We’re researching how businesses can engage people with dementia meaningfully and respectfully in the design, testing, and commercialization of apps intended for their use. For this research, we’re looking for people living with dementia to use, test, and provide feedback on a digital memory aid currently being developed. Follow the link for more information.
Sometimes, I am at a loss for words or cannot find the right word
Communication is challenging when I cannot find the right words. My vocabulary gets lost and my mind goes blank. My sentences ‘derail’, I have difficulty projecting my voice, and sometimes I stutter.
- Keep a pen and paper handy and write down notes for reminders.
- When in a group setting, write down one word that can bring the point back when you get an opportunity to speak.
- Keep conversations simple and on the light side.
- Take a few moments, relax, and think about what you want to say, or what people want you to do; the words often come when you feel less pressured.
- If you cannot remember, simply say so.
- Be a good friend to yourself.
- Don’t be afraid to tell others if you are having a bad day.
- Ask people to slow down.
What others can do:
- Pay attention to non-verbal cues and body language, such as eyes and hands.
- Give me reminders and prompts.
- Tell me your name and remind me of my connection to you.
- Allow me time to think, find the right word, answer questions, or write down my thoughts.
- Remember that I have something to say too.
- Ask me how I would like to be helped.
- Remind me what we are speaking about.
- Ask me if I want help with a word, but do not rush in to finish my sentences.
Difficulty maintaining focus and keeping on track, especially in large groups
When talking with friends, I often lose my train of thought. I cannot keep up or on track. People often talk too quickly and do not give me enough time to talk. I have something to say; I just need more time and less distraction.
- If you can’t think of anything to say, ask the other person a personal question. Then pay close attention to the answer and comment on something they said.
- Listen to your peers and learn what works for them.
- Do your important communicating when you are rested.
- Communicate in a quiet environment and minimize distractions.
- Ask people to speak one person at a time.
- Make notes before important conversations so you don’t get sidetracked.
- Communicate during meal times, while walking, or when working on projects, as these conversations tend to flow more easily.
- Ask people to slow down and use shorter sentences.
- Ask people to repeat a question in a different context, or have them provide an example.
- Try to keep to one-on-one conversations or small groups.
What others can do:
- Keep conversations light and simple and talk to me slowly and calmly.
- Provide me with one suggestion at a time and provide fewer options/choices.
- Be direct and open with me and don’t beat around the bush.
- Please don’t interrupt when I am on a roll or I’ll loose my thought.
- Do not move ahead in a conversation without me because I will not move on in my head. I often repeat myself because I am still thinking about that issue and I don’t know that I already spoke about it.
- Allow me the time I need to process my thought and communicate it to you.
Others forget the range of communication strategies
Many people believe communication involves only the things that we say, when it is really so much more. Communication also incorporates the things that we do not say – the looks we give, the hand gestures we use, or the body language we use. It can include writing, gestures, signs or signals, behaviours, and displays of emotion. The manner in which we say something can clarify a message or provide room for misinterpretation. For example, someone may shout in order to be heard, which may lead to a perception of anger or impatience, even if the words do not reflect these emotions.
- Use hand signals. Hold your hand up to stop a conversation or prevent someone from interrupting, or use the ‘time out’ signal if a question is too long or complicated, or if you lose your concentration.
- Writing is an easier way for some people to communicate.
- When you need to start a difficult talk, leave a note for someone saying that you would like to talk about something.
- The computer is a good tool for writing letters to tell others about your feelings, and you can also use it to help you proofread.
- Use other visual aids or non-verbal cues. Use your eyes and body language, draw pictures, write notes, or point to photos or pictures.
- Use a tape recorder for the times when you think of a thought and writing it down may be difficult (like in the middle of the night).
- Keep lists of things you would like to share with others.
What others can do:
- When in public and I would like my children to step in and help me with what I am trying to communicate, I give my children a look. We joke about it being a ‘Mother’s Look’ – you know, the look a mother gives when her children are misbehaving in public. Now that look means “PLEASE HELP!”
- Recognize that I rely on your body language.
- Some conversations are easier in person than over the phone or email.
- A warm touch can tell me that you care.
I like to use the computer to proofread letters and rewrite for feelings and expressions.”
– Clayton Wilson, B.A., M.Ed., Brantford, ON