By C. Angela Burrow,Consultant at Center for Applied Research in Dementia & Dementia Support Trainer
What we say affects others. In the world of dementia, consider what we often hear: ‘suffering’, ‘burden’, ‘challenging behavior’. Imagine that you, or someone close to you, received a diagnosis of dementia. Would you feel hopeful and optimistic or overwhelmed, hopeless and fearful for the future?
We have the power to use language for better or worse. As a society we are moving towards Dementia- Friendly communities where we will educate, raise awareness and reduce stigma. That doesn’t mean we put a positive spin on things or go into denial, but rather recognize the description of ‘suffering with dementia’, should not be ours to voice.
Mrs. Smith, who is living with dementia, may certainly feel like she is experiencing challenges, but it is her life and she deserves support and to be recognized as our friend, neighbor or co-worker first, not as a list of symptoms and a burden. She must be supported and encouraged to continue her life. Enable her to visit the grocery store, place of worship, bank or restaurant, as we learn to circumvent the deficits of the disease on her behalf.
Our language must be Respectful, Inclusive, Empowering and without Stigma.
Respectful Language does not allow dementia to be the defining aspect in the life of someone or allow stereotypes or myths about dementia to control our thinking and actions. Dementia is not a normal part of aging and memory loss is not always the major symptom. Dementia is a group of symptoms which can affect language, problem solving, judgment, communication, mood and sensory perceptions, caused by various diseases, the most common being Alzheimer’s.
Empowering Language is important so that people are a part of their community as much as possible. Language that focuses on abilities, not deficits, of people living with dementia helps them stay positive.
Where do we start?
When talking about people living with dementia:
Avoid the following words and phrases: Sufferer, Victim, Demented Person, Dementing Illness, Afflicted, He is fading away, Empty Shell, She has lost her mind
Instead, say this…
- A person with dementia; A person living with dementia;
- A person with a diagnosis of dementia
Sensitive Communication:
- Treat the person living with dementia with dignity and respect. Avoid talking past the person as if he or she isn’t there.
- Be aware of your feelings. Your tone of voice may communicate your attitude. Use positive friendly facial expressions.
- Be patient and supportive. Let the person know that you are listening and trying to understand; slow down and avoid interrupting.
- Offer reassurance. If he or she is having trouble communicating, reassure them that it’s okay and encourage him/her to continue.
- Avoid criticizing or correcting. Don’t tell the person what he or she is saying is incorrect. Instead, listen and try to find the meaning in what is being said.
- Avoid arguing. If the person says something you don’t agree with, let it be. Arguing will only makes things worse and may increase agitation for the person with dementia.
- Offer a guess. If he/she uses the wrong word or cannot find a word, try guessing. If you understand what the person means, finding the right word may not even be necessary.
- Encourage nonverbal communication. Ask the person to point or gesture. Use pictures as cues to prompt and use effective signage for wayfinding.
- Provide a statement rather than ask a question. Say: “The bathroom is right here,” instead of, “Do you need to use the bathroom?”
- Avoid confusing and vague statements about something you want the person to do. A caregiver could say: “Your warm shower is ready. I will help you.”
- Name an object or place. Rather than, “Here it is,” say, “Here is your hat.”
- Turn negatives into positives. Instead of saying, “Don’t go there,” say, “Let’s go here.”.
- Slow down! We have ‘fast checkouts’ in some grocery stores. Why not have a ‘Relaxed Lane’ for those who need more time?
Let’s be more dementia friendly and aware!
