When someone has dementia, it changes the ways in which you can communicate with them. As the illness progresses over time, it is not only memory that becomes weakened. The person will almost certainly lose some of the language skills that they have had since childhood. The pattern of language loss can give a clue to a neurologist about which part of the brain has been affected, and which disease is causing the progressive degeneration of the brain tissue. The benefit of this is to help you know what might be expected, and to start to think of some strategies that could help.
There are some rare dementias which affect language and communication first before the other more commonly recognised symptoms develop. These are called Primary Progressive Aphasia (PPA). For example, in LPA (Logopenic Progressive Aphasia), the early sign is not the person’s memory problem. The person starts to speak more slowly, with frequent pauses, and difficulty repeating phrases or sentences when asked. It isn’t only in speaking that problems emerge. The person starts to make new spelling errors when writing.
Some of the advice that has been given in the past about how to overcome communications difficulties in dementia has been general but still very useful.
- Getting the person’s attention by using their name or touching their sleeve before starting to speak. (Difficulty in focussing can be a real issue.)
- Giving the person much more time to answer and respond than you would usually because it takes them time to get their ideas and words together. (Some best practice call centres that deal with vulnerable people have a practice of counting slowly to ten after asking a question before any follow up prompt, to allow for slow thinking.)
- Giving the person simple choices and using simple language, and only ask one question at a time.
- Asking yourself when someone doesn’t respond whether there is value in rephrasing, or whether you just need to repeat exactly what you said because you had already made it nice and simple. If you rephrase, they might be puzzled about whether it is something new you have turned to, and you are asking a second question without waiting for the answer to the first.
- Make sure hearing aids are working properly and they are wearing the right glasses, well-polished.
All of this is helpful, but it doesn’t reach the heart of what communication is in dementia. It is not only about speech, or questions and responses. Communication is about feelings. Nearly everything that a person with dementia does is a form of communication. It’s just that the communication is different from what we are used to and different from how they used to communicate. Distressed behaviour when the person is pacing about may be communicating a wide range of feelings such as boredom, a physical need like requiring the toilet, or a sense of being trapped in an unrecognised place.
So although it is often said that the person with dementia loses the capacity to communicate, it might be better to say that we lose our capacity to understand people who stop using communication in the way we usually expect. The aim of this blog is to explore some aspects of communication loss and to talk through practical ways of supporting communication for as long as possible.
The time of day. Dementia is hugely tiring, and each person will have a different pattern of when they are most awake and receptive, but often it is in the early part of the day that communication works best. If you have dementia, but you are well-slept and your blood sugar is high from a good breakfast, and you are well-hydrated with your first cup of tea and a glass of orange juice, you may be in a better position to have the sort of conversation that would be impossible later in the day. Capacity to understand is not an “all or nothing” state, and can vary enormously depending on when you are trying to communicate.
The light level. Most people with dementia are older and the structures in ageing eye start to become yellowish, meaning that it is harder to see anything. You can counter this to a large extent by increasing the light level in the room. Because communication is better when the person can see you and pay attention to you, making sure that the light is good is important for understanding. Not only can they hear your words, but a lot can be surmised from your facial expression and gestures. So, in addition to touching the sleeve, sitting in front of them or getting otherwise to the same level as the person, face-to-face, can help, and the benefit of that is enhanced by how bright the room is. Avoiding glare, but making things plain is crucial.
The acoustic environment. Noise is disabling for a person with dementia. Let’s make an artificial distinction between “noise” and “sound”. Looking first at the situation in a care home, there is the noise of music from a radio in the nearby kitchen, and the pots and pans rattling as the trolley passes to set the wooden tables for lunch. A man might be talking quietly to himself in a corner, and there’s some traffic noise coming through the open window. Against this background you want to talk to someone with dementia. Your voice is the “sound” you want them to listen to, and you want them to screen out the background “noise”. When someone with a hearing deficit gets a hearing aid for the first time, they often describe a problem of distinguishing between sounds they are listening for, and background noises. For a person with dementia, a similar problem seems to build up. The background noise is disabling for them because they can’t concentrate in the important sound of the voice of someone who is asking questions, reassuring them, or giving information. So they seem confused and lacking in understanding.
What can the care setting do about acoustics? Simple changes make a difference. Introducing soft furnishings like carpet, or carpet tiles, and curtains reduces the resonance in the room, so that background noises are reduced. Using tablecloths dampens the noise of cutlery and crockery. Sound deadening panels can be fixed to the walls or ceiling that muffle sounds, and as appropriate they can be decorated with artwork. A trolley with larger wheels will make less noise and rattle its contents less than one with small wheels. Just having a rule about when it’s appropriate to have music playing in the background, and the volume of general staff interactions, can make a huge difference. Care settings can buy a noise monitor to fix to the wall that looks like a traffic light, showing red, green, or amber according to the decibels of ambient noise in the space. Doing a noise audit involves sitting by yourself in the environment, eyes closed, and just listening. Does your call system sound in every room and floor of the building, when in fact you could use personal vibrating pagers to respond to care calls silently? And where you really need a sonic alarm, could it be a reassuring chime like a gentle doorbell, or does it really need to sound like a cardiac arrest every time, all through the day and into the night?
Even in the person’s own home, there are changes that can be made to improve the environment for communication. Turning something off when there is something important to say can really help. Find a quiet place to talk.
Repetitive vocalisation. Sometimes the person with dementia will say things that appear to have no meaning or repeat a word or phrase over and over. It is more alarming for those around if the word or phrase is upsetting like a cry for help. Because they are not in a dangerous situation, and the caregiver is not responding to it, passers-by might decide that the carer is neglecting or ignoring the person’s need. It’s hugely disruptive in communal settings and exhausting for people at home. In some forms of dementia, when the frontal lobes of the brain are involved, the words can be foul or sexualised, causing embarrassment and offence. It is one of the most intractable issues causing huge caregiver distress and unfortunately sedative medication may be used for this. Even though the sounds seem to have no meaning in the context, something is being communicated, for example the person is bored, and some distraction such as favourite music would reduce it. Or the person might be overstimulated by noise and disruptive movement in the environment and would become quiet if this was changed. Each person is different and resorting to medication is the least justifiable solution because of the negative affect it has on the quality of life of the person medicated, who is not being tranquilised to satisfy their own unmet need, but the needs of others. But the caregiver distress is real, they are also entitled to have their needs met in difficult times.
Reducing frustration. No matter how much they try to be patient, warm and understanding, communication can become extremely frustrating for anyone living with someone who has dementia. This frustration can become evident in non-verbal ways, through tone of voice or gestures which might inadvertently escalate the problems. It’s not only the caregiver who is upset. Both parties are frustrated, and can become angry, at each other and themselves. At early stages it is possible to ask the person with dementia how you can help them to communicate. One-to-one exchanges are easier than talking in groups. Using all the techniques above can help, but you have to remember that this can be exhausting, and if you are a caregiver, you need to find ways of resting and caring for yourself. Joining a caregiver’s group is a good way of releasing frustration and even anger, without feeling guilty or the risk of taking it out on someone else. Repetitive questioning can be a huge source of stress. Teaching a technique of zoning out, where you repeat the answer to the question in the same words, without engaging in a way that causes frustration is a possible solution. It has been likened to a teenager who says “Uhuh,” to you no matter what you say, and you know they are not listening. If you take that role of not really listening or investing hugely in crafting your response to questions that are going to be repeated in any case, you conserve your energy.
No matter how hard the communication is, caregivers still wait for those moments of real connection that suddenly break through – a smile, a gesture or a sigh that encapsulates all that is left of the loving and caring mutual relationship before disease took away much of the richness of human interaction. We must do everything we can to support them.
Professor June Andrews.