People with dementia have something to say and they do say it. Unfortunately, their words invariably conceal who they are and what they want. Hence an objective of person-centred work is to decipher their words to unearth their concealed messages and in the process reveal that the person is not lost but merely more difficult to see behind the remnants of their intellectual powers.
However trying to understand the meaning of what a person with dementia is saying requires a gentle touch for we should never trample on a person’s communications and impose our interpretation on their words. We need to be patient, listen well and pick up the clues that may guide us to an understanding of what is being said.
I have never forgotten an elderly woman who in the midst of her dementia would sit wringing her hands. When comforted she would repeat over and over again, ‘Man like me’. What was she saying? Meaningless or meaningful? My understanding of her words was confirmed when the person she was closest to was present. Only then would she be calm and her eyes brighten. This was not her husband, for she had been a widow for over 40 years, but her brother – that ‘man like me’.
To achieve understanding we are not embarking upon a radical and elegant new way of communicating with people living with dementia. Instead we employ proven counselling skills that help us listen better, help people reveal more of themselves and as a result in the care of people with dementia we are helped to understand the meaning that lies behind their fragmented and sometimes incomprehensible utterances.
Patient attentive listening, retention and use of small details, placing yourself in their shoes all help us build up a picture of what is being said.
Let us consider the plight of John.
The Scene. John has arrived at the care home where he is now to live. His wife is with him, tearful because she can no longer cope and she feels guilty. John is standing, facing his son, looking bemused. Two carers are trying to accompany him into the home. There is an atmosphere of being rushed, for John and his family have arrived later than expected and meals are being served.
John starts to call out, “Where am I going? I’m not going anywhere without my cat – no,no,no! Where’s my cat? He starts to call out his cat’s name. He is agitated and becomes angry as his son attempts to hold his am. John continues calling out his cat’s name, yet his cat died years ago.
Pace. Communication with a person with dementia cannot be rushed. This can be achieved through monitoring and adjusting the speed of what you’re saying and learning to appreciate that pauses are not barren spells to be filled with words but a time during which the person may say a bit more. Remember, it is the person with dementia we need to listen to, not ourselves. As a guide, when a pause occurs count to 5 slowly in your head before breaking the silence.
Unfortunately for John the people around him are in a hurry. The carers have to get back to the dining room; John’s wife wants to go home; and his son has his work to go to. Hence, they hear what John says, but they are not listening.
Focused listening. Despite our best intentions it can be difficult listening to a person with dementia for is not always easy to concentrate on what is being said. Why? Because the content is often sparse, repetitious, disjointed and at times incomprehensible. So we need to concentrate. Focus on what we hear and ask what the words might represent and then follow this line of enquiry. It may not just be the words that are spoken which are important, but the number of times they are said may also be significant. So we cannot afford to just hear. We must concentrate and listen with purpose. Good listening is always focused. Yet this was not happening with John. They heard him ask for his cat and immediately assumed he was confused. They did not listen and think that the meaning of his words might reflect a need to feel safe and secure. Calling out for his cat may have represented the security of his past. Did the presence of his cat once upon a time comfort and soothe him?
Non-verbal signals. Our understanding of a person with dementia is not solely dependent on the words they use. Words are just one component of communication. We also need to be aware and take heed of voice tone, facial expression, eye contact, hand movements and body posture. Sometimes the words may say one thing but the non-verbals reveal something else, suggesting that the person feels very differently, at which time it is the non-verbals we acknowledge and respond to.
John was bemused, agitated and unwelcoming of being touched. Without doubt his non-verbal signals communicated his distress and confirmed his need for reassurance. Unfortunately reassurance was not forthcoming for he was simply told not to be silly, his cat was dead!
Active listening. This is about showing you are listening so the person detects you are interested in them and what they have to say and what you hope is that this will encourage them to say more. Regrettably, carers often present as disinterested when faced with a person with dementia who is ‘rambling’. They look away, seem distracted, respond inappropriately and make cursory comments. Can this ever encourage a person to say more? Even in the face of deteriorating intellectual powers people with dementia remain intuitive and sensitive to the atmosphere carers create. And does that atmosphere support communication or does it close down attempts to communicate because carers show they are not listening?
The skills of active listening involve facing the person, making eye contact and presenting as relaxed. A smile conveys warmth and interest, while a gentle tone of voice is reassuring. And then there are the gestures, uhms and nods that all contribute to knowing someone is listening. As may the occasional touch.
Nobody was interested in what John had to say. All he would have sensed were people in a hurry trying to get away as quickly as possible.
Reflective listening. We are attempting to understand what a person’s words mean, what they know themselves to be doing and how they are feeling. Yet, we don’t demand explanations. In fact, it is not for us to say much at all. However, it is important to show by what we do say that we are listening and we want them to say more. A particularly important way to achieve this is to reflect back to the person what you have heard. By repeating what they have said we provide a series of stepping stones that help the person say more. However, we do not simply reflect their phrases and words, we also reflect their feelings. For example,
Repeat a key word
Repeat a short phrase the person has used
Paraphrase the main theme of what they have been saying
Reflect what the person appears to be feeling
Reflect on what the person has done or is doing
With John, on hearing him shout out for his cat, those around him may have reflected:
‘You seem upset, John?”
“Are you feeling angry being here?”
“Is your cat important to you?”
“Did your cat brighten up your day?”
Questions. A barrage of questions is never required. It is even the case that the careful use of non-verbal skills and reflection may result in very few questions being asked. We might ‘just let them talk’. If questions are asked, try to avoid open-ended questions. Open questions are those that cannot be answered in one word. In the care of people with dementia such questions are too complex. It is better to ask closed questions which can be answered with a ‘yes’ or ‘no’, or by a short phrase. For a person who is struggling to communicate, closed questions that are straightforward and concise may encourage them to at least contribute a one word answer.
“John, are you worried?”
“Do you know where you’re going”?
“Do you know who I am John?”
“Are you angry with us?”
General Guidelines for Communication.
Reduce background noise that can be a source of distraction and may interfere with hearing and comprehension
Raise your voice slightly at the beginning to gain the person’s attention
Words should be unambiguous
Use short sentences
If understanding is poor, use different ways to say the same thing
If skills are practiced and guidelines are followed good communication is facilitated and the move toward appreciating and attempting to understand the meanings and feelings that lie behind words starts, to the benefit of those who historically have been misunderstood, or worse ignored and dismissed.
Professor Graham Stokes,
Director of Dementia Care, Bupa Care Services UK
Honorary Visiting Professor of Person-Centred Dementia Care, University of Bradford