Many of you have met or heard about James McKillop, James has been living with dementia for 15 years, and was a founding member of the Scottish Dementia Working Group in 2002.
Over a series of blogs James will share some insights around communicating with and supporting people with dementia.
Part 4: The conversation, collecting information
During the conversation try
- Tell them your name, why you are there. It is a good idea to wear a large name badge to remind them who you are.
- Your demeanour will count for a lot, be calm and reassure them you mean no harm. Be professional, be patient and this will help the atmosphere.
- Remember to treat the person with dementia you are talking to as you would a person with or without a disability. That is, as a person, a human being, with a rich life behind them. A person who survived hard times, and who may have gone through trials you could not imagine.
- Face the person and speak in a conversational manner. The tone, intonation and volume of your voice are important. Many people who are older, have hearing difficulties. They may also have seeing problems, so be careful if you show paperwork. Do not talk too quietly, screech at them or flap your arms about. Find the level at which the person can hear you clearly and maintain that level.
- If you think they look puzzled, you can rephrase your question or statement. The pace is equally important. Do not talk too fast, nor talk slow like this; Good…morning…how…are…you…today. It is demeaning.
- If the person is deaf and you are working with a signer, still 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.
- Always give way to people with dementia as their idea may be quickly forgotten. 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 even a small delay, they may well not remember what they wanted to say. You may be on a tight schedule, but give them plenty of time to absorb what you say and more time to reflect, think and reply.
- From time to time, check your information is being taken in.
- Pause and allow time for questions.
- 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. Convince them you have a full understanding of their distress and have sympathy for their situation.
- If you do go to the toilet, or step outside for a cigarette, you may need to remind the person who you are when you return. They can quickly forget.
- It is helpful to have someone who knows the person living with dementia well present, as they can fill in the gaps. If not, try and double check with other sources.
- Concentration can be limited so build in breaks. A cup of tea, a chat about photographs in the room, books, pets, grandchildren etc. Talk about family, especially grandchildren, whose photographs may be on display. If you discuss other people use the name the person knows them by, instead of referring to them as she or he etc. Set yourself a limit to stay, say an hour and continue another day if necessary.
- 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 while it was not the purpose of the exercise, it was clear I have mobility problems moving about in the house or much worse when outside. I hadn’t realized this before, and this brought it home. I am now going to the doctor. The Mats, for once, gave me the chance to have the last word with my wife.
When asking questions:
- Don’t ask two questions or make two or more points in one sentence.
- Jolt their memory. Important facts may not be remembered immediately.
- Ask a direct question to get a positive reply. Closed-ended questions can be helpful, to make it easier for the person to reply. For example: they mention a painful condition, you may ask if it has been there for a long/short time and they will reply yes or no. It is better to ask exactly how long the pain has been there.
- Understand people are reticent to open up to a stranger. Do you yourself, tell a stranger personal, hygienic things about yourself, especially if you are speaking to a young person/opposite sex? It is quite difficult. You may need several meetings to gain trust and understand how they operate. We all have our own ways. It is up to you to adapt.
- People living with dementia may not realize their shortcomings and think everything is hunky-dory. They may claim to be able to perform functions, when in fact can no longer do so. 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 or hear being said. 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, and the bin is overflowing.
- Be aware the people living with dementia can tell what we might call a ‘convincing lie’. They do not do so deliberately, as what they say is the truth to them, the truth as they remember it, 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. Memory does play tricks.
- Don’t finish sentences and be patient. Don’t presume to know what they are about to say. Understand they may ask the same question frequently or repeat themselves ad infinitum. Never say you have just/already said that. Look interested and treat it as a fresh bit of information. Do not correct them even if you know they are wrong. In their mind they are correct and if you argue, you will lose the battle and maybe the war. Try and find a ground you can both agree on, or use a harmless distraction tool.
- If possible try and not ask them something which will test their memory, even for something a few minutes ago. It might upset them not being able to remember and devalue the good of the meeting.
- It is easy to fall into the trap of using jargon and acronyms, especially if you are visiting with a colleague, this can be very confusing.
In part four of his posts on communication James will share tips on how to keep the conversation on the right track.
In his previous posts on communication James have covered:
James McKillop's writing on dementia and communication will be published as a resource booklet by Life Changes Trust later in 2016.
10 Helpful Hints Series
These books are a short series of guides in plain language for the use of health and social care workers, people with dementia and families affected by dementia. They are based on research but with the needs and time constraints of the busy carer or professional in mind.