What caregivers can do: Make it easier for people with dementia to understand you by changing how you speak, such as use simple words and sentences, speak clearly and slowly. Learn how to understand what people with dementia are trying to say. Help them express what they need.
- Being able to talk to a person with dementia and understand the person is essential for care.
- Video discussing communication problems and strategies.
- Basic communication tips.
- Some examples.
- Enjoying communication with someone with dementia.
- See also….
Masks worn by caregivers to keep the person safe from the COVID 19 infection are necessary for protecting the person but also complicate communication.
The person may find it disorienting, annoying or puzzling to see the caregiver in a mask. They may not be able to recognize the caregiver. Also, the caregiver’s expression is not visible, and voice gets muffled.
Caregivers wearing masks need to be especially careful about speaking clearly and have to be even more gentle and reassuring to be able to communicate effectively.
Some additional suggestions shared in forums are that caregivers get special masks made that have their photos (or wear tee- clothes with their picture printed on it) to make it easier for the person to recognize them, or make masks some sort of fun change (like having masks with smileys or interesting pictures.)
Imagine a situation where you cannot understand what others are saying, and cannot tell them what you want. Think of how much such a problem would affect your life. Unfortunately, this is a common problem that many people with dementia face.
People with dementia fumble over words and cannot express themselves. You may not understand what they want. Are they hungry? In pain? What has upset them? When you tell them something, such as it is time for the bath, they look blank and don’t respond. Or they get agitated or look scared.
Inability to communicate is one of the most common causes of agitation of the person with dementia and for caregiver frustration. Being able to talk to, and understand the person with dementia is essential for caregiving. It is a foundation. Better communication improves the connection with the person and reduces chances of agitation and withdrawal, or other worrisome behaviors. This requires understanding the problems of the person with dementia and adjusting how you talk.
Communication is not just about using words (verbal communication). It includes gestures, facial expressions, and body language (non-verbal communication). There are many simple ways to improve communication and these improve the connection with the person with dementia. They enable better care.
The video below discusses problems that persons with dementia may be facing while communicating and suggests strategies and tips that family caregivers can use to make communication easier and more effective. The video uses pictures and sketches to explain the suggestions, and is available in English and Hindi.
View the English video below. If the video player does not load, you can view the English video on Youtube Opens in new window.
The Hindi video is available at this link: (youtube) Hindi video: Dementia aur Baatcheet Opens in new window
Some quick tips:
- Remind yourself that this person has a genuine problem in understanding you, and in telling what he/ she wants
- Make the environment free of distractions
- Communicate simply, and also use gestures
- Give the person time to understand and respond
- Stay alert for the person’s response, and change your way of communicating accordingly
- Mentally, remain calm and helpful
To understand the person or to explain something, take the person’s abilities into account while talking. Remember that the person finds it difficult to understand words and their meanings and forgets what is being said even while you are speaking.
The person’s ability to understand and communicate gets worse over time. It also varies across days; it may be better on some days and worse on others. Communication is more difficult when the person is tired or upset, and easier when the person is relaxed. You have to adjust how you talk depending on the situation. If the person looks confused or tense, or turns the body or face away, change how you are talking.
In general, do things that make it easier for people with dementia to understand you, and to tell you what they need. But do not talk to them as if they are silly or ignorant persons. Respect is a must; they sense disrespect and irritation immediately, and feel hurt and insulted. While talking to them, think how you would want to be treated if you were facing problems like the person with dementia.
Communicate without distractions and in a non-threatening environment
Persons with dementia need to be able to pay attention to what is being said. They should feel relaxed.
- Make it easier for the person to hear you clearly.
- If the person uses hearing aids, make sure these are working properly.
- Make sure there are no distracting sounds. Switch off the TV/ radio. Do not try to communicate when there are noisy sounds of plates or cooking in the background, or someone talking loudly on the phone.
- Face the person with dementia; do not speak from behind, because the person may feel alarmed or threatened.
- If the person looks at you in a puzzled/ disoriented way, as if not sure who you are or why you are there, introduce yourself briefly to help orient the person.
- Maintain eye contact; lower yourself for this if necessary.
- Remain calm and pleasant.
Persons with dementia have problems understanding complex words and sentences, and remembering what they just heard. They need time to understand things.
- Use simple sentences with simple words.
- Speak simply and slowly.
- Give the person time to understand (and, if needed, respond) before continuing with the next sentence.
- If the person with dementia looks confused:
- reword using synonyms
- add gestures
- ask the person what he/ she wants
Instructions are complicated for people with dementia. This is because they must understand what is being said, and then see how to do it. When asking them to do something, make the task easier for them:
- Mention only one step at a time.
- State clearly what is to be done.
- Do not tell the person what not to do (they sometimes cannot differentiate between “do” and “don’t do”).
- Avoid explanations of why it is necessary or what will happen if the task is not done (this is unnecessary and only burdens the person who is already struggling to understand what you are saying).
- Acknowledge when a task is done with a simple, positive statement.
Questions are stressful for persons with dementia. They may feel stupid if they do not understand the question, and because they are unable to answer. On the other hand, they sometimes want to be able to choose. If they look confused or tense, change how you ask questions:
- Ask simple questions and avoid giving complex choices. Limit choices to two or three options, and keep each option simple.
- Avoid rhetoric questions.
- Avoid unnecessary questions.
- Give the person time to respond, and if necessary, rephrase the question or prompt the person.
Supplement speech with other modes of communication
As words may sometimes not mean anything to the person with dementia, in addition to talking:
- use gestures, such as pointing to an object, or demonstrating what action you want done (For example, point to the toothbrush when asking the person to brush).
- let the person touch an object or smell it or see a picture.
Be careful of non-verbal communication
In most forms of dementia, people retain the ability to sense non-verbal signals. They are usually able to sense your mood when you speak to them. For example, they can sense agitation, irritation, impatience, and mockery. Try to actually feel calm and relaxed, and to have genuine affection and respect while interacting–the person with dementia will sense this and feel relaxed. Communication is much easier when everyone is relaxed.
- Stay calm and pleasant.
- Even if the person is doing something wrong, remain calm as you gently, but firmly stop them.
- Use simple words like “Please stop” and “No“, rather than saying “What are you doing!!” and “You’ll hurt yourself!!” and “Can’t you see it is hot and you should not touch it?” You want the persin to stop the action, not to spend energy trying to understand the reason.
- Do not speak loudly or in a fast or excited way, as the person may perceive this as shouting and scolding. No one likes being scolded.
- Do not shout or scold.
- Remain pleasant. Some persons with dementia respond well if the caregiver smiles; others may suspect that the caregiver is mocking at them. Smile only in a way that doesn’t offend the person.
- Use touch if appropriate. Some persons with dementia like being touched, and like it if their hand is held. Others dislike this and consider it an invasion of privacy. Touch the person gently if the person likes it, otherwise maintain a suitable distance.
- Do not touch or hold the person with dementia in a way that may seem aggressive. Sometimes, you, to get the attention of the person (or out of frustration), may be tempted to grab the person’s shoulder–this will frighten the person. Do not grab or shake the person.
In some forms of dementia, the ability to understand facial expressions reduces. People with such dementias may seem disconnected to the emotions of others around them. Such people with dementia may appear apathetic. Their behavior may be socially inappropriate. It may seem that being careful about the non-verbal aspect is pointless in such situations, but that is not true. Such persons may still have some sense of emotions of others and they may care in some ways–even if their behavior does not reflect it. In any case, staying calm and pleasant helps the caregiver remain more balanced and in control. It keeps the communication environment more amiable and effective.
Help persons with dementia tell you what they want
It is very frustrating for persons with dementia when they cannot say what they want to say.
- If the person fumbles for a word
- Prompt them if you think you know what they mean
- Ask them to point out to what they want
- Wait patiently
- The person may stop mid-sentence, having forgotten what to say. If the person does not seem agitated, don’t insist that the person completes the sentence. Just wait, or gently prompt.
- Sometimes, persons with dementia make mistakes in what they say. It is a normal tendency for family members to correct these, thinking that the person may “improve” or that the person “needs to know what is right”. This often does not work, because the person is already trying very hard. Besides, even if you correct the person, the person is likely to forget what you said. Do not correct any mistakes, such as when
- The person may use a grammatically incorrect sentence.
- The person may say something wrong about the past or call you by a different name, or use a wrong word for an object.
- The person may a mistake in a past memory.
- If the person uses a wrong word for an object, you can mention the right word gently, but not as a correction. Do not point out the mistake to the person. Do not insist that the person uses the correct word.
If someone with dementia keeps asking the same question, or seems agitated while demanding something, consider various ways to handle such behavior. These include understanding what the person wanted, what the trigger was, what can resolve the person’s need, and how to reduce chances of harm to the person and others.
All the above are extensions of common sense. They seem obvious if you pause to think from the point of view of the person with dementia. However, it is common for family members to forget the problems of the person because they are trying to get something done.
Use more non-verbal cues. As the dementia of a person progresses, you have to become better at understanding the person’s non-verbal cues. The person may say her eye is hurting, but when asked to point out, may point to a tooth. You need to find ways to confirm your understanding, such as seeing when the person winces. By the time persons with dementia reach late-stage dementia, they reduce talking. You have to understand their needs and feelings mainly by looking at how they move their bodies, look uncomfortable, make faces, smile, look frustrated, etc.
These are just some examples. The main way of knowing if a communication worked properly is to see if the person with dementia understood you well enough for the task being done, and whether you could understand what the person wants.
Example: Under normal situations, family members say things like:
Today, Shanti called me and asked about you. You remember Shanti, no? She used to live next door to us in Vasant Vihar, and was always coming to visit us in the evenings and used to make that lovely payasam. Her elder son is here in Bangalore, and she is here to visit him, so she called me yesterday to say she’d like to drop in and meet us. I told her it is okay.
If someone with dementia does not understand such talk, make it simpler by using smaller sentences and leaving pauses for the person to absorb what you said. For example:
Shanti called me today. Shanti is the thin woman who used to live near our house many years ago, in Delhi. She made delicious payasam. [pause while the person tries to recollect. Show photo if you have one]
Shanti and her son are now in town. Shanti will come to meet us today afternoon. [give more information only if person shows interest]
Over time, even this may be difficult for the person to understand. You may need to make it even shorter and simpler, like:
Today, our friend Shanti phoned up. [show a picture if you have one]
[watch and see, if the person seems interested. If not, stop the topic]
[if person is interested, continue with another simple fact] She used to make very nice payasam.
[again, check for interest level, and continue or drop the topic] She is coming to meet you.
[If person seems tense, reassure her]
I will be here with you when Shanti comes. It will be okay.
Example: Normally, family members may have said:
You need to have your bath now, because after that you have to have breakfast and your medicine for your BP. Today’s breakfast is your favorite idli. You will like that, won’t you? So come for the bath. Why aren’t you getting up? The idlis will get cold.
You can make it easier to understand by breaking it into simple steps. For example:
It is time for your bath.[Let the person with dementia see the nightgown on the bed and the towel in your hand. These may remind her of the bath]
[later, after the bath]
Let us go for breakfast. [let the person smell the breakfast]
Here are your medicines.
Instead of saying: Are you hungry? Should I get you your tea now, or would you like coffee? I can add ginger to the tea the way you like it. It will be good for you; this weather is horrible and ginger tea is so tasty and good. Should I get you ginger tea, or plain tea?
Would you like tea or coffee?
Or if the person always has tea, avoid the unnecessary question and say:
Would you like tea now?
Here is your tea.
Instead of a rhetoric question like:
It is so hot, isn’t it?
It is very hot.
Often family members struggle a lot to communicate and end up reducing communication to a minimum. It seems difficult enough to make sure the necessary tasks of daily living are done properly.Also, family members don’t think that sitting or talking with a person with dementia can be a relaxing activity for both the person and the family. But fulfilling communication is possible once you understand some basic communication tips to talk to dementia persons.
Persons with dementia often spend a large part of their days struggling to understand the world around them and doing what is necessary. They are aware of their problems and know that they are not always able to use the right word or remember something correctly. This is an intense pressure on them.
You can sometimes sit with them and just relax. If you don’t feel helpless and anxious about the way they struggle, they will also feel less pressure and relax. They may start remembering old events. What they say may have many mistakes. They may use wrong words and remember the names and incidents wrongly. If you listen without wanting to correct them, and accept that this is what they want to talk about, you will find the experience relaxing.
Anecdote: A woman with dementia once began narrating a long story about how her brother had run away from home and she listed a number of cities that he had visited and things that he had done. None of what she said was correct. By just sitting with her and letting her talk, her caregiver son was able to enter the world that she lived in. The son experienced the strange the world that was real to her, and just stayed with her for company. The mother, feeling happy that she had been heard, was more relaxed the whole day. The next day, she narrated an entirely different past, and the son let her talk, determined to enjoy her chatter the way he would have done when he was younger and she narrated stories. Instead of this becoming a struggle to force her to face “facts”, the session became the son’s way to begin understanding how strange his mother’s memories had become. Next time he was trying to do something with her, he found himself calmer, because he now understood her situation much better.
Anecdote: A daughter, very tired because of caregiving for her mother, one day sat near her mother and started talking about how tired and sad she was. Her mother reached out her hand and squeezed the daughter’s hand in sympathy. The shocked daughter realized that her mother, despite her dementia, retained her ability to feel love and sympathy, and had sensed the daughter’s sorrow and responded to it. The daughter realized that every time she got irritated and upset, the mother must be sensing that, too. After this incident, the daughter started spending time with her mother just holding her hand, or talking of simple things, not asking questions or expecting answers, and found that she was able to connect back to the affectionate mother for at least some time every day. She would often think of these moments at times when the caregiving became very frustrating and tiring, and over time, caregiving did not seem as tiring as it did earlier.
People with dementia, despite their problems, often retain their ability to feel emotions and to sense emotions of others. Use this to come closer to them emotionally. You can feel better about caregiving by sharing nice times with them. Enjoy fun activities along with them.
(Please note that even persons with FTD, who seem apathetic and disconnected, may be caring (see resources below for one such story)
Resources/ references from Dementia Care Notes and related sites
Pages that discuss related topics
- Helping with Activities of Daily Living.
- Handling Behavior Challenges
- Improving the patient’s quality of life
Some relevant external links
- Communication with Alzheimer’s Disease patients Opens in new window
- Personal story of someone with FTD Opens in new window who says, “Even when I don’t care, I do care”.
Communication is discussed in all dementia caregiving books (you can see a list of suggested books here: Books on dementia and care or surf Amazon.com or Amazon.in for your specific needs.