This workbook contains information to gain knowledge about dementia. It is the first of a series of workbooks which are non-accredited resources available free to support those that work with people who have dementia.
You can demonstrate your learning by completing the exercises within the workbook and the short quiz at the end. This will provide evidence to your manager of your learning.
Click on the section headings below to reveal the contents of each section of the workbook.
Printable version
Bitesize learning
This workbook is supported by the following PowerPoint presentations:
- Describing Dementia (MS PowerPoint 960KB)
- Person Centred Approaches (MS PowerPoint 844KB)
Learning outcomes
By completing this workbook you will:
- Be able to describe dementia
- Know the different symptoms of dementia
- Gain awareness of person centred approaches
- Understand changes that can happen through the dementia journey
- Be able to consider the affect dementia has on a person’s feelings and emotions
- Know there are different types of dementia
- Know the differences between dementia, depression and delirium
- Describing Dementia (MS PowerPoint 960KB)
- Person Centred Approaches (MS PowerPoint 844KB)
There are links within the workbook which direct you to other resources available to build on the knowledge given.
You can demonstrate your learning by completing the exercises within the workbook and the short quiz at the end. This will provide evidence to your manager of your learning.
Within the workbook, there are small exercises to help you to link your learning directly to your job.
Please be aware of confidentiality issues and use initials only when describing people with dementia.
The information is linked to the Qualifications and Credit Framework, learning outcomes for dementia, Knowledge and Skills Framework (KSF) and Common Induction Standard 7.
Qualification and Credit Framework: Level 2 Award: Awareness of Dementia
- DEM 201 Dementia Awareness
- 1.1 Explain what is meant by the term ‘dementia’
- 1.3 Explain why depression, delirium and age related memory impairment may be mistaken for dementia
- 2.3 Explain why dementia should be viewed as a disability
- 3.1 List the most common causes of dementia
- 3.2 Describe the likely signs and symptoms of the most common causes of dementia
- 3.4 Identify prevalence rates for different types of dementia
Knowledge and Skills Framework
- C1 Communication a b, C2 Personal Development c d, , C5 Quality f, C6 Equality/Diversity a b d
- HWB1: Promotion of health and well being: a,
- HWB3:Protection of health and well being: a b
Common Induction Standards
7.1.2, 7.2.1, 7.2.2, 7.3.1, 7.3.2, 7.3.3, 7.4.1, 7.6.1, 7.6.2, 7.6.3, 7.6.4
Myth: ‘Dementia means you will become incapable of living life with any meaning’.
This workbook begins by outlining some of the medical aspects of dementia in order to describe the effects and changes that take place. The challenge is to gain understanding that these changes do not prevent a person from continuing to live life to the full as we all hope to do, having both good, and not so good days, in our moment to moment experience of life.
‘Dementia’ is a term used to describe a group of symptoms. The main symptoms are:
Myth: Dementia is when a person just loses their memory
One of the important things to recognise about dementia is that it is more than just difficulties with memory.
The diagram above shows how a person with dementia can have difficulties in a number of areas and all these affect each other, causing confusion and difficulty with everyday living.
Dementia can be described as a person having a range of disabilities which can be more difficult to recognise than physical disabilities.
Because of these disabilities a person’s ability to function in their usual way is affected as well as the ability to make decisions and judgements.
Here are some of the more common diseases that cause dementia:
Common diseases that cause dementia
(Source – Social Care Institute for Excellence 2009)
The term ‘Mixed’ is used when dementia has more than one cause. For example a person may have both Alzheimer’s disease and Vascular dementia.
Other less common causes of dementia are:
- Huntington’s disease
- Creutzfeldt-Jakob Disease (CJD)
- AIDS related dementia
- Korsakoffs Syndrome
People with learning disabilities have a higher risk of developing dementia.
Task 1: Find out about one of the types of dementia and record what you have learnt in your notebook.There are many places you can find this information. The Alzheimer’s Society produces factsheets, which cover a wide range of dementia-related topics. These are freely available on the Alzheimer’s Society website at www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137
- tests, for example the Mini Mental State Examination
- scans, for example a CT Scan (computerized axial tomography)
- personal history from person and the person’s relatives
Diagnosing the type is important because:
- It gives an opportunity to take medication which might help. There are some dementia medications which may slow down the course of Alzheimer’s disease. Currently these are Aricept, Exelon and Reminyl and they all work in a similar way.
- It can help a person have an awareness of the likely progression of the disease
- A person can have greater awareness of what their diagnosis means to them
- Where the dementia has a genetic component this information could be helpful to other family members
Support networks
Whatever type of dementia the person has it is important for a person to be given a diagnosis to provide an opportunity to:
- Plan for the future:
- Recording advance statements and/or advance decisions (where the person with dementia sets out how they want to be cared for in the future, what should happen to their finances and other personal requirements for when they may be too ill to make an informed decision).
- Making Lasting Powers of Attorney for finance or welfare.
- Find out what is available to build support networks and relationships for the person and the person’s family. This may include:
- Local groups such as ‘singing for the brain’
- Education opportunities about dementia.
- Access appropriate care and treatment, including social services support and relevant benefits where appropriate.
Awareness – a person may begin to notice problems, for example, forgetting things. Other people might notice the person not managing their life in the usual way.
Assessment / diagnosis – a person may start to struggle with everyday living, needing prompts and reminders. As it becomes more obvious that the person is having difficulties this leads to assessment and a diagnosis. Getting a diagnosis can be difficult and it is estimated that currently only a third of people get a diagnosis (Source: Alzheimer’s Society). A person’s General Practitioner, and local memory assessment services should ensure people are screened, assessed and diagnosed.
Living with dementia
Living with dementia – a person will need increasing ongoing support in a number of areas around everyday living. But focussing on a person’s strengths and wellbeing is important throughout the course of the illness to help them live well.
It is also essential to provide support, guidance and education about dementia to the carers who are living with the person.
End of life care – keeping a person comfortable and pain free is the focus of care at end of life.
Making decisions about the care and treatment for the person with dementia needs to take into account the person’s best interests in consultation with the carers/family. Where a person has completed any form of advance care planning this can help decision-making.
Using pain assessment tools can be helpful in determining appropriate pain management.
Lifetime memories
A person with dementia has difficulties with their memory so that:
- it becomes hard to remember what has happened recently
- it becomes difficult to learn new things, and
- memories from the past can become more ‘real’ as difficulties increase.
Throughout a person’s lifetime memories are built up so the person with dementia has a wealth of memories and information. However with dementia organising and accessing memories and information becomes increasingly difficult, affecting ability to manage everyday life in the usual way.
Thinking difficulties can lead to the following:
- it becomes hard to work out how to do everyday tasks
- it becomes hard to concentrate and focus on tasks, and
- losing track when undertaking a task with multiple stages.
Each person with dementia will respond to the difficulties they experience in an individual way due to everyone having different personalities.
For some people having a range of difficulties in memory and thinking can result in them feeling:
- Frustrated
- Angry
- Upset
- Distressed
- Alone
- Frightened
Recognising the feelings of the person with dementia and identifying what might be triggering these feelings will be helpful when working out how the person then responds.
For example, Joe was trying to do up the buttons on his shirt and he could not do this easily due to the difficulty in co-ordinating and working out how to sequence the task. This led to the feeling of being frustrated.
In your notebook write down the difficulty the person was experiencing and try to identify the feelings that have arisen from this difficulty.
Responding to emotional distress, expressions of anger and excessive walking.
Sometimes feelings and emotions can cause people with dementia to behave in ways that are unusual to them and are a result of the dementia. These behaviours can sometimes challenge others to understand what the person is communicating. For example,
- hitting out in an angry way
- walking around all the time
- difficulty in self monitoring behaviour with others
- not co-operating when being helped with caring tasks
- constantly repeating the same thing
- shouting out loudly, and
- putting things in places where they cannot be found.
Devon Partnership NHS Trust and Torbay Care Trust have produced a series of video clips on YouTube, which are helpful in understanding more about behaviours that challenge us.
There are a number of factors that need to be considered when supporting people with dementia.
It’s important to focus on the person rather than the illness.
Rather than seeing dementia as the focus it is important to see and focus on the person.
Each person with dementia will change and react to their difficulties in a different way.
It is very helpful to know about a person. This will help to think about what the person could be experiencing.
Finding out all about a person’s life is very important.
Consider different sources for the information, talk with the person with dementia as well as family and friends. Remember to protect personal information and confidentially, use initials not full names. In your notebook list something new that you have learnt about the person you are describing which you found interesting.
Where possible try to
- involve the person with dementia in making decisions about everyday matters
- make time to listen to the person
- show kindness and be reassuring, and
- respect the person at all times.
Try not to
- appear cross with the person
- argue with the person, and
- ignore the person
Verbal communication
- speak in a calm way; notice the tone of your voice
- use short sentences giving a small amount of information
- give time for the person to respond or answer, and
- don’t argue about facts or try to ‘correct’ the person.
Non-verbal communication
- move to the person’s level
- maintain eye contact where possible, and
- use gestures, objects or signals as well as words; for example show the person an object that relates to what you are saying.
Remember
- you are very important to the person with dementia
- you make a big difference to how the person copes with the difficulties of having dementia, and
- people who struggle to communicate verbally may be more sensitive to body language and may respond differently.
Delirium – sometimes called ‘toxic confusional state’
A person who has delirium can often show similar symptoms to a person who has dementia.
Delirium often develops quickly and is usually reversible.
What happens:
- hallucinations and delusions are often present and come on quickly. They might hear, see or think things which are not ‘real’.
- thinking and reasoning are usually affected significantly, and
- severe confusion is often present.
Possible causes:
- anaemia
- low blood sugar, hormone imbalance
- diarrhoea / constipation
- intolerance to medication
- infection: chest infection/ urinary tract infection
- recent major operation
- dehydration, and
- pain.
It is important to point out that dementia and delirium can occur together.
In your notebook write down what happened and what was the cause.
Depression
A person who is depressed can often show similar symptoms to a person who has dementia.
This is because depression effects:
- concentration
- motivation, and
- ability to manage everyday tasks.
Myth: A person with dementia does not get depressed
Important note: A person may have dementia and also have delirium and /or depression.
Treatment options need to be explored for depression and delirium.
- Download the quiz (MS Word 40KB)
- Download the quiz answers (MS Word 40KB)
1. Delirium is a form of dementia
TRUE
FALSE
2. Which of the following is a clear definition of dementia?
a) Losing your memory
b) Difficulties with memory, thinking. doing and communicating
c) A form of mental illness in old age
d) A toxic confusional state
3. Which of the following is NOT a type of dementia?
a) Alzheimer’s Disease
b) Creutzfeldt-Jakob Disease
c) Lewy Body Dementia
d) Chronic fatigue syndrome
4. Which of the following would NOT be useful in diagnosing dementia?
a) Mini Mental State Examination
b) CT Scan
c) Endoscopy
d) Personal History
5. Dementia is a normal consequence of ageing
TRUE
FALSE
6. When a person with dementia appears unable to co-operate with care tasks which of the following is NOT likely to be a cause?
a) The person is feeling frustrated
b) The person is feeling frightened
c) The person is being awkward
d) The person is feeling upset
7. When supporting a person with dementia, which of the following are helpful?
a) Allow the person time to respond.
b) Don’t argue about facts
c) Use gestures, objects or signals as well as words e.g. show the person an object that relates to what you are saying.
d) All of the above
8. There are dementia medications which may slow the course of Alzheimer’s disease
TRUE
FALSE
9. Name some feelings that a person who has dementia may experience
10. Causes of confusion include:
a) Delirium
b) Depression
c) Dementia
d) Eczema
Thank you for completing this workbook.
Dementia gateway
The dementia e-learning programme, produced by the Social Care Institute for Excellence, is suitable for care staff and family carers. SCIE’s dementia gateway provides practical tips, tools and activities that will help you with your daily work.
This workbook has been based on the Dementia Training & Education Strategy model and resources for Gloucestershire, and adapted by the South West Development Centre on behalf of the South West Dementia Partnership for wider dissemination and sharing.
Written by Tina Kukstas, Dementia Training Solutions, supported by an Advisory group:
- Diane Bardsley, South West Development Centre,
- Jan Ellis, Gloucestershire Primary Care Trust,
- Rebecca Hardwick, South West Development Centre.
This process has taken place in consultation with the Regional Dementia Workforce network with comments from:
- Paul O’Shea, Plymouth PCT
- Nick Thorne, South Gloucestershire Council
- Diane Johnson, Dorset HealthCare University NHS Foundation Trust
- Mary Dart, Devon County Council
- Sue Ives, PHNSHT
- Karen Grimshaw, Plymouth Hospitals NHS Trust
- Jane Rachael, Capita L&D
- Paul Hopkins, STAR Team Bristol
- Lindsey Pike, Cornwall Council
- Mark Humphries, Dorset PCT
- Nic White, Plymouth NHS
- Belinda Lock, Devon County Council
- Jet O’Neill, North Bristol NHS Trust
- Elizabeth Bartlett
Grateful thanks to all involved for their inspiration and enthusiasm.