Effective Communication with People Living with Dementia – The Two Way Street

Imagine how isolating, problematic and exasperating it must feel to be incapable of communicating verbally any longer, when throughout a lifetime of experiences, you have always used this basic skill to interact with others. Envisage also, when those you are attempting to interact with, cannot understand you because of their reliance on the verbal aspect of communication.

Communication is the glue that holds much of human life together and a central stimulus within the individual life cycle of us all. Through the ongoing development of, and the means we utilise to communicate, most human cultures have the ability to interchange information, concepts, mood and sensations.

Developing the ability to communicate effectively with other persons is one of the most crucial aspects within our life evolution, as we often define ourselves based on how we develop our relationships with others throughout this time.

Functional decline in older people can influence communication when related to sensory aptitude and often, unavoidably, as a consequence of old age, this generates impaired hearing and sight. This regrettably and frequently creates communication difficulties.

Similarly, aphasia may occur, as a pathological result of cerebrovascular accident, (CVA), acquired brain injury, (ABI), acute delirium and/or a cognitive deficit related to dementia. Therefore directly affecting the language centre of the brain and the ability to verbally connect.

People living with dementia often strive to communicate effectively, and this ongoing struggle, at times, may be directly related to the relentless and divergent aspects of living with a condition where verbal interaction inevitably becomes extremely difficult.

Areas that may be considered as impeding communication may include the type of dementia, the progressive stage of cognitive decline, comprehension, insight and judgement, the likelihood of a lowered stress threshold, and/or impaired memory.

Deterioration in verbal communication can be one of the most challenging characteristics of the condition for people living with dementia, and they may experience reduced vocabulary, word finding difficulty, reasoning issues, thought repetition, impaired comprehension, reduced coherence, and may be easiily distracted.

Thus communicating successfully may be at times, enormously difficult.

It could be theorised that the inability to communicate, sometimes, may negatively create situations for people living with dementia, affecting feelings of self worth, exacerbate behavioural expression, upset, embarassment, and frustration, as well as contribute to social isolation and withdrawal.

Subsequently, it seems apparent that one of the most infuriating features of living with dementia, may be the loss or deterioaration of the this ‘verbal’ communicating aspect. Not only for the person living with dementia, but also family and caregivers.

Feelings of alienation and loss of camaraderie my occur, and the person living with dementia may become isolated within their reality, hence live with a sense of lost identity.

It is unquestionably challenging to enter this territory of silent interaction. Our dependence on dialectal aspects and language is so solid and rigid, it takes great determination to fight it.

Some people living with dementia find that dementia conveys experiences and understandings that those of us without the condition cannot even imagine, and furthermore, there are most probably no specific ways for them to express this verbally.

Effective communication is vital in maintaining and reinforcing our personhood, thus the place we hold within the world.

What is Communication??

Communication is the transfer of information from a sender to a receiver.

When is communication successful???

When the information is understood by the receiver, in the way the sender intended it to.

Our perception interferes with effective communication because we all perceive things differently. The normal range of barriers, such as perception, effects the way we all communicate.

This interference with the message often results in a communication breakdown.

Communication breakdown often leads to conflict.

“People don’t get along because they fear each other.

People fear each other because they don’t know each other.

They don’t know each other because they have not properly communicated with each other.”

Martin Luther King.

Effective communication plays a crucial role in all caregiving, especially in the provision of care to persons living with dementia.

Knowing how to communicate with a person who lives with dementia can mean the difference between them feeling lonely and remote, or recognized.

As dementia and cognitive decline progresses, the person living with dementia may experience a gradual lessening of their ability to communicate, and thus this may create a situation where it may become difficult to express themselves clearly, and this in turn might isolate a person.

Isolation:

“The ego leaves quite early. I become what I have always been.
It allows me to become quite naughty.
I am unstoppable and unbiddable.
But they park people like me in a warehouse with other people like me, and it diminishes me. I believe more people die of depression and despair than of dementia.”

‘Larry Gardiner’, person living with dementia.

As much as 90% of our communication takes place through non-verbal communication:

•  Gestures
•  Tone
•  Facial expressions
•  Touch
•  Attitude
•  Sign language
•  Picture boards

Nonverbal communication is particularly important for a person living with dementia who is losing their language skills.

When a person living with dementia behaves in ways that can seem like they are causing difficulties, they are most likely trying to communicate.

Other than dementia, communication can be affected by:

•  Vision
•  Hearing
•  Dentures – poorly fitting/cause pain in the mouth  Pain/discomfort/other conditions
•  Infection/acute delirium
•  Side effects of medication

Some changes you may notice in a person living with dementia:

• Difficulty finding words and maybe saying a related word instead of the one that is lost
• They may not be able to understand what you are saying or only be able to grasp some of it – comprehension abilities must be therefore understood by the communicator and adjustments made
• They may talk fluently but not make sense
• Writing and understanding the written word may deteriorate
• They may talk of the distant past but not recent events
• They may lose the normal social conventions of conversation and interrupt, ignore another speaker, not respond when spoken to or become seemingly self-centred
• They may have difficulty expressing emotions appropriately

Further Challenges with Communication:

• Limited concentration span, difficulty following long conversations  multiple step instructions may lead to confusion – over stimulation  lose train of thought, and become repetitive background noise can be a distraction and compete for attention  may need more time to process information and respond
• Multiple step instructions may lead to confusion – over stimulation  lose train of thought, and become repetitive background noise can be a distraction and compete for attention  may need more time to process information and respond
• Lose train of thought, and become repetitive background noise can be a distraction and compete for attention  may need more time to process information and respond difficulties with communication and consequent frustration may present as behavioural expression. Therefore, we must recognize these difficulties!! It is crucial that we, as caregivers, ensure: Flexibility:
• Difficulties with communication and consequent frustration may present as behavioural expression
• Therefore, we must recognize these difficulties!! It is crucial that we, as caregivers, ensure:

Flexibility:

• Remember each person is unique, each relationship is different, so it may be trial and error for a while
• We are all a product of our own life transitions and this information allows us to communicate with a person living with dementia on THEIR level
• Talk to the person, their family, carers and health professionals for any idea’s, (if they know that person well), because they may have useful and effective communication techniques that allow interaction to, be positive
• Enter the individual reality of the person living with dementia – validate their journey
• Don’t put unfair expectations on the person/be realistic as to the specific abilities of each person regarding their capabilities – keep in touch with their strengths but be understanding and compassionate as to their losses
• Words are not the only form of communication – you will need to rely more heavily on non-verbal cues, tone, touch, body language, attitude, etc
• Listen for and learn to recognise the feelings and emotion of others, rather than the words

Preservation of self-esteem:

• Do not talk down to the person, or treat as a child, never patronise
• Simplify conversation but to an adult level
• Show acceptance, be respectful and treat always with dignity – convey trust
• Demonstrate how each person is of value by showing interest, and taking time to get to know them
• Never, ever discuss a person in front of others as if they are not present – this is extremely disrespectful
• Never discuss a person as a condition!!
• Do not show annoyance in relation to repetition – treat the conversation as if it is the first time you have heard that information every single time, as this is how it seems to the person who has short term memory loss
• Use physical contact to reassure if the person responds to this – lovely hugs, hold hands, a kiss on the cheek

Methods of communicating:

•  Remain calm and talk in a gentle, matter of fact way
•  Smile!!! Be reassuring/use non-threatening eye contact – do not glare!
•  Sentences are to be short and simple/focus on one idea at a time
•  CommunicAID – pictures/word charts/books – **(please see refence at the end of this session) **  Talk about things that interest the person to engage
•  Allow time for interpretation of what you say – patience!
•  Speak slowly and clearly and don’t raise voice – raising your voice can come across as anger
•  Repeat/rephrase if necessary
•  Use orientating names – ie. Call by preferred name only!!!!!!!
•  Do not attempt complex conversation
•  Consider culture and language
•  Try to tune into the ‘feelings’ rather than the content of the conversation Humour can bring you closer together and is a great pressure valve. Try to laugh together.
•  Humour can bring you closer together and is a great pressure valve. Try to laugh together.

The right environment:

• Avoid competing noises or activities as this can overstimulate and create confusion and stress
• Move slowly and quietly, do not rush around – people who rush make others feel anxious
• Maintain regular routines, preferences, and choices
• Sit and squat by a seated person to gain eye contact. Do not eyeball from above
• When talking in a group, make sure no one is on the outer, say the person’s name if you want to communicate with them/face them always
• Music is an excellent way to communicate, as it can help a person recall words and express feelings
• Old photos can be used to stimulate memories and recall events.

Simplifying activity:

• Break down an instruction into simple activity – step by step – understand sequencing ability of a person. Explain
• Explain each step as you go to ensure you don’t make a person fearful as they may not know what you expect or are doing – eg. Imagine being stripped naked for a shower by a stranger and they stay fully dressed!!
• Focus on familiar tasks – introducing new tasks is confusing – keep to well-known routines and preferences and rely on the person to have their choices expressed. Make it easy for the person to join in conversation by asking questions that only need a ‘yes’ ‘no’ answer
• Make it easy for the person to join in conversation by asking questions that only need a ‘yes’ ‘no’ answer. If questioning is too difficult, use positive statements – eg. Don’t say “would you like a cup of tea?”, but, instead, “here is a lovely warm cup of tea.
• If questioning is too difficult, use positive statements – eg. Don’t say “would you like a cup of tea?”, but, instead, “here is a lovely warm cup of tea. Mmmmmm. This is for you”.Try to avoid making a person make complicated decisions if this creates confusion and anxiety, as too many decisions can be frustrating and intimidating
• Try to avoid making a person make complicated decisions if this creates confusion and anxiety, as too many decisions can be frustrating and intimidating

Finding words:

• If a person has difficulty finding a word, ask them to explain in another way, if possible
• Ask them to show you, or point to, what they are referring to, if possible
• If they cannot think of a word, don’t jump in and interrupt
• Listen for clues/watch body language
• Always check back with them to see if you are right

Avoidance of verbal abuse/aggressiveness:

Avoid upsetting arguments, or allowing your own frustrations and anxieties to show – what we put out we receive back!!!!!!!

Use distraction when possible to help overcome frustrations Validate feelings, thoughts, emotion

Be aware that the person living with dementia is functioning the best they can in a reality that is constantly changing – we do not have to deal with such overwhelming pressure.

Remember:

‘one destructive comment of negativity and discouragement can undermine the self-esteem, take away all hope from the person with dementia, and have a devastating effect.’