Dementia and communication

Dementia is an umbrella term used to describe a group of symptoms characterised by behavioural changes, loss of cognitive and social functioning brought about by progressive neurological disorders (Barber, 2020). There are over 200 subtypes of dementia, but the most common are Alzheimer's, vascular, Lewy Body, mixed dementia (often a combination of Alzheimer's and vascular) and frontotemporal dementias (Sandilyan and Dening, 2019). Dementia can either be young onset or late onset. Young onset dementia refers to people who develop dementia before the age of 65 years, while late onset refers to those who develop dementia after the age of 65 years (Carter et al, 2022). There are estimated to be approximately 950000 people currently living with dementia in the UK and estimates indicate this will increase to 1.6 million by 2040 (Wittenberg et al, 2019).

Dementia and communication

Dementia, what ever the subtype, is caused by underlying disease processes and damage to the nerve cells in the brain. This damage impairs our executive function - the processes in our brains which allow us to carry out complex tasks like problem-solving and planning. While one of the first notable symptoms for many forms of dementia are problems with short-term memory and recall (Barber, 2020), the neurocognitive decline of people with dementia can also affect communicative functions early in the disease process and may manifest itself with difficulties finding words, problems with language comprehension and in initiating conversations (van Manen et al, 2021). Communication difficulties and how they present, along with its severity, will vary depending on the type and stage of a person's dementia (Pepper and Harrison Dening, 2023). The cerebral cortex of the brain is responsible for the functioning of sophisticated thinking skills and is also important for communication (Figure 1), so damage to any of the corresponding areas can impair our ability to both, give and receive communication (Headway, 2023). In the more advanced stages of dementia, there can even be a complete loss of language; therefore, people with dementia may rely on other means of communication, such as non-verbal and behavioural messages (van Manen et al, 2021).

Communication

To be able to support a person with dementia who is experiencing communication difficulties, it is essential to understand the different types of communication and how we communicate with each other. When we think about communication, the first thing that usually comes to mind is the spoken word; language is the tool we often use to express ourselves, to give meaning to the world and to our experiences within that world. Similarly, verbal communication is a powerful tool when it comes to forming relationships, making our needs known and expressing our feelings so that we can have our emotional and physical needs met (Pepper and Harrison Dening, 2023). We live surrounded by language, in the form of spoken and written language, and indeed, in our own internal thought processes. However, non-verbal communication is also key, with Mehrabian (1972) showing the importance of non-verbal communication in how we receive messages. While non-verbal communication may still make use of language (for example, when writing a letter), it can also be in a form that does not involve language at all (for example by facial expressions, body language or touch). Non-verbal communication (adapted from Killick and Allan (2001)) include:

• Our eyes: this might include making or avoiding eye contact, eye movements (e.g. eye rolling), the direction of our gaze and even pupil dilation.
• Our face: including our facial expression and movement of our face, tilting of our head
• Touch and physical contact with others: including, resting a hand on their forearm, stroking their back
• Gestures and other bodily movements: including a shrug of the shoulders, tapping your foot in impatience
• Our posture and the way we hold and position our body, such as turning our body away from a person or leaning in to show you are listening
• Our voice: including tone, pitch, volume, intonation, rate of speech and vocalisations (sounds we make)
• Our physical appearance: including, how we are dressed, how clean we are
• Our smell: this may communicate something about how well we are looking after ourselves or the use of perfume may be used to invoke certain feelings in another person
• Our use of the environment: such as how and where we position ourselves in relation to others and objects in the environment, and how we choose to decorate or present our own environment.

All dementia types involve a neurodegenerative process that damages the nerve cells in the brain, which in turn impairs executive function – that is, the mental processes that enable people to carry out complex tasks, such as planning and problem-solving, and to inhibit behaviours (Arvanitakis et al, 2019). In reality, there is often a combination of several forms of communication in play in much of what we do. For example, when we engage in a simple conversation, it is not just the speech that conveys the main messages so we also attune to other forms of communication at the same time to ‘triangulate’. If a person is telling us that they have just heard about the death of someone close to them but are smiling, have their hands on their hips in an aggressive stance and are tapping their right foot rapidly, we might not be able to clearly pick up on what they are trying to communicate.

Supporting people with dementia in their communication

Verbal communication

There are a number of ways dementia can impact upon the person's ability to communicate verbally. Difficulties with verbal communication can present as an expressive aphasia (Suárez-González et al, 2021), where the person's problems with expressing verbal communication can manifest in several ways, such as:

• Word finding difficulty and word retrieval difficulties. The person may know and understand the meaning of a particular word but has difficulty retrieving it and using it in their speech. For example, they may be unable to find the word ‘pen’ and may state ‘the stick that writes the letter’
• Problems with verbal fluency is to do with speaking and speed; however, performance relies on efficient word retrieval as well as other cognitive functions
• Difficulty pronouncing words or forming specific sounds needed to make words
• Using words in the wrong context or using an incorrect word that starts with the same letter of the desired word, such as saying ‘floor’ instead of ‘flower’
• Getting stuck on one word or sound and using it in a variety of communications that may be unrelated to the context
• Using sentences which are vague or incomplete, perhaps the sentence trailing off without being completed
• Conversation may lack structure and connections needed to make it meaningful to the recipient.

Conversely, people with dementia may experience difficulties receiving and understanding verbal communication from another person or in understanding what they read - this is known as receptive aphasia. Receptive aphasia can manifest itself in the following ways (Taylor and Underwood, 2021):

• Problems in understanding the content and meaning of both the spoken and written word
• Problems in then following instructions, such as directions or what is next in a plan of events
• Difficulty in understanding another person's point of view
• As a result of all of the above, they may give responses that may not make sense if they have misunderstood questions, instructions or comments
• They may also experience difficulties in interpreting gestures, drawings, numbers and pictures.

The impact of problems in communication

When a person with dementia has difficulties with either receiving or giving verbal communications, their conversations can appear abstract, repetitive and incomplete. This can make conversations increasingly vague with meaning sometimes alluding to the person's past (Pepper and Harrison Dening, 2023). When the connections between what is being said and the meaning behind them are less obvious, the onus is on others—family members and health and social care professionals—to contextualise the communication and give it meaning. Eventually, as a person's dementia progresses, they may completely lose the ability to verbally communicate, perhaps only being able to makes sounds that have no meaning to those around them. This renders the person dependent on others to observe and interpret all of their non-verbal cues to both anticipate and meet their needs (Pepper and Harrison Dening, 2023).

Cognition and communication difficulties

Dementia also gives rise to other cognitive symptoms that impact upon communication, such as problems with short-term memory and recall (Taylor and Underwood, 2021). When short-term memory is affected, communication can become more difficult because the context in which that communication takes place is often confused or lost for the person with dementia and may be historically based in their past. For example, take someone who cannot remember what happened to them that morning; they may struggle to engage in a conversation or ‘small talk’ about what they had for breakfast or what they spent their time doing.

The behavioural and psychological symptoms of dementia and communication

The behavioural and psychological symptoms of dementia (BPSD) are considered to be the non-cognitive symptoms of dementia (Brown and Harrison Dening, 2023) and include apathy, hallucinations, delusions, depression and anxiety - all of which have implications for a person's communication. The symptoms of depression and anxiety may cause the person to become withdrawn, meaning they are less likely to try and engage in communication and in more severe forms of depression, may even become mute (Thomas, 2021). It is important to note that these symptoms may also cause a loss of confidence in communicating, particularly when coupled with some of the difficulties discussed above.

Some people with dementia will exper ience hallucinations and/or delusions, and this can significantly impact communication. Many of the symptoms of BPSD can be frightening, both for the person with dementia and those around them (Aldridge and Harrison Dening, 2023). It can often appear that the person with dementia may be inhabiting a very different reality from us, especially where hallucinations and delusions play a part, and it can therefore be very difficult to know how to respond. When a person with dementia has difficulty in communicating or has a distorted reality when experiencing BPSD, they can often express distressed behaviours to express a need or emotion; for example, showing aggression as a way of communicating they are frightened or in pain (Aldridge and Harrison Dening, 2023).

Communication and person-centred care

Being able to communicate effectively is an essential skill for any health or social care professional; however, when caring for a person with dementia, we may need to consider how we can effectively communicate with the person and them with us. Person-centred care (PCC) has been to dominant model in dementia care for several decades, influenced by the work of Tom Kitwood (1997), and has since been reflected in national policy and guidance (National Institute for Care and Excellence, 2018). In his model of PCC, Kitwood talks about personhood as a status afforded to people with dementia by others and emphasises the importance of communication and relationships in upholding personhood (Kitwood, 1997). Kitwood developed the concept of positive person work to underpin PCC, which features the concept of malignant social psychology. This concept informs us of a range of negative behaviours that are damaging to the social status of the person with dementia, such as treachery, disempowerment or labelling. Kitwood also balances these negative elements with those that are positive and empower a person with dementia and their social standing, such as recognition, collaboration and stimulation (Kitwood, 1997).

We will now use an illustrative case study to consider communication with a person with dementia in the context of community nursing practice, using some of the elements from Kitwood's work supporting positive and PCC care (Box 1). Case studies can be both educational and informative and offer a simulation of practice examples where clinicians can identify themselves in or recall similar scenarios that they have witnessed or experienced (Seshan et al, 2021). Reviewing case studies offers ideas on how a nurse can improve both their clinical practice and therefore, patient outcomes. It can also generate a deeper and multifaceted understanding of complexities encountered in a real-life clinical context.

Box 1.Case studyArthur is 81 years old and has lived in a residential care home for 3 years. He was diagnosed with Alzheimer's disease just prior to his move to the care home. The extent of his dementia only became apparent when his wife and main carer died of advanced cancer. Arthur has one son who has lived in another, distant part of the UK since his graduation and has now retired. His son has minimal contact, visiting Arthur 3–4 times a year.Arthur has several other conditions co-morbid to his dementia; diabetes, chronic obstructive pulmonary disease and osteoarthritis. Previously, Arthur had been a long-distance lorry driver and, as many lorry drivers do, ate irregularly and often, fatty foods. He also smoked heavily, only stopping when he moved to the care home.You have been attending to dress a wound on Arthur's right shin which has been resisting to healing for over 5 months. Arthur has little conversation, answering ‘no, no, no’ to many of your conversational attempts to build a rapport, even if you have not asked a question.Today, upon your visit, Arthur appears distressed and has ripped off his dressing before you arrive; the wound is bleeding and his fingers are covered in blood. Arthur is unwilling to sit and allow you to dress his leg, which is unusual. He pushes past you and mutters ‘no, no, no’. You suspect he is in pain, if not before he removed his dressing, then certainly after, given the aggravated and bloody appearance of the wound.

Discussion

The reader may have already developed the hypothesis that Arthur (Box 1) is probably in pain and is displaying distressed behaviours related to it, so what is at play here and how can we best communicate with Arthur? Arthur's ability to communicate is clearly affected by having expressive dysphasia, with his responses being limited to ‘no, no, no’; we cannot be certain, but he is likely to be experiencing receptive aphasia as well. As we discussed before, one element of expressive dysphasia is where an individual becomes stuck on one word or sound and uses it in a variety of communications (Suárez-González et al, 2021). The result is that Arthur's vocabulary is significantly impaired, which not only makes it difficult for him to communicate his needs but also for those around him to understand what his current needs might be. A hypothesis of possible pain is well-founded so you may consider using a behavioural observational pain assessment tool, such as the Abbey pain scale (Abbey, 2004), to confirm this before you then go on to administer pain medication in the hope that Arthur will then allow you to dress the wound. Arthur has been accepting of the wound dressing for some time, so what has changed? It may be that Arthur was experiencing irritation from the wound; perhaps it was infected, or he had caught it on the furniture. Either way, it requires further investigation if we are to enable Arthur to continue with the dressing regime.

However, if we are to truly be person-centred in all our communication, it is important that we have an awareness of the core psychological needs of people with dementia, not just reduce our communications to relate to the biological domain of what should be a biopsychosocial approach (Pepper and Harrison Dening, 2023). Furthermore, factoring in that each person with dementia is unique, communication approaches will vary for each person. To communicate in a person-centred way, we need to be able to step into the experience of the person we are communicating with, not just in the present moment but also in understanding their unique history and the bearing this may have on their communication (Subramaniam et al, 2023).

When communicating with a person with dementia, especially where their communication processing is impaired, there are several tips to making communication as effective as possible (Box 2).

Box 2.Guidance on communicating with people with dementia (Adapted from Harrison-Dening, 2018; Pepper and Harrison-Dening, 2023)

• Use the person's name when talking to them and use it throughout your conversation, as appropriate, to keep their focus
• Smile (where appropriate) as this conveys empathy and warmth
• Give the person with dementia more time ‒ It may take a person with dementia longer to process what you are saying to them and also in thinking of a response
• To ensure a person-centred approach to communication, try and find out as much as you can about their life story, wishes and preferences, for example
• Face the person directly and make good eye contact; using these non-verbal cues lets them know that you are communicating and focused on them
• They may or may not want a family member present; always ask
• Speak slowly (though not too slow that it appears patronising); use short, clear sentences that are free from clinical jargon
• Be specific; for example, try not to use pronouns such as ‘he’ or ‘she’ when talking about others; use their name instead so the person can have a better chance to follow and root your conversation
• Use language and words that are familiar to them
• Ensure the space you have chosen to hold the conversation is quiet and calm, bearing in mind that they may prefer their own environment (e.g. home, care home room)
• Be aware and maximise on your non-verbal communication. For example: tone of voice, facial expressions, hand gestures and gentle touch (if they feel comfortable with this)
• Use active listening and be fully attentive to what the person is saying and/or trying to say. However, also pay attention to what their non-verbal communication is saying (e.g. facial expressions and posture)
• Consider other ways to establish communication aside from verbal, or complement and supplement the spoken word, such as the written word (being mindful of any visual or sight problems they may have), pictures (e.g. www.talkingmats.com/)
• Focus on one question at a time. Mirror what they say (repeating back to them) for affirmation. For example ‘ … so you say you were a lorry driver before you retired…?’
• Consider using gestures that mime an action; For example, miming drinking a cup of tea or putting on shoes
• Avoid open-ended questions or offering too many choices, as this can impact on a person with dementia's ability to respond
• Lastly, treat the person as an adult; do not speak in a raised voice as if they are deaf; be careful not to patronise them or speak for them if they are capable of speaking for themselves with time and support.

In the case of Arthur, it may also be helpful to take the approach of ‘validation’ (Feil, 1993), which is about acknowledging the lived experience of the person and engaging with the emotions or feelings behind what is being said. You might say something like, ‘I can see that you are in pain at the moment Arthur’, and then go on to offer some reassurance around the emotion (‘I will not do anything you do not want me to do; we can take this very slowly’). Often, the simple act of acknowledging the experience of the person and communicating that you have heard and understood them can be enough to calm distress. Distraction may also be helpful and for Arthur, having an idea of his history and his likes and dislikes will be key to communicating in a person-centred way with him. You may be able to calm some of his distress by engaging with him about his previous role as a lorry driver, before continuing with the task of changing the dressing.

Conclusion

This article has presented an overview of the ways in which dementia can impact on a person's communication, including verbal and nonverbal communication. It has discussed the impact that such communication difficulties can have on the person with dementia, and also on those who are communicating with them. The authors have discussed the model of person-centred care and used a case study to illustrate how PCC can be used in community nursing practice to aid communication for a person with dementia. As community nurses working with people with dementia, it is important to have a toolkit of approaches that can be drawn upon when communication becomes challenging, and that these are chosen and applied in the unique context of each individual you work with, ensuring that communication is truly person-centred.

Key points

• Communication difficulties are a key feature of all types of dementia, often presenting early in the disease trajectory, but changing in their presentation and severity depending on subtype and stage of the dementia
• Communication difficulties in dementia can include difficulties in expressing oneself (expressive aphasia), in understanding communication (receptive aphasia), and can for some result in the complete loss of the ability to communicate verbally
• Person-centered care is the dominant model in dementia care, and presents a useful model for responding to communication challenges, as demonstrated in the case study presented here.

CPD reflective questions

• In what ways might communication be impacted by having dementia? Think about this in the context of both expressing themselves and receiving communication from others
• Think about a time when communication has been difficult with a person with dementia you have worked with. Review the tips in Box 2, did you use any of these strategies? Are there any strategies listed there that you might use in the future?
• Using your preferred reflective framework, write a reflective piece on your learning from reading this article and how you might apply it in your practice.