical, mental and social
activities for and stick to time limits. Also, plan
these for when you feel most energetic.
21 / B R I D G E M A G A Z I N E
Make a new plan, Stan
You had a former life that already had
structure — now you have virtually none. To
make it worse, your injured brain needs much
more structure than before. Routine is your
friend, as your brain has trouble planning your
day, prioritising activities, making decisions,
getting started on tasks, and realising when you
have pushed yourself too hard. A weekly plan
can do all this for you.
Draw up a chart of your week and make
time slots throughout each day. Examples of
activities may include:
•Exercise
•Rest breaks and short naps
•Social activities
•Meals
•Reading
•Crosswords
•Personal rehabilitation exercises
•Housework
•Hobbies.
This may sound boring in itself, but a daily
plan of activities can be the perfect antidote to
boredom.
Rehabilitation never finishes
Unless a brain injury has been very mild,
it is likely that you will have some ongoing
effects for the rest of your life. Don’t assume
the hard work finished when you stopped
seeing the rehabilitation team. People who are
very motivated to continue their own personal
rehabilitation often find they are still making
progress years later after their brain has healed
itself. Work out what issues you still face, and
possible strategies to compensate for them.
Work these into your timetable. Discuss all of
this with your family members, especially if you
have problems with self-awareness.
Break big things into small steps
Having a project to work on can be very
motivating, but a common problem after a
brain injury is feeling overwhelmed by the
details, or not knowing where to start. Break it
down into small manageable steps that you can
work into your timetable.
Celebrate the small things
A brain injury can humble all of us – picture
the former CEO of a multinational company
who cries with joy the first time he manages
to dress himself without help! Celebrate the
small things, because in reality they aren’t small
things at all. Usually only another person who
has a brain injury can understand the incredible
effort and willpower it has taken to accomplish
those “small” steps.
Develop those social skills
This area if often neglected in rehabilitation.
A brain injury can cause the following issues:
•Talking constantly and not listening to others
•Asking intrusive questions
•Self-centred behaviour
•Inappropriate comments and behaviour
•Standing or sitting too close to others.
Regaining lost social skills is critical
to retaining friendships, making new ones,
keeping healthy family relationships, and any
eventual return to work, study or community
involvement.
If you have any of these issues, talk with
close friends or family members about ways to
relearn social skills and work these into your
weekly plan.
Accept the new you
This also means coming to terms with the
new you. It is very normal to be angry, depressed
and frustrated — you will need time to work
through these normal emotions. But eventually
you will need to accept the new you, and find
reasons for liking yourself too. Sounds tough? It
is, but you may find that you discover hidden
strengths in your character in the struggle to
rebuild a new life. Often this gives people a
sense of compassion for others with disabilities
that they may not have had before. Many find
that a brain injury has made them a stronger,
more considerate person because of the many
challenges they have been through.
FURTHER READING
Go to our fact sheets at www.synapse.org.au and check out
the following fact sheets:
• Rehabilitation tips
• Steps to a healthier brain
• The post-rehabilitation slump
• When will I get better?
Three separate processes work to injure the brain:
bruising (bleeding), tearing, and swelling. In a
traumatic brain injury, the soft tissue of the brain is
propelled against the very hard bone of the skull.
Blood vessels may tear, which releases blood into areas
of the brain. The skull does not expand, so the blood
begins to press on softer things like brain tissue. Brain
tissue is very delicate, and will stop working properly
or may even die off.
With trauma, the brain is thrown forward, then
bounced backward. This can result in tearing of brain
tissue which breaks the connections between neurons.
This happens on a microscopic level, and may not
show on standard medical tests.
The brain can swell in the same way a damaged
muscle does. This pressure pushes down on the brain
and damages structures in the brain. If there is too
much pressure, this can stop important structures
that control breathing or the heart rate. Sometimes,
doctors will install a “relief valve” to let off the excess
pressure.
As with all injuries, prevention is the best cure. This
particularly applies if you already have a brain injury,
as you will now be more susceptible to further brain
injuries.
Visit http://synapse.org.au to read these fact sheets:
• Treatment and Diagnosis of a Brain Injury
• Traumatic Brain Injury
• Diagnostic Tests and Scans.
22 / B R I D G E M A G A Z I N E
Why our heads
won’t get bigger
Anatomy prevents the exceptional size of the human
brain from getting even bigger. At birth, an infant’s
skull is as large as it can be without endangering the
lives of most, if not all, mothers and infants during
childbirth.
Prior to the intervention of modern medicine,
childbirth was a dangerous event that frequently
resulted in the death of the mother, as it still does
among populations without access to modern
medicine. The difficulty experienced by humans in
giving birth is nearly unique in the animal kingdom,
requiring the head of the emerging infant to be
rotated as it passes through the birth canal.
Female humans have large pelvic openings to
accommodate the birth of large-headed offspring, but
at a cost. The larger this opening, the thinner the bone
around it. Bones too thin can no longer bear the load
of the mother’s weight or the mechanical stresses of
walking and running, and a compromised ability to
flee dangers may prevent the female from coming of
childbearing age.
Brain size and pelvic opening size can be considered an
evolutionary trade-off between the ability of females
to reach and survive their childbearing and childrearing years, and their ability to bear big-brained
offspring.
At birth, the human skull is rather soft; it deforms
somewhat during its passage through the birth canal,
then recovers its shape. This allows it to expand to
make room for the brain, which continues to grow,
at the same rate as that of an unborn fetus, for an
additional year. In all other animals the growth rate of
the brain slows significantly at birth.
Common questions about behaviour
Answers from the team at the Acquired Brain Injury Outreach Service
The team at ABIOS has years of experience
in
supporting
people
through
rehabilitation after a brain injury. Here are
their answers to the most common questions
asked about challenging behaviours.
What kind of behaviours should I expect
when someone has had a brain injury?
The brain is involved in all aspects of
personality and control of behaviour so any
brain injury can cause ongoing changes in
personality, mood and behaviour. Common
changes in behaviour include:
•Inflexibility and rigid thinking or behaviour
•Disinhibited and impulsive behaviour
•Difficulty initiating or starting activities
•Irritability, anger and low frustration tolerance
•Lack of insight and self-awareness of problems
•Lack of empathy or feeling for others
•Self-centredness or egocentricity.
Not everyone who has had a brain injury
will have behavioural changes, but severe brain
injury can cause all of these changes. For some
people, changes in personality and behaviour
may be the only sign of a severe brain injury.
Why does behaviour change?
Damage to some areas of the brain (frontal
lobes, temporal lobes and the limbic system)
can result in changes to the person’s ability
to be aware of, to control, or to change their
behaviour. This is because these areas control
personality and behaviour.
What can I do about behaviour problems?
The best thing you can do is to get a good
understanding of the person’s brain injury, and
get ideas about the strategies that will help them
to manage their behaviour.
Ask for help from others who know about the
behaviour – this might include the person with
the brain injury, family, therapists, psychiatrists,
psychologists or a clinical neuropsychologist, or
other brain injury specialists.
What are some strategies I can use to
manage behaviour?
There are some strategies that will help
manage, prevent and reduce challenging
behaviour. These include the following:
•Have a routine and provide as much structure
as possible
23 / B R I D G E M A G A Z I N E
•Have good communication – clear, direct,
often – and talk about issues, including the
behaviour and what to do about it
•Don’t be vague – tell the person what
behaviour you like/don’t like
•Have clear limits/rules about behaviour –
what you expect, what is appropriate or
inappropriate
•Give the person feedback and information
about their behaviour
•Be consistent in how you manage behaviour
•Be positive – notice and encourage appropriate
behaviour (people need at least twice as much
positive feedback)
•Take into account changes in thinking,
understanding or memory
•Use strategies that defuse behaviour and help
a person calm down – talk it through, change
the topic, change the task
•Use redirection, distraction, and diversion to
shift behaviour
•Use your sense of humour to defuse things
and reduce tension and stress
•Get support for yourself and for the person
with the brain injury.
How do I not take it personally?
Try to not take the behaviour personally
when the person is irritable, uncooperative or
difficult to get along with. This can be hard
when you feel frustrated, hurt, angry, upset or
fearful. Behaviour problems can occur because
of the brain injury and damage to particular
parts of the brain, and the person may always
have some difficulty with awareness, control,
and management of their behaviour.
The behaviour is not just directed at you – it
would happen to anyone providing care (family,
friends or paid staff ). It is important to tell
yourself that these behaviours may be due to the
person’s brain injury and not about you.
However, it is okay to feel the way that
you do – coping with difficult behaviour can
be hard. Try to ignore as much unwanted
behaviour as you can. Don’t ignore the person
– just the behaviour.
How can I manage stress?
Get support from people around you – talk
about ways to manage behaviour and cope
better – talk to friends, family, or talk to a
Counselor or to a brain injury specialist. It may
be helpful to talk about ideas to make things
work better (try to keep it positive and focus on
what you can do, not what you can’t).
Make sure you take the time to have regular
breaks. It is important to make the time for
your own relaxation and rest, so you have
enough physical and emotional energy. Keep in
touch with your friends and keep up with your
own hobbies and interests as much as you can.
Find out about more about brain injury so
you can understand any difficulties that the
person may have.
Is there a cure for behaviour problems?
There are no easy solutions for behaviour
problems after a brain injury. Behaviour is
caused by many complex factors (including
the brain injury) which may not change.
Intervention and management may help to
improve support for the person, for family, and
to assist in decreasing behaviour or in managing
behaviour more effectively.
In summary, be realistic.
Not all behaviour can be changed or prevented
after a brain injury. There is no simple “cure” or
“fix” for behaviour changes after a brain injury.
A person may have a permanent “behavioural
disability” because of the brain injury.
So set goals that can be easily achieved
considering:
•the person
•the brain injury
•the resources and support available
•the environment the person is in
•assessment of what changes are possible.
This is fact sheet is reproduced with the permission of
ABIOS (Acquired Brain Injury Outreach Service). Visit
www.health.qld.gov.au/abios/ to see their full range
of fact sheets. ABIOS is a specialist community-based
rehabilitation service to enhance the service system for
people with Acquired Brain Injury (ABI) and their families.
FURTHER READING
Visit http://synapse.org.au for our extensive range of fact
sheets. Some of the behavioural topics include:
• What is Positive Behaviour Support?
• ABC Approach to Behaviour
• Making a Positive Behaviour Support Plan.
24 / B R I D G E M A G A Z I N E
Living with
a brain
injury
Intimate
relationships
We all need someone to share
our lives, worries and joys with
“I got very tired of hearing how ‘lucky’ I
was,” says author Kara Swanson. “This
was not some vacation-gone-wrong that I
would return from with horrific tales of
adventure. From the moment I left that
hospital, I heard slap-on-the-back choruses of
‘It could have been worse!’ and ‘God, you were
lucky!’ Intellectually, I understood that. But
emotionally, I did not feel very lucky.”
There’s no denying that life is different after a
traumatic brain injury (TBI). In addition to all
the physical changes a brain injury may bring,
a TBI can also mean the loss of a career or the
disruption of an education. It can change your
plans for the future, alter the way you meet
and make friends, and affect the way you think
about yourself. Life after a brain injury usually
involves challenges, but that doesn’t mean life is
less valuable or fulfilling.
By writing a book about her struggle with
brain injury, Kara was able to embark on a
journey of self-discovery, one that required a
tremendous amount of honesty and courage in
order to face the reality of her new life. While
everyone with a brain injury embarks on their
own unique journey toward recovery, there are
some common experiences that many people
share — experiences that can offer tremendous
inspiration and support at various points in life.
25 / B R I D G E M A G A Z I N E
Dealing with the injury
Soon after the injury, most people tend to focus
on the abilities that have been lost. Emotionally,
the experience can be overwhelming, confusing,
and frustrating. But as time goes on, everyone
begins to grapple with their injury in both
productive and non-productive ways. One
common response is to deny the significance
of the injury; unfortunately, a brain injury can’t
simply be “walked off.” Brains are notoriously
slow to heal, which only compounds the
frustrating aspects of a brain injury.
Brain injury also has a tendency to bring a
lot of psychological challenges and may affect
mental health. Depression, anger, and anxiety
are common repercussions of brain injury, so
people with TBI should be vigilant to seek out
qualified care and support if they experience
mental health problems.
As people begin to regain lost abilities or
acquire new coping skills, they also begin to
accept the realities of their injury. At this stage,
a person might express that they are no longer
fighting the injury but rather seeking ways to
integrate their TBI into their lives.
For most people who experience a brain
injury, life will return to a similar pace. But for
many others, a TBI may mean months, years,
or even a lifetime full of changes.
Moving forward after a brain injury
A brain injury is supposed to set off a clear
chain of events, all of them around a person’s
medical care: the emergency room, the ICU,
hospital care and then rehabilitation. But there
isn’t a road map for all the aspects of life that fall
outside of medical care — just ask someone like
Kara, who seemed surprised that life marched
on despite her injury.
One of the realities about living with a
brain injury is that you may need additional
check-ups, routine doctor visits, or ongoing
rehabilitation. Even people who feel like they’re
“back to normal” may visit a neuropsychologist
for periodic testing or may incorporate various
cognitive exercises into their daily routine.
While most people who acquire a brain
injury recover quickly, for those with moderate
to severe TBIs — and their families — life may
need to be reinvented, reinterpreted . . . and
accepted as something different.
Used with permission from brainline.org, a WETA website.
Visit www.brainline.org for a wide range of articles and
useful information.
“She almost died. If she had, my life
would have been easier. I would have
grieved the loss, and gone back to
whatever it was I was doing, somehow better for
it all. In time, I would have found another love.
. . But she didn’t die, though the person who
survived is someone else, someone other, who
carries within haunting echoes of the lost one
who was my wife.” In 1992, Tom Gallant “lost”
the wife he knew and loved passionately when
they were t-boned at a traffic intersection.
Why do relationships change after a brain
injury?
Everyone needs to feel loved, to feel valued.
Like Tom and his wife, we all need people
to talk and laugh with, spend time with,
share ideas, worries, and joys. But friendships
and intimate relationships can often change
drastically for both people after a brain injury.
Here are some statements people often share
after they or a loved one has sustained a brain
injury:
•Our friends don’t call or come by anymore.
•I am lonely all the time.
•I can’t relate to other people.
•Other people don’t want to be around me or
my loved one.
•People seem to avoid me.
•Who am I now? How do we all fit together
now as a family?
•No one understands me or what I’m going
through.
•
I feel abandoned, rejected, unworthy,
different.
After an injury, family roles can change;
sometimes jobs are lost, finances can become
a significant worry, and with all these changes
come stresses on relationships. What can you
do?
Talk with people you trust. They may be
able to help you figure out solutions to your
problems, or talking to them may just make
you realize you are not alone.
Don’t isolate yourself. Friends and family
want to help. Let them. Create a positive
network of help and support. This can include
friends and family; it can also include people
from a support group who know what you are
going through.
Take care of yourself physically and
emotionally. Some fresh air or a walk can
often clear your mind and give you a renewed
perspective.
Consider finding a peer mentor. By
establishing relationships with others who face
similar challenges, you’re able to learn about
local support systems and the ins and outs of
dealing with them. More importantly, you can
develop a relationship with someone who can
empathize with you emotionally.
What about sex?
Talking about sex is tricky for a lot of people,
especially for people — and their partners
— after a brain injury. There can be a variety
of sexual problems associated with a brain
injury including diminished drive, physical
impairments, depression and lack of self worth,
among others. A change in roles within a couple
can also impact a couple’s intimacy. Once an
equal partnership, post-injury a couple may feel
more like a parent and a child, making intimacy
far more challenging for both partners, the
caregiver in particular.
If sexual problems don’t resolve themselves,
seeking the help of a mental health professional
who is familiar with brain injury, who specialises
in helping people cope with depression, and
who is comfortable discussing sexual difficulties
can help. There are also various treatment
options to consider:
•Medications for mood
•Medications for sexual dysfunction
•Individual and couples counseling
•Referral for endocrine workup
People with TBI can also be vulnerable to
sexual assault.
You are not alone
There are many reasons why relationships are
important to all of us. Take some time to think
about the positive changes that may come about
in your life when you have good relationships.
Share your feelings with important people in
your life and find ways to tell them how much
they mean to you.
Used with permission from BrainLine.org, a WETA website
at www.BrainLine.org
FURTHER READING
Read our fact sheets at http://synapse.org.au:
• Changes in Relationships
• Self Care Strategies for Carers and Families
• Acquired Brain Injury - Impact on Carers.
26 / B R I D G E M A G A Z I N E
A bumpy ride
Coming to grips
with anger
Robyn Kefford has
braced herself for the
challenge of living
with her husband’s
brain injury
After a brain injury, some find themselves
becoming incredibly angry at surprisingly small
things. They may also find themselves resenting
others, or holding on to grievances against
others. Family members and partners often find
themselves becoming ‘emotional punching bags’
as anger is directed at them, often when they have
done nothing to deserve the hostility.
Recognise what makes you angry
Knowing the ‘triggers’ to your anger is a great start.
You can avoid these situations or develop strategies
to cope. After a brain injury, you may not realise
you are actually angry until you’ve developed a
full-blown rage. See if you can learn to detect the
early signs while you can still think rationally and
act appropriately.
Seek reconciliation
Angry outbursts tend to alienate others and
eventually cause resentment. Asking forgiveness
is humbling, but it can free you from emotional
slavery. It can save family relationships too.
Read up on anger
If you know you struggle with anger, take the time
to read one of the many good books out there on
the subject. Check out the fact sheet on anger at
http://synapse.org.au/get-the-facts.aspx and work
on strategies to manage your anger.
Anger management
I met my husband in 2009, six years after
his car accident which left him with a
brain injury. I believed at the time I was
fortunate in that I met him after his accident – I
wasn’t in the unenviable position of grieving for
the loss of what once was, as many I have seen
do. However, I’ve slowly discovered that living
with a person with a brain injury can and does
come with its own grief.
The first thing I asked my husband for was a
copy of his CT brain report from his accident.
I was a registered nurse, and I naively believed
that this report would tell me everything I
needed to know. The report was NAD – no
abnormalities detected. I figured this was great,
but also confusing – why would my husband
be told he had a brain injury when the visual
evidence proved otherwise? I started to doubt
what he was telling me. I soon discovered that
issues and behaviours of a brain injury are not
what can be visualised on a CT scan!
It took quite a while for me to discover
many of the character traits and nuances that
accompany a brain injury, and as I have seen
27 / B R I D G E M A G A Z I N E
over the years, as every individual is different,
so too is every brain injury. Some of the issues
are endemic, such as poor motivation, inability
to initiate and make decisions, and difficulty
orientating to unfamiliar surroundings. A poor
memory and difficulty concentrating are also
common.
However, it’s the more subtle and often
complicated traits that prove challenging, such
as the seeming inability to be empathic to
another person and their needs, associated with
self-absorption and an obsession with one’s own
issues. Disconnectedness is a word which often
comes to mind when describing my husband’s
relationship to the world and those in his life,
and he will agree with this.
He has difficulty expressing his emotions
and has a “blunted” affect; it’s easy to confuse
this as aloofness and apathy. It can be tough to
keep reminding myself not to take it personally.
Although these characteristics can occur in
“normal” people, with a brain injury it is often
difficult to pinpoint as it overlaps characteristics
which were always present, and can be even
more difficult to manage as a result.
Knowledge and information are crucial
Although when I met my husband he had
lived with his brain injury for six years, he had
very little, if any, insight into his condition and
the effects it had on himself and particularly
others in his life. I believe this was largely due
to the fact that many in his life had denied him
his autonomy. Even long after he had emerged
from the wheelchair, they feared him having an
accident or getting into a situation he would
struggle to deal with.
Over the years we have tried to educate
ourselves, and have found that knowledge
and information are critical. It is a confusing
and difficult condition to understand – being
informed is being armed, and wisdom is far
superior to ignorance. This can prove to be a
hindrance at times as well – I find that once
a trait or behaviour is recognised and named,
my husband adopts that as “his”, and the
accompanying “oh that’s just my brain injury”
comment can be frustrating and overwhelming!
Referring to the knowledge I’ve built up
eliminates any personal reactions this may
arouse, and helps me to see the bigger picture
and be realistic.
Outsiders cannot ‘see’ the brain injury
My husband is what you would call a “high
functioning” person with a brain injury.
This may sound positive, but it is even more
disruptive to life and the cause of much
isolation and confusion over the years. Why?
To outsiders, friends and even family members,
my husband seems “normal”. My concerns are
often disregarded or ignored, or worse still, I
am often told by family members that I “knew
what he was like” when I met him. As I remind
them, if they have difficulty seeing the aspects
of his brain injury, then the same stands for
me, and one would need to live with it and
him regularly to see them. I am acutely aware
of a brain injury being very much an invisible
disability.
The importance of support
I have found that what I have learned
about myself, my husband and brain injury
has been enormously educational, insightful
and beneficial. I have learned not to take
things for granted. I value the importance of
patience and understanding. I have learned
about impermanence, and how things are
constantly changing and evolving. I do not
become attached to one particular situation or
event as being forever.
I have learned about the importance of
support networks and not feeling as though
you are on your own. I am not afraid to ask
for help at times (though this is a particular
area which needs to be worked on for me!).
I have been influenced by my husband’s own
personal strength and resilience in dealing with
his various challenges. This has encouraged and
inspired me to keep going.
I would have preferred my husband to have
not been hit by a car in 2003, but I believe
everything happens for a reason – perhaps I
would not have met him had this not occurred.
Our destiny is already mapped out for us to
an extent, so rather than fight it I embrace the
journey and hold on tight for a bumpy, but
hopefully rewarding ride!
Your Brain Injury Association should be able to
provide counselling or direct you to other agencies
who run anger management courses.
Let go of bitterness
It is human nature to become angry when we feel
our “rights” are being violated. But hanging on
to bitterness can lead to lack of sleep, ill health,
depression and a negative outlook on life. A person
may survive a brain injury but may hamper their
recovery and happiness with bitterness toward
someone who caused the injury.
See conquering your anger as character-building.
You can’t choose what happens to you but you can
choose how you respond. Choose to control your
anger, instead of letting it control you. Remember
your anger will often hurt you more than the
person it is directed against.
Visit http://synapse.org.au to read these fact
sheets:
• Coping with Conflict
• Anger.
28 / B R I D G E M A G A Z I N E
– e.g. if the person is reading and a difficult
word is coming up, say something like, “I see
a tricky word in the next sentence so let me
know if you need help”
•Provide cues, such as an entire answer (e.g. “I
think the answer is 22, what do you think?”)
or a sentence completion cue (e.g. “The
president at the time was Abraham. . . that’s
right, Lincoln.”
•Ensure large amounts of successful repetitions
– this will reinforce the new knowledge and
help with retention.
Errorless learning can be a difficult
technique to use without training. If the person
with memory problems is working with a
neuropsychologist they will be able to advise as
they will be trained to use the method. There
is also an excellent tutorial and video on the
subject on the Brain Injury Association of New
York State’s LEARNet project website at www.
projectlearnet.org.
Making the
most of
memory
We can’t restore lost memory
capabilities after a brain disorder,
but sometimes we can make
memory more efficient
There are some techniques that can help
the following aspects of memory —
getting information into memory more
efficiently, storing information more efficiently,
and recalling information more efficiently.
Getting information into memory more
efficiently
In order to remember something we must
get the information into memory first before
it can be stored away. This can be very difficult
after a brain injury, especially for someone
who has difficulties with attention and
concentration. Some simple rules to follow
when giving information to someone with
memory impairment are:
•Concentrate on relevant material that the
person wants or needs to remember
•Simplify information and written instructions
•Reduce the amount of information that has
to be remembered and just concentrate on the
essentials
29 / B R I D G E M A G A Z I N E
•Divide the information into small chunks
•Give the chunks one at a time
•Encourage the person to take their time and
pay close attention
•
Ensure that the information has been
understood by having the person repeat it
back in his or her own words
•Encourage the person to make associations
by linking the new information to something
that is already familiar
•Use the little and often rule – it is better to
work for a few minutes several times a day
than for a longer period once a day
•
Encourage the person to organise the
information – for example, grouping items on
a shopping list into distinct categories
•Use two or three different methods to improve
learning of one piece of information – for
example, if you want to teach someone with
memory impairment the way to the local
shops, you could either draw a map; describe
Mnemonics
Mnemonics are verbal and visual aids to
learning, such as sayings, rhymes or drawings,
which help us to remember things more
easily. For example, the rhyme ‘Thirty days
in September. . .’ helps us to remember the
number of days in each month. Mnemonics
can help people with memory impairments
(e.g. one memory-impaired woman learned to
remember the name Stephanie as a picture of
a step and a knee). However, it is unrealistic
to expect them to devise and remember to use
them themselves. For this reason, the following
guidelines for relatives and carers might help:
•Devise the mnemonic yourself and then teach
it to the person with memory impairment
•Use mnemonics to teach a specific piece
of information, such as people’s names or
addresses
•Take account of individual preferences and
styles – not everybody likes the same strategy.
the way verbally, or accompany the person
along the route
•Choose a good time to practise – information
will be taken in more efficiently when the
person is fresh and alert.
There are three further main systems used
in order to get information into memory
efficiently. These are: errorless learning,
mnemonics and PQRST.
Errorless learning
While many people learn from their
mistakes, this is not the case with people with
memory impairment – they tend to repeat
the same mistakes as they cannot remember
making them. This can be very frustrating,
and a more efficient approach is to prevent
them from making mistakes when learning
new information. This approach is known as
‘errorless learning’.
One way to do this is to guide the person
with memory impairments through a task
several times, and then gradually decrease the
amount of help given. Alternatively, provide
written instructions to follow and then gradually
decrease the amount (e.g. by missing a word out
here and there). The following steps can be used
as part of an errorless learning program for use
with someone with memory impairments:
•Adjust your expectations – don’t ask for
responses until you are at least 90% sure the
person will give a correct response
•Make sure the person is completely clear what
is expected of them – if they don’t understand
what they have to do in the first place then
mistakes are inevitable
•Complete the task together – saying “let’s do
this together” is a better way of starting an
activity than “let’s see if you can do this”
•Make the task do-able – this can be done by
breaking the task down into smaller parts and
teaching the parts separately
•Anticipate problems and correct in advance
PQRST
This is a way of helping yourself to remember
something you are reading, such as a newspaper
article. This can be very useful for anyone to
try as well as people with brain injury. PQRST
stands for:
•Preview – scan the information to get a
general idea of the content
•Question – identify some questions you want
to be able to answer after you’ve read it and
write them down
•Read – read the material closely
•State – repeat the main points to yourself by
stating them in summary form
•Test – test your knowledge by seeing if you
can answer the questions you wrote down
earlier.
New information is most likely to be
forgotten within a relatively short time after
it is learned. The rate of forgetting slows down
after this initial period.
Once information has been taken into
memory, it helps to practise or rehearse it
every so often. This is best done by testing
immediately after learning, then testing again
after a slight delay, then again after a slightly
longer delay and so on. This process is known
as ‘expanding rehearsal’.
For people with memory impairments,
the intervals used should be very short, as
immediate memory is usually relatively
undamaged so needs to be taken advantage of.
You could start by asking the person to repeat
the information immediately, then after two
seconds, four seconds, eight seconds, etc.
Retrieving information more efficiently
Often information is stored in memory
but retrieving it can be difficult. We have all
experienced this as the ‘tip-of-the-tongue’ effect.
Retrieving information can be particularly
difficult for people with memory impairment
after brain injury. However, the following
techniques can help:
•Provide a cue or prompt, for example, the first
letter of a name.
•It is much easier to remember something if
recalling it in the same location, situation or
mood as when the information was learned.
In order to avoid the limitations this can
place on memory, it is a good idea to learn
new information in a variety of situations and
settings whenever possible.
Conclusion
Following the strategies and techniques
described should help most people to compensate
for memory problems, at least to some degree.
However, it must be recognised that they do
not offer a cure. In order to help someone
with memory impairment, these approaches
should be adopted for specific purposes and in
a gradual, step-by-step sequence.
It is important to try different things to see
what the individual finds most suitable. The
ideas should be used according to individual
preference, and can be adapted in any way that
people find suits them. Ideally, they should
be enjoyable and can be a shared activity with
family and friends.
This article is an excerpt from a fact sheet, reproduced from
www.headway.org.uk with the permission of Headway
- the brain injury association. You can send an email to
helpline@headway.org.uk to discuss any issues raised. Visit
the website for great resources available for free download.
FURTHER READING
Visit http://synapse.org.au to read our “Memory Problems”
fact sheet.
30 / B R I D G E M A G A Z I N E