Dementia Awareness Information

Rates of dementia in the UK

Dementia is a global concern but it is most often seen in wealthier countries, where people are likely to live into very old age.

The Alzheimer’s Society (2015) reports there are over 850,000 people living with dementia in the UK today.

Of these, approximately, 42,000 are people with young onset dementia, which affects people under the age of 65. 

As a person’s age increases, so does the risk of them developing dementia.

It is estimated that the number of people living with dementia in the UK by 2025 will rise to over 1 million.

Rates of diagnosis are improving but many people with dementia are thought to still be undiagnosed.

It is important that an accurate diagnosis is made as early as possible so that people can receive the appropriate advice, support and treatment,  and can start planning for their future.

What is dementia?

Dementia is an umbrella term used to describe a range of progressive neurological disorders (conditions affecting the brain).

There are many different types of dementia, of which Alzheimer’s disease is the most common.

Regardless of which type is diagnosed, each person will experience their dementia in their own unique way.

The four most common types of dementia are:

¨Alzheimer’s disease

¨Vascular dementia

¨Frontotemporal

¨Dementia with Lewy bodies

What is Dementia?

progressive loss of cognitive abilities affecting;

¨reasoning,

¨communication and,

¨the ability to carry out routine activities associated with daily living.

The condition is likely to deteriorate over time and carries significant implications for everyone involved. However, careful advice can provide reassurance to families and carers enabling people to adapt their lifestyles to accommodate the changes that are taking place and ‘live well with dementia’.

 

Alzheimer’s disease

Around 60% of people diagnosed with dementia, will have Alzheimer’s disease, it is the most common form of dementia in the over 65 age group.

Although you can have Alzheimer’s disease under the age of 65 years old, it is comparatively rare.

Alzheimer’s Disease is a condition that gets progressively worse over time.

What causes Alzheimer’s disease?

In individuals with Alzheimer’s disease a bad protein develops in the brain causing damage to the brain cells and their connections.

 

Vascular dementia

Around 17% of people diagnosed with dementia will have vascular dementia. It is the second most common form of dementia in the over 65 age group.

Although you can have vascular dementia under the age of 65, it is comparatively rare.

What causes vascular dementia?

Vascular dementia is an umbrella term for a group of conditions caused by problems with blood circulation to the brain.

It is caused by small blood clots preventing oxygen reaching the brain tissue.

Damage to the blood supply can also be caused by blocked arteries or bursting of blood vessels in the brain.

Dementia with Lewy bodies

Around 15% of people diagnosed with dementia will have dementia with Lewy bodies; it is the third most common cause of dementia and is more common in people over the age of 65 years.

Dementia with Lewy bodies is a progressive condition where the symptoms will gradually get worse over time. The symptoms can be similar to those found in both Alzheimer’s disease and Parkinson’s disease.

What causes dementia with Lewy bodies?

People diagnosed with dementia with Lewy bodies have a build up of clumps and proteins in their nerve cells in their brain known as Lewy bodies. This damages the way the nerve cells work and communicate with each other.

Frontotemporal dementia

In people under the age of 65, frontotemporal dementia is the second most commonly diagnosed dementia but it is less common in the over 65 age group.

What causes frontotemporal dementia?

Frontotemporal dementia represents a group of conditions caused when nerve cells in the brain die and the nerve pathways are damaged in the frontal and temporal lobes of the brain.

The damage to the brain is linked to abnormally forming proteins that interfere with communication between brain cells.

Functions of The Brain

Frontal lobe –

  • Planning
  • Organising            
  • Learning tasks
  • Initiating and stopping
  • Regulating behaviour
  • Logic
  • Language
  • Personality

Occipital lobe –

Processing information about colour, shape and movement received from the eyes

Temporal lobe –

  • Learning new information
  • Recording and storing of verbal memory
  • Visual memory and attention

Causes of Dementia

No one single factor has been identified as a cause of Alzheimer’s

It can be caused by a combination of factors including;

  • Age
  • Genetic Inheritance
  • Environmental factors
  • Diet
  • Overall general health

The Common Core Principles

As part of the Governments initiative ‘Living well with dementia’, `Eight common core principles where developed in partnership with Skills for Care and Skills for Health.

These common core principles help to develop a workforce that responds confidently to the person with dementia. The principles enable health and social care settings to become ‘dementia friendly’, with a workforce who are confident in supporting dementia, whether in community, hospital or specialist settings.

  • Principle 1- Know the early signs of dementia.
  • Principle 2- Early diagnosis of dementia helps people receive information, support and treatment at the earliest possible stage.
  • Principle 3- Communicate sensitively to support meaningful interaction.

Common Core Principles

  • Principle 4- Promote independence and encourage activity.
  • Principle 5- Recognise the signs of distress resulting from confusion and respond by diffusing a person’s anxiety and supporting their understanding of the events they experience.
  • Principle 6 – Family members and other carers are valued, respected and supported just like those they care for and are helped to gain access to dementia care advice.
  • Principle 7- Managers need to take responsibility to ensure members of their team are trained and well supported to meet the needs of people with dementia.
  • Principle 8 – Work as part of a multi-agency team to support the person with dementia

Principle 1 – Know the early signs of dementia

What are the early signs of Dementia?

  • Loss or lapses of recent memory
  • Mood changes or uncharacteristic
  • Poor concentration
  • Problems communicating
  • Getting lost in familiar places
  • Making mistakes in a previously learned skill (e.g. cookery)
  • Problems telling the time or using money
  • Changes in sleep patterns and appetite
  • Personality changes
  • Visio-spatial perception issues (i.e. the brain not processing images as normal)

 

In later stages these signs will be more pronounced, and it can become more difficult for people to live well with dementia.

Know the early signs of dementia

  • Health and social care workers should understand these signs so they can identify if people they are caring for may have dementia and need adjustments to the care they receive. It is important that you understand that these signs are associated with dementia – but they can also be associated with other conditions that may need investigation.
  • Health and social care workers should understand that when people with dementia show challenging behaviour they are not being challenging on purpose, but that this is part of the condition (principle 5).
  • Think about the whole person when assessing for signs of dementia, taking into account their usual interests, behaviour and home support.

 

Symptoms of dementia can include

Cognitive ability, i.e. processing information –

People with dementia may have difficulty with time and place, for example, getting up in the middle of the night to go to work, even through they’re retired.

Their concentration could be affected.

There may be difficulty when choosing items and making decisions.

Some people with dementia get a sense of restlessness and prefer to keep moving than sit still; others may be reluctant to take part in activities they used to enjoy.

Symptoms of dementia can include

Communication –

  • People with dementia may repeat themselves often or have difficulty finding the right words.
  • Reading and writing might become challenging.
  • They might experience changes in personality and behaviour, mood swings, anxiety and depression. 
  • People with dementia can lose interest in seeing others socially.
  • Following and engaging in conversation can be difficult and tiring, and so a formerly outgoing person might become quieter and more introverted. Their self-confidence might be affected.

Symptoms of dementia can include

Memory problems – 

  • People with dementia might have problems retaining new information. They might get lost in previously familiar places and may struggle with names.
  • Staff might notice the person seems increasingly forgetful, misplacing things regularly. However, we all forget a name or face once in a while and this is nothing to worry about. If it happens on a frequent basis, it’s advisable to contact the GP who can check why this may be happening..
  • Dementia can be seen as a combination of one, or all of the symptoms. If someone is experiencing one or more of these symptoms, which have been occurring for a while and are progressively getting worse, then please arrange a visit to the GP. There are however, many other reasons someone might be experiencing confusion or memory problems.

 

Symptoms of dementia can include – Delirium

  • Any sudden deterioration or change in someone’s behaviour or functioning, is likely to be caused by an acute physical illness of their body or brain. If you notice a change to the person’s usual behaviour over the course of hours or days, this is known as a ‘Delirium’.
  • Symptoms can vary. They include visual hallucinations, agitation, restlessness, increased confusion, aggressiveness, change in walking or moving. Or the person may become unusually withdrawn, sleepy or quiet.
  • The main thing to look out for is a ‘sudden’ change in how they usually are. Causes can include infection, dehydration, underlying disease and constipation.
  • Delirium needs urgent medical attention, and it is seen as a medical emergency. It is a common condition, but must be treated in a timely way by treating

 

Principle 2 – Early diagnosis of dementia helps people receive information, support and treatment at the earliest possible stage

  • Early diagnosis ensures that every individual with initial signs of dementia is able to plan for their short, medium and long term health and well-being needs.
  • A medical diagnosis will help to rule out other conditions that may have similar symptoms to dementia.
  • It is important to remember that the diagnosis of dementia can have an effect on the person’s emotions.
  • A diagnosis can benefit the wider family and enable them to understand what is happening and how they can help.
  • A diagnosis helps get the best treatment, support and plans in place as soon as possible. This includes looking at finances, legal issues and making decisions for the present and the future.
  • Although there is no cure for dementia, medication and other interventions can be used to help manage the symptoms.

Principle 3 – Communicate sensitively to support meaningful interaction

What communication challenges can a person with dementia face?

  • Difficulty pronouncing or finding the right words
  • Problems following a conversation, especially in a noisy environment
  • Difficulty understanding humour or sarcasm
  • Difficulty recognising other people’s emotions or behaviours
  • Repetition due to reduced concentration or memory problems
  • Tiredness or ill health which may cause a fluctuation in concentration and communication abilities
  • Stress caused by trying to make sense of the environment, situations and other people

Communication

  • Often the small changes we make in our approach can make a big difference in avoiding communication difficulties or frustration, and can help build and maintain good relationships
  • A person with dementia might become more confused, restless and disorientated at certain times of the day. This could be the lead up to them becoming more distressed and upset.
  • It’s useful to notice these small changes in behaviour so you can intervene with activities and distraction techniques, which might stop their distress from escalating

Group activity – Identify some good communication tips?

You could try:

  • Stopping what you’re doing and focusing on the person
  • Limiting distractions
  • Saying their name when talking to them
  • Speaking slowly, clearly and in short sentences
  • Listening carefully with empathy and understanding
  • Maintaining appropriate eye contact
  • try not to finish a person’s sentence unless you are asked to do so Using gestures to act out what you’re saying e.g. miming drinking a cup of tea or putting on your shoes
  • Using simple and straightforward language
  • Avoiding too many open-ended questions
  • Avoiding offering too many choices

Communication tips

  • don’t give too much information or ask too many questions
  • remember that it takes time for people with dementia to take in a question – just wait, be patient.
  • You can use images, pictures, symbols or music to enhance communication and facilitate understanding
  • remember to monitor your tone of voice carefully
  • enjoy interacting together and use humour to communicate this pleasure.
  • You should make use of the person’s past experiences, culture and life story to support communicating with them. ƒ
  • Try to keep the environment calm and as quiet as possible when communicating
  • Take account of any hearing or visual problems or second language difficulties.

Good communication skills

  • Repetitive questions from people with dementia can be challenging—try to respond as though it is the first time you have heard the question.
  • Whatever is said to you, it is best to accept this and not argue.
  • Remember we communicate a lot through our body language, facial expressions, and tone of voice.
  • If we seem positive, cheerful and confident, we bring a sense of hope and reassurance to the conversation, and alternatively,
  • if we appear resentful or unhappy, we can bring a sense of gloom.

When words disguise needs-

When a person with dementia says…                  They may be expressing…

 

‘I want my mother.’                                              …a need for love and comfort, like that                                                                                           received from a mother or someone else with                                                                                            whom the person felt safe.

 

‘I’ve got to go to work.’                           …the need for a purpose and fulfilment of a person                                                                                who still wishes to have an impact on the                                                                                                           world around them

 

 

‘I want to go home.’                                             …a need for privacy, security and comfort.

 

When words disguise needs-

They are asking to go home when they are at home. Why?

They might be missing a sense of safety, security or familiarity.

What can we do?

Having a look at some familiar things could help, e.g. old photos or videos, or items around the home. Talk to them about their ‘home’ and give some reassurance.

They are feeling sad or angry and can’t explain why. Why?

  • It could be a sign of unidentified pain or something irritating them about their environment. What can we do?
  • Check the temperature of the room. Check for signs of bruising, redness, unusual swellings, or other conditions like arthritis, tooth ache or headache. Seek advice from a GP about pain relief. You could also validate the person’s feelings by saying, “You look sad about something”.

When words disguise needs-

They cannot find or use the right word for something. Why?

Difficulty finding a word might be a direct result of changes to the brain, specifically the temporal lobe. It could also be due to tiredness, distress or a noisy environment. What can we do?

Give the person plenty of time to reply and use pictures and notes if you can. Listen very carefully to the person and watch their body language. Reduce external distractions such as noise from the TV.

They look confused, like they don’t understand you. Why?

This could be due to a lower level of understanding, difficulty with concentrating or too many distractions. What can we do?

Be reassuring and gentle. Try saying or asking in a different way. Give the person time. If appropriate, use touch. Reduce external distractions.

When words disguise needs-

They become withdrawn or are not responding. Why?

  • This could be due to difficulty with understanding or an inability to express themselves due to language problems, temporal lobe damage, or possible depression. What can we do?
  • Face the person, and gain eye contact. Pace the conversation. Don’t give too much information or ask too many questions. Investigate whether depression could be an issue.
  • This could be due to difficulty with understanding or an inability to express themselves due to language problems, temporal lobe damage, or possible depression. What can we do?
  • Face the person, and gain eye contact. Pace the conversation. Don’t give too much information or ask too many questions. Investigate whether depression could be an issue.

The person living with dementia says: “What are you doing in my house? Who are you?” Why?

Loss of recognition of familiar people, faces, environment. This could be due to fear or memory changes. If this occurs suddenly it could be indicative of an infection or physical ill health. What can you do?

Try to understand the person’s reality. Remove yourself to another room for a few minutes and re-enter calmly and say something like, “Hello, I’m back now, lovely to see you

Principle 4 – Promote independence and encourage activity

  • It is important that people with dementia are encouraged to maintain the activities they enjoy and continue to be active. However, you should be sensitive to any activities that may cause frustration. What types of activities do you do here?
  • The care received by people who have dementia must take into account each person’s individual needs and preferences and be delivered with patience, dignity and respect at all times, that is, it must be person-centred. How can you ensure that the activities are person centred?
  • It is important to recognise when people with dementia become more dependent, and support this appropriately.

Promote independence and encourage activity

  • Always try and support people with dementia to self care including using the toilet for as long as possible.
  • Ensure that people with dementia have access to appropriate means of nutrition and hydration. This should be supported in line with individual care plans (if available) ƒ
  • Ensure that you support people with dementia in making their own choices, including what to eat and drink.
  • It is essential to presume a person has the capacity to make decisions for themselves unless it is proved otherwise. You should assess the person’s capacity to make decisions in accordance with the Mental Capacity Act.

Mental Capacity – What is meant by this?

Mental capacity is a term used to describe an individual’s ability to make their own decisions.

The Mental Capacity Act 2005

You must assume that individuals can make a decisions unless they are unable to do one or more of the following:

  • Understand information given to them
  • Retain information long enough to make the decision
  • Weigh up the information available
  • Communicate their decision.

There are five important principles
everyone must follow when using the act:

1.  Start off by thinking that the individual can make their own decision.

   2.  Give all practicable support to enable the person to make their own decision.

   3.  Never say someone can’t make a decision just because someone else thinks it’s                   wrong or bad.

   4.  When an individual can’t make their own decision someone has to make it in the                best way for them.

    5.      When someone makes a decision for an individual they must consider whether                   there is a less restrictive option. i.e. one that does not limit their rights or                               freedom  more than necessary.

Principle 5 – Recognise the signs of distress resulting from confusion and respond by diffusing a person’s anxiety and supporting their understanding of the events they experience

People with dementia can find that unfamiliar situations become very confusing and often they struggle with changes to their environment and routines. They may not perceive the environment or other people’s actions in the same way as we do. This may lead to uncharacteristic behaviour that is difficult to understand and manage.

 

Recognise the signs of distress resulting from confusion and respond by diffusing a person’s anxiety and supporting their understanding of the events they experience

Group Activity

  • What could cause challenging behaviour?
  • -misunderstanding their environment
  • -feeling frustrated at being unable to understand others or make themselves understood
  • -feeling frightened
  • -responding to what they feel to be over-controlling care
  • -past history and experiences
  • -being in pain, including chronic pain
  • -your or others’ responses to their actions.

Behaviour – What might they be trying to communicate?

  • Hitting out in an angry way
  • Walking around all the time
  • Not co-operating when being helped with caring tasks
  • Constantly repeating the same thing
  • Shouting out loudly
  • Putting things in places where they cannot be found

How can we help?

Look at what else is happening when a person is behaving in a certain way

Look for the emotion that the person may be feeling

Recognise the signs of distress resulting from confusion and respond by diffusing a person’s anxiety and supporting their understanding of the events they experience

  • Be aware that challenging behaviour can be managed and supported in a variety of different ways, not just through medication.
  • You should be able to support people with dementia in a person-centred way which should help you identify any triggers that cause their challenging behaviour.
  • Always consider whether there is an unmet need that is causing the challenging behaviour.
  • Try to remember that all behaviour is a reaction to a feeling—try to understand why someone may feel the way they do.

When a person is distressed

  • Stay calm: Try to show you are relaxed.
  • If speech is hard to understand, think about what the person might be trying to say.
  • Pick up clues from a person’s body language about how they are feeling.
  • Allow the person to express sad / angry emotions.
  • work out what triggers the aggressive behaviour and tackle the triggers
  • be creative in finding alternative activities to help an individual move on from feelings of anxiety.

As their dementia progresses, people may be less able to enter our world – we may need to enter theirs and enjoy it with them” as campaigner Barbara Pointon puts it.

Principle 6 Family members and other carers are valued, respected and supported just like those they care for and are helped to gain access to dementia care advice.

  • Understand that dementia is also distressing for the main carer and families. ƒ
  • You should be able to encourage family and friends to participate in shared activities with the person with dementia.
  • It is essential to respect the choices made by family and friends. ƒ
  • Signposting people to information to help them understand the impact of dementia or to refer them to colleagues/other sources of advice who can help them with this.

Principle 7 Managers need to take responsibility to ensure members of their team are trained and well supported to meet the needs of people with dementia

  • Managers working in health and social care have a responsibility to ensure their teams are adequately trained and supported to be able to meet the needs of people with dementia.
  • Different members of the team may require different levels of support and training depending on their specific job role, the nature of their work and the support needs of the people they are working with.
  • Managers should encourage staff to see the person and not the condition.

Principle 8 Work as part of a multi-agency team to support the person with dementia

Why is this important?

  • Care provided should be designed specifically for the person affected with all practitioners liaising together to support personalised care.
  • Many practitioners will contribute to the care of a person with dementia over the course of the condition
  • Coordinated support must include sharing of relevant information (when appropriate) with other practitioners.
  • Aim to have a seamless approach between different teams and agencies to support people with dementia.

 

Compliance Training are loving this!!! Dementia care is at its best

Dementia UK

We’re pleased to see that the use of therapy dolls has been such a success at Camelot House and Lodge in Somerset. Read more: https://www.carehomeprofessional.com/dementia-therapy-doll…/
And find out more about the use of dolls in dementia care on our website: https://www.dementiauk.org/…/complementary-th…/doll-therapy/ #dementiacare

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