Experts explain that Alzheimer's is a disease of the brain, affecting the very tool we use to process information. With this in mind, all too often too much information results in less communication. And though experts are so, based on their studies and experience, here is some advice from a true expert, who speaks from first-hand experience. James McKillop was diagnosed with multi-infarct dementia nine years ago.
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 worked all morning without a break. It would be very difficult indeed.
So when it comes to communicating with people with dementia (PWD), 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 understand and respond, be it an oral answer, a nod or shake of the head, or perhaps moving a part of their body, even if it is only their 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 (noise, movement, glare, etc.) detract from the value of the meeting. You have disrupted their routine, and routine is important to PWD. Perhaps meeting in their own house or a familiar room in a care home would be best, so they can better hear and 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 draft, or is the room stuffy and stifling? Are they sitting in a hard backed chair, while they offered you their favorite chair? (It's best to check.) Is their chair and yours at right angles or even parallel? (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. Take into account that, though they may be energy efficient, some of the new 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 also important. Many older people 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 conversation pace is equally important. Do not talk too fast, or too slow. And realize that saying things like, "Good……morning…how…are…you…today" 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 there are extraneous noises, coming from inside or outside. Can they be reduced or eliminated? Such noises may come from a TV, radio, other people in the house or home, traffic noise or even road-work taking place outside.
If they wear glasses, suggest they put them on - to help them follow you and see your facial gestures. The same holds true if they wear a hearing aid. I visit an older lady with the Alzheimer's type of dementia every night who will just not wear her aid. I have to speak very loudly and repeat myself, and honestly, 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 - morning, noon or afternoon. If possible, try and not have the conversation at a meal time or ending just before it. Hunger can be a distraction.
Understand also that people are reticent to open up to a stranger. Are you comfortable telling a stranger personal things? It is difficult. You may need several meetings to gain their trust or because of memory loss, you may appear as a stranger.
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, for example, when it comes to personal hygiene or looking after themselves, or bringing up a family during the hardships of the war?
Read between the lines. You may sense that what is being said does not appear to match the topic. Words may be being substituted or more important issues may take precedence. 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. Perhaps a clean house is a priority that can no longer be met.
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". Perhaps because it was the last choice and easiest answer, though not really her beverage of choice.
Be aware that 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 also 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, limit your conversation. Concentration can be difficult, so recognize and work with short attention spans, with short segments of information - 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 either. Show some animation and if necessary show some empathy.
Don't finish their sentences, be patient.
Understand they may ask the same question frequently or repeat themselves. Never say, "You just said that." Treat it as if it were a fresh bit of information.
Consider all available communication tools. For example, there is a excellent system called Talking Mats (www.talkingmats.com). I personally have used Talking Mats with my wife and it was clear that I have problems moving about the house, inside and outside. I hadn't realized this before and this program 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, but do not feel that you are somehow to blame. And if you are uncomfortable, try not to 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. And remember, it's a two-sided coin. PWD may also become frustrated, especially if their views are not being understood or if their speech is coming out muddled.
Read their body language. If they are giving out distress signals or seem not to understand you, it may be that something is troubling them, such as needing the toilet, or they simply cannot hear you clearly. Remain alert at all times.
Communication also takes place through touch. You may hold a person's hand or arm to 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 such feeling. And while some will absolutely love it, there might also be those who dislike the imposition on their personal space or the personal contact and recoil from you. So be aware of the potential for a problem, which may ruin the relationship. 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 else is present. Always look at, talk and respond to them directly. Don't invade their space but remain in eye contact.
Some people have the skill and history to know and understand people, and speak for them, when others find it difficult. Such gifted people are invaluable to have present to enable communication.
Remember, this quote by G.B. Shaw, "The single biggest problem with communication is the illusion that it has taken place."
One final word. Abuse can be mental, physical, financial or sexual. It may not be the purpose 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.
For more articles and information on James McKillop go to http://www.dasninternational.org/2003/mckillop.php or to send him an email at james_1940@hotmail.com .
