Advanced Dementia

Communication in advanced dementia

In advanced dementia, the challenge is how to facilitate communication when the person has little or no speech and may only make sounds or repeat isolated words or movements. What we need to remember is that the person will be trying to communicate in other ways, as the need to communicate remains to the end. If we can uncover and focus on these alternative methods of interaction, we have a better chance of reaching the person.

It feels as though the lights are on but no one's home.

Partner of a person with advanced dementia

You may also want to read the feature on ‘Communication in the later stages of dementia’.

Getting started: non-verbal communication

How to begin interacting with a person who may seem distant and unable to communicate? Let’s consider a few simple points about non-verbal communication first, as it plays such a big part in communicating with people with advanced dementia.

Life history and communication

What can you talk about with a person who appears to have little or no verbal communication? A good place to start is to try reminiscing about the person’s past. Talk to them about things of interest (for example, how the family are and what the grandchildren are doing). Pick up on a hobby or interest they may have had (if they enjoyed horse racing, talk about the races that day, the form of the horses, the odds and the jockeys involved). Remember to structure the conversation in a simple way, and not to expect the person to try to answer questions (other than perhaps just with a simple nod) or explain things.

For care staff, this sort of communication is only possible if the care team have a clear picture of the person’s life history, and have things to draw on that are close by – for example, photographs, important pieces of memorabilia or other items that are meaningful for that person. Without a clear commitment to undertaking life history work within a care facility, this sort of basic communication with a person with advanced dementia is so much harder.

For more on this, see the feature on ‘Each person is different – so get to know me’.

Learning about communication

Some researchers have studied the links between how we learn to communicate as infants and how this might relate to communication with people with advanced dementia.

A famous study by Meltzoff & Moore (1983) showed that even newborn babies readily respond to human faces and can copy simple facial movements made by others, such as sticking out the tongue. These imitative behaviours suggest that babies are born ready and willing to interact with others.

Parents also imitate their babies and naturally repeat and reinforce the facial expressions, sounds and movements they make. This imitation forms the basis of early interactions between babies and parents and provides the foundation for future communication (Tomasello 1992).

This sort of shared behaviour between parents and infants happens quite naturally and is not self-conscious. It helps infants to develop their communication skills and to improve them with further support and encouragement (Vygotsky 1978). By acting ‘as if’ they understand their baby’s communicative attempts, a parent encourages the infant to become self-aware (Newson 1978). This allows the infant to communicate with their parent in a way that is meaningful to both of them, without the need to use speech (Papousek 1995 cited in Duffy 1999).

Duffy (1999) noted that our experience of the world is not made up of language alone and that there are other ways of understanding human communication. We often convey the underlying meaning of a conversation through non-verbal forms of communication, for example we pay great attention to non-verbal signs such bodily movement, touch and facial expressions when we communicate with each other. We have all experienced how difficult it can be to understand the tone of a text message or an email because we can’t see the facial expression and body language of the person when they send it.

As the ability to speak fades away, non-verbal communication becomes increasingly important for individuals with advanced dementia. This point was echoed by Tom Kitwood who said that, ‘In the course of dementia a person will try to use whatever (communicative) resources he or she still has available. If some of the more sophisticated means of action have dwindled away, it may be necessary to fall back on ways that are more basic, and more deeply learned; some of these were learned in early childhood’ (Kitwood1997).

Some people with advanced dementia may do certain things over and over, involving the stimulation of their own bodies: rubbing their leg, chewing their fingers, pulling at items of their clothing or patting either themselves or objects with their hands. Perrin (1997) suggested that these repetitive behaviours may provide the person with advanced dementia with stimulation, possibly representing their ‘last desperate bid to remain psychologically alive’ (Kitwood 1997).

The ‘Intensive Interaction’ approach

A more structured approach to communicating with people with advanced dementia is one called ‘Intensive Interaction’.

Intensive Interaction is a method of interacting with people with severe and profound learning disabilities and accompanying speech problems that was developed in the 1980s. It appears to have great potential for improving communication between people with very advanced dementia and those who care for them. A number of researchers have shown that people with advanced dementia still have many identifiable communication skills (Orange and Purves 1996) and still want to communicate and interact with others (Ellis and Astell 2008).

But how does it work? One researcher, Phoebe Caldwell (2005), described Intensive Interaction as a way of ‘learning the language’ of non-verbal people. Intensive Interaction involves the caregiver becoming familiar with the person they want to communicate with and their non-verbal behaviours, such as sounds or movements. The caregiver then picks up one of these behaviours and uses it to start a ‘conversation’ with the person, by copying or mirroring these behaviours – in the same way that the parent imitates the child’s attempts at communicating, described above.

For example, those persistent body movements mentioned above (such as tapping a finger or pulling at a piece of fabric) could be used as a basis of communication between people with advanced dementia and their caregivers. By responding in ways that are familiar and meaningful to a person without speech, initially imitating and then developing non-verbal communication into a shared ‘language’, it is possible to build and sustain close relationships (Caldwell 2005).

Researchers Maggie Ellis and Arlene Astell have pioneered the use of Intensive Interaction with people with advanced dementia and have developed a programme which teaches caregivers how to engage in this type of communication with those they care for. The aim of focusing on non-verbal communication is to encourage the emotional message in the interaction that becomes hidden by our dependence on speech as a sign of connection. It is important to note that engaging in this type of communication is not intended to infantilise the person with dementia.

Talking Mats

Another approach to communicating with people with limited verbal skills in advanced dementia relies on using a resource called Talking Mats, which was developed by speech and language therapists at the University of Stirling. This is an interactive system of pictures on cards – or now available in a digital format – similar to various systems used for communicating with people with learning disabilities. By pointing to particular pictures in response to a question, a person with advanced dementia may be able to communicate their preferences or wishes on a particular decision, such as ‘What do you feel about living here?’

Find out more:

Edie’s story

To investigate the potential of Intensive Interaction for improving communication between people with advanced dementia and their caregivers, Arlene Astell and Maggie Ellis conducted a study in a nursing home (Ellis and Astell 2008). They worked with Edie, an 81-year-old woman with advanced dementia, who had lived in a nursing home for five years. Edie could not speak and was no longer mobile. The application of Intensive Interaction revealed that Edie had a rich communication repertoire, which comprised sound, movement, eye gaze and facial expressions. She was also able to take communicative turns, initiate interactions and imitate her communication partner (who was Maggie), signalling her willingness to interact with another person through her behaviour. Over a 10-minute period, Edie and Maggie engaged in a non-verbal ‘dialogue’ that saw them both smiling, laughing, and exchanging head rubs.

The findings of this study suggested that Intensive Interaction has potential for opening up communication channels between caregivers and people who have lost speech through dementia. The communication described here does not serve to pass on any specific information or message between partners, for example ‘I am hungry’. The key message here, however, is that meaningful emotional exchanges are possible between people with advanced dementia and their caregivers without the need to use speech.

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