Dementia Gateway: Getting to know the person with dementia
Communication in the later stages of dementia
Key messages
- People with very advanced dementia face particular challenges with communication.
- Arguably people in end-stage dementia need the most regular nurturing contact from their caregivers, but they are least likely to receive this.
- Communication remains important throughout a person's journey with dementia.
Even though they can't talk you can tell. Their eyes are fixed on you and they'll smile or they'll be far more relaxed when you're doing something.
Care worker being interviewed about her work
Explore the links below now to read more about this topic:
-
1. Introduction Open
For many years dementia was described as 'the death that leaves the body behind'. Taking this point of view leads us to think that there is little point in trying to connect with someone who is just a body.
The examples of the positive ways in which we can help people with dementia lead a good life suggests that this very negative view is no longer common in modern dementia care.
However, when we first meet an individual with end-stage dementia who has no language and appears to have little of their personality remaining, it is easy to agree with this description. How can we get to know someone at this stage of life? Those of us who have cared for someone with end-stage dementia over a period of time know that there is more to good dementia care at this stage than just keeping the body alive. The term 'end-stage' refers here to the stage of very advanced dementia when a person has little or no speech, when they can no longer move independently and may have lost the ability to maintain their body posture at all. We learn that people are people throughout this process.
-
2. Back to basics Open
How we communicate and get to know a person at this stage can be quite difficult to describe. It sometimes helps to think about how we get to know someone at the very other end of the life cycle – someone who is a small infant.
We have to be very careful when making comparisons between older people and children. We do not want to be in the habit of treating adult citizens as if they were children in a way that would feel patronising or infantilising.
From a conceptual point of view, however, if we see human development as being triggered by the brain maturing through infancy and childhood, what we see happening in dementia can be viewed as a reversal of this process.
There are some striking similarities between what small infants need from their caregivers and what people in end-stage dementia need from their caregivers. Most people who have cared for small infants find some reactions that come quite naturally.
We feel drawn to use touch, to hold, to stroke gently, to achieve eye-contact, to try to make them smile, to soothe them when they cry and to make sure they are comfortable. Over time we get to know the personality of this infant and we know that this is a unique person.
People in end-stage dementia require a similar response from us. Getting to know someone in end-stage dementia requires us to use these same set of skills. Of course, all the things that we have covered in the rest of this website apply to this stage too.
We need to recognise that we are caring for someone who has a long life behind them and many stored memories and experiences. If we can find a bridge into these memories we can find a way into nurturing the spirit at this final stage of life.
-
3. Keep communicating Open
Communication should be there until the end. Never assume that the person cannot understand. Use repetition. Use gentle touch. Achieve eye-contact. Be aware of the tone of your voice. Remember that the expression on your face will convey more than the content of your words.
Communicating well with a person in end-stage dementia is not written about extensively. It is something that is best seen firsthand. You are strongly encouraged to visit two websites.
The Dementia Positive website (www.dementiapositive.co.uk) was created by two of the UK's greatest advocates of communicating well with people with dementia: Kate Allan and John Killick. The aim of this website is to encourage communication, consultation and creativity in work with people who have dementia. John and Kate have worked for many years with people with dementia with this in mind. Kate is a clinical psychologist and John is a poet and a writer.
This website has lots of great ideas and resources. The reason for including it here specifically is that a few years ago Kate and John undertook an in-depth piece of work in Sydney in Australia called the Good Sunset Project specifically to develop ways of working with people with advanced dementia (to read about this, click on 'News' and then 'Communication projects'). They based this on a communication approach developed in coma work and got some very positive initial results.
Another recommended film is 'There is a bridge’, which features people with late-stage dementia forming emotionally meaningful relationships. An extract from the film is available on YouTube.
Watch the one of Naomi Feil and Mrs Gladys Wilson. Naomi Feil is another great name in communication and dementia, being the founder of Validation Therapy. Listen and learn from a master.
Over to you!
Click here to do a quick activity that will deepen your understanding of this topic. The activity can be done alone or with colleagues and you can also download a copy. Trainer's notes have also been provided.
Extra reading
If you visit the Dementia resources section you will find suggestions for extra reading on this topic.
Visit our e-learning resources on dementia!
Visit our e-learning resource on 'Understanding later stage dementia', which provides a range of practical strategies on communicating effectively with a person with dementia. The resource contains audio, video and a variety of interactive exercises.
