“Communication is a life line of two souls and a bridge that connects two hearts”
At some stage, people living with dementia may experience problems with communication. This can be in the form of being able to communicate their wishes (expressive) and/or being able to understand what somebody is saying to them (receptive). This can be intermittent and/or constant and must be extremely frustrating and frightening at times. Often people know what they want to say but cannot find the right words, many times I have heard them say that the word is “on the tip of my tongue.” Also the brain may affect the speed at which thoughts and words are processed and so this has an effect on understanding and conveying messages. Some types of dementia such as frontotemporal dementia can affect language and communication early on in the condition. It may be worth asking your doctor for a referral to a speech and language therapist who may be able to offer some strategies for your partner. Also picture and symbol books and electronic tablets may help where they may be unable to communicate their needs.
Being stressed can make this much worse, so it’s important to give your loved one time to express themselves and not rush them or finish their sentences for them. When we slow down, we can take more notice of non-verbal communication, this includes facial expressions, gestures, posture and movement. Also, be mindful that if your loved one’s mother tongue is different from the language they have spoken for most of their lives, they may revert back to old language or a mixture of both. Be aware of possible hearing loss, don’t shout or over exaggerate and make sure background noise is at a minimum. You can speak a little slower but make sure that the natural rhythm of your speech is maintained. Also make sure that if your loved one wears a hearing aid, that it is in working order and try and arrange regular visits to your audiology clinic. Try and involve family and friends in helping you with hospital and ophthalmology visits.
Often where speech and language deteriorates, the language of emotions step in. It is important to recognise the person’s need to communicate and here you may need to find creative ways of doing so. If a person appears agitated, they may not be able to express that they are hungry, in pain or need the toilet. Feelings are often communicated more easily than facts and people living with dementia may speak more in metaphor or skirt around those “lost” words using other well used phrases. It is important to listen to what is being communicated, not solely by concentrating on the words being spoken, but more by the feelings being conveyed. Clarifying feelings is so important such as “I know it must be hard not being able to tell me what you want to say, but I am here for you”.
Be aware that whatever your loved one is saying, their reality is real to them. Try and avoid contradicting or correcting them. If your loved one insists on going out in the rain without a coat, their reality may be very different to yours. Try and say to them “I believe it is raining outside,” that way you are being honest but not challenging or contradicting them. Whilst I don’t wish this column to become a list of do’s and don’ts, there are some things that we can end up naturally doing that may not help the situation and some new approaches that are worth trying.
Avoid talking about your partner in front of them as if they are not there, you may know them better than anyone else. The person inside will still have feelings, even if they not able to express them. People can withdraw and become more apathetic and depressed if they are being ignored or talked about, we just have to try and imagine how we would feel.
Avoid testing your loved one’s memory, try and imagine how you would feel. It highlights their difficulties and can make the person feel a multitude of emotions from anxiety, agitation, frustration and depression. They may or may not show these feelings to you. Don’t forget your loved one is still there, the person is still present. Instead of asking your loved one if they remember their granddaughter’s name, just say something like: “hello love, your granddaughter, Jessica has come to see you”. That way you are prompting them about the name of the person and their relationship to them. They may very well remember their face and that the person represents someone meaningful to them. We have to move away from worrying about the facts and move towards love, feeling and being in the moment.
There is a big difference between reacting and responding. We can often react immediately and without thinking, which can lead to negative feelings. Whereas when we respond, we take a moment to think things through and are less likely to show frustration. If your loved one tends to repeat themselves frequently, firstly you need to see if you can help them and understand their needs, it often means that something is on their mind that hasn’t been resolved. They may be thirsty, hungry, need the toilet or be in pain. Be present with them, face them on the same level and maintain eye contact. Take a moment to be still and mindful, try and learn to respond without emotion answering the question being asked. The use of picture cards may be helpful here, if they are unable to say what they need, they may be able to point to a picture that depicts what they want to say.
Don’t always feel that you have to speak all the time. Whilst it’s important to maintain verbal communication and your loved one hear words and sounds of words, non-verbal cues such as gestures, facial expressions and body language can convey a message more effectively. You can even communicate through music. Where possible try and keep socialising, involve family and friends. Look up your local Forget Me Not clubs
Communication is so much more than words, being in the moment together helps maintain your connection together. Try and sit quietly with your loved one and listen to their breathing, listen to your breathing and try and mirror theirs, then slow your breathing down. As you breathe in, count to three and as you breathe out, count to three, keep doing this for a few minutes you may find their breathing slows too. Take time to do this and forget about the chores for the moment. By breathing mindfully together you are communicating on a much deeper level which can help reduce your stress. This helps you keep that meaningful connection between the two of you.
By Jane Mullins
Jane Mullins is a dementia nurse consultant who has devoted over 25 years to the study and practice of dementia care. Through listening to and supporting people and their families during their diagnosis in the memory clinics of Bath and Cardiff, caring for people living with dementia in hospital and in care homes, she has helped people throughout all of the stages of their condition. When managing a Nursing Home, she has supported their transition from home to residential care using living histories as a guide to planning their life and care throughout their remaining years.
Jane has uncovered certain common features that may help carers and the people they care for find better ways of coping. Her practice experience is backed up by expert knowledge gained from attending conferences, seminars, investigator meetings and studying for Her PhD; A suitcase full of memories: a sensory ethnography of dementia. She explores sensory, creative and intuitive ways of reminiscence that help with communication. She is passionate about spreading the word about how dementia can affect people and offers creative, meaningful ways to communicate and reconnect with the one they love.