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HSE Approved to undertake First Aid at Work Training : Approval No. 13 / 05 Registered Office: 136 Bridge Street, Ledbury, Herefordshire, HR8 2AS : Tel 0800 007 5248 Registered in England & Wales Company Number: 5258503 1 Holos Healthcare & Training Limited 0800 007 5248 Email [email protected] www.holoshealthcare.co.uk July 2012 CASE STUDY 16 This topic deals with a situation, which is a rapidly growing problem within the UK and around the world – Dementia, the different types, how to recognise onset, and how to manage the challenging behaviours which often result. There is a very real chance that we will all be affected by this very difficult issue, either as a carer or, sadly, as a sufferer. Dementia Awareness Case Study: Janet has not seen her 78 year old parents for 6 months due to work pressures and is delighted that they have come to stay for a couple of weeks. Within a couple of days of their arrival, however, she begins to be concerned about her mother, Mavis, who has bouts of confusion at various times. She mentions it to her father, Bill, who shrugs it off saying it is just Mavis “having a senior moment”. Janet recently completed a first aid course for her workplace so she questions her parents gently about Mavis’ symptoms but there have been no accidents with head injuries and a recent check up at the Dr’s revealed no diabetes or infections. Mavis becomes agitated then distressed with the questioning which is very unusual as she is renowned within the family for her placidity and good humour. Janet is alarmed and frustrated as she feels helpless. Scale of the Problem The Alzheimer’s Society have labelled Dementia as “A National Challenge” and one which is only going to become greater with time. Dementia is not a natural part of growing old, though the prevalence of the condition definitely increases with age. It is caused by a variety of diseases of or damage to the brain. By far the most common disease cause is Alzheimer’s and the most common damage cause is as a result of strokes. Dementia occurs as a result of damage to both sides of the brain, specifically in the limbic system which consists of structures responsible for various functions, particularly memory, emotions, behaviour and motivation. These structures include the Hippocampus, Amygdala and Hypothalamus and an understanding of the damage dementia causes to these helps considerably towards understanding the challenges that come with the condition. Dementia is most common in older people, but younger people (under 65) can get it when it is usually referred to as early onset dementia. By age group the numbers currently are as follows – 40 – 64 years = 1 in 1400 people 65 – 69 years = 1 in 100 people 70 – 79 years = 1 in 25 people 80 + years = 1 in 6 people. 2012 research figures show that two thirds of dementia sufferers are women and that one in three people over 65 will develop the condition. Two thirds of people with dementia live in the community (saving the UK over £8 billion a year) and one third in care homes. If the onset of dementia could be delayed by 5 years, deaths directly attributable to dementia (currently around 60,000 a year) would be halved. There are currently 800,000 people suffering with the condition and this is projected to rise to 1,700,000 by 2051. The cost implications to the Country are staggering with an expectation that by 2025 dementia will cost the NHS more than heart disease and cancer combined and by 2050 it could potentially bankrupt the system entirely. Causes of Dementia There are many conditions and situations to which dementia is accredited but two stand out - Alzheimer’s and Vascular Dementia. Other less common causes include Lewy Bodies – responsible for around 4% of cases, this is caused by irregularities within protein in brain cells, and shows symptoms similar to Parkinson’s Disease as well as Alzheimer’s. Picks Disease or Fronto-temporal – responsible for a relatively small number of cases, but the second most common pre-senile dementia. As the name suggests it affects the frontal and temporal lobes of the brain commonly leading to significant changes in personality. Karsakoff’s Syndrome – again rare, but the most common cause of dementia in younger age groups. Strongly linked to excessive alcohol consumption.
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Page 1: Holos Healthcare & Training Limited 0800 007 5248holoshealthcare.co.uk/16Dementia.pdfHSE Approved to undertake First Aid at Work Training : Approval No. 13 / 05 1 Registered Office:

H S E A p p r o v e d t o u n d e r t a k e F i r s t A i d a t W o r k T r a i n i n g : A p p r o v a l N o . 1 3 / 0 5 Registered Office: 136 Bridge Street, Ledbury, Herefordshire, HR8 2AS : Tel 0800 007 5248

Registered in England & Wales Company Number: 5258503

1

Holos Healthcare & Training Lim ited

0800 007 5248 Email [email protected] www.holoshealthcare.co.uk July 2012

CASE STUDY 16

This topic deals with a situation, which is a rapidly growing problem within the UK and around the world – Dementia, the different types, how to recognise onset, and how to manage the challenging behaviours which often result. There is a very real chance that we will all be affected by this very difficult issue, either as a carer or, sadly, as a sufferer. Dementia Awareness Case Study: Janet has not seen her 78 year old parents for 6 months due to work pressures and is delighted that they have come to stay for a couple of weeks. Within a couple of days of their arrival, however, she begins to be concerned about her mother, Mavis, who has bouts of confusion at various times. She mentions it to her father, Bill, who shrugs it off saying it is just Mavis “having a senior moment”. Janet recently completed a first aid course for her workplace so she questions her parents gently about Mavis’ symptoms but there have been no accidents with head injuries and a recent check up at the Dr’s revealed no diabetes or infections. Mavis becomes agitated then distressed with the questioning which is very unusual as she is renowned within the family for her placidity and good humour. Janet is alarmed and frustrated as she feels helpless. Scale of the Problem The Alzheimer’s Society have labelled Dementia as “A National Challenge” and one which is only going to become greater with time. Dementia is not a natural part of growing old, though the prevalence of the condition definitely increases with age. It is caused by a variety of diseases of or damage to the brain. By far the most common disease cause is Alzheimer’s and the most common damage cause is as a result of strokes. Dementia occurs as a result of damage to both sides of the brain,

specifically in the limbic system which consists of structures responsible for various functions, particularly memory, emotions, behaviour and motivation. These structures include the Hippocampus, Amygdala and Hypothalamus and an understanding of the damage dementia causes to these helps considerably towards understanding

the challenges that come with the condition. Dementia is most common in older people, but younger people (under 65) can get it when it is usually referred to as early onset dementia. By age group the numbers currently are as follows – 40 – 64 years = 1 in 1400 people 65 – 69 years = 1 in 100 people 70 – 79 years = 1 in 25 people 80 + years = 1 in 6 people. 2012 research figures show that two thirds of dementia sufferers are women and that one in three people over 65 will develop the condition. Two thirds of people with dementia live in the community (saving the UK over £8 billion a year) and one third in care homes. If the onset of dementia could be delayed by 5 years, deaths directly attributable to dementia (currently around 60,000 a year) would be halved. There are currently 800,000 people suffering with the condition and this is projected to rise to 1,700,000 by 2051. The cost implications to the Country are staggering with an expectation that by 2025 dementia will cost the NHS more than heart disease and cancer combined and by 2050 it

could potentially bankrupt the system entirely.

Causes of Dementia

There are many conditions and situations to which dementia is accredited but two stand out - Alzheimer’s and Vascular Dementia.

Other less common causes include – Lewy Bodies – responsible for around 4% of cases, this is caused by irregularities within protein in brain cells, and shows symptoms similar to Parkinson’s Disease as well as Alzheimer’s.

Picks Disease or Fronto-temporal – responsible for a relatively small number of cases, but the second most common pre-senile dementia. As the name suggests it affects the frontal and temporal lobes of the brain commonly leading to significant changes in personality.

Karsakoff’s Syndrome – again rare, but the most common cause of dementia in younger age groups. Strongly linked to excessive alcohol consumption.

Page 2: Holos Healthcare & Training Limited 0800 007 5248holoshealthcare.co.uk/16Dementia.pdfHSE Approved to undertake First Aid at Work Training : Approval No. 13 / 05 1 Registered Office:

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Others, including dementia as a result of syphilis, Huntingdon’s Disease and Creutzfeldt-Jakob disease (CJD) together account for less than 1% of cases and are still being researched in some depth.

Damage Caused The brain has billions of cells called neurons each of which has an axon and usually many dendrites. Information is received via the dendrites and sent out along the axon. Neurons communicate with each other by information “jumping” across a synapse (gap) from one cell’s axon to the next cell’s dendrite. Neurons repair themselves and in certain areas of the brain, new cells are created (neurogenesis). Sadly, Alzheimer’s disrupts all of these functions

Dementia causes the passage of information between neurons to be interrupted either by Plaques and / or Tangles. Plaques form outside of the cell structure when a concentration of Beta Amyloid protein forms in clumps at the end of the dendrites thus preventing communication between cells. This is why sufferers in the early stages of the condition can often have the ability to carry out part of a function without being able to complete it. An example of this was a gentleman who wanted to make himself some soup, removed the can from the cupboard then placed the can directly onto the cooker – some information got through before neuron communication failed.

Tangles form within the cell structure and are the result of a protein called Tau, that forms the communication highway within the Axon, mis-folding meaning that the highway becomes tangled and communication gets lost.

Vascular Dementia

Vascular dementia starts when damage occurs to both sides of the brain as a result of a failure in blood supply. If only one side of the brain is affected then there may be problematic symptoms but not dementia. It accounts for almost 20% of dementia cases and often follows either a series of minor strokes, multi infarct dementia (MID), or a lone major stroke, single infarct dementia (SID).

One way of explaining the different effects of MID and SID is as follows – A person is standing at the top of a cliff a step in from the edge. MID is similar to having lots of medium weight balls thrown at them – no real effect in the short term but eventually the person will be knocked of balance and step back over the edge of the cliff. SID is the same person having a medicine ball thrown at them with force – the one event causes the step back off the cliff

Vascular dementia has a stepped progression, with sufferers often remaining at the same level of mental and emotional ability for some time then having a sudden and marked deterioration from which they do not improve. The “steps” are random in time length and in severity of drop and may be linked to further small strokes occurring.

A major difference between Vascular Dementia and Alzheimer’s is the ability to make a definitive diagnosis. The damage responsible for Vascular will show up on a brain scan while Alzheimer’s does not. The diagnosis for the majority of non vascular dementia sufferers will be “symptoms consistent with Alzheimer’s” as, currently, a definitive diagnosis can only be made by way of an autopsy.

Alzheimer’s Dementia

Named after Alois Alzheimer who first described the condition in the early 1900’s, the seriousness of it only began to be fully recognised in the 1970’s. Alzheimer’s occurs when the damage to the brain cells in the areas of the brain mentioned earlier outpaces the rate as which new cells can be created. Stages of Deterioration Alzheimer’s has a transitional progression with sufferers sometimes giving the appearance of improving before sliding into a worse state than they were before the apparent improvement. Five stages can be identified in the deterioration of brain function as the disease progresses – Stage 0 – often perceived purely as getting old, with symptoms being disguised, laughed off or denied. Stage 1 – occasional lapses in attention begin to appear such as losing track in mid sentence or task; becoming uncertain or even lost on a familiar route and struggling to recognise familiar names, faces or places. Stage 2 – abnormal mistakes become more frequent, with some level of care required on a day-to-day basis. Incontinence issues may begin to be noticed, as do instances of loss of spatial awareness. A drugs regime to attempt to slow further deterioration may be introduced.

AXON

DENDRITE

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Stage 3 – dexterity deteriorates further, and apparently aimless wandering and repetition increases. Speech abilities decrease and language may revert to original first language with learned English being forgotten for periods. Every time is now the first time, whether it be people of places. Stage 4 – a complete withdrawal into an unknown world. Assistance is required for even the most basic of functions. The area of the brain affected will impact on the behaviour changes displayed by the sufferer.

Hippocampus The hippocampus is responsible for memory, taking information from short term memory to long term memory and ultimately to permanent memory. Its functions and therefore symptoms of damages can be summed up by SMALL S – Spatial Awareness M – Memory A – Attention L – Logical thinking L – LOST So someone showing signs of Alzheimer’s will have difficulty with recognising distances when reaching for an object and may miss them entirely or bump into things. They will remember events of sixty years ago more easily than sixty minutes ago. Half way through a task or even a sentence they will lose interest or focus on what was being done or said or where they were going. Reactions will become progressively more driven by emotion rather than logic with uncharacteristic outbursts increasing. Amygdala The amygdala is slower to be affected than the hippocampus, but will sustain damage as brain cells are affected. As the hippocampus damage sets in then the amygdala gains more and more of the upper hand. The

amygdala is all about emotions and emotional memories. It processes fear responses and damage can lead to extreme reactions to real or perceived dangers. A way to try to explain how the balance between the hippocampus and amygdala work is to liken their working relationship to that of the pedals in a manual gear shift car. The hippocampus is the clutch, controlling the amygdala’s brake and accelerator and preventing extremes of either. As the hippocampus is damaged and weakened then the amygdala takes over leading to excessive “speed” or “braking”. Hypothalamus The hypothalamus is the brain’s thermostat, telling us when we are hot, cold, hungry or thirsty. It also regulates blood pressure, heart rate, sleep cycles, energy levels and bladder and testicular functions. Damage here leads to many of the difficulties faced in maintaining the physical well being of sufferers as the recognition of basic needs diminishes. Urinary infections often result from inadequate fluid intake and incontinence can become common. Behavioural difficulties can manifest in perceived inappropriate sexual advances to people who remind them of attachments earlier in life. Behavioural Changes Once some basic understanding of the damage being caused to the various areas of the brain is gained, then a greater understanding follows as to why many of the challenging behaviours occur. It is not necessarily true that dementia sufferers behave less rationally than those who do not have the condition. It is more the

case that because their perception of the world around them has altered their behaviour changes to reflect that. They are in fact behaving perfectly rationally in relation to their reality. Alzheimer’s sufferers are often not being deliberately awkward or difficult despite how their behaviour may appear. Many of the most common “problems” can be quite logically explained – Shadowing – the increase in influence of the amygdala leads to a more and more emotional responses and reactions, so a sufferer will often attach themselves to someone who reminds them of a person of whom they hold strong emotional memories. They will then follow this person slavishly, often wanting and needing to maintain a physical contact. Loss of this contact can lead to distress with excessively emotional displays. Memory - as the hippocampus damage causes deterioration of short and medium term memory then the long term memory, especially when there is an emotional element, becomes all that remains real. This can cause the here and now to become very confusing as simple things bear no resemblance to what is now the perceived reality. Imagine looking into a mirror and not recognising the person looking back at you is – this is a common occurrence for Alzheimer’s sufferers who in their minds are 20 or 30 years old, not the 70 or 80 year old looking back at them. This can lead to escalation of the difficulties already being caused by the hypothalamus damage - bladder control difficulties are then exacerbated by the fact that there is a “stranger” in the bathroom so they can not use the toilet !! Aggression – often results from the confusion and frustration in the inability of people around them to understand efforts at communication – not dissimilar to the tantrums thrown by small children who cannot make adults understand their needs. They know what they mean and cannot understand why everyone

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else does not also do so. Amygdala dominance means that emotional reactions are exaggerated so relatively minor issues take on much greater significance than those unaffected by the disease can comprehend. A negative attitude towards a certain individual may also come about as a result of an emotional memory – simply looking, sounding or even smelling similar to someone who is remembered as being disliked can cause that dislike to be transferred. Wandering – Alzheimer’s sufferers often walk miles and often over a relatively small floor space. This can regularly be accompanied by a compulsion to be somewhere with something urgent which needs to be done – however the details of exactly where and what elude them. Comfort Items / Actions – carrying a doll, teddy bear, piece of clothing, picture, or ornament may become a necessary part of a sufferer’s day. Often this will reflect on their past, commonly their working life, e.g. one lady in a care home would regularly go into other residents’ rooms and fold all their clothing and rearrange things neatly – she had worked as a seamstress and housekeeper all her life. Another gentleman drove care home staff crazy by his constant urge to move furniture. He would regularly strip a room and stack all the contents of it neatly at one end. It was only when a young carer from a family of furniture removers began work there and recognised what he was doing that the “trick” of managing his behaviour became clear – simply telling him that it was tea break time every time he approached a piece of furniture was enough – he had been a furniture remover for most of his working life. Freezing – suddenly stopping and refusing to move may be as a result of no awkward intent, but merely that they do not know where they are, where they were going or who the person with them even is. If the age they have reverted to is young enough they may be at a time when the over-riding message from parents was “you never go anywhere

with a stranger” and to them everyone is now a stranger. It may also be that a dark pattern in the carpet or shadow on the floor is to them a huge hole due to eye sight deterioration linked to a loss of spatial awareness. Managing Challenges Knowing something about the history of a Dementia sufferer can assist with managing behaviour which is labelled challenging. As previously mentioned, reversion to an earlier time of life is common, so knowing about that earlier life gives clues as to what the reality is for the person – and it will not be the here and now. It is absolutely pointless trying to make the now real – it only leads to further confusion. So whilst the sufferer is in the earliest phases of the dementia get as comprehensive a history as possible – likes, dislikes, nicknames, family favourites, working history, musical tastes etc etc….. Many dementia sufferers who are in care homes inadvertently cause loved ones huge amounts of distress. There is often guilt that the care could not be continued by the family and this is then exacerbated when physical deterioration occurs and the sufferer complains of never being given food or drink – this is rarely true, but the damage to the hypothalamus along with the loss of short term memory can make this a very genuine belief. Care homes are becoming better aware of the need to actually ensure that food and drink are consumed rather than just putting a cup and plate down and expecting the contents to be dealt with. A Dementia sufferer may well not recognise what such things are, will not feel hungry or thirsty, and may be unable to co ordinate reaching out and picking utensils up even if the objects and the need for them is recognised. Assistance and persistence may be required. When food is refused simply walking with it away for a few moments then returning with the “food they specifically asked for” may be all that is needed to encourage intake.

Constantly asking to go home causes some of the greatest distress on both sides. The family member feels cruel for incarcerating the sufferer and the sufferer becomes desperate for home. But where is home? It could be wherever home was 30 or 40 years ago, not the home in which they lived prior to the care home. One gentleman who had been in the merchant navy all his working life was always fretting about not getting back to his ship in time to sail. Simply telling him that his room in the care home was his cabin or that it was fine because the Captain knew he was on the way shortly was enough to calm him. One care home had the foresight to construct a bus shelter in the garden and residents could be given their coat and bag and taken to the bus stop, being told the next bus was the one they needed. After a while they could then be collected from the bus stop with carers giving the assumption that the resident had just been dropped off by the bus. This is not playing games with the mind – it is allowing their reality to be real within the limitations of what the care home can do to ease the distress using what is left of their memory. Removing mirrors from bathrooms can assist in minimising incontinence accidents. The old person seen in the reflection is a stranger and someone who is already using the facilities. Reflective glass on pictures can also cause confusion as it gives the impression of lots of people being in the room, so whose room is it and should the sufferer be there?

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This picture shows what can be done with visual effects and closely resembles some of the visual reality of a dementia sufferer.

Colours can have an impact. Research has shown that strong, bold, bright colours produce a more positive response than white. If a sufferer injures themself (a common occurrence with spatial awareness deterioration) and a standard bandage is applied then they may become fixated on picking at it and trying to remove it. A spot, mole or scab becomes a foreign entity so needs to be removed with frantic scratching or rubbing. Simply covering the bandage or offending mark with a coloured covering may be sufficient – an excellent and easily obtained example is a tail bandage used by horse owners. They come in a variety of bright colours and are very long so can be cut down to useable lengths. Colours can be used to both encourage and discourage. Using bright coloured crockery on plain white table covering has been shown to increase the amount eaten, whilst using plain white paint on doors assists in preventing wandering to areas “off-limits” as signs lose their meaning. Carers ultimately need to understand the condition and remember that when aggressive behaviour is displayed it is invariably not meant personally. Aggression may result from a simple deterioration in circumstances – Discomfort - if not relieved leads to Frustration - if not relieved leads to Irritation – if not relieved leads to Aggression.

Trying to deal with the cause early can lead to an immediate calming. Aggression may also be aimed at someone merely because of a perceived resemblance to someone else from the past. Avoidance or limited contact may be the only option. Avoiding Dementia There is currently no cure for Alzheimer’s or dementia however the well-publicised life style changes that are recommended to avoid heart disease and strokes are also strongly believed to be beneficial to preventing dementia and particularly Alzheimer’s. Almost weekly, it seems, new ideas are being hailed as the “new” way to prevent Alzheimer’s or the “new” contributory factor in causing Alzheimer’s. A study led by Karolinska Institute in Sweden reported in Science Daily in June 21012, for the first time the positive effects of an active vaccine against Alzheimer's disease. The new vaccine, CAD106, triggers the body’s immune defence against Beta Amyloid protein and could prove a breakthrough in the search for a cure for those in the early stages of the disease. The study is published in the scientific journal Lancet Neurology. Larger trials are now needed to prove the effectiveness of this vaccine. A study by the University of California looked into lifestyle effects. The study highlighted quitting smoking, increasing physical activity, enhancing mental activity, controlling blood pressure and diabetes risk factors, as well as

managing depression and obesity as means of helping combat the disease and claims that lifestyle and dietary risk factors might cause as many of 50% of cases of Alzheimer’s disease worldwide. Exercise, particularly when the body and brain have to work in co-ordination, has been shown to increase neurogenesis so will assist in slowing down any rate of deterioration. A healthy diet, high in fruit, vegetable and oily fish will be of benefit to the body as a whole and therefore must benefit the brain. Learning a new skill, no matter how old you are forces the brain to create new neural pathways and therefore keeps the lines of communication open and intact. A study which has been on going for over 20 years followed a group of nuns noted for the number of their group who lived full and active lives well into their 100’s. These nuns led simple and secluded lives eating healthily and constantly studying new skills and subjects. Their brains remained acute long after what might normally be expected in women of their ages with much lower levels of dementia developing. The few who did develop symptoms of dementia were found on post mortem examination to have suffered stokes of varying magnitude rather than any signs of Alzheimer’s. Currently, the ultimate thing to remember with dementia is that once a certain level of deterioration is reached then there is no way back and from that point on every time is the first time.

Case Study – contd: Janet allows the situation to calm and asks no further questions of her parents. She unobtrusively observes Mavis’ behaviour and keeps a note of further lapses in focus and episodes of confusion whilst researching dementia on line. When her parents return home she makes arrangements to have leave from work and finds an excuse to follow them a couple of days later. She is further alarmed when she sees the deterioration in the normally pristine conditions within their home. When neighbours call she notices that Mavis avoids answering the door, creating circumstances which mean that Bill or Janet have to do so. Janet meets with a couple of Mavis’ friends who she also knows quite well and is surprised at the relief they show when she mentions Mavis’ behaviour – it emerges that they have been growing concerned for months. She takes Bill aside and explains her concerns and the research she has done. He breaks down and admits that he has been quietly frantic about the future and how to cope with Mavis’ increasingly erratic behaviour. They then both contact the GP and arrange for a consultation.

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Case Study 16 - Self Check After reading the accompanying article, have a go at the 10 Multi Choice Question (MCQ) paper below - answers below. 1 Dementia results from damage to which brain system 2 The two most common causes of dementia are

A. Cerebrum A. Lewy Bodies and Alzheimer’s B. Cerbellum B. Alzheimer’s and Vascular C. Limbic C. Karsacoff’s and Picks

D. Brain stem

D. Vascular and Karsacoff’s

3 Brain cell renewal is know as 4 Healthy brain cells have a number of A. Neurogenesis A. Axons B. Neuralgia B. Dendrites C. Neurofen C. Axons and Dentrites

D. Neutrogena

D. Neither

5 Plaques are caused by clumping of which protein 6 Tangles occur when which protein mis-folds A. Beta Blocker

A. Tau B. Beta Histamine B. Too C. Beta Carotene C. Tin

D. Beta Amyloid

D. Top

7 Vascular Dementia has which kind of progression 8 The Hippocapmus is responsible for A. Progressive A. Emotions B. Stepped B. Memory C. Transitional C. Temperature

D. Reversed

D. All of the above

9 The Amygdala is responsible for 10 The Hypothalamus is responsible for A. Emotions A. Emotions B. Memory B. Memory C. Temperature C. Temperature

D. All of the above

D. All of the above

Whilst every endeavour is made to utilise up to date information, the world is constantly moving at a fast pace. Any comments (good or bad), queries, corrections would be appreciated. Please email to [email protected] or call on 0800 007 5248. If you found this article / questioning useful and you would like us to investigate other areas for future case studies, again please contact us.

References & Acknowledgements The Alzheimer’s Society – www.alzheimers.org.uk The Reeve Nooney Partnership – www.reevenooney.com The Great Courses - Professor Jeanette Norden, Understanding The Brain ScienceDaily (June 7, 2012) Dr Deborah Barnes of the University of California

Answers 1-10

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6. A

7. B

8. B

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1. C

2. B

3. A

4. B

5. D


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