009 - Bridge Magazine - Understanding Behaviour (2012)

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In this issue:

UNDERSTANDING BEHAVIOUR • Me, me, me – egocentricity • Impaired self-awareness • Relationship problems

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Behaviour intervention techniques

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Dealing with challenging behaviours

BRIDGE VOLUME 9 - December 2012 ISSN 1448-9856 General Editor: Contributing editors:

Barry Morris Clare Humphries Lisa Cox Rick Bowie

Impaired self-awareness & behaviour

National Development Manager:

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

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Bridge is produced by Synapse (trading name for the Brain Injury Association of Queensland).

Published quarterly, it welcomes contributions and news items, especially from members.

Advertising rates are available on request.

Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding.

Understanding egocentricity

VISUAL DIFFICULTIES: Visit www.synapse.org.au and view the free online version which can be expanded on screen.

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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.

INDEX

Supported by financial assistance from

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03 05 06 07 09 11 12 13 14 15 17 19 20 21 23 25 27 29 30

Complex & challenging behaviours The message behind a behaviour To change or not to change The behaviour cycle Behaviour intervention techniques Positive behaviour support A three-step approach to behaviour Disinhibited & inappropriate behaviour Impaired self-awareness & behaviour A burlesque approach to brain injury Emotional lability Me, me, me! - understanding egocentricity Responding to a crisis Examining my behaviour Impulsive behaviour Changed behaviours & dementia Relationship problems Lack of self-awareness Dung beetles & compost heaps

Self-centred behaviour after a brain injury

Definitions and causes Looking for the real reasons Behaviours can be hard on families Get to know the stages involved Handy strategies for behaviours A better alternative to punishment An easily remembered key Responding to these tricky issues Practical strategies from ABIOS Creative ways to raise awareness When impulses & emotions run riot Self-centred behaviour Handling highly charged incidents Personal story on one man’s behaviour Doing and saying things without thinking Understanding in order to respond better Partners can be the unseen victims A personal story Adopting the positive view on brain injury

bridging THE GAP

Jennifer Cullen, CEO of Synapse

Challenging & complex behaviours Challenging behaviours are common after a brain injury, especially when there is damage to parts of the brain that control our impulses and regulate our emotions (such as the frontal lobe).

For those with complex and challenging behaviour, our hospitals are prisons, and our prisons are treated as disability accommodation.

Frequent challenging behaviour can lead to social exclusion, restriction of access to community services, family breakdown, homelessness and imprisonment. In fact ongoing research indicates that the majority of inmates in prisons around the world have acquired at least one brain injury in the past.

What is acceptable and unacceptable behaviour is often socially determined. We tend to judge each other through our behaviour, and

Synapse is funded by Home and Community Care, a joint Commonwealth and State/Territory program providing funding and assistance for Australians in need.

Synapse is funded by Home and Community Care, a joint Commonwealth and State/Territory program providing funding and assistance for Australians in need.

anyone acting outside the accepted boundaries is in danger of being excluded. There are literally thousands of ‘rules’ that people may break unknowingly after acquiring a brain injury. So a challenging behaviour is one that we find hard to accept; it literally challenges our ability to understand why it is happening.

A complex behaviour is one which makes it difficult to initially see the reasons for the behaviour.

The social and economic costs of these behavioural issues impact on all Australian communities, and affect not only the disability sector, but also health care, housing, and criminal justice. However, there is still little funding or recognition of the need for positive behaviour support.

Synapse’s model of support has been

developed with a focus on positive behaviour support, client-centred planning, and strength based approach.

We have evidence that through comprehensive behaviour support plans, based on the needs and communications style of an individual, the cost of care can be reduced significantly. Initial data can be found in our 2012 Annual Report, available at our web site - http://synapse.org.au.

We look forward to joining with other sectors, and working collaboratively with other Organisations, to reduce the cost and impact of complex and challenging behaviours on the community.

Jennifer Cullen CEO, Synapse

AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS

QLD Synapse Inc. T: 07 3137 7400 E: info@synapse.org.au www.synapse.org.au QLD ABIOS (Acquired Brain Injury Outreach Service) T: 07 3406 2311 E: abios@health.qld.gov.au ww.health.qld.gov.au/abios QLD Headway Gold Coast T: 07 5574 4311 E: admin@headwaygoldcoast.org www.headwaygoldcoast.org AUS Brain Injury Australia T: 1 800 BRAIN1

E: admin@braininjuryaustralia.org.au www.braininjuryaustralia.org.au AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS NSW Brain Injury Association of NSW T: 02 9868 5261 E: mail@biansw.org.au www.biansw.org.au QLD Brain Injury Association of Qld Tel: 07 3367 1049 Email: biaq@braininjury.org.au Web: www.braininjury.org.au VIC BrainLink Services T: 03 9845 2950 E: admin@brainlink.org.au www.brainlink.org.au AUS TASBrain Brain InjuryInjury Australia Tel: 02 9591 1094 Web: www.braininjuryaustralia.org.au Association of Tasmania T: 03 6278Email: 7299 admin@braininjuryaustralia.org.au

E: enquiries@biat.org.au www.biat.org.au NSW WABrain Headwest Injury Association of NSW Tel: 02 9868 5261 9330Email: Web: www.biansw.org.au T: 08 6370 mail@biansw.org.au

E: admin@headwest.asn.au www.headwest.asn.au BrainServices Injury Network of South Australia Tel: 03 9845 2950 T: 08 7600 admin@brainlink.org.au

E: info@binsa.org www.binsa.org VIC SABrainLink 8217Email: Web: www.brainlink.org.au Community Services T: 08 4100 enquiries@biat.org.au

E: scs@somerville.org.au www.somerville.org.au TAS NTBrain Somerville Injury Association of Tasmania Tel: 03 6278 7299 8920Email: Web: www.biat.org.au SA

Brain Injury Network of South Australia

Tel: 08 8217 7600

Email: info@binsa.org

Web: www.binsa.org

NT

Somerville Community Services

Tel: 08 8920 4100

Email: scs@somerville.org.au

Web: www.somerville.org.au

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What are complex & challenging behaviours?

One of the major reasons our brains are so big is that it takes a lot of computing power to learn how to live with other humans. So it’s no wonder this ability to get along with each other often suffers when our brains get injured.

We humans tend to judge each other through our behaviour, and anyone acting outside the accepted boundaries can be in danger of being excluded. There are literally thousands of ‘rules’ that people may break unknowingly after

acquiring a brain injury. This can include: • how close to stand to other people • when it is appropriate to interrupt another person who is speaking • when and how to show emotions • how to interpret and respond to nonverbal communication • what parts of a person’s body may be seen naked or touched, and under what circumstances • when to speak, and how to get a point across.

isn’t ‘challenging behaviour’ just bad behaviour?

So what’s with this challenging behaviour and complex behaviour stuff? Why not just call a spade a spade and say it’s bad behaviour, throwing a tantrum, or being downright difficult?

The problem is that when we use negative and judgmental words our actions tend to follow suit, and the behaviour will only deteriorate in response. But if we use objective terms like challenging behaviour then we are more likely to be objective in our thoughts and actions.

Is a behaviour really ‘bad’? Consider the driver who is doing the speed limit but everyone else is speeding about 15 km/h over the limit. Despite obeying the law, this driver will probably get the horn, some tailgating, the finger and other inducements to speed up. We humans believe that normal behaviour is simply what most of us do; if someone starts behaving outside the ordinary then it doesn’t take long for that behaviour to challenge our understanding. So if an elderly lady wants to join a rock band after having a stroke, think twice before assuming this is behaviour that needs to be managed!

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A working definition In a nutshell, problems occur when behaviours could result in harm for the person with a brain injury or others, or could restrict the individual’s access to the community.

Eric Emerson, a behavioural specialist, describes this as “culturally abnormal behaviour of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy [and] ... behaviour which is likely to seriously limit or deny access to the use of ordinary community facilities.” (Emerson 1995).

A challenging behaviour is one that we find hard to accept; it literally challenges our ability to understand why it is happening. A complex behaviour is one which makes it difficult to initially see the reasons for the behaviour.

We will use these terms as interchangeable in this issue of Bridge as they are usually strongly linked together in the context of a brain injury.

Examples Examples of challenging and complex behaviours are: • Physical or verbal aggression • Self-injury

• Property destruction • Disinhibition and hypersexuality • Impulsivity and emotional lability • Inflexibility and concrete thinking.

It is very tempting to see challenging behaviours as deliberate actions resulting in grief for everyone. But understanding the causes of a particular behaviour allows us to respond appropriately, instead of with an instinctive reaction which may only exacerbate the situation. three main causes This example highlights the complex nature of trying to work out why particular behaviours are occurring, but also how the solutions can be FRONTAL LOBE The frontal lobe is responsible for planning, organisation, initiation of behaviour, ability to inhibit behaviour, self-awareness, self-monitoring, flexibility in thinking and behaviour, reasoning and decisionmaking. So injury to the front lobe can lead to many possible changes in behaviour, including: • Decreased ability to organise information • Difficulty sequencing activities and behaviour • Unpredictable behaviour due to poor planning • May not complete activity or follow through • Frustration when things don’t go to plan

quite easy once the problems are understood.

The causes of any behaviour can be categorised into three categories; psychological, social and biological factors.

Psychological factors Emotional problems with depression, grief and loss, anxiety, stress and frustration are very common after a brain injury. Alcohol or other drugs are often used as a coping mechanism, but this usually only exacerbates behavioural issues.

Social factors These include general health, psychiatric disorders, medical conditions, medications (side-effects), use of alcohol or other drugs,

• Confusion about what to do and when to do things • Clutter and lost items • Low motivation, apathy and lack of interest • Easily bored and frustrated • Inappropriate social and sexual behaviour • Verbal and physical aggression or anger • Impulsive behaviour • Repetitive and perseverative behaviours • Impaired self-awareness and judgement • Reduced motivation to change behaviour • Unaware of behaviour’s impact on others

stress and communication deficits.

Biological factors The frontal and temporal lobes of the brain are very important for controlling our behaviour and emotions. Damage to the temporal lobes can result in problems with memory and language, both of which play major roles in managing our behaviour. An understanding of just how much these factors can influence behaviour can make it much easier for family members to understand and respond appropriately to specific behaviours.

The diagram below maps out many common challenging behaviours and which parts of an injured brain may cause them.

• Poor awareness of own or other people’s emotions • Inability to self-manage emotions • Concrete inflexible thinking • Difficulty thinking of alternative ideas or behaviour • Argumentativeness • Irritability with others • Misunderstanding of what others do or say • Difficulty with problem-solving and logic • May take longer to make decisions.

parietal lobe The parietal lobe is responsible for spatial awareness, perception of self, objects and people in space, and perceptual processing of information. Potential problems here include: • Confusion or uncertainty • Lack of trust or confidence in self, others and environment • Effort needed for activities leads to fatigue and irritability • Misperception of sensory information can lead to paranoia.

LIMBIC SYSTEM The limbic system is located above the brain stem, and is responsible for regulation of emotional state and perception of emotions in self and others. Potential issues here include: • Rapid mood changes • Lack of empathy or responsiveness to others • Egocentricity or self-focussed • Impatience and low tolerance of others • May want needs met immediately and difficulty waiting • Irritability and anger • Anxiety and depression.

Temporal lobe The temporal lobe is responsible for communication, memory, new learning and remembering tasks, instructions, events and one’s own behaviour. Problems include: • Misunderstanding or misinterpreting communication • Difficulty expressing ideas, feelings and preferences • Difficulty regulating voice, tone, volume and rate of speech • Forgetting conversations, instructions and decisions made • Confusion and memory loss may lead to paranoia • Frustration with effort, difficulty or failure.

brain stem & cerebellum The cerebellum and brain stem are responsible for regulation of arousal and alertness, sleep, physical functions and mobility.

Problems here include: • Sleep disorders • Fatigue • Sensitivity to noise, light, temperature and fatigue • Lack of interest in previously enjoyed activities.

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What’s the message behind a behaviour?

All behaviour serves a purpose, and therefore communicates a message. This simple statement can work wonders in situations that may otherwise leave you feeling powerless, frustrated and angry.

Instead of seeing a particular behaviour as an annoyance, looking for the underlying message is the first step to resolving the causes. A complex or challenging behaviour communicates three things: • an unmet need, such as social, attention, emotional discomfort or physical discomfort • expression of mood, such as sadness, anger or frustration • response to stimulation, either lack of stimulation (e.g. boredom) or too much stimulation (e.g. a noisy crowd).

An example of finding the message Helen often screams loudly when her family members are talking with her. This was seen as bad moods or attention-seeking behaviour by her family until they looked closer for the purpose of her behaviour and realised she usually screamed when someone completes sentences for her.

Expression of mood: Screaming is Helen’s way of expressing her frustration at being interrupted.

Unmet need: Helen wants to be able to express herself and resents having control of her own communication taken away.

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the message behind a certain behaviour. Helen needs time to gather her thoughts and express them because of her brain injury, but family members thought they were helping Helen by finishing sentences because it took her so long to do it herself.

I’m bored!

Behaviour specialists working in the Acquired Brain Injury area report that the most common message behind challenging behaviours is “I’m bored”. A brain injury can potentially leave one without work, with the loss of old friendships, and difficulty establishing new friendships.

Some behaviours may simply be a way of breaking the boredom of another day in front of the television set, based on the principle of “any attention is better than no attention”.

This does pose problems for family members, as often the caring role is already so demanding that little time and energy may be left for finding recreational activities for their loved one. The Brain Injury Association in your State may have a list of community activities available in your area.

Other common messages • There are too many demands being put on me at once!

• This is an unfamiliar environment/activity and it’s freaking me out.

• I’ve got sensory overload from too much noise/light/overcrowding.

• I’m tired.

• I haven’t got the social skills to cope with this situation.

a real life example Sue is facing increasing difficulties with Rob in the shopping centre. He looks forward to these outings since his brain injury, but quickly gets into a bad mood and appears to be deliberately picking a fight with Sue. Rob won’t say what is bothering him, and Sue finally loses her temper. Last time, Rob started screaming at her, a security guard intervened, and it spiralled out of control!

So what happened? Rob has a frontal lobe injury and he finds it very hard to cope with all the sensory stimulation of a shopping centre. He also finds it difficult to understand his reaction to this and explain it to Sue. Rob has a very low tolerance for stress, frustration and anxiety which makes it even more difficult to try to understand or react appropriately. To make matters worse, Rob has been discouraged by feeling he is not making much progress after six months of solid rehabilitation work, and is also very tired from a sleeping disorder caused by the brain injury.

Sue and Rob discuss the situation with the rehabilitation team. They look at the possible triggers for Rob’s behaviour, ways to resolve the contributing issues like fatigue, and strategies for both Sue and Rob to use in future situations.

To change, or not to change?

Changed behaviour can be tough for friends & family Providing that laws aren’t broken, everyone is entitled to choose how they want to communicate and behave, even if others find it unpleasant. After a brain injury, some people want to accept their ‘new self ’, even if it does drive others away.

Why does it happen?

These issues often arise as neurological damage to the brain impacts on emotional control, selfawareness and social skills. Everyone is familiar with children crying or screaming easily and not being able to see others’ points of view. As our brain matures, we gradually learn the important and often difficult task of how to control our emotions or impulses, see the world through other people’s eyes, tolerate radically different views to our own, and how to avoid or deal appropriately with conflict.

By the time we are adults we usually take these skills for granted, however the frontal lobes of our brain take 25 years to mature enough to allow the brain to exercise these skills.

We must also learn from life experiences to develop these skills fully. We may take for granted the ability to live peacefully in a world full of people, ideas, religions, political parties, customs, rules and laws that we often dislike or may even hate. Our tolerance, understanding and ability to ignore or resolve conflict peacefully are highly developed cognitive abilities that are only reached (if ever!) in our adult years.

A brain injury often entails damage to the frontal lobes can result in many of these skills needing to be relearned. In some cases, the person’s self-awareness may be lost, in which case the person may never regain these hardwon abilities. Let’s look at a typical example

of how a brain injury can affect a relationship where self-awareness is also a problem.

Brian’s story: I find so many things annoy me. She says ignore them but I can’t, I have to speak out. People saying the dumbest things. Ridiculous laws or regulations.

Teenagers acting stupidly. My partner’s attitude to so much of life. When I tell people what I think they almost always react badly. All I’m doing is telling them the truth! But they get their backs up and ignore me, or we wind up yelling, or in public I end up being intimidated by police officers or security guards. People just can’t handle the truth and it really annoys me.

Jo’s story: He’s changed so much since the head injury. He used to be easy going and got along with everyone. Now he is very opinionated and obsessed with little issues. He lost all his friends and continually loses jobs due to arguments.

He complains of other people’s intolerance but it is his intolerance that gets him into arguments in the first place!

He expects me to support him when I don’t agree with him, then loses his temper when I gently try to show him the other person’s side of the story.

Compromise or be true to myself?

People with a mild brain injury often have retained their self-awareness. They know how they used to be before the accident and how they have changed.

Edith’s story: Since my brain tumour my husband has found me hard to handle. I speak my mind now and tell it like it is. I know I used to be able to ‘sugar coat’ things and sound polite but the new me sees all that as a waste of time. I’m not being true to myself when I try to say it nicely.

I’ve lost friends over this and things aren’t going well with my family. My husband says we may separate because he reckons I am too abrasive, critical and abrupt now. We get into arguments because I tell him he is being too sensitive.

This is a common issue for people who have had frontal lobe damage from their brain injury. They may come to terms with their new identity — they accept that they now speak

their minds readily and simply get frustrated with the complex rules of polite conversation.

The consequences may be lost friendships, alienating their families, and difficulty making new friends.

At some point a decision must be made. Be true to the new self? In which case they must accept the potential consequences of losing relationships possible in making new ones. Or choose the difficult path of relearning social skills, tolerance and accepting others’ views in order to retain their old friends, partners and family? This can be especially difficult when after a brain injury these abilities seem to appear useless or ridiculous.

The difficult path If a brain injury survivor chooses to relearn these skills, it is a challenging process, and the brain injury means they may never get fully back to where they used to be. The potential payoffs in terms of retaining the support and joy of friendships, relationships, family and even employment can be rewarding.

An understanding and objective partner and family can go a long way to helping as they realise it is the brain injury causing the problems and their loved one is not intentionally hurting them.

They can also assist with feedback. Accurate feedback is needed to know when behaviour or communication appears intolerant, obsessive, inflexible or unreasonable by everyday social standards.

The person will also need strategies for avoiding or dealing with stress, anger and depression. Finally, your local Brain Injury Association should be able to provide resources or therapists for support.

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The behaviour cycle It is stressful to deal with violence, screaming or self-injurious behaviour, especially in public. Understanding the behaviour cycle can help you stay calm and respond appropriately when it feels like a situation is out of control.

TRIGGER PHASE Learn to recognise the changes in demeanour that signal a trigger. This could be signs of anxiety, becoming withdrawn or fidgeting.

Use positive behaviour strategies if any have been agreed upon.

Remain calm and speak gently, reminding the person of any coping mechanisms that have been discussed and agreed on.

ESCALATION PHASE Stay calm and give any directions concisely; a brain injury plus turbulent emotions can make comprehending instructions difficult.

A crisis can usually still be avoided at this stage, so keep promoting coping mechanisms. Try asking “What would you like me to do?”

If it is possible, remove yourselves from the trigger (e.g. noisy environment).

Use redirection (“Why don’t we go for a walk if you are getting anxious about your meeting tomorrow?”).

BASELINE PHASE The dotted white line represents ‘baseline’ which is the typical emotional state when there are no triggers present to cause problems.

There are plenty of proactive things that can be done during these quiet times, such as: • Minimise the triggers of behaviour • Support the person in recognising these triggers, and explore ways to cope with them.

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ESCALATION

RECOVERY PHASE

CRISIS PHASE Stay calm (which can be tough at this point!).

Remember your duty of care is primarily to yourself, so get out of the situation if your safety is at risk. It’s important to know your limits, and recognise when it’s time to disengage.

RECOVERY

If you have removed yourself from the situation, make sure it is safe before returning.

Stay calm and look out for any signs that the situation could escalate again.

There is often a period of remorse and reflection at this point; but don’t review the incident, as there is the potential for it to escalate again.

Actively listen and provide empathy, but don’t make statements that may excuse or reinforce the behaviour (e.g. “Don’t worry about it, it doesn’t matter”).

Discuss the situation properly once emotions have returned to ‘baseline’.

BACK TO BASELINE This is the best time to review an incident, but be mindful of timing — too early and things may escalate again, or too late and the incident may already be forgotten.

Provide empathy and make non-judgmental statements as you review the incident as a learning opportunity. Discuss whether there would be different ways to handle similar situations in the future.

Identify coping mechanisms that were used, and recognise any positive steps that were made, no matter how small.

Remember to document the incident if you are keeping track of behaviours over time.

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It can be hard to find some sense of direction when you are confronted by challenging behaviours

Behaviour intervention techniques The Acquired Brain Injury Outreach Service (ABIOS) has compiled a list of the most common strategies that can be helpful.

There are several specific behavioural techniques or strategies that can be used in managing challenging behaviour after an Acquired Brain Injury. It is important to have a good understanding of the purpose of each technique, so they can be used effectively to assist with learning, changing and maintaining appropriate behaviour. Inappropriate use of behavioural techniques and strategies can worsen behavioural problems.

Prompts may help the person, particularly if he or she has difficulties with initiating activities or with memory. Prompts can be faded or decreased as the person learns the task more independently.

Cues and prompts Cues are an indication to the person that they need to do something or not do something.

Cues can help the person learn a task, skill or behaviour. Cues can be verbal, visual or gestural.

Cues must be clear and direct, and should be the same each time for each behaviour.

Prompts are similar to cues. They may tell the person when to start or stop doing a task or activity. Prompts can remind the person of the next step in a task or a sequence of steps.

Shaping This means attempting to shape an initial response or behaviour to be closer to the correct or desired behaviour. It begins with responses or behaviours that the person already can perform, and gradually increasing expectations over time.

Shaping aims to use very small steps towards a longer term outcome.

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Modelling the behaviour you want Modeling is demonstrating or showing the person an activity, task or behaviour so that he or she can observe and learn how it is done.

Modelling can be used at the beginning of learning a new task or behaviour or in a situation which is unfamiliar. Modelling should show the person what is expected of them in a situation or task.

Giving feedback Feedback is essential to promote learning new skills and behaviours. Feedback should

provide the person with information about how they are doing with a task or behaviour. This is especially important when a brain injury leads to a reduced ability to self-monitor and self-evaluate one’s performance and behaviour.

People with a brain injury may require feedback to let them know: • when they are behaving appropriately • when behaviour is not appropriate • what they might do differently.

Feedback should provide clear, unambiguous direction specific to each behaviour and situation. Feedback should be direct and immediate, and should describe the behaviour as clearly as possible.

Redirection Redirection is gradually changing behaviour by redirecting to a more suitable behaviour.

Redirection needs to occur each time the unwanted behaviour occurs, preferably at the start of the behaviour, and needs to be consistent.

Redirection is often used with someone who is perseverating or repeating a behaviour over and over. For example, a person may talk about a particular topic repetitively, so you may want

again if positive reinforcement, encouragement or rewards were received for that behaviour or activity.

Each person will find different things reinforcing for them. Some people respond best to verbal praise, being able to spend time with someone we like, or participating in an enjoyable activity.

Reinforcement of other behaviours This involves weakening or reducing the likelihood of an unwanted behaviour occurring by identifying and reinforcing a behaviour that is incompatible with it.

For example: • asking politely for an item is incompatible with swearing or yelling.

• relaxation and calm are incompatible with stress and tension.

Reinforcement should be positive (e.g. attention, praise, access to desired activities).

Ignoring/extinction Ignoring or extinction can be used to weaken or decrease an unwanted behaviour, by providing no reinforcement. Ignoring a behaviour, and providing reinforcement for appropriate behaviour are two interventions often used together to shape behavioural change.

Sometimes when you ignore a behaviour, it will get worse before it gets better. You need to persist and eventually the behaviour will decrease in frequency. It is important to keep records so that you can see whether behaviour is changing. to redirect to another topic or task. Redirection can be combined with reinforcement for the new behaviour to increase its success.

Repetition Repetition is necessary with all behaviour change, whether you want to increase or decrease the behaviour. Repetition is necessary when the person you are working with has impaired memory or difficulties learning and retaining new information or skills.

Reinforcement Reinforcement increases the possibility of a behaviour occurring again in the future.

It is important not to use reinforcement for behaviours that you want to decrease or are unwanted. Reinforcers are generally broken into five main categories: • tangible (food, money etc), • activity (movies, shopping, TV) • social (praise, attention, and spending time together) • intrinsic (part of the behaviour or task — natural reward e.g. I do the house cleaning, and the house is clean and tidy) • token (something that can be exchanged for something else e.g. an activity or something tangible).

It is more likely that a task will be done

Contracting Making a contract can be effectively used with individuals who have some awareness and insight regarding behaviour, and who are motivated to make improvements. Contracting is an important tool in collaboration and involvement of the person with brain injury.

Contracting is simply a process of negotiating with the person (and others) about a particular behaviour (ones you want to see less of, ones you want to see more of ), consequences and rewards. It should involve high levels of participation from all involved (the person, family, carers etc). Contracts generally should be in writing, and should clearly indicate the role and responsibility of each person, what is going to be done, when, and how.

Contracting must be a respectful process valuing the input of each person equally.

Wherever possible, some aspect of contracting should be integrated into every behaviour intervention plan because increased participation increases the likelihood of enduring and worthwhile behavioural change.

This article is reprinted with the permission of ABIOS. Visit www.health.qld.gov.au/abios/ for other fact sheets on behaviour and many other topics.

Alcohol, drugs & behaviour

Alcohol or other drugs can become an issue for someone after a brain injury. Any difficulty in thinking clearly and managing one’s emotions and behaviour can lead to dependence on drugs. In turn, drugs usually impair these abilities even more, so a vicious cycle can result. Someone who previously used alcohol or other drugs as a coping strategy will usually be far more likely to after a brain injury. Cognitive deficits are only worsened by drugs, and behavioural problems are likely as most drugs will increase impulsivity, risk taking, and difficulties in monitoring one’s emotions and behaviour.

It is best not to drink or use recreational drugs at all during the recovery phase, and to at least consider abstinence in the long term. Discuss with rehabilitation professionals and family members.

Be positive Positive behaviour support is about being positive (well, duh!). It’s important to acknowledge each time a desired behaviour occurs, instead of just responding to each inappropriate behaviour.

Would we prefer the remote father who blew a fuse each time we made a mistake as kids, or the dad who celebrated all our achievements?

Who would we work harder for: the boss who is always waiting for us to make a mistake, or the one who gives us that pat on the back for good work?

A brain injury is one of the most devastating life events possible. We’ve spoken to people with a brain injury who’ve said they try as hard as they can, yet feel criticised from every angle when they do or say the wrong thing. So remember the power of a kind word, and don’t let appropriate behaviour go unnoticed. Even when the present behaviour is challenging, you can remember and celebrate past success!

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Stress & routines

It is hard to comprehend the stress a family can face when dealing with challenging or complex behaviours.

Highly charged incidents can leave a family constantly stressed, leading to exhaustion, anxiety and even illness. Get in touch with your local Brain Injury Association and Carers Australia (www.carersaustralia. com.au) to make sure you are getting all the support that is available.

Make full use of respite care to get breaks from the home environment, and see if there is a carer’s group in your area. See if your local Brain Injury Association can put you in touch with behaviour specialists who are familiar with Acquired Brain Injury. Proactive strategies can reduce the frequency of challenging behaviours and your stress levels.

Use routines to lessen the burden of caring. An injured brain is usually less able to handle unpredictability, new situations and stress, so establishing routines can be a real lifeline. They provide structure, fight off boredom, reduce anxiety, and set goals to be achieved each week. Not surprisingly, routines can prevent many of the causes of challenging behaviour.

Work with your client or loved one to develop a weekly routine with achievable tasks, pleasant activities and other goals. Use memory prompts like a whiteboard, diary or alarm clock. A good routine will be: • easy to understand and follow • logically sequenced • based on the person wants, not just what is easy • developed together.

Act, not react!

It’s critical to understand how our reactions can influence a given behaviour — it’s always better to act than react! Yelling, insults or the silent treatment don’t encourage positive behaviour.

It’s very normal to experience anger, frustration, embarrassment or annoyance with certain challenging behaviours. But a useful quote from the Batman Begins movie is applicable: “it’s not what you are underneath: it’s what you do with it that defines you!”

In our extensive positive behaviour support work, there have been many cases where the issue was not so much with the person’s behaviour, but the family members themselves! This is not intended to criticise families who usually make incredible sacrifices to support a loved one; but the reality is that excessive control, critical statements, lack of patience and many other factors can create the breeding ground for behavioural issues.

A commitment to positive behaviour support means regularly asking yourself: “As a carer, what can I do differently today that will encourage positive behaviour?”

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Positive behaviour support Historical responses to challenging and complex behaviours have included burning at the stake, hangings, imprisonment, torture and banishment from the community. While we have come a long way in most respects, some of these responses are still being used against people with a brain injury.

If anyone’s behaviours challenge the understanding of the community too much, they can still end up being imprisoned or at least refused access to the local community.

Human history is littered with examples of punishment being used to control behaviour the community does not understand. It is still a common approach, whether with prisons on the societal level or the subtle ‘cold shoulder’ at a personal level.

Positive behaviour support is a new approach to challenging behaviours. It is transforming the way we respond to people with disabilities when their behaviour prevents them accessing the community, or is a danger to themselves or others. It is now an internationally accepted way to provide support instead of punishment, and has been adopted by Disability Services Queensland and many other organisations in the disability sector.

Principles of Positive Behaviour Support So what is it? Positive behaviour support is exactly what it sounds like — a supportive,

positive approach. Some key points of positive behaviour support include: • we shouldn’t try to control other people, but should support them in their own behaviour change process • there is a reason behind most behaviour that is labelled as challenging • everyone should be treated with compassion and respect regardless of their behaviour • everyone is entitled to quality of life and effective services after acquiring a brain injury • our growing knowledge about how to provide support for positive behaviour can make a big difference • positive responses will be more effective than coercion and punishment.

How it works So how would we approach a behavioural issue using this approach?

• Identify and understand the behaviour • Improve quality of life to reduce the incidence of challenging behaviour • Model and encourage positive behaviour • Develop positive intervention when challenging behaviours occur • Develop steps to manage crisis situations if needed • Keep evaluating the support strategies used • Support caregivers who are affected by challenging behaviours.

A three step approach to behaviour This simple yet effective approach is a key element of Positive Behaviour Support

TRIGGER

BEHAVIOUR

OUTCOME

what happens before the behaviour (and may have caused it)

what happens during the behaviour (what does it look like?)

what are the immediate and delayed reactions from everyone involved?

For years this has actually been known as the “ABC model” (trigger, behaviour and consequences) but there has been a move toward using trigger, behaviour and outcome for easier understanding.

So what are triggers? These are simply all the relevant things that happened before the behaviour occurred. They can also be seen as triggers for the behaviour, such as: • things that other people did or said • emotional state (e.g. depressed, tired) • the environment (e.g. hot, noisy, bright).

Manage these triggers to avoid behaviours with the following typical strategies: • Build and maintain good rapport • Avoid or minimise known triggers • Sometimes a distraction or redirection away from the trigger is all that’s needed • Involve the person in discussing triggers • Work together on possible coping strategies in dealing with triggers • Suggest and encourage these strategies when a trigger occurs.

Graduated exposure to the trigger This is useful when triggers can’t or shouldn’t be avoided. With time and patience, it can be a powerful technique. For example, Kirsten starts screaming in supermarkets due to sensory overstimulation. Her mother says they will just stand outside the supermarket for 30 seconds then go home. The next time, they go in for 30 seconds then go home. This is gradually lengthened until Kirsten has adapted to this difficult environment.

Preparing for the trigger An inability to cope with chaos, unpredictability and lack of routine is common

after a brain injury. For example, if Chris finds the activity and noise of a supermarket unpleasant, it can help to talk about expected reactions and ways to cope before the event.

Before you respond to an actual behaviour, the key is to understand the purpose of the behaviour and what it may be expressing about unmet needs. Although emotions can be running high, there are still strategies that can prove useful during the behaviour itself: • Stay calm and speak in an even tone • Give simple directions and prompts about coping mechanisms • Use non-threatening hand gestures • Ask how you can assist in this situation • Manage your personal safety and remember the strategies agreed on for dangerous incidents • Recognise when it’s time for disengagement/ exit strategies for crisis situations.

Ignoring the behaviour In some cases, behaviour occurs to get attention, so the best strategy may be to ignore it. As with many of these techniques, tactical ignoring is best linked with positive reinforcement. An example from parenting is when a child is ignored during a tantrum, but is rewarded with praise, a treat or favourite activity when preferred behaviour is occurring.

Timeout Timeout is removing the person from any positive stimulus. In brief, the idea is isolation for a limited period of time in order to calm down, learn coping skills and discourage inappropriate behaviour. It is also a time for carers or support workers to work through any frustration or anger, and ensure responses are

based on the positive behaviour support plan.

Consequences Consequences can be pleasant or unpleasant.

A pleasant consequence will reinforce the behaviour (e.g. “When I yell everyone gives me what I want”) while a negative consequence will discourage a behaviour (e.g. “When I yell everyone ignores me completely”).

A consistent response from everyone can have a very strong effect.

Positive reinforcement This is generally the most effective behavior management strategy. An incentive is given immediately when a desired behavior occurs.

For example, Glen usually becomes quiet when anxious then suddenly starts shouting at everyone. He is learning to tell family members when he is getting anxious and do his deep breathing exercises. His actions are praised every time he does this.

The difference between reinforcement and a bribe is that reinforcement comes after a task is completed, whereas a bribe is offered before.

When choosing reinforcers, remember that each individual will respond to different things.

Remember to: • look at what has provided motivation in the past • Ask about likes and dislikes • Look at the person’s deprivation state — what do they want, and cannot easily get?

• Try to make sure the reinforcer is practical and ethical (e.g. don’t use food treats for someone who has a weight problem) Timing is critical to the effectiveness of positive reinforcement, and that the person feels the goal is achievable.

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Disinhibited & inappropriate sexual behaviour Disinhibited or poorly controlled behaviour, particularly sexual behaviour, can be a distressing change after a brain injury. Disinhibited sexual behaviour can include: • Sexual conversation or content • Comments of a personal or sexual nature • Inappropriate touching or grabbing • Explicit sexual behaviour such as sexual propositions, exposure of genitals in public, masturbation in a public place or sexual assault.

Disinhibited sexual behaviour often occurs because the person doesn’t follow social rules about when and where to say / do something.

This means that sexual thoughts, impulses or needs are expressed in a direct or disinhibited way.

Why does it happen?

Most people with brain injury do not have increased sexual libido after an injury. In fact decreased sexual libido is more common.

Reasons for disinhibited sexual behaviour are often due to decreased awareness, impulsiveness, impaired communication skills, and inability to express sexual needs. All these points mean that relationships are very hard to form, even though they are still just as important to the persons’ identity and self-esteem after a brain injury.

Strategies to consider Talk about behaviour – talk to the person about their behaviour, what you expect, and let them know if behaviour is not appropriate. If they don’t know, they can’t change it.

Let them know how the behaviour makes you feel e.g. “I feel uncomfortable when…” Also let other people know what strategies to use.

Provide the person with frequent, direct and 13 / B R I D G E M A G A Z I N E

clear feedback. Feedback should: • be immediate, direct and early • be concrete and describe the behaviour • give direction and be consistent • not reinforce/encourage behaviour • help the person to learn • not be demeaning or humiliating • not involve imposing your own values.

Manage the environment Some individuals have limited insight and awareness about sexually disinhibited behaviour, or very limited capacity to change behaviour due to severe cognitive and behaviour impairments.

In this case you may need to find strategies to manage the environment. For example: • Try to predict when problems will occur • Work out strategies ahead of time • Restrict any opportunity to engage in inappropriate behaviour • Limit any “at risk” social activities such as crowded clubs,pubs and alcohol consumption • Provide cues on behaviour – what the person should/should not do – before, during, and after social activities • Provide alternative activities e.g. small groups verses large groups • Keep a comfortable distance so the person cannot touch, grab or get too close e.g. when providing personal care • Provide supervision and structure.

Addressing sexuality needs A person may need others to give them space and privacy to express their sexual needs e.g. privacy to masturbate, watch videos or to have a sexual relationship Provide one-to-one support and supervision in any “at risk” situations, and give cues and

prompts about appropriate or inappropriate behaviour.

Remember that sexuality is a normal part of life and just because the person has a disability because of their brain injury, does not mean they don’t have normal sexual needs Redirect, distract or divert the person e.g. more appropriate topics of conversation, or change the activity or task.

Plan ahead Encourage the person to access information and advice regarding sexual activity and choices (contraception, STD’s, safe sex practices).

If a person has a history of severe disinhibited sexual behaviour (exposure, masturbation in public, or sexual assault), it is essential that you plan ahead regarding personal safety.

Consider: • having two people provide care • Family Planning • limiting home visits • General Practitioner • supervising children • Rehabilitation services • limiting access • Have your car keys in your pocket.

• Get familiar with the home, so you know where the doors are located.

• Talk to a psychologist, psychiatrist, social worker, or other professional • Keep a comfortable distance e.g. sit across a table, or close to the door or exit.

This abridged article has been reproduced with permission from ABIOS (Acquired Brain Injury Outreach Service).Visit the ABIOS website at www.health.qld.gov.au/abios to read the full version of this article and others from their wide range of fact sheets.

Impaired self-awareness & behaviour Lack of insight or denial of difficulties or impairments can be a significant problem due to limited or no awareness about behavioural changes after a brain injury.

Family adjustment & understanding Family members, carers, and friends may also have difficulty understanding the nature and extent of changes in a family member. Lack of awareness may stem from optimism and hope that the person may make a full recovery.

The person with brain injury also may look and seem the ‘same’ as before and therefore it may be difficult to notice and understand changes as a result of the brain injury.

Ideas for managing lack of insight Try to identify the reason the person is having difficulty with lack of insight or selfawareness – this will determine how you intervene or approach the problem.

If the problem is self-monitoring, then strategies that raise awareness of performance may be helpful – videos, checklists, or giving feedback.

If the main issue is attention or memory, then cognitive and memory strategies may be more important.

If the problem is related to reasoning or insight, concrete goal-setting, planning, and help with decision-making may be the approach to take.

If the issue is emotional coping or acceptance of the disability, counselling and support may be helpful.

For some individuals with severe injuries, they may have problems at all of these levels, and more than one approach to improve awareness is required.

Provide feedback & information Provide frequent, non-critical feedback about behaviour. Feedback should be concrete (plain; able to be seen), with specific examples and information. For example, “Because your reaction times are very slow … this means you are not able to drive now”. Try not to dwell on the point if this is distressing for the person or it leads to irritability or anger.

Direct the person’s attention to specific areas or examples of difficulty, as well as areas of strengths, improvements, and changes. When providing feedback it is helpful to have specific examples. Provide opportunities for the person to get feedback from other people (family, peers, and friends) so they have more than one source of information.

Encourage the person to evaluate their own performance in different areas, particularly focussing on areas they would like to change.

Family members and friends also need information about the person and how the brain injury might affect their ability to live in the community, driving, returning to work or study, or making new friendships.

Risk prevention In some cases where legal issues or safety is involved, decision making may need to be made by others. This might include: • capacity for management of financial affairs or other for personal matters e.g. accommodation, health, services • return to driving • return to work • care of children is involved.

Link activities to the person’s goals Try to relate activities and tasks to the person’s

own personal goals and plans, to attempt to increase motivation and participation e.g. “We are working on these memory strategies so you are able to live on your own”. Help the person to set realistic goals and plans with activities.

Avoid arguments Try to avoid directly confronting or challenging the person’s ideas about their capacity – this can lead to conflict, disagreements and anger.

Give general information about brain injury and the kind of difficulties that can be experienced. This can shift the focus from a personal problem to something more general e.g. “People with an ABI sometimes have trouble with their anger or temper . . . do you think you might have any problems like that?”

Introduce new ideas or options gradually, and give the person time to think about them.

Counselling & self-awareness It is important that everyone involved is given enough time to understand and cope with significant changes in their lives.

Developing insight and self-awareness, and adjustment to changes as the result of a disability can take time – it is important not to rush the process.

Improvements in insight and awareness regarding deficits and impairments can lead to depression and adjustment difficulties, and a person may need individual support and counselling as insight improves.

This abridged article has been reproduced with permission from ABIOS (Acquired Brain Injury Outreach Service).Visit the ABIOS website at www.health.qld.gov.au/abios to read the full version of this article and others from their wide range of fact sheets.

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BANG

NCH! U A L 01 2

UR 2

RO ON FO

le

a litt , t n f fun! e r e ev ads o r r i s , lo It’ de bit ru

A burlesque approach to brain injury At first this may not appear to be a good fit for raising awareness about brain injury, but think about it for a minute...

Burlesque takes a very different view of life. It can be raucous, loud and very politically incorrect - a little like living with a brain injury at times. Sometimes we need to be awoken out of what we consider to be normal behaviour in order to understand others. This is one of those times, because brain injury affects 1.6 million Australians directly, and who knows how many indirectly.

It’s a big issue. So as part of its BANGONABEANIE campaign, Synapse recently held a BangOnABoa event. Prevention is the best cure, so the aim was to engage with those most at risk in the community in the most appealing and meaningful way possible – through music and performance.

15 / B R I D G E M A G A Z I N E

A brain injury & a dream Andrew Fox was born on the Gold Coast in 1982 however spent most of his formative years in Brisbane. Like many twenty something’s, he was fit and pursuing his career when in 2005 his life suddenly changed forever. Andrew was to take on a new life, after awaking from a five and a half week coma he was to find his body was in trauma. He was unable to swallow correctly and had an enormous battle ahead with hours of physio, speech and occupational therapy.

In his own words, Andrew’s vision from the moment he awoke from his coma has been to “bring an invisible disability into the public light”. He also wanted to support the

rehabilitation unit at the Princess Alexander Hospital that helped him to recover, and others who help brain injury patients to recover.

Andrew’s background is stage managing and theatre, so his vision was to create a fun, intriguing burlesque event, allowing benefactors to step outside their comfort zone, just as brain injury patients do every day.

A burlesque-themed charity night was a chance for guests to thrust themselves into a situation where life around them is extraordinary, something brain injury patients experience constantly – a tough yet rewarding challenge. BangOnABoa was a truly memorable night to kick off Brain Injury Awareness Week 2012.

So what happened?

As the Global Goddess reported on her blog after the event, it was an “evening of cabaret, champagne and canapés, necklaces, naughtiness and nipples”. She was impressed at the courage and determination of Synapse ambassadors at the event, all who have acquired a brain injury.

Julian was only 18 when he was run over by a taxi and spent 20 days in a coma. He spent months learning to walk and talk again. After moving to Australia he began translating brain injury resources into Spanish for Synapse, and is now studying French and Russian.

Donna Sanderson, 39, was a heroin user who “scored” one night but passed out after hitting her head on the bed. She fell into a coma when vomit blocked her airways. Donna is now in a wheelchair but lives independently.

Her message?: “Having an Acquired Brain Injury is not the end of the world.”

Lisa Cox, 32, was a healthy 24-year-old and former model when a brain haemorrhage and ongoing complications left her in a wheelchair, 25% blind, and she lost nine fingers and her right toes. She is a motivational speaker at schools and her message as an ambassador for Synapse is “Brain injury can happen to anyone at any time.”

Who are the targets?

Awareness of ABI needs to occur throughout society, but we particularly want to target the following at-risk groups: • Primary and high school-aged students • Generation Y (18 to 25 years, the “net” generation) • Generation X (25 to 45 years, mature internet users who embrace online shopping and surfing) • Baby boomers (46 to 64 years).

Specifically we will target schools, workplaces, libraries, politicians, organisations, individuals and the media.

thinking outside of the box for raising public awareness In a busy world clamouring for our attention, it is increasingly difficult to raise awareness of issues that really count, such as the impact of Acquired Brain Injury (ABI) on so many people in society.

A recent communications audit by Synapse showed that awareness of ABI is moderate within the health sector, but that community awareness is very poor, particularly for those most at risk. The actual incidence of ABI is also much higher than commonly reported, due to either lack of diagnosis or misdiagnosis. This means that social policy and the actual level of services provided fall way below what is actually needed.

Synapse is developing creative strategic ways to get the message out there, not only about the negative impacts on the lives of so many, but also a positive celebration of what can be done on the road to recovery. A strategic approach is needed to reach a wide variety of ages and social groups, will encourage partnerships with other organisations, and make use of extensive networks to spread the message widely. It also needs to be sustainable, and create excitement as an ongoing campaign every year.

The success of any campaign will not be measured by the dollars it raises, how many times it is mentioned in the media, or through the support of governments and businesses — even though these are desirable outcomes. The long-term success of raising awareness of ABI will be in outcomes such as: • A reduction in the incidence of ABI • Improved medical treatment, rehabilitation and support services • More support for family members and carers • Understanding in the community about challenging behaviours • Flexible work or study conditions for those who return to employment or education • Reduced rates of homelessness and imprisonment for people with ABI • Reduction in crime and substance abuse through early and appropriate support.

Boas, boas and more boas

The Eastside Belles

Award-winning awareness raising The success of any campaign is ultimately determined in how it improves the lives of anyone affected by ABI, but it is good to know that we appear to be on the right path. BANGONABEANIE has already picked up two awards, including a ‘Best in Class’ for the BANGONABEANIE website from the Interactive Media Awards (www. interactivemediaawards.com). It represents the very best in planning, execution and overall professionalism. In order to win this award level, the site had to successfully pass through the comprehensive judging process, achieving very high marks in each of our judging criteria – an achievement only a fraction of sites in the IMA competition earn each year.

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Emotional lability Acquired Brain Injury can change parts of the brain that regulate or control emotional behaviour and feelings Emotional lability refers to rapid, often exaggerated changes in mood, where strong emotions or feelings (uncontrollable laughing or crying, or heightened irritability or temper) occur. These very strong emotions are sometimes expressed in a way that is not related to the person’s emotional state.

What causes emotional lability?

Emotional lability occurs because of damage to parts of the brain that control: • awareness of emotions (ours and others) • ability to control how emotions are expressed – so ability to inhibit or stop emotions coming out.

When a person is emotionally labile emotions can be out of proportion to the situation or environment the person is in. For example, a person may cry, even when they are not unhappy – they may cry just in response to strong emotions or feelings, or it may happen “out of the blue” without warning.

A person may have little control over the expression of these strong emotions, and they may not be connected to any specific event or person.

Following a brain injury, an individual may also lose emotional awareness and sensitivity to their own and other’s emotions, and therefore their capacity to control their emotional

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behaviour may also be reduced. They may overreact to people or events around them – conversations about particular topics, sad or funny movies or stories. Weaker emotional control and lower frustration tolerance – particularly with fatigue and stress – can also result in more extreme changes in emotional responses.

The person may express their emotions in situations where previously they would have been restrained or in control (in quiet situations, in church, listening to a concert).

These behaviours can be confusing, embarrassing, and difficult to understand for the person with brain injury, and for others.

Emotional responses Emotional reactions may be appropriate in the situation, but the behaviour or expression may be stronger, louder or last longer than would be usual for that person. For example, a person may be genuinely happy, but once the laughter has started they may be unable to stop or regulate the behaviour, laughing too loud, too much, or for too long.

After brain injury an individual may also show extreme but genuine emotional responses, including sadness and grief, despair, frustration and irritability, anger, anxiety and depression, and even joy, happiness, and pleasure. These

may be appropriate and normal emotional responses.

Coping with emotional lability Become aware of triggers Be aware of triggers for emotional lability and try to avoid these when you can. Triggers can include: • excessive fatigue or tiredness • stress, worry or anxiety • high stimulation (too demanding, too noisy, too many people) – too much pressure • strong emotions or demands from others • very sad or funny situation (such as jokes, movies, certain stories or books) • discussing certain topics e.g. driving, loss of job, relationships, death of a family member • speaking on the telephone or in front of a group or where a person feels under pressure.

Have a break Have a short break away from the situation so the person can regain control of emotions, and to give the opportunity for emotions to settle.

Sometimes a break of a few minutes or a longer period is enough to regain control of emotions, or diversions such as taking a short walk, doing a different activity – all these may assist in dealing with strong emotions.

To punish or not to punish?

Whether it was whipping, the electric chair or getting the cane at school, punishment and coercion have been popular ways to try to deal with behaviour we don’t like. Why was (and often still is) it so popular?

Ignore the behaviour Try to ignore the emotional lability as much as is possible. Try to get others to ignore it too, and continue on with the conversation or task.

Focussing on the lability, or giving the person too much attention when it is happening, can reinforce and increase the problem. It is important that other people don’t laugh too, as this will also reinforce and increase the behaviour.

Change the topic or task Changing the topic or activity (redirection and distraction) can reduce stimulation or stress (particularly if the topic was a trigger).

Try to distract or divert the person’s attention by engaging them in a different activity or task.

Provide information and education Uncontrolled crying or laughing can be upsetting, frightening or confusing for other people if they don’t understand. Provide simple explanations or information to other people about the lability, for example, “I cry a lot since I had my stroke … don’t worry about it” or “Sometimes when I am nervous I get the giggles”. Tell people what they should do, for example “Just ignore me and it will stop”.

Plan ahead When there is severe emotional lability, oneto-one, brief and fun activities in a quiet environment will be better. Try to avoid putting the person in stressful situations or environments e.g. noisy, busy, high levels of activity or that are too demanding.

Plan activities that are within the person’s ability. Plan more demanding activities or appointments after rests, or when the person has the most energy.

Use cognitive techniques Some simple cognitive strategies can also assist in managing emotional lability: • Relaxation and breathing exercises to reduce tension and stress • Use distractions – think of something else, imagining a peaceful image, counting numbers • Doing an activity (e.g. go for a walk) • Cognitive and behavioural strategies such as thought-stopping could be discussed with a psychologist.

Counselling and support Sometimes a person has had many losses and changes to cope with after the brain injury – loss of work, ability to drive, independence, changes in relationships or finances, changes in the quality of their life. All these changes happen quite suddenly with little chance to prepare or get ready.

These feelings of sadness, grief, anger, frustration, disappointment, jealousy, or depression after an injury are common and may be very difficult to cope with.

If there are other emotional adjustment and coping issues, referral to a counsellor such as a Psychologist, Social Worker or Psychiatrist may be helpful. Families (parents, siblings, children), friends or carers may also benefit from support and care to help them understand and to cope with these changes.

This abridged article has been reproduced with permission from ABIOS (Acquired Brain Injury Outreach Service).Visit the ABIOS website at www.health.qld.gov.au/abios to read the full version of this article and others from their wide range of fact sheets.

It was approved of by the authorities, and usually no other alternatives were available anyway. Even parents today find old habits hard to change, when they find themselves instinctively using the same discipline styles their parents did. Perhaps the biggest reason of all it is instinctive to hurt those who upset us.

There are many reasons to avoid using punishment strategies today. The advance of human rights dictates a more supportive approach, and it is surprisingly easy to run foul of the legal system when trying to control the behaviour of a person with a disability. Above all, the clinical evidence shows that positive behaviour support is a much more effective strategy than punishment and coercion.

Look for triggers

We can’t stress this enough — identifying the triggers of a challenging behaviour is vital! It means you can actually head off problems before they occur, or provide coping strategies to cope with these triggers.

Some triggers are easy to find, such as bright lights, noisy environments, crowded rooms, extended conversations or attempting multiple tasks. However, it is important to get the big picture and think about things that occurred – sometimes days ago.

We tend to focus on the immediate, but fatigue is a common trigger for many behaviours, and it may be due to a poor night’s sleep, or having overloaded ourselves in the past day or two.

Stress is another subtle but common trigger. It can take very little to overload the brain after it’s injured, and the resulting anxiety is a fertile breeding ground for challenging behaviours.

Quality of life

It’s obvious with hindsight, but we usually forget about how a low quality of life can dramatically increase the rates of complex or challenging behaviours. Even without a brain injury, we’d probably find our own behaviour deteriorating if we lacked the essentials of a good life such as health, accommodation, financial stability, friends, goals to achieve, and a good balance between work and recreation.

Family members and carers can be proactive and minimise behavioural issues by working through the above essentials to see if quality of life can be improved.

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“Me, me, me” - understanding egocentricity Sometimes people can seem more self-centred after a brain injury They may not seem to notice or care about the feelings or needs of family or friends or support staff around them.

Egocentricity is a common change after a brain injury.

Why does it happen?

Egocentricity or self-centredness can result from changes in brain functioning, including: • Reduced awareness of the emotions and emotional responses and needs of others • Reduced ability to be keep track of social interactions and responses from others • Changes in communication skills (e.g. capacity to listen, ask questions) • Difficulty with attention, so may only focus on their own thoughts, feelings, needs • Changes in communication and social skills that mean their own needs are expressed in a more direct, demanding way • Impatience or inability to wait for needs to be met by other people around them • Impaired judgement and reasoning • Concrete or rigid thinking patterns • Memory and learning impairments.

Tips for living with egocentricity Identify the cause Try to work out the reason the person is having difficulty with egocentricity or seems self-centred so you know what you can (or can’t) do about it. Is it lack of awareness, empathy, communication skills, impatience, poor judgement or a memory issue?

Provide feedback and information Provide frequent, non-critical feedback about the needs, feelings of other people, such as family 19 / B R I D G E M A G A Z I N E

or friends. Set limits and give information when you do e.g. “I can’t go now because I have to do … first, you will have to wait”.

Ask the person questions to direct their attention to information e.g. “How do you think they would feel about …?” Do you think they are happy / upset / worried? What do you think their feelings and thoughts are about ….?”

Direct the person’s attention to specific areas or examples of where they showed good awareness, consideration or responded to the needs and feelings of other people.

Provide opportunities for the person to get feedback from other people (family, peers, and friends).

Praise, praise, praise – give the person lots of positive reinforcement and encouragement.

Reinforce waiting, turn-taking and social skills and efforts to modify behaviour.

Nurturing relationships and friendships Encourage the person to understand what they need to do and say to make and keep friendships and relationships – this may not be obvious to them. Encourage and prompt: • Making phone calls, writing letters or emails • Texting friends to keep in touch • Remembering birthdays and special occasions • Following up social events • Initiating contact and suggesting activities with friends/family • Saying please, thank you and taking turns, asking someone what they would like to do.

Developing of awareness Direct the person’s attention to the feelings, thoughts or needs of other people e.g. “I

noticed Sue was upset about …”

Make suggestions to prompt conversation, questioning, or listening skills e.g. “When you see John why don’t you ask him how his work is going”.

Model caring or considerate behaviour in front of the person, and then discuss it with them later, e.g. “Did you notice that I asked how she was feeling today and she said …?” or “Your Dad seemed a bit tired today, what do you think?”

Talk with the person on a regular basis and encourage them to focus on their communication and social interactions with other people: • What went well • How would they feel if …

• What would they do differently • What social or communication skills were being used.

Practice, practice, practice – social and communication skills are learned over time, and may need to be relearned and practiced. e.g. social groups, coffee shops, over meals, sporting activities.

Counselling and support It is important that the person with brain injury is supported to understand and cope with changes – they may not be aware of changes in their social or communication skills.

This abridged article has been reproduced with permission from ABIOS (Acquired Brain Injury Outreach Service).Visit the ABIOS website at www.health.qld.gov.au/abios to read the full version of this article and others from their wide range of fact sheets.

Responding to a crisis Despite the best positive behaviour support plans, there can be incidents that get out of hand and pose dangers.

As a behaviour starts to escalate, continue to work at understanding the triggers and purpose of behaviour. You may still be able to prevent a crisis with: • a calm even tone of voice and reassurance • active listening and expressing empathy • simple, clear directions of what is required.

Tone of voice is very important. Many of us will start to subconsciously speak in a higher pitch even if we are trying to defuse a situation.

Deliberately speaking quietly in a normal tone can make a big difference, despite all that adrenalin flooding our system!

Try to identify the message behind the behaviour too; you might be able to avert a crisis if you can find the trigger and deal with it directly.

A positive behaviour support plan should include how to respond to each possible crisis situation. Typical strategies during the escalation phase include: • Promoting coping skills • Breathing exercises • Redirection (distraction) • Stimulus change • ‘Help me’ requests • Introducing humour • Exiting the troubling environment.

When a crisis develops, your personal safety takes priority over everything else. You should have a crisis management plan which includes: • when to disengage from an escalating situation • making sure your exits are always unobstructed • prior removal of any items that could be used to cause injury • a list of back-ups and supports to contact.

Some other useful tips include:

• • • •

Don’t wear necklaces Wear comfortable shoes you can run in Use furniture as a barrier if required Have all necessary backup and support phone numbers on hand • If you have children, make sure they know the crisis plan too • Allow at least 10 to 15 minutes for a crisis to pass, but don’t review the situation with the person for at least several hours.

After everything has settled down, you may need to debrief. Talk the situation over with a family member, counsellor or your local Brain Injury Association. Carers can quickly burn out when they are unable to deal with the stress that slowly builds up after each crisis if they don’t have any support.

Where crises are a regular occurrence, it pays to get professional support. Contact your local Brain Injury Association for services in your State.

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Examining my behaviour

Trevor Short’s account of self-awareness & behaviour issues after a brain injury In the telling of this story I will try to give the view from both sides although I have been forced to agree with the experts when they state that some behaviour is inexplicable to the normal mind. People need to be aware that the unacceptable behaviour is even more inexplicable to the damaged mind when the person knows not to fly into instant rages but seems powerless to do anything about it.

Behaviours according to my wife My injury is now more than two years ago, and I’ve made a rapid recovery with the attendant overload and fatigue which posed the choice between steam ahead and accept the fatigue, or relax but prolong my recovery.

This is a very hard choice to make, especially when my wife says the brain injury as an excuse for unacceptable behaviour is past its use-by date. I asked her to tell me all the things I was doing which really annoyed her. She started carefully listing my behaviours, and not getting my usual angry response the floodgates burst and there was an outpouring of all my transgressions. These are some of the main issues that came up: • Taking any disagreement as a personal attack

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• Being defensive about any form of criticism • Refusal to take responsibility for my actions • I shift blame to others by quoting their behaviour at some time in the past (20 years ago is no problem) • I don’t realise my communication can be forceful, aggressive and nasty • Not answering simple questions.

These are apparently the defects which have been exhibited since my brain injury, and honesty and returning memory both force me to admit to being guilty of most to varying degrees.

It seems that being able to accept this without responding badly means that I have regained my ability to be objective, although I still feel the old emotions well up when thinking about these issues. But every day I am getting better, to the extent that I have difficulty believing how bad I was.

Why don’t you answer questions?

Here is an example of one problem, brought to my attention by my wife yelling angrily at me “Why don’t you answer me when I ask you a simple question? You just totally ignore me until you see fit to notice my existence.”

It must seem like that, but at times I can

still lapse back into problems I faced with posttraumatic amnesia after the accident; I could be conversing normally, then blink my eyes and suddenly I would start talking nonsense about a completely different topic. It happens less nowadays, but also my brain is still only capable of one thought at a time. Any thoughts occurring in my brain have to reach their natural conclusion before I have any hope of responding to questions, and this delay annoys my wife no end.

Personal space Try to imagine what it feels like to have the other person continually moving away from you while you are trying to establish what is apparently too close a contact with him or her.

This is apparently one of the inhibitions that one can lose, as I no longer feel uncomfortable when anyone gets too close to me. It’s not surprising as I no longer know how close is too close, either for myself or other people.

My wife reminds me not to ‘crowd’ people when we are in company. This really pisses me off, even though I know I need to be reminded as my short-term memory means I will constantly forget and stand too close to people again.

angry explosion once it has been triggered still seems impossible after a brain injury. The only solution at the moment is to avoid the triggers as much as possible.

A big problem is that is easier to manage my anger away from the house, as I’m constantly on guard. But when I’m at home I can finally relax, but unfortunately my wife will face angry outbursts at times. It’s a difficult issue, as being constantly ‘on guard’ would destroy the joyous spontaneity we experience in a close relationship.

Slowly I am learning to keep at least an arm’s length distance from people I talk to. But the moment I get excited I forget and close in on the person, who then starts to shuffle backwards continually as I keep closing in.

I try to learn coping strategies like this as I certainly do not want to be known as someone to avoid because he makes others uncomfortable. Becoming aware of these interpersonal shortcomings is making me become even more of a recluse than normal.

Impulsivity I made some stupid decisions before I regained some of my planning skills, a longterm finance arrangement for a little business that did not work out. The brain injury meant I acted on impulse and didn’t stop to think of the possible consequences of my actions.

Anger I’ve read all the available literature and concluded nobody seems to fully understand anger as an involuntary response to unknown stimuli after a brain injury. My wife calls it ‘zero to megawatt rage with no warning’ and my best explanation is that it’s like hitting a nerve already made raw by a mind which prefers worrying to action. Trying to actually stop the

Self-awareness Self-awareness has been the most difficult skill to even partially regain. This is very unfortunate, as it is essential before any of the plans, skills, coping and management methods used to deal with the effects of brain injury can start to work. The mind has to accept that there is in fact a problem before it can even entertain the concept that it needs fixing.

All the best theories in the world on how to fix it are totally pointless until the fact that the broken body part exists, is recognised.

This is the conundrum: How can awareness that one is lacking self-awareness be planted in a mind which is totally reactive? For example, the Stop - Think technique is a common strategy for managing anger. The basic idea is that you stop and think the moment you realise you could be getting angry.

Here’s the problem! After my brain injury, how can I stop something when I don’t know it’s going to happen, until after it has? How can I think about something before there is something to think about? You tell me how to know when it is going to happen, and I will try to stop it.

Where do I go from here?

The answer to that question is something to which I look forward with the greatest of interest. I would love to become a kind of interface between therapists, and their clients who have a brain injury, and help them both understand where the other is ‘coming from’.

I still have enough of the impairments lurking around every corner to understand the perspective of an injured mind.

I also believe that I have recovered enough of my former abilities to understand what the therapists are trying to achieve and could use my new found empathy to explain to the injured (in easily understood language) what is going on, and how to get the most out of it.

I am unbelievably lucky on several counts. I once had a high IQ, enough of which must have survived to allow me to deal with the reality of the situation, and try to identify the problems and learn to live with or reduce them. And my wife has more than supported me – she made it possible for me to look past the immediate downside and work towards a real future.

New Synapse website

http://synapse.org.au Synapse’s public website has recently been redeveloped from the ground up, providing a host of new features and accessibility options.

The new website is the first step towards national consistency for online services, content and publications relating to Acquired Brain Injury, Neurocognitive Disorders and behaviours that challenge our understanding.

This is the result of a 12 month project involving five different organisations and we would like to thank ZeroSeven (web developers), Sharing Minds (CRM and web store) and Carlosus (branding and marketing) for their exceptional work and commitment towards the project and our clients.

Some of the new and exciting features of the site include, but are not limited to: • Online and downloadable publications • Archives of all our Bridge magazines, posters, and other resources • Google translations across the entire site • Web store with an integrated payment gateway • Redeveloped fact sheets • Redeveloped eConnect newsletter • RSS feed and regularly updated news articles We hope you enjoy the site and encourage you to visit regularly and provide feedback or suggestions. Please let us know via info@synapse.org.au if you have any articles, news, research, or personal stories you would like to publish.

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Impulsive behaviour A brain injury can mean we do or say things without thinking in advance These changes are often due to injury to the brain, particularly to the frontal lobes.

Impulsiveness may show itself in difficulty controlling behaviour, and inability to inhibit impulses or resist urges.

Signs of Impulsivity • Difficulty waiting for activities or a turn in an activity or conversation • Acting on an impulse without taking time to think – doing first and thinking later.

• Seeming to “rush” into things without thinking and making mistakes • Saying things that seem rude or tactless • Doing something without thinking about the risks or the consequences • Doing the first thing that comes to mind, rather than thinking about all the options and choosing the best one • Interrupting other people with demands or requests or interrupting conversations

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• Spending all of your money rapidly, or buying items that are expensive or not essential • Signing a contract (e.g. mobile phone) you don’t really understand • Forgetting appointments and activities because you have gone off to do something else on the “spur of the moment” • Not checking traffic before crossing the road • Impulsive responses like aggression or anger • Getting into relationships quickly without knowing the person well, including sexual relationships • Thinking “I shouldn’t have done/said that” and having regrets about choices later.

COPING StrategieS Self-talk Self-talk is very important so that the person is encouraged to think about choices and options before rushing in. These are good questions to use:

• • • •

“Is this what you really want to do?”

“Are you ready to do this?’

“What do you need to get ready?”

“Have you thought about all the options and the consequences?” – write down a list of pro’s and con’s • “Do you need more information?”

• “If you do this, what will happen next?”

Social situations If the person is dominating the conversation or talking over other people you may need to let them know. Sometimes other people can give a sign or cue if the person is interrupting, talking too much, or not saying/doing the right thing.

Prepare in advance before going into a situation and talk about “What are you going to talk about?” and “How will you know if you are talking too much?”

Support from others to keep on track Ask the person what support they need

A mobile phone or other reminder system, may help the person to think about what they are doing, and to stop, think, decide and plan. Use other memory aids to help with remembering medication.

Get information in advance about really important topics (e.g. money, sexual health, medication, looking after small children) so the person can make good decisions and choices. Take the time to discuss options, including the pros and cons.

Rebooting after a brain injury

Mending bridges If the person has been impulsive and made some choices that they regret, it is important use this as an opportunity to learn from the experience and to think about what they, or others, could do differently next time.

Try not to “rub it in” if there have been mistakes – just move on to what needs to happen next – help with problem-solving.

If they have offended someone or let them down in some way, a sincere apology will mend some bridges and make relationships stronger. Encourage and remind the person to do this.

As soon as the person realises they have been impulsive, try to get back on track with their goals and priorities.

and want from you or others. You can help by taking the time to talk about goals, and to encourage the person to choose the best options.

Let them know if they seem to be “rushing in”, and give feedback if you think they are being “rude” or “tactless” or are interrupting others in conversations.

Positive feedback is also really important, so notice and give feedback when the person is trying not to be impulsive or doing well with planning and setting goals.

Setting goals and making plans Encourage the person to think about their goals and priorities. It is easier to keep on track and to a plan if they have one already. Write down a plan, and keep it where it can be seen.

Using checklists and reminders will help to keep sight of priorities and provide motivation to stick to them. Encourage and remind the person to keep a diary and calendar to remind them of appointments, and to help keep track of goals or commitments.

Organising money & finances If the person tends to be impulsive with spending, help by developing a realistic budget. Organising for regular bills such as rent, electricity and telephone to be paid automatically will keep finances on track.

Centrepay through Centrelink can be a good option.

Remove or limit the temptations of a credit card or debt arrangement. Try to get rid of credit cards, or a least have a low credit limit.

Encourage or suggest the person does not keep large sums of money in their wallet/purse when going out.

Discuss any contracts so that they understand their commitments. Suggest that for social activities or special occasions (Christmas, birthdays) they have a budget and stick to it. Some people will need independent administrators or assistance from family/carers to help them manage their money Spontaneity Even if the person is trying to be less impulsive, it doesn’t mean they have to give up having some fun, or doing things on the spur of the moment. Being spontaneous can make life interesting.

This abridged article has been reproduced with permission from ABIOS (Acquired Brain Injury Outreach Service).Visit the ABIOS website at www.health.qld.gov.au/abios to read the full version of this article and others from their wide range of fact sheets.

If some functions of the brain can be likened to a computer, then a brain injury is the equivalent of not only losing a lot of your software, but having much of your hardware permanently lost or damaged.

There is no easy rebooting either. A brain injury can have a devastating impact on memory, motivation, personality, mood, senses, self-awareness and behaviour. If a survivor is able to learn strategies to cope with these many problems, it is usually a lifelong process of learning to compensate for abilities that have been lost, sometimes forever.

Often the person will appear unchanged physically — as a consequence, the difficulties faced by people with brain injuries are easily ignored or misunderstood.

Even family members and friends may regard a person with a brain injury who exhibits cognitive problems or changed behaviour, as lazy or hard to get along with.

There is very little understanding or knowledge in the community about brain injury and the impact it has on individuals and families. Long-term effects are difficult to predict, and will be different for each person.

Support for both the injured person and their family is crucial to reduce the impact of these long term effects.

Synapse is dedicated to improving the quality of life of people living with a brain injury, and produces Bridge to provide people with a brain injury, family members and professionals with information and strategies that will improve quality of life in the wake of a brain injury.

Visit our website at www.synapse.org.au for more information.

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Changed behaviours & dementia

Dementia affects people in different ways. Understanding why someone is behaving in a particular way may help you with some ideas about how to cope.

Changes in the behaviour of a person with dementia are very common. This may place enormous stress on families and carers. It can be particularly upsetting when someone previously gentle and loving behaves in a strange or aggressive way.

Why does behaviour change?

There are many reasons why a person’s behaviour may be changing. Dementia is a result of changes that take place in the brain and affects the person’s memory, mood and behaviour. Sometimes the behaviour may be related to these changes taking place in the brain. In other instances, there may be changes occurring in the person’s environment, their health or medication that trigger the behaviour.

Perhaps an activity, such as taking a bath, is too difficult. Or the person may not be feeling physically well. Dementia affects people in different ways. Understanding why someone is behaving in a particular way may help you to develop some ideas about how to cope.

Where to begin Always discuss concerns about behaviour changes with the doctor, who will be able to check whether there is a physical illness or discomfort present and provide some advice.

The doctor will also be able to advise if there is an underlying psychiatric illness.

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Coping Coping with changed behaviours can be very difficult, and is often a matter of trial and error. Always remember that the behaviour is not deliberate. Anger and aggression are often directed against family members and carers because they are closest. The behaviour is out of the person’s control and they may be quite frightened by it. They need reassurance, even though it may not appear that way.

What to try • A calm, unstressed environment in which the person with dementia follows a familiar routine can help to avoid some difficult behaviours.

• Try to keep the environment familiar. People with dementia can become upset if they find themselves in a strange situation or among a group of unfamiliar people where they feel confused and unable to cope. The frustration caused by being unable to meet other people’s expectations may be enough to trigger a change in behaviour.

• If a behaviour becomes difficult, it is best not to attempt any form of physical contact such as restraining, leading them away or approaching from behind. It may be better to leave them alone until they have recovered, or call a friend or neighbour for support.

• Try not to take it personally.

• Try not to use a raised voice.

• Avoid punishment. The person may not remember the event and is therefore not able to learn from it.

• Speak slowly, in a calm and reassuring voice.

• Try not to become provoked or drawn into an argument.

Aggression This can be physical, such as hitting out, or verbal such as using abusive language.

Aggressive behaviour is usually an expression of anger, fear or frustration.

What to try • The aggression may be due to frustration.

Locking the door may prevent wandering, but may result in increased frustration.

• Activity and exercise may help prevent some outbursts.

• Approaching the person slowly and in full view may help. Explain what is going to happen in short, clear statements such as “I’m going to help you take your coat off ”.

This may avoid the feeling of being attacked and becoming aggressive as a self-defence response.

• Check whether the aggressive behaviour is about getting what the person wants. If so, trying to anticipate needs may help.

alzheimer’ s disease, neurocognitive disorders & the dsm The Diagnostic and Statistical Manual of Mental Disorders (DSM) has established the term “Neurocognitive Disorders” for a range of conditions including Acquired Brain Injury and Alzheimer’s disease. Old terms such as ‘Dementia’ and ‘Amnestic’ suggest they can only be experienced by the ageing population. Although ‘Dementia Following Head Injury’ was a term used in the DSM IV-TR (another way of saying ABI), this wasn’t often accepted as a form of dementia.

“Neurocognitive Disorders” aims to focus on decline rather than deficit showing clearly what difficulties people are experiencing.

Catastrophic reactions Some people with dementia over-react to a trivial setback or a minor criticism. This might involve them screaming, shouting, making unreasonable accusations, becoming very agitated or stubborn, or crying or laughing uncontrollably and inappropriately. This tendency is to over-react is part of dementia and is called a catastrophic reaction.

Sometimes a catastrophic reaction is the first indication of the dementia. It may be a passing phase, disappearing as the condition progresses, or it may go on for some time. Catastrophic behaviour may be a result of: • Stress caused by excessive demands of a situation.

• Frustration caused by misinterpreted messages.

• Another underlying illness.

This behaviour can appear very quickly and can make family and carers feel frightened.

However, trying to figure out what triggers catastrophic behaviour can sometimes mean that it can be avoided. Keeping a diary may help to identify the circumstances under which they occur. If this isn’t possible, you can find ways of dealing with the behaviour quickly and effectively using some of the guidelines listed earlier.

Hoarding People with dementia may often appear driven to search for something that they believe is missing, and to hoard things for safekeeping.

Hoarding behaviours may be caused by: • Isolation – when a person with dementia is left alone or feels neglected, they may focus completely on themselves. The need to hoard is a common response.

• Memories of the past – events in the present can trigger memories of the past, such as living with brothers and sisters who took their things, or living through the depression or a war with a young family to feed.

• Loss – people with dementia continually lose parts of their lives. Losing friends, family, a meaningful role in life, an income, and a reliable memory can increase a person’s need to hoard.

• Fear – a fear of being robbed is another common experience. The person may hide something precious, forget where it was

hidden and then blame others for stealing it.

What to try • Learn the person’s usual hiding places and check there first for missing items.

• Provide a drawer full of odds and ends for the person to sort out as this can satisfy the need to be busy.

• Make sure the person can find their way about, as an inability to recognise the environment may be adding to the problem of hoarding.

Repetitive behaviour People with dementia may say or ask things over and over. They may also become very clinging and shadow you, even following you to the toilet. These behaviours can be very upsetting and irritating.

What to try • If an explanation doesn’t help, distraction sometimes works. A walk, food or favourite activity might help.

• It may help to acknowledge the feeling expressed. For example “What am I doing today?” may mean that the person is feeling lost and uncertain. A response to this feeling might help.

• Do not remind the person that they have already asked the question.

• Repetitive movements may be reduced by giving the person something else to do with their hands, such as a soft ball to squeeze or clothes to fold.

Who can help?

Discuss with the doctor your concerns about behaviour changes, and their impact on you.

The Dementia Behaviour Management Advisory Service (DBMAS) is a national telephone advisory service for families, carers and care workers who are concerned about the behaviours of people with dementia. The service provides confidential advice, assessment, intervention, education and specialised support 24 hours a day, 7 days a week and can be contacted on 1800 699 799. © Alzheimer’s Australia 2005. This publication provides a general summary only of the subject matter covered.

People should seek professional advice about their specific case. Alzheimer’s Australia is responsible for the content of this help sheet, and is not liable for any error or omission in this publication. For further information and to view other help sheets visit the website at www.alzheimers.org.au

Behaviours and dementia Dementia is not a normal part of ageing, although it is more common in older people and affects about one in four people over the age of 85.

Although it is commonly assumed that dementia is a condition that only affects “older” people, younger people can develop dementia as well. The term Younger Onset Dementia (YOD) is used to describe dementia occurring in people aged under 65 years.

Dementia is associated with progressive cognitive disability, a high prevalence of behavioural and psychological symptoms of dementia (BPSD) such as agitation, depression and psychosis, and stress in caregivers. The manifestation of BPSD is influenced by a wide range of factors and impacts not only on the person with dementia but also carers, family, staff and other residents.

Interventions which focus on addressing the underlying contributing factors rather than the behaviour itself are likely to be more effective.

Dementia Behaviour Management Advisory Service (DBMAS) DBMAS provides support across Australia for people caring for someone with dementia whose behaviour is having an impact on their care.

This free service works directly with those working in aged care facilities, clinicians, community care organisations and family carers to help them better understand and care for people with dementia.

Alzheimer’s Australia (Qld) CEO Jan Samuels said there are more than 42,000 people living with dementia in Queensland alone, and that number is set to grow to 171,000 by 2050.

“This places an enormous challenge on families and professional paid carers who can find the behaviour of someone with dementia distressing or difficult to understand.

“The DBMAS program helps people to cope by having our non-judgemental, professionally trained staff assess the situation and make suggestions to support both the carer and the care recipient” Jan said.

“In some cases people find their day’s schedule and environment stressful and, in turn, may display aggressive behaviour as a way of expressing themselves or trying to communicate their needs.

By changing the routine, introducing more familiar surroundings and working with the carer to understand the person’s frustration, everyone can become more comfortable and confident.”

Contact DBMAS on 1800 699 799 at any time of the day or night. Qualifying situations will be assessed free of charge, and appropriate referrals to other support services can also be made.

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Relationship problems Partners can be the unseen victims as they struggle to cope with the effects of their loved one’s brain injury.

Partners may struggle with anger, dependency, grief, overly direct communication, egocentricity, or simply the stress of looking after the kids and their partner.

Often, underlying these issues lurks the question of whether they should stay or go.

As with so many areas brought about by brain injury, there are no easy answers. There are always exceptions to the rule, but generally the brain will make a limited amount of recovery over a two year period. The greatest recovery should occur in the first year, tapering off into the second year. If the injury was recent, many of the problems occurring may decrease during this recovery phase.

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Counselling Never underestimate the impact of relationship counselling, especially when both people acknowledge there is a problem and want to do something about it. You will need a counsellor familiar with brain injury — check with your Brain Injury Association.

Unfortunately, self-awareness is often a casualty following an injury. If your partner does not acknowledge the cognitive effects of the brain injury, counselling will probably only help you to learn adaptive strategies.

However, where there is still some self-awareness remaining, counselling can help a survivor to gradually become aware of these issues, then do something about them. If a neuropsychological

report was done, this may give some idea of whether this is possible.

Own up to your problems Remember it takes two to tango! Even though you may be doing it tough, some of your reactions could be contributing to the problems. Relational issues usually trigger our own insecurities and you may need to look within yourself at how you may need to change too.

Get educated Read up as much as possible on the effects of brain injury (see our range of fact sheets at www.synapse.org.au). Remember a brain injury is a very real disability and your partner is not choosing to make life difficult for you.

You must adjust your expectations of your partner for this neurological disability, as you would for a physical disability such as cerebral palsy or blindness. Work with your partner on the compensatory strategies — techniques that will compensate for lost skills such as communication, parenting, anger management and organisation.

Get supported Use respite services. Get into a support group and talk to others. Call your local Brain Injury Association and get it off your chest.

When the pressure, despair and frustration are overwhelming, sometimes a break and speaking to someone else can make a huge difference.

It’s still no good!

Despite what is said about our ‘easy divorce’ society, people rarely make the decision to end a relationship flippantly. This decision usually only comes after agonising guilt, depression, frustration and having tried every option to make it work.

When confronted by constant aggression, the decision may be relatively easy for some. But often, the brain-injured person is apologetic, trying the best they can to improve the situation but the relationship may simply not work any longer. Talking all of this through with a skilled counsellor will help you make the best decision in your circumstances.

But what about my partner?

When a partner leaves, the person with the brain injury may react in a number of ways.

If their self-awareness is impaired, they will honestly believe they have been deserted for no reason, and there may be years of antagonism, bitterness or pleading for a return to the way things were.

In some cases, there may be threats or actual

violence which cannot be tolerated in any circumstances — you may need to obtain a restraining order. There may even be threats of suicide. In these cases, talking with a counsellor should have prepared contingency plans and appropriate reactions for any of these possible outcomes.

A point to remember is that there are always options available. For some, they may continue to live with their partners to provide support, but make it clear that the sexual/romantic relationship is finished.

Others have decided to have their ex-partner live nearby and drop in regularly. This often works well when children are involved, as frustration and anger are less likely to flare when the children are only visiting.

When a complete break is being made, talk with your Brain Injury Association about finding supports for your ex-partner. This can be tricky in remote areas, but at the very least most Brain Injury Associations have a free-call number (that can be found on the inside front cover of this magazine) which can be used.

Coming to terms with it all Leaving a spouse can be very difficult, especially for those who vowed to be with them in sickness or health, for better or worse. Many have gradually overcome their guilt by realising the person they had married no longer existed, and had been replaced by the post-injury personality.

Remember many relationships cope with traumas equal to that of a brain injury, and eventually emerge stronger for the experience.

That is why any decision to leave should be first discussed with others who have been there, an experienced counsellor, and after all possible options have been tried.

real life examples I’ve been seeing this guy for a few weeks now and he’s just told me he has a brain injury. He seems normal to me... actually he’s a really nice guy. But he says he gets stressed really easily, and can lose his temper in a big way. What am I getting myself into here? I need to know if this is something I should get out of now while it’s easy. Is there a cure for brain injury? Can these things get worse? How much danger could I be in?

Adrian got his head injury five years ago. The doctors said he made an incredible recovery but I’m at my wits end. He can’t work any more so I have to work full-time, look after the kids, and in a sense look after him. He blows up at the kids and me for no reason. He can’t see past his own nose half the time...

I know this self-centredness and dependency comes with the injury but it isn’t any easier to accept. I can’t have sex with him any more, because he’s like a teenager again. I want to leave but what about the kids? And I took my marriage vows seriously. Also he regularly cries and apologises for not being a husband any more, begging me not to leave. He may kill himself if I leave... I might kill myself if I don’t.

I thought women were the great communicators, but Cheryl just clams up whenever there is a problem.

Since the car accident, she comes across as cold, extremely independent and often pushes me away when things get intimate. I’m pretty thick-skinned, but she can be so blunt! Things are usually okay for around a week, then the tension slowly builds until she shuts me out for two days. Then she’s okay again for another week. Can she learn to communicate again? Or are we locked into this emotional merry-go-round? I seriously don’t know if I could cope with this for too much longer. She’s not the warm, loving person I married.

Families & alcohol issues

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. 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 impaired decision-making, 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.

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What’s an NDIS?

Lack of self-awareness If you haven’t already heard the term, NDIS stands for the National Disability Insurance Scheme and it spells great news for people with a disability.

Why? In the past, the amount of support and services for people with a disability, their families and carers has depended on where they live, what disability they have, and how they attained that disability.

The NDIS aims to change all of that. It will recognise that disability is for a lifetime, and so it will take a lifelong approach to providing care and support.

This means that assessment will look beyond the immediate need, and across the course of a person’s life. Taking a lifelong approach also means focusing on intensive early intervention, particularly for people where there is good evidence that it will substantially improve functioning, or delay or lessen a decline in functioning.

Importantly, an NDIS will support choice for people with disability, their families and carers, and put people in control of the care and support they receive, based on need.

An NDIS will ensure people with a disability are no longer “shut out” from opportunities and independence by providing the appropriate and necessary supports that allow them to reach their full potential.

It will nurture and sustain the support of families, carers and friendship groups — the very communities of support that are critical to improving the lives of people with disability.

An NDIS will include a comprehensive information and referral service, to help people with a disability to access mainstream, disability and community supports.

Apology

Our apologies to Rick Bowie, a regular contributor to Bridge who authored the article “Occam’s Razor” in our previous issue. We mistakenly referred to him as Rick Davies.

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One man’s growing recognition of this common problem I’ve just finished babysitting my two nephews. Four days of babysitting. Four days that left me so thankful that I never had kids. Don’t get me wrong, they are great kids. But by the fourth day I’d had enough.

They interrupt continually. Whether on the phone or talking with a friend who dropped in, Joel just barges in with his own problem (“Paul’s ice cream is bigger than mine!”). Fights instead of negotiation are par for the course. Yelling and hitting are preferred to the more boring strategies of discussion and negotiation.

Ego on two legs Neither of them could really appreciate my own problems. By the last day, I needed a nap desperately and begged them not to wake me up. Within five minutes, they barge in wanting to know if they could have more ice cream.

Taking them out in public can be a nightmare, as Joel is obsessed with death at the moment and keeps asking any adults nearby if they are going to die soon. And Joel can’t be trusted with money as I gave him a 20 dollar note to buy a drink and he returns with no change and a new toy he lost interest in by the time we got home.

They were like pure ego on two legs, draining my patience and energy within minutes.

So here I am on my last day, tired, irritable and compiling a list of how my nephews may be dearly loved, but how they are also self-centred, embarrassing in public, impulsive, rude and continually fail to realise that everyone else is not revolving them.

Hypocrite on two legs Then it hits me. I am compiling the same list that Chris did before she left me. A car accident left me with a ‘mild’ brain injury, a term Chris found amusing in the lighter moments.

The relationship stumbled along for another two years after that idiot ran a red light and ploughed into my Commodore.

She missed the old me. She didn’t like this clingy person who interrupted her in conversations with others, made a fool of himself at parties, spent money with foolish abandon, lost his temper far too often and I generally never thought about her needs.

It seems strange now, that back then I simply thought she was the one who changed. The love of my life had gone from a good-natured, sweet person to a continually nagging bitch. When she finally broke it off, I was bitter for a long time, convinced that it was all her fault and I’d been severely wronged, when I had been an ego on two legs — distilled, concentrated and obviously packing one hell of a punch.

Sluggish frontal lobe As I write this, I’m looking at my old neuropsych report, stating that I have limited capacity for self-awareness. I’ve gradually accepted that indeed I have changed. A string of relationships ended the same way, with the same feedback. I was fired from a string of jobs too, with the same feedback in a business-oriented way (e.g. we need more of a team player). Even my sluggish frontal lobe eventually had to put two and two together and arrive at answers close to four.

This babysitting escapade is yet another self-revelation I’ve had over the years. I rang the brain injury mob a few weeks back and they reckon admitting I had problems was half the battle, so now I figure I’m halfway there. Apparently they can help with learning how to live with others, in relationships and employment. They also figured writing about this would be therapeutic and maybe help others in my situation.

I know Paul and Joel will grow out of their natural self-centredness, impulses and tantrums on the road to adulthood. I wonder if I can start a similar journey in my mid-forties.

Dung beetles & compost heaps

Reproduced under the terms of the GNU Free Documentation License Version 1.2

Rick Bowie takes a positive view on acquiring a brain injury I have a large german shepherd! Both he and I need to walk regularly. For many, that is not an issue. For me, each walk is a little victory, considering 10 years ago I was in a wheel chair after my stroke.

On this morning’s walk, I was thinking of compost heaps and dung beetles. One of the issues surrounding large herds of cattle and sheep is that they produce a huge amount of waste, commonly called dung. This is a natural breeding ground for flies, hence the “great Aussie salute” when one waves the flies away from the face.

Although there are native beetles that did the job, they were overwhelmed by the amount of waste they were provided with. So another species was introduced. They were brought in to help native dung beetles cope with the load, and to reduce large numbers of dung feeding flies. A fringe benefit for the city dwellers is that they also dealt with the large amounts of dog poo which were fairly common on the streets and footpaths until some years ago.

Hmmmm, that’s the connection – dog walks, dog poo, and having to pick it up!

Maybe beetles are the subject of a future note.

Today it is compost heaps.

I’m sure you know the principles behind compost heaps. We keep throwing our waste into it. It becomes a pile of accumulated rubbish – newspapers, grass clippings, meal vegetable waste and so on. No oranges or lemons thank you. These sour the compost heap.

Eventually the unwanted waste and rubbish begins to rot, and the worms come up from their subterranean hideaways, and begin their work of working the rubbish. They eat it, turn it over, and change it into worm droppings.

The heap of unwanted rubbish begins its cycle of change, and, over time, becomes an extremely rich soil additive – just right for growing rich red tomatoes and pumpkins (the seeds of which survived the furnace, and lived to grow another day!).

All in all, I think the compost heap is my most favourite metaphor for my stroke, or cerebrovascular accident (CVA). In one sense, I am the compost heap, and my CVA was the major rubbish that got thrown into my life.

I have discovered that much of my healing has to do with discovering the riches that lie within this rotting mess I call refer to as my “cranial custard”.

Some think I’m nuts when I talk about the

good that arose from 2001 and my time spent in hospital. I lost my job (and I can’t work anymore), I had to move from work-related accommodation, we had to buy a home – the list goes on.

At the time, I railed against anyone and anything. I was angry, and, as I think about it, I was like a skunk – spraying my anger over anything and anyone around me. It has taken me some years to look for the positive side of a CVA. There is an old song from 1944 called Accentuate the Positive. It was written towards the end of the Second World War – a suitable time to “accentuate the positive, eliminate the negative, latch on to the affirmative, and don’t mess with Mister in between”.

As I think about it, hanging around and having a “Pity poor me party” is messing with “Mr in between”.

Take heart! Have a think about your own compost heap, and the riches it is already producing. Look hard, and be pleasantly surprised and delighted!

Rick Bowie has been a contributor for many years and his constant theme of hope has encouraged many readers.

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