1. Working With People With Dementia

2. Learning Outcomes
• Clear understanding of what dementia is • Knowledge of what Alzheimer’s Disease • Understand the progression of Alzheimer’s Disease • Knowledge of medication prescribed to people with Alzheimer’s Disease. • Knowledge of what Vascular Dementia is • Understand the progression of Vascular Dementia • Knowledge of some of the medications prescribed to people with vascular dementia • Understanding of the carer’s perspective • Understanding of the role of Alzheimer Scotland
We are committed to:
Recognising the value of what carers do and the expertise they have
Providing timely, quality information and training – knowledge provides opportunities for more control over their situation
Working in partnership to plan and deliver support to the person with dementia and the carer themselves – support that will maximise independence and fullest possible participation in normal living
Assisting to access benefits, entitlements and maintain or seek employment
Assist to maintain natural, normal support obtained from family, friends and other personal social networks
Assist to access other professionals and services which might help
Provide examples and discuss support services offered to carers in you area
Being reliable
Dementia Day 1

3. What Is Dementia?
“Dementia is a group of progressive diseases of the brain that slowly affect all functions of the mind and lead to a deterioration in the person’s ability to remember, reason and concentrate. It can affect every area of human thinking, feeling and behaviour”
(Murphy 1990)

4. Dementia is an umbrella term
Trainer’s Notes: What is the difference between dementia & Alzheimer’s Disease? This question is asked repeatedly and even by people in the medical profession! Take time to clarify this point. –Dementia is an umbrella or blanket term. It may help if you get the group to think about cancer. When we hear that someone has cancer, we generally make enquiries about what kind of cancer because as we know, there are many different types of cancers. These different types produce different symptoms and will have different treatments. This is also the case with dementia. There are many different types-over 100. Some of course are more common. In this presentation we will only be discussing the most common types. When the group return for day 5-More about dementia, they will learn a little more about some other types of dementia.

5. Common types of dementia in Scotland
This presentation will concentrate on the 2 most common forms of dementia in Scotland: Alzheimer’s Disease and Vascular Dementia. Other types of dementia will be covered in Day 5 –More about dementia.

6. Who is affected? • Dementia affects both men and women and exists
world-wide
• It is most common in older people, but can affect
people in their 30’s 40’s and 50’s
• Approximately 82,000 people are currently living
with dementia in Scotland (2011)
• It is predicted that this figure will rise to 164,000
by 2031 – a rise of 100%
This slide will promote discussion: Younger onset dementia will be discussed in day 5. Younger people are more likely to be diagnosed with one of the rarer types of dementia. This will also be discussed in day 5. The predicted rise in dementia cases has huge implications for society. The rise will partly be due to the aging population.

7. Alzheimer’s Disease
• Brain cells make large numbers of protein. If too
much protein is made or not enough broken down,
then this causes the cell to die
• In Alzheimer’s Disease these proteins build up.
• They form tangles and plaques, which make it
difficult for the cells to communicate with each
other
Taken from Alzheimer Scotland Information Sheet:
The plaques which Dr. Alzheimer found in the areas of the brain used for memory and other cognitive (thinking and understanding) functions contain, along with dead bits of cells, one of the chemicals thought to be the cause of the damage, called beta-amyloid. Beta-amyloid is a fragment taken from a larger protein called amyloid precursor protein (APP) which is found in the membrane of the nerve cells.
But it does not seem to be the amyloid alone that causes the damage. Another chemical, called apolipoprotein, is also involved somehow.

8. Alzheimer’s Disease
There is no need to get too technical at this induction stage. This slide is to demonstrate the tangles and the resulting communication difficulties the cells will experience. Explain that in early Alzheimer’s disease this may only affect certain regions of the brain. As the condition progresses, the damage and brain cell death becomes more global.

9. Alzheimer’s Disease – Risk Factors
• A combination of factors • Age • Environment • Lifestyle • Genetic inheritance • Down’s Syndrome
Age is the biggest risk factor for developing Alzheimer’s Disease. It affects 1 in 14 people over the age of 65 and 1 in 6 over the age of 80.
Trainer: Take time over this slide as it contains a lot of information.
Environmental factors are thought to be of relevance however, given the vast amount of exposure to so many differing factors, it has so far been impossible to identify specific influences. Lifestyle: Research has shown that smoking, high blood pressure, high cholesterol or diabetes increase the risk of developing Alzheimer’s Disease.
There are also protective factors: Maintaining a healthy weight, eating a balanced diet and physical exercise will help. One American study found a 60% reduction in the risk of Alzheimer’s disease in people who ate oily fish at least once a week. Fish oils may help to prevent furring or hardening of the arteries and high blood pressure, which are risk factors for dementia. In another study a high intake of folate (folic acid) was shown to reduce the risk of Alzheimer’s disease by up to 55%. Fortified cereals, green leafy vegetables, orange juice, yeast extract and liver are all good sources of folate. Another study has shown that having a rich social network may reduce the risk due to social interaction and intellectual stimulation.
Genetic inheritance: In very rare cases, Alzheimer’s Disease is clearly inherited from one generation to another. The group may have heard of the Argentinian family who are currently taking part in longitudinal research. The pattern of inheritance for this family is autosomal dominant. That means that each child has a 50% chance of developing Alzheimer’s Disease. This rare type of inherited Alzheimer’s Disease will affect people early in life. In the case of the Argentinian family, this is in the late 30’s. The majority of Alzheimer’s Disease cases are considered to be sporadic, ie, no genetic cause. If your parent or grandparent had Alzheimer’s disease, your risk of getting Alzheimer’s Disease is only very slightly increased, than if you had no relatives with the disease.
People with Down’s Syndrome are at increased risk of developing Alzheimer’s disease. People with Down’s Syndrome now live longer than in previous generations. 1 in 3 people with Down’s Syndrome will develop Alzheimer’s Disease before the age of 50. (People with Down’s Syndrome) can also develop other forms of dementia). People with Down’s Syndrome have an extra copy of chromosome 21. This chromosome is known to be involved in the production of the protein that causes brain cell damage in Alzheimer’s Disease.

10. Alzheimer’s Disease – No Cure
• Low levels of the neurotransmitter acetylcholine
• Medication can be prescribed for Alzheimer’s
Disease. The common drugs are:
• Aricept (Donepezil)
• Reminyl (Galantimine)
• Exelon (Rivastigmine)
• Ebixa* (Memantine)
The brain also has a number of different chemicals. These are called neurotransmitters. Ask the group if they have heard of Seratonin. – Most people have. We increase our levels of Serotonin –the feel good chemical when we each chocolate!
Alzheimer’s Disease is characterised by the lack of another neurotransmitter called Acetylcholine. Aricept, Reminyl and Exelon all increase the acetylcholine levels. These 3 drugs are known as cholinesterase inhibitors. There is no cure for Alzheimer’s Disease at the moment. Research is on-going. The medication may not work in the long-term. These drugs may assist some people with Alzheimer’s Disease by reducing the rate of memory loss, allowing them to live more independently for a longer period of time. The 4th drug, Ebixa, is not a cholinesterase inhibitor and it works in a different way (It protects brain cells by blocking the effects of excessive glutamate). It is not necessary to discuss the action of Ebixa. It is included here as reference will be made to it in day 5 when discussing Lewy Body dementia.

11. Alzheimer’s Disease - Early Stage
• forget about recent conversations and events
• repeat themselves
• become slower at grasping new ideas or lose the thread of
what is being said
• sometimes become confused
• show poor judgment or find it harder to make decisions
• lose interest in other people or activities
• develop a readiness to blame others for mislaid items
• become unwilling to try out new things or adapt to change
Trainers Notes (taken from Alzheimer's Society)
Alzheimer's disease usually begins gradually with very minor changes in the person's abilities or behaviour. At the time, such signs are often mistakenly attributed to stress or bereavement or, in older people, to the normal process of ageing. It is often only when looking back that we realise that these signs were probably the beginnings of the dementia.
Loss of memory for recent events is a common early sign.

12. Alzheimer’s Disease-Middle Stage
• becoming confused about where they are or walking off and becoming lost • becoming muddled about time and getting up at night because they are mixing up night and day • putting themselves or others at risk by not lighting the gas cooker • behaving in ways that may seem unusual, such as going outside in their night clothes • experiencing difficulties with perception and in some cases hallucinations
Trainers Notes (taken from Alzheimer’s Society)
As Alzheimer's disease progresses, the changes become more marked. The person will need more support to help them manage their day to day living They may need frequent reminders or help to eat, wash, dress and use the toilet. They are likely to become increasingly forgetful - particularly of names - and may sometimes repeat the same question or phrase over and over because of the decline in their short-term memory. They may also fail to recognise people or confuse them with others.
Some people at this stage become very easily upset, angry or aggressive - perhaps because they are feeling frustrated - or they may lose their confidence and become very clingy.

13. Alzheimer’s Disease- Late Stage
• The person may become increasingly frail. They may start to shuffle or walk unsteadily, eventually becoming confined to a wheelchair • Other symptoms may include: • difficulty eating and sometimes swallowing • considerable weight loss – although some people eat too much, and put weight on • incontinence, losing control over their bladder and sometimes their bowels as well • gradual loss of speech though they may repeat a few words or cry out from time to time
Trainers Notes (taken from Alzheimer’s Society)
At this stage, the person with Alzheimer's will need even more help, and will gradually become totally dependent on others for nursing care. Loss of memory may become very pronounced, with the person unable to recognise familiar objects or surroundings or even those closest to them, although there may be sudden flashes of recognition
The person may become restless, sometimes seeming to be searching for someone or something. They may become distressed or aggressive - especially if they feel threatened in some way. angry outbursts may occur during close personal care, usually because the person does not understand what is happening. Those caring for the person should try not to take this personally.
Although the person may seem to have little understanding of speech, and may not recognise those around them, they may still respond to affection and to being talked to in a calm soothing voice, or they may enjoy scents, music, or stroking a pet.

14. If you choose to take a break during this presentation, this is the natural point at which to do so.

15. Vascular Dementia • There are different types of vascular dementia
• Two types are:
• Multi-infarct dementia
• Sub-cortical vascular dementia
• A person can have both Vascular Dementia and
Alzheimer’s Disease-this is known as a mixed
dementia
There are different types of vascular dementia. The most common being multi infarct, which is caused by stroke.
Sub cortical vascular dementia (sometimes referred to small vessel disease) is when damage occurs deep within the brain’s cortex.
The following is not essential for inclusion:
Binswanger’s disease is a specific type of sub-cortical vascular dementia. Symptoms include: difficulty walking, clumsiness, and lack of facial expression and speech difficulties. Loss of bladder control is an early symptom of this condition. Some people may experience both sub-cortical dementia and stroke.

16. Vascular Dementia-causes
• The most common type of vascular dementia is
multi-infarct dementia
• It is caused by a series of small strokes. These
strokes can be so small that the person does
not even notice them.

17. Vascular Dementia-causes
Stroke
Ischaemic
Stroke
(Clot)
Haemorrhagic
Stroke
(Bleed)
The brain requires a good blood supply. The vascular system delivers blood to the brain through a network of blood vessels. If damage occurs to brain’s vascular system, then blood cannot reach the brain cells and the cells will die. This can lead to vascular dementia. There are different types of vascular dementia. The most common being multi infarct.

18. Vascular Dementia –Risk Factors
• The risk factors for vascular dementia are the
same as for stroke
• High blood pressure
• High cholesterol
• Diabetes mellitus (type 2)
• Cardiovascular disease
• Obesity
• Increased age
• Genetic risk factors (rare)
Trainer’s notes:
C.A.D.I.S.I.L. (Autosomal dominant artriopathy with subcortical infarcts and leuoencephalopathy) is a genetic condition, causing subcortical vascular dementia, Binswanger’s disease was mentioned in an earlier slide. Binswanger’s is sporadic and CADISIL is the genetically inherited form of that disease (50% chance of inheritance). CADISIL can affect people as young as 25. Although this is considered to be rare, people with CADISIL are often supported by our younger person’s support services. CADISIL will be discussed on day 5.
It is not necessary to mention the following: There are a number of other genetic conditions that can increase the risk e.g. causing high cholesterol levels or clotting disorders (either clots forming too easily or not easily enough. Sickle cell anaemia (red blood cells are abnormally shaped).

19. No specific medication is available
• Aspirin and Warfarin are used to prevent clots and
lessen the risk of further strokes
• Blood pressure, cholesterol and diabetes will be
controlled by drugs
• Antidepressants and sleeping pills may also be
prescribed
It is important to stress that there is no medication that currently treats Vascular Dementia. However, medications are often prescribed for the related conditions.

20. Progression of Dementia
Vascular dementia progresses in a step-like way. There will be a dip in functioning following each ischemic attack (or small stroke). The person’s condition will then plateau for a while until the next small stroke and so on. This is quite different to the progression of Alzheimer’s disease. It has a steady decline. The time of the decline is different for each person, some people may have a very fast decline, while others may have a slower progression.

21. Lewy Body Dementia
• After Alzheimers Disease and Vascular Dementia, it is the 3rd most common form of dementia • like A.D. is caused by a build up of protein, in this case lewy body • like the plaques & tangles seen in A.D. they interrupt the cells ability to communicate and cells die
The cause of lewy body build-up is as yet unknown.

22. Lewy Body Dementia –risk factors
• Age • Genetics- can develop in people with no family history however, having a relative with this type of dementia increases the risk • Can develop in combination with Alzheimers Disease and Parkinson’s Disease
Dementia Day 1

23. Lewy body Dementia - symptoms
• similar to A.D. • problems forming new memories or recalling past memories • becoming easily confused and/or inappropriate decisions/actions • similar to Parkinsons disease • moving slowly, shuffling or shaking as they walk • falls • blank expression (can be mask like) • walking or standing stiffly with legs and arms flexed • relatively unique to LBD • fluctuation in symptoms from hour to hour, moment to moment • hallucinations and delusions • R.E.M. sleep disorder - lots of movement/ acting out dreams in sleep
Lewy body dementia shares symptoms in common with both AD and Parkinson’s. It also has a range of symptoms specific to LBD. Lewy body dementia affects the whole brain, so symptoms can be wide-ranging and unpredictable.
Due to the fluctuating nature of this condition-sleepiness, limited/fluctuating attention span and fluctuating mobility problems, it can be difficult for the support worker in terms of planning activities etc. Probably best to have a range of things to call on and go with the flow-see how the person is that day.

24. Lewy Body Dementia -medication
• there is no specific medication for Lewy Body Dementia
• Benefits seen in people prescribed medication for A.D.
People with LBD are particularly sensitive to certain neuroleptic medication –can result in death

25. The Family
A carer is any partner, relative, friend or neighbour who provides or has provided care or support in any way or for any amount of time. They may or may not live with the person with dementia who may live in the community or long stay care or the person who received care may have died.
The old induction program had a specific section on carers. Since the induction programme is now incorporating the requirements of the Promoting Excellence Framework, the section of carers is no longer being included in the first 2 days of induction. In day 5 the group will be introduced to The Impact of Dementia on The Person With Dementia and Their Families. However the following 3 slides will introduce the subject.
Explore with the group – what do they understand by the term ‘carer’ – what does the term bring to mind?
Explain the term in relation to it’s use – professional/paid carer and use within our organisation
Introduce the definition above – our organisational definition – from our carer services policy. Tease out what this means – break it down
Why do you think this definition includes people who provided support to people who live in long stay care or may have died?
Explore what people might feel about being termed a ‘carer’ – eg. How would you feel about the label if it was your husband or wife who had dementia? Equally, if you had dementia, how do you think you might feel about your partner being referred to as your carer?
What kind of assumptions are there about someone who is a ‘carer’?

26. The experience of partners and family members
• getting the diagnosis • difficulties with daily living • changed relationships • emotional and behavioural aspects
Life before the diagnosis:
Consider what carers may have experienced even before the point of diagnosis – think what people have come through – changes in the person – dealing with the unknown – perhaps difficultly in getting the person to realise there is a problem – getting the person to the GP, getting the GP to take concerns seriously – perhaps years of such concerns before we meet the family
Consider personalities, life experiences and relationships prior to dementia
Daily living difficulties and changes:
Who does what – skills, habits and routines might be turned on their head. Perhaps things previously shared now have to be tackled alone, carer taking on more and more responsibilities. Person with dementia may not see what needs to be done
Practical impact – eg. person with dementia having to give up driving, employment
Carers required to take responsibility increasingly for everyday tasks and household chores, such as cleaning, washing and cooking
Carer and person with dementia experiencing losses – both experiencing stress
Possible losses – conversation, support, sharing, intimacy, role that the person played in the carer’s life

27. Our Role
• working in partnership • empowering, supporting, informing • mutually respectful relationship including confidentiality • providing quality services
We are committed to:
Recognising the value of what carers do and the expertise they have
Providing timely, quality information and training – knowledge provides opportunities for more control over their situation
Working in partnership to plan and deliver support to the person with dementia and the partner/family members – support that will maximise independence and fullest possible participation in normal living
Assisting to access benefits, entitlements and maintain or seek employment
Assist to maintain natural, normal support obtained from family, friends and other personal social networks
Assist to access other professionals and services which might help
Provide examples and discuss support services offered to carers in you area
Being reliable