Unit 9 Understanding Dementia

About this unit

In this unit learners will gain an understanding of dementia and the causes of the condition. They will develop an understanding of what dementia feels like and the symptoms that may be experienced. Learners will gain an understanding of ways in which dementia can be managed and treated and will also gain an appreciation of the roles and needs of family and friends.

Learning Outcome 1

The learner will:

Understand the term ‘dementia’ The learner can:

1.1 Define the term ‘dementia’

1.2 Identify four of the most common types of dementia.

1.1 Defining Dementia

Dementia is not a single specific disease or illness but is instead, an umbrella term used to describe many different conditions, all of which have one thing in common. They attack and destroy the cells in the brains of people with a dementia.

Dementia is a term used to describe a group of symptoms e.g. a gradual loss of memory, a decline in the ability to think and reason, and problems with communication. Symptoms are caused by a variety of different disorders and conditions.

Some facts about Dementia

□ Dementia is not a normal part of the aging process, however age is a risk factor i.e. the older you are the more likely you are to experience a dementia. About 1 in 5 people over 80 experience dementia

□ The total number of people with a dementia in the UK is approximately 800,000

□ Dementia can affect anyone of any age, culture, race, status, or gender

□ Each person’s experience of a dementia will be unique.

It is easy for the person with dementia to become lost in the eyes of others i.e. they end up seeing the type of dementia and the symptoms and not seeing the person. This should always be prevented.

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It is important to realise that behind the dementia there is still a person who is trying their best to make sense of their world.

A good way of thinking about dementia is to compare it to cancer. With cancer there are lots of different causes and types of cancer including:

□ Breast Cancer

□ Testicular Cancer

□ Lung Cancer

1.2 Types of Dementia

This is also true of dementia, with many varied conditions all being classed as a dementia.

Alzheimer’s disease

Creutzfeldt -

Jacobs disease

(CJD)

Vascular

Dementia with

Lewy bodies

HIV Brain related

impairment

Alcohol related dementia

The names of some of the conditions that cause dementia are:

□ Alzheimer’s disease

□ Vascular dementia

□ Dementia with Lewy bodies

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Learning Outcome 2

The learner will:

Understand the causes of dementia

The learner can:

2.1 Describe three possible causes of dementia

2.1 The Possible Causes of Dementia

For many of the dementias including Alzheimer’s disease, it is still unknown what the cause is. Many theories have been proposed including:

□ Genetics

□ The environment

□ Psychological and social factors

Because there is so little known about the cause of dementia there is still no cure, although huge amounts of research is ongoing into the subject and progress is being made.

Alzheimer’s Disease

Alzheimer’s disease is probably the best-known type of dementia. This may be because about half of all people with a dementia will have this particular condition i.e. Alzheimer’s disease. Cells in a person with Alzheimer’s disease’s brain are damaged and destroyed by things called:

□ Plaques

□ Tangles

Together they literally suffocate a person’s brain cells.

Usually over a long period of time, a person with Alzheimer’s disease will become less able to do more and more things that they once did – their deterioration is a bit like rolling a ball down a hill, where the ball may go quickly or slowly. Each person with a dementia will experience a unique decline in their abilities. For some people it may be quite quick, for others it may take many years.

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Vascular Dementia

Cells in the brain of a person with a vascular dementia are destroyed as a consequence of strokes.

These strokes can cut off the blood supply to the brain and so the cells in the brain starve to death due to the blood not bringing the cell oxygen to breathe.

People with a vascular dementia may decline in a step pattern, i.e. a stop start way rather than constant. The person will have a stroke – decline and then plateau off until they have another stroke and decline further.

Dementia with Lewy Bodies

Dementia with Lewy Bodies is where deposits that develop in nerve cells in the brain go on to destroy a person’s brain cells.

People who have dementia with Lewy bodies can experience hallucinations i.e. they see things that are not there. It seems that a number of people with Parkinson’s disease develop Dementia with Lewy bodies.

Other types of Dementia

There are lots of other types of dementia including:

□ Frontal-temporal dementias, including Pick’s disease

□ CJD – Creutzfeldt-Jakob Disease

□ HIV Brain related impairment

□ Alcohol related dementia

These are very rare types of dementia.

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Learning Outcome 3

The learner will:

Understand what dementia feels like The learner can:

3.1 Describe what dementia feels like

3.1 Signs and Symptoms/What Dementia Feels Like

Dementia results from too many brain cells dying and is generally progressive. Symptoms vary from person to person and may include:

□ Memory loss, especially forgetting people’s names, dates or

specific events such as birthdays

□ Difficulty making decisions

□ Difficulty looking after oneself

□ Difficulty expression and/or understanding speech

□ Disorientation to time, place and person

□ Confusion

□ Changes in behaviour

□ Loss of the skills required to carry out normal activities of daily living

All of these signs and symptoms may lead to frustrations, sadness, fear, anxiety and embarrassment. The person may feel useless and worthless which will adversely affect their self-esteem and well-being.

Activity 59a and Activity 59b in your Activities and Self-Assessment

Workbook relates to the section above

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Learning Outcome 4

The learner will:

Understand how dementia affects the individual, their life and their friends and family.

The learner can:

4.1 Describe some of the ways dementia may affect the individual and their

life

4.2 Describe how dementia may affect their friends and family

4.1 Effects of Dementia on the Individual and their Life

Different parts of our brain are responsible for different things. In a dementia such as Alzheimer’s disease, cells across the whole brain can be destroyed. This means that a person with a dementia can face a number of difficulties doing everyday things. It is commonly thought that a dementia causes memory loss but this is just one of the symptoms.

There are three main parts to our brain that help us do everything including:

□ Remembering

□ Reading and writing

□ Singing and talking

□ Knowing when we are hungry or thirsty – could lead to malnutrition and dehydration

□ Falling in love

□ Thinking

□ Understanding what we are seeing – Agnosia – not able to recognise familiar objects

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These areas are called the:

□ Frontal lobes

□ Parietal lobes

□ Temporal lobes

Understanding the Frontal Lobes

Our brain has a left side and a right side and these areas exist on each side of the brain. This picture shows a side view of the brain.

The frontal lobes are found in the front part of our brains. This part of the brain helps us to do a number of things. One of the main areas it is involved in is controlling our behaviour.

The Controller

As we grow, others shape our behaviour. No one likes to be the odd one out and so we learn to follow certain rules, control certain emotions or wishes and act in certain ways so that others accept us.

However, damage to this area of the brain can lead to a person with a dementia no longer being aware of when their actions are seen by others as being inappropriate or offensive, because they can no longer control these things. So a person might:

□ Take their clothes off in public

□ Masturbate in public

□ Swear at people

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There is nothing wrong with these behaviours; we all do them, but not in public. The difference is, when we don’t have a dementia we know when and where to do them and when not to. A person with a dementia may look like they should know when not to do these things, but they don’t because the part of the brain that controls this is damaged.

You and your colleagues should try and maintain a person’s dignity. Also think about why a person with a dementia would be doing these things. Are they taking their clothes off because it is too hot in the room or do they feel uncomfortable in what they are wearing, do they think they are in their own bedroom? There is likely to be a reason which explains why they are doing what they are doing – usually it is that their brain, due to the damage, is misinterpreting the situation, i.e. the cells are not quite connecting properly.

Understanding the Temporal Lobes

This part of the brain is involved in using and storing our memories. Damage to this area of the brain can cause the person with a dementia to have difficulty with their short-term memory. This means they cannot remember things that have happened recently. Over time, as the dementia progresses, older memories of long ago may also fade.

Memories – Our Filing Cabinet

Think of memory as a filing cabinet. In the top drawer recent memories are stored, i.e. 10 minutes ago, half an hour ago, today, this week. The further you go down the filing cabinet the older the memories are, i.e. the 3rd drawer

down stores memories 10 to 20 years ago, whilst the 4th drawer down stores memories of long ago, i.e. 30,40 or 50 years ago.

For people with a dementia it is usually the top filing cabinet that is damaged first. So a person with a dementia may have trouble storing or retrieving recent memories.

However, in a dementia, often the memories in the lower drawers of the filing cabinet have not yet been damaged. This means that a person with a dementia can remember when they were younger, but they can’t remember what happened recently, minutes or hours ago. It can be hard work as a care worker when a person with a dementia asks the same thing again and again. The person with a dementia is not doing it deliberately. They have nowhere to store any new memories, i.e. the first drawer of their brain has been damaged. Eventually this damage will continue further into the brain and the lower drawers will also get damaged and memories will become difficult to recall from longer ago.

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The ways in which changes to the brain affect daily life

If you had dementia, your world would change because of the damage to your brain. The world you would live in would be one where every minute of every day you would feel tested.

Among other things your damaged memory would be tested to try and remember:

□ Where you are □ Where your family are □ The names and faces around you □ Where you live □ What you were doing earlier on in the day □ What you are meant to be doing right now

Your damaged language would be tested as you tried to:

□ Talk to people around you but failed to find the words (Expressive Aphasia)

□ Remember the names for certain objects

□ Understand what other people were trying to tell you (Receptive Aphasia)

No wonder people with a dementia are exhausted by the end of the day, after experiencing a world where they are being continually tested by their brain, which just won’t quite work right.

This is why it is important that you and your colleagues do not test a person with a dementia further. People with a dementia can feel tested further if they are continually asked questions which make them draw upon their damaged memory, such as:

□ What day is it? □ How old are you? □ Or are asked questions that start with ‘Do you remember’?

Try to lessen the amount of times you ask people with a dementia questions they find difficult.

Activity 60a and Activity 60b in your Activities and Self-Assessment

Workbook relates to the section above

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4.2 How Dementia affects Family and Friends

For many families, the experience of a dementia can be a shattering one. Imagine how it would feel if your partner who you had lived with for many years, who you had built a home and a family with, no longer recognised you. Imagine how it would feel caring for a mother or father who did not know you and even who suggested you were an impostor, because of their brain damage.

You may have cared for a family member with a dementia yourself and experienced these painful events – if so, this will help you in your work to understand other families.

Families may experience a roller coaster of emotions including:

□ Grief and loss

□ Guilt

□ Fear

□ Anger

Ways of emotionally dealing with a dementia

Families ways of dealing with the experience of a dementia and the feelings it brings will differ from person to person. Some families may:

□ Ignore that there is anything wrong with the person with a dementia

□ No longer visit the person with a dementia because it is too difficult to think about

□ Become angry at care workers because the family believe that they should be making the person with a dementia better

□ Giving support can be demanding and stressful

□ Guilt feelings

□ Feeling burdened

□ Can lead to family conflict

□ Caregiver can feel lonely and isolated

□ The person with dementia and the carer both need support

Activity 61 in your Activities and Self-Assessment Workbook relates to

the section above

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Learning Outcome 5

The learner will:

Understand how dementia may be managed and know some of the resources available to support the individual experiencing it.

The learner can:

5.1 Describe possible interventions for dementia

5.2 Describe ways in which family and friends can help the individual with

dementia to manage their illness

5.3 Describe the local resources and treatments that would be available to an individual experiencing dementia

5.1 Managing Dementia

Initially a person will require referral to a psychiatrist or a community health team for assessment. Other interventions may include:

Medication

A group of drugs have been developed which can help people with a dementia. These are known as the anti dementia drugs. They include:

□ Aricept

□ Exelon

□ Reminyl

In people with a dementia, the chemicals that help the brain cells communicate with one another become reduced. Over time it becomes more and more difficult for the brain cells that are not yet damaged to communicate with one another. When these cells cannot communicate, it becomes difficult for the brain to pass information on regarding the person’s environment, mind and body.

These three drugs work by increasing the amount of chemicals in the brain cells. This makes it easier for the brain cells to communicate with one another.

Another type of drug that may also help people with a dementia is called Ebixa.

When a person’s brain cells are damaged by a dementia, another type of chemical is released in the brain called Glutamate. This chemical damages the brain cells even further. The drug Ebixa protects the brain cells by not allowing Glutamate to be released.

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However, these drugs are not a cure, but they can help some people for varying amounts of time by reducing the symptoms.

Support of Care Professionals

□ Contact with a Community Psychiatric Nurse who can assess, plan,

implement and evaluate care and liaise with other care professionals who can support the individual

□ Occupational Therapist – assesses and plans meaningful

occupation and activities with, and for the individual

□ Social Worker – support the individual to access services and

benefits and accommodation – completes a needs assessment

□ Support Worker – provides practical support for the individual and

their family in the home

If symptoms worsen residential or nursing care may be required.

5.2 The Role of family and Friends

The family play a huge role in supporting the person with a dementia, so it is essential that they, themselves, are supported and have access to services and benefits. The range of support the family member(s) or friends provide, include:

□ Meetings the physical needs of the person with dementia living

at home e.g.:

- Help with housework - Assisting the person in/out of bed - Washing/bathing - Toileting - Encouraging diet and fluids – may involve physically assisting the

person to eat

□ Psychological support

- Reassurance and comfort - Love - Affection and companionship - Links with history and identify – knowing the person

□ Financial support and dealing with the individual’s affairs when they are

no longer able

□ Representing the individual’s needs, wishes and rights

□ Maintaining independence – allow the person to do what they are able for themselves

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5.3 Possible Treatments/Interventions

The first steps are detection and recognition of dementia and referral to a specialist.

□ Recent development of drugs to treat Alzheimer’s disease may

stabilise the symptoms for a limited period of time

□ Vascular Dementia may be treated with drugs to control blood pressure

□ Healthcare interventions for physical aspects e.g. personal care;

pressure sore prevention; treating of physical disorders, disabilities, illnesses and diseases

□ Psychological interventions

- In the early stage – Cognitive Behavioural Therapy – is a

psychotherapy that aims to influence problem behaviours, emotions and cognition (knowing or acquiring knowledge) by a goal orientated approach. This therapy involves life review and strategies to improve memory

- Moderate Stage – group activities; cognitive behaviour therapy;

music, arts and crafts

- Late Stage – psychological interventions – listening, supporting; improving wellbeing; person centred care; holistic care

Local Resources and Services

□ Care Homes

□ Hospital

□ Domiciliary Care

□ Respite and Day Care Services

□ Sheltered Accommodation and Supported Housing

□ Voluntary and Charitable Organisations e.g. Alzheimer’s Society, Mental Health Foundation, Age Concern, Anchor Trust, MIND

Activity 62a and Activity 62b in your Activities and Self-Assessment

Workbook relates to the section above

Activity 63 in your Activities and Self-Assessment Workbook relates to

the section above

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Learning Outcome 6

The learner will:

Understand factors – including own actions – which may adversely affect a person with dementia

The learner can:

6.1 Describe why a person with dementia may be adversely affected by

unconsidered actions or words of the carer

6.1 Factors leading to adverse behaviour

Feelings are relatively unaffected in dementia so that a person will experience the same kind of feelings we do. However, they will probably not be able to identify all the factors which have given rise to these feelings.

Ill-considered words or actions may upset a person with dementia and lead to agitated, withdrawn or aggressive behaviour.

Actions may include:

□ Pointing out mistakes – a person with dementia will believe they are

correct and may feel humiliated or angry if they are told they have done something wrong

□ Unhelpful words such as:

- Shouldn’t - Don’t - Can’t

May make a person feel silly, childish or they have done something wrong.

Being occupied is one of the basic human needs which a person with a dementia will find difficult to meet without the help of another person.

Without us offering opportunities and helping people to be occupied they are likely to feel the following things:

□ Useless and worthless

□ Not valued

□ That nobody cares about them

This is because we learn as we grow up that one of the worst things in life is to be ignored. In an ideal world we all want to be loved, but even receiving attention for the wrong reasons is better than being ignored.

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At a very young age we learn it is when we do something, that we attract the attention of other people. It is not natural to spend all our days doing nothing.

Occupation refers to things which people do naturally throughout the day – often this occurs without the support of staff in people with a dementia. Occupation is often related to the job the person did when they were younger i.e. People with a dementia recreate and ‘do’ a small element of the job they did before i.e. a woman with a dementia who worked in a laundry may fold things up in the home. A man with a dementia who worked in a factory may be occupied in the home by sweeping things up.

Other Factors Leading to Adverse Behaviour

□ Physical Discomfort

□ Confusion

□ Fear of Loneliness

□ ‘Wandering’ – may be looking for somebody or something. It is important that a person with dementia is never restrained from ‘wandering’. Attempts must be made to meet their needs

Person-centred Care

Person-centred care was developed in the 1990’s by, among others, the late Professor Tom Kitwood, of the Bradford Dementia Group. (“Dementia reconsidered – the person comes first” Kitwood, 1997). His aim was to help us as care workers, to re-think our care of people with a dementia.

Person-centred care is a care approach which aims to help carers and care professionals to see, value and treat people with a dementia as individuals who have led, and are still leading their own unique life.

If you only think about the dementia rather than the person, then it is easy to forget that people with a dementia are all different, as we all are. None of us are the same – we all have had different experiences of life as we have grown, we all have different personalities, likes and dislikes.

Because all of us are so different, everyone’s experience of a dementia will also be different. Every one of us deals with events in our life differently and this applies to the way we deal with a dementia.

Therefore, it will help to think about the person first, i.e. their life history and what they enjoy, and the dementia second. If as a care worker you can look behind the condition and see the person, then this will help you to consider how you can help the person with a dementia.

Activity 64 in your Activities and Self-Assessment Workbook relates to

the section above

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The Five key elements

Professor Kitwood identified five key elements of person-centred care. Looking at these will help you consider the best way to support people with a dementia. (“Dementia reconsidered” Kitwood published by Open University 1997).

It is important that you think about a person with a dementia’s previous whole life and what was and still is important to them.

Biography – their past

Our lives are made up of events all of which shape the way we think and who we are. This will include our life history, what matters to us and how we are affected by past events:

Identify – who they are

□ What makes the person with a dementia who they are now?

□ What is individual about them?

Autonomy and Agency – being in control

For many people with a dementia if they have moved into a care home, they may have to experience a number of losses, i.e.

□ Of their home and finances

□ When they get up in the morning or go to bed and when they eat

Person-centred care involves you and other care workers thinking about giving control back to people with a dementia. This can be done in little ways, such as allowing the person control over when they get up in the morning, what they wear, what they eat, who they sit with and so on.

Communication and interaction – being involved

A person with a dementia needs to talk, to be listened to and to be involved with others. You should consider what the best way is to communicate with each person you support with a dementia.

Attachment – belonging

For people with a dementia the world they now live in can feel very unusual and strange. Imagine what it must feel like not to know where you are, or not even recognise those around you. Because of this, a person with a dementia’s need is increased, to find something or someone which can make them feel safe and secure.

New forms of Communication with people with a Dementia

As it becomes harder for people with a dementia to express themselves verbally, they will use other forms of communication more and more as the way of letting others know what they want and about how they are feeling.

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This is why it is important to look beyond your verbal communication towards developing forms of non-verbal communication so that you can ‘talk’ to people with a dementia using the individual’s language. Looking at non-verbal communication will also be valuable in helping you gain a new understanding of how people with a dementia are feeling.

These are all useful methods of showing the person with a dementia that you are listening and understanding their feelings and emotions.

Eye Contact

A person with a dementia will look more to your eyes to try and figure out how you are feeling and what you are asking rather than just listening to your words.

Body Language

People with a dementia will pick up a person’s feelings via their body language. For instance, if your body language is rigid then they will see that you are feeling uncomfortable.

Meaningful Touch

Touch is the first form of communication we experience and it can say so much about how a person is feeling. Think about how much you can tell about a person just from a handshake, a pat on the back or a cuddle.

Showing the Person

People often rely on verbal communication as a way of giving people with a dementia choice – for example you might ask a person “What would you like to wear?” or ‘‘What would you like for lunch?” However people with a dementia may struggle to respond as the question is too difficult and it is not clear what the choice is. It may help them to actually show them a choice of two meals just before they eat, or a choice of two items of clothing.

Much of the behaviour of a person with dementia is an attempt to communicate. If communication is person centred and takes account of their personality and history, that communication will be valuable and meaningful to them.

Now go to your Activities/Self-Assessment Workbook and answer the self-assessment questions for Unit 9. Following review with your tutor, you should then complete the activities for Unit 9

Activity 65a and Activity 65b in your Activities and Self-Assessment

Workbook relates to the section above