Communicating With People With Dementia
Written by James McKillop, Scotland.
You need to find the right place, at the right time in the right surroundings.
Consider yourself.
Do you take in information or make your thoughts clear, when conditions are not ideal, for example if your bladder is bursting, you were up during the night with a sick child, or you have worked all morning without a break. It would be very difficult indeed. So when it comes to communicating with people with dementia who are battling a disorientating brain illness, it can be a nightmare, unless you make it as painless as possible. I believe that apart from the severe stages, PWD can make a choice, be it an oral answer, a nod or shake of the head, or perhaps moving a part of their body such as a finger. The trick is to get to know how they best communicate.
Find the right place.
If someone transported you to a busy office or to a strange room, would you not be distracted. Unwanted stimulation from their surroundings would maybe detract from the value of the meeting. You have disrupted their routine and a routine is important to PWD. Perhaps meeting in their own house or room in a care home would be best, so they can concentrate on what you are saying. As far as possible, make sure they are comfortable. Have they been to the toilet recently or have they had something to drink. Is there some liquid to sip as the meeting goes on. Are they still in their nightwear and you came too early. Are their clothes appropriate for the day and look comfy. Are they sweating, itching or cold looking. Some people while cold, do not feel or mention it. Is the room temperature at either extreme. If time passes and they are now in direct sunshine are they getting roasted. Are they sitting in a draught, or is the room stuffy and stifling. Are they sitting in a hard backed chair while they offered you their favourite chair. It’s best to check. Is their chair and yours are at right angles, it is vital you talk face to face. Ask if you can move your chair. Don’t approach from behind and only talk when they can see you clearly. If you are greeted at the door and follow them into a room, do not talk until you are both seated and at the same eye level.
Lighting is very important for people as they get older. Try and ensure your back is not facing a bright window, otherwise your face will be in darkness. People like to see people’s emotions as their lips move, to read what is unsaid. If the room is not bright, ask to put the light on, so they can see you. It may not be your job for their health and safety but if you are, consider that the new types of low energy bulbs may not shed enough light for them to see to move around safely, or perform other tasks. The tone and volume of your voice is important. Many people who are older, have hearing difficulties. Do not talk too quietly or screech. Find the level at which the person can hear you clearly and maintain that level. The pace is equally important. Do not talk too fast, nor talk slow this this. Good…morning…how…are…you…today. It is demeaning. If the person is deaf and you are working with a signer, face the person and talk at a pace the signer can follow. Have pauses between sentences for both the signer and the person to catch up as it is an exhausting procedure. If you start to speak and they also start to speak, always give way. It is very easy for the person to forget what is on their mind and if there is a delay, they may well not remember what they wanted to say. While it may be beyond your control, look to see if extraneous noise from inside or outside, can be reduced or eliminated. This can be TV, radio, other people in the house or home or traffic noise and road-works from outside. If they wear glasses, suggest they put them on which helps them follow you. Similarly if they have a hearing aid.
I visit an old lady with the Alzheimer’s type of dementia every night, who will just not wear her aid and I have to speak very loudly and repeat myself, and, being honest, this wears me out. The right time has its place. Many people take medication for all sorts of conditions and these may still be in their system in the morning or some hours later. Do your homework and find out when the person is at their best, say morning, noon or afternoon. If possible try and not have the interview coming into a meal time or ending just before it, Hunger may prove to be a distraction. Use your ears. Are they shuffling their feet, or is their tummy rumbling. So what can you do. Understand people are reticent to open up to a stranger. Do you yourself tell a stranger personal things about yourself. It is difficult. You may need several meetings to gain their trust. PWD may not realize their shortcomings and think everything is hunky-dory. They may claim to be able to perform functions, when in fact they have lost the ability. What proud person will admit to their failings, say for example when it comes to personal hygiene or looking after themselves, when they may have brought up a family during the hardships of the war. Read between the lines. You may sense that what is being said does not match up with what you observe.
Tread carefully to get to the truth. For example they may say they clean the house daily but dust is an inch thick on the mantle-piece. Treat them as you would a person with or without a disability. That is as a person, a human being with a rich life behind them. Jolt their memory. Important facts may not be remembered immediately. Ask a direct question to get a positive reply. For example in my mother’s care home they would ask her if she wanted a cup of tea, to which she would reply yes, as she was thirsty. However if they said do you want tea or coffee, she would have said coffee. Be aware the PWD can tell convincing lies. They do not do so deliberately, as what they say is the truth to them at the time. They may easily contradict themselves a little later, as that is what they are convinced of, at that later point in time. Don’t flog them to death. Concentration can be limited so build in breaks. A cup of tea, a chat about photographs in the room, books, pets, grandchildren etc Set yourself a limit to stay, say an hour and continue another day if necessary. It might be a serious matter you are discussing, so smiles may not be appropriate. However do not sit with a deadpan expression. Show some animation and if necessary show some empathy.
Don’t finish sentences and be patient.
Understand they may ask the same question frequently or repeat themselves. Never say you have just/already said that. Treat it as a fresh bit of info. Consider all communication tools which are available. For example there is a excellent system called Talking Mats and you can learn more about this from Joan Murphy at www.talkingmats.com. I personally have used Talking Mats with my wife and it was clear I have problems moving about in the house or when outside. I hadn’t realized this before and this brought it home. And for once it gave me the chance to have the last word. It can be frustrating dealing with someone with dementia and do not feel you are somehow to blame. Never let it show as they will pick it up and the rapport can be lost. Grit your teeth, take a deep breath and carry on. Remember someone with a communication problem can also get frustrated if their views are not understood or, if their speech comes out muddled. Read their body language. If they are giving out distress signals or seem not to be understand you, it may be something is troubling them such as needing the toilet, or they simply cannot hear you clearly. Remain alert at all times.
Communication can take place through touch. You may touch/hold a person’s hand or arm and convey the warmth of your personality and show understanding, sympathy and empathy. Most will appreciate it. It may have been some time since anyone showed some feeling. some will absolutely love it but the odd person may dislike it and recoil from you. So be aware a potential problem can arise which may ruin the relationship.
I can offer no advice. You have to read and judge the situation yourself.
While you should give the PWD their place, truthfully it is helpful to have someone who knows them well present, to fill in the gaps. If not try and double check with other sources. But do not talk over their head or around them if someone is present. Always look at, talk and respond to them directly. Don’t invade their space but remain in eye contact.
Also some people have the skill and history to know and understand people and speak for them when others find difficulty. Such a person would be invaluable to have present to enable communication to take place.
Remember, this quote by G.B. Shaw. “The single biggest problem with communication is the illusion that it has taken place”
N.B. Abuse: mental, physical, financial or sexual. This may not be the purposes of your visit and outside your remit or experience, but, if someone communicates that they are being abused, in their own home or in a care home, contact the proper authorities.
