Briefing 250

May 2019

Understanding Dementia and Communicating Effectively to Maximise Involvement

Introduction

Under the Care Act 2014 adult social care practitioners working with a person who has Dementia must:

  1. Possess the skills, knowledge and competence to work with that person; and
  2. Maximise the involvement of the person in care and support processes and decision making.

This briefing will support practitioners to understand:

  1. The different types of Dementia;
  2. The impact of Dementia on independence, behaviour and emotions; and
  3. Steps that can be taken to communicate more effectively to maximise involvement in care and support processes.

The Different Types of Dementia

Dementia is a complex syndrome (a group of related symptoms) associated with an ongoing decline of the brain and its abilities, which diminishes the ability of the person to do everyday tasks over time.

Common symptoms of most Dementia include:

  1. Loss of memory;
  2. Difficulty in understanding people and finding the right words;
  3. Difficulty in completing simple tasks and solving minor problems; and
  4. Mood changes and difficulties managing emotional responses.

Symptoms typically worsen as the condition progresses to more areas of the brain, and in later stages of Dementia a person may experience significant difficulties with all bodily functions including mobility, swallowing, continence and speech.

There are different types of Dementia that can be diagnosed, depending on the cause. The table below sets out the most common:

Alzheimer’s Disease Alzheimer’s disease is thought to affect around 520,000 people in the UK. During the course of the disease, the chemistry and structure of the brain changes gradually over time, leading to the death of more and more brain cells. Associated symptoms get progressively worse. There is no cure for Alzheimer’s disease although symptoms in the earlier stages can sometimes be managed with medication to delay the progression of the condition.
Vascular Dementia Vascular Dementia is the second most common type of Dementia with around 150,000 people affected. Vascular Dementia occurs when the brain cells die because they have been starved of oxygen. This can be following a Stroke but can also be caused by a blood clot or a disease of the blood vessels in the brain. Unlike Alzheimer’s Disease, Vascular Dementia symptoms suddenly worsen each time the brain is starved of oxygen and, depending on the area of the brain affected the symptoms can be localised to the functions that particular area of the brain controls.
Dementia with Lewy Bodies Lewy Bodies are small deposits of protein that appear in nerve cells in the brain, causing the Dementia. Lewy Bodies are also associated with Parkinson’s Disease and people with Lewy Body Dementia may experience the symptoms of both conditions depending on whereabouts in the brain the Lewy Bodies are deposited. Hallucinations, delusions and sleep problems are more common in people with Lewy Body Dementia than with other types of Dementia.

Frontotemporal Dementia

Frontotemporal Dementia (also known as Picks Disease) is a less common type of Dementia. It occurs when the damage to the brain cells occurs only in the frontal lobes of the brain, found behind the forehead. This part of the brain deals with behaviour, problem-solving, planning and the control of emotions. An area of usually the left frontal lobe also controls speech. Unlike other types of Dementia, memory is not normally affected.

Mental Capacity 

It is important not to make assumptions about mental capacity. In the early stages of Dementia people are often able to, either independently or with support:

  1. Be involved in care and support processes; and
  2. Provide an insight into their needs; and
  3. Make decisions about care or treatment; and
  4. Decide how best to manage risk; and
  5. Set their own goals and outcomes.

If in any doubt a mental capacity assessment must be completed before making a judgement about their ability to engage or make decisions about their care and support. 

The impact of Dementia on Independence, Behaviour and Emotions 

Independence

A person with Dementia will find it harder to carry out activities of daily living as their condition progresses (for example personal care routines, cooking, socialising and taking medication). 

This can happen for a range of reasons, including:

  1. Forgetting how to carry out some/all of the task;
  2. Forgetting that the task needs to be carried out;
  3. Losing the skills required to carry out the task adequately or safely; and
  4. Losing the ability to maintain focus when completing the task.

The loss of independence can have a direct impact on the person’s safety, but also on their mood and mental health, for example by causing anxiety, confusion, anger, frustration, fear, isolation and withdrawal.

Interventions that promote independence should always be considered, and should be provided in a timely way to ensure the greatest positive effect.

Behaviour and Emotions

Depending on the type of Dementia, as the person’s condition progresses it is likely that they will experience changes to their mood or behaviour. Examples include:

  1. Increased confusion;
  2. Periods of distress;
  3. Periods of joy;
  4. Fear and anxiety;
  5. Frustration and anger;
  6. Physical aggression towards self and others;
  7. Suspicion and paranoia;
  8. Isolating behaviour;
  9. Loss of inhibition;
  10. ‘Wandering’.

Some of these changes will be physiological, meaning they are a symptom of their condition as it progresses. However, many will be related to one or more of the following:

  1. A loss of independence, choice and control;
  2. A loss of physical and cognitive ability;
  3. A lack of stimulation or increased boredom;
  4. A lack of verbal communication; and
  5. Misinterpretation of the communication and actions of others.

These difficulties can often be managed or improved by making positive changes to the person’s environment or nature of support and where relevant a referral to a communication or behaviour specialist should always be considered and made. 

Effective Communication to Maximise Involvement

Depending on the person’s unique needs, the table below sets out some general rules to support effective communication when a person has Dementia.

 Rule A person with Dementia can....  Do's  Don'ts 

Meet and greet

Forget names and faces

Misplace the context of a face

Introduce yourself, your role and the purpose of your visit each time Expect the person to have remembered you
Getting to know you

Feel socially uneasy

Find it difficult to start a conversation

Spend time ‘getting to know’ the person at each visit, by inviting them to talk about something that interests them

Go straight into the formal purpose of the visit

Help me feel at ease

Become anxious, confused, angry, scared or upset by the actions of others

Sit where the person can see you, do not stand over them, do not appear from behind 

Use a calm tone, smile, use positive body language and be friendly

Use authoritative body language or verbal tone
Value, Respect and Dignity

Easily feel isolated, ashamed, worthless and devalued by the actions of others

Speak to the person, not a family member of carer 

Speak to the person as an adult 

Seek their views and listen to what they have to say, even if it doesn’t appear to make sense

Talk over the person, ignore them or whisper to others
Gain my attention

Not realise you are talking to them unless you are explicit

Routinely use the person’s name and wait for recognition before speaking to them

Provide information to the room if it is meant for the person

Avoid distractions

Find it difficult to focus when there are a lot of things happening around them

Keep distraction to the minimum from TV, radio and other people in the room

Proceed regardless of any distraction

Help me understand

Find it hard to understand the meaning and context of communication 

Misinterpret information

Use uncomplicated language and break things down 

Explore alternative communication, e.g. pictures and objects of reference 

Give time to process information

Use inaccessible formats to provide information

Help me remember Find it hard to retain new information

Summarise key information 

Be prepared to say something more than once or answer the same question several times

Expect the person to retain information without support

Sometimes words are not enough

Struggle to find the right words 

Forget what they want to say

Be reassuring 

Offer helpful alternatives-would it be easier to show me? 

Explore alternative communication, e.g. pictures and objects of reference

Assume to know what the person wants to say

Assume a lack of capacity

Work in the here and now

Sometimes find it hard to understand the concept of the ‘future’, anticipate future needs and advance plan

Set timeframes to achieve outcomes that are meaningful to the person  
Manage my anxiety

Become overwhelmed by information, and this can lead to changes in mood, behaviour and engagement

Rephrase something 

Take a break 

Change the environment or go for a walk 

Change the subject for a while 

Exclude the person from the conversation
Don't challenge my reality

Have a false perception of reality that is very real to them

Accept the person’s reality 

Use the information to inform the assessment 

Consider assessing mental capacity

Correct or challenge them as this can cause confusion, anger and anxiety and serves no purpose

Further Information

Further information can also be found on the Alzheimer’s Society website using the following link https://www.alzheimers.org.uk/. From there you will be able to download the booklet ‘Ask Us Anything’, which gives additional tips and advice for talking to someone with Dementia.

If you are an existing tri.x Adult Social Care customer you will be able to access further information in the Dementia Practice Guidance located in the tri.x Resources area of your procedures manual.

Contact us to find out about how tri.x can help your organisation

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