What not to say to Alzheimer patients?
10 Things People with Dementia Might Say and How to Respond
1. “You’re cheating on me! I can’t believe you went off with that tramp!” Sometimes, it’s hard to know how to respond to someone with disease or another kind of dementia, especially when they make comments that don’t make sense or are hurtful to you. Here are some practical suggestions to try, and while none of them will work all of the time for everyone, perhaps you’ll find one or two that are helpful in your situation. Response: “Oh Fran, you know that no one else would be able to put up with me! I love you. Let’s go for a walk. Remember when Freddy was born, what a little miracle he was? He’s coming over at 3:00 o’clock today.” Using humor and distraction when coping with challenges can help both the caregiver and the person with dementia.
2. “Where’s my mom? Mom, come here!” Response: “Are you looking for your mother? I bet you miss her. Can you tell me about her? What did you like about her? Was she a good cook? What was your favorite food that she made?” (This is an example of using validation therapy to support the reality of the person with dementia.) Sometimes, when you use validation, the person may be comforted just by talking about her mother or father that she misses. Those memories may be enough to calm and reassure the person. At other times, validation can even help a person come to the point in the conversation where they say, “You know, I really miss my mom. She died several years ago.”
3. “It’s time for me to go to work. I don’t want to be late!” Response: “Before you go, stop a moment to eat some breakfast or you’ll be too hungry during the day. Hey, would you mind taking a look at the sink for me? It’s not draining correctly. Oh, and I just heard that your brother Harry and his wife are stopping by soon today.” Remember how much routine and identity may be connected to leaving for work each day in the past.
4. “Look at that fat lady. Wide load coming through!” Response: (If heard by person, you can quietly say to her): “I’m so very sorry. She’s has dementia and doesn’t understand that she’s being rude. I’m so sorry.” If this is a frequent problem, you can also consider handing out a pre-printed very brief explanation of how Alzheimer’s disease affects people. You may also need to limit outings if this is a significant issue. This type of behavior can also be quite hurtful when directed to family members and friends.
5. “Help me. Help me. Help me!” Response: “Hi, Frank. I’m right here. Are you in pain? Can I get you a glass of water? Let’s go for a walk together and stretch our muscles.”
6. “You’re just a *&@#*!” (Foul language) Response: “Mom, please don’t speak like that. It scares the children. You sound frustrated. Can I help you? Would you like to read your daily newspaper?”
7. “Don’t you dare touch me or I’ll clock you one.” Response: “Good morning, Sally. If you don’t need anything right now, I’ll come back and check on you in 15 minutes.”
8. “Why are you letting her steal my money? I had it right here and she took it!” Response: “When was the last time you saw the money? Let’s look together for it. How much was it? Let’s look through your purse. You know, I misplaced $20 the other day and finally found it on the kitchen counter under a book. I’ll help you look.”
9. “Don’t leave me! Where are you? Come here!” Response: “Dad, I love you so much. I’m right here. I need to go out to cut the grass but you can watch me if you’d like.” Or- “I just need to use the bathroom for a few minutes but I’m not going anywhere. Can I turn your favorite show on for you?” (Sometimes, if you’re visiting a loved one at a facility, you may need staff to distract your loved one at mealtime for you to slip away without causing her to be upset.) If you’re able, you can also just choose to spend a little more time with your loved one before you leave.
10. “I want to go home now. Please take me home!” Response: “We can’t go out right now, Fred. The weather’s not very good. While we wait, can I get you a cup of hot chocolate? Also, I’m wondering if you can help me sort through these family pictures.” Or- “While I get ready for our walk, I wondered if you could you tell me about your brother and sister when you all were little. Did you share a room with Uncle Fred? I bet you and he had a lot of fun together. Did Aunt Sarah pester you, or was she a fun little sister? Can you tell me again about the time you played that joke on your mom and dad? I love to hear about your family! You must have had such fun growing up together.”
Communicating with someone with dementia — Dementia guide
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Dementia is a progressive illness that, over time, will affect a person’s ability to remember and understand basic everyday facts, such as names, dates and places.
Dementia will gradually affect the way a person communicates. Their ability to present rational ideas and to reason clearly will change.
If you are looking after a person with dementia, you may find that as the illness progresses you’ll have to start discussions to get the person to make conversation. This is common. Their ability to process information gets progressively weaker and their responses can become delayed.
Encouraging someone with dementia to communicate
Try to start conversations with the person you’re looking after, especially if you notice that they’re starting fewer conversations themselves. It can help to:
- speak clearly and slowly, using short sentences
- make eye contact with the person when they’re talking or asking questions
- give them time to respond, because they may feel pressured if you try to speed up their answers
- encourage them to join in conversations with others, where possible
- let them speak for themselves during discussions about their welfare or health issues
- try not to patronise them, or ridicule what they say
- acknowledge what they have said, even if they do not answer your question, or what they say seems out of context – show that you’ve heard them and encourage them to say more about their answer
- give them simple choices – avoid creating complicated choices or options for them
- use other ways to communicate – such as rephrasing questions because they cannot answer in the way they used to
Communicating through body language and physical contact
Communication is not just talking. Gestures, movement and facial expressions can all convey meaning or help you get a message across. Body language and physical contact become significant when speech is difficult for a person with dementia.
When someone has difficulty speaking or understanding, try to:
- be patient and remain calm, which can help the person communicate more easily
- keep your tone of voice positive and friendly, where possible
- talk to them at a respectful distance to avoid intimidating them – being at the same level or lower than they are (for example, if they are sitting) can also help
- pat or hold the person’s hand while talking to them to help reassure them and make you feel closer – watch their body language and listen to what they say to see whether they’re comfortable with you doing this
It’s important that you encourage the person to communicate what they want, however they can. Remember, we all find it frustrating when we cannot communicate effectively, or are misunderstood.
Listening to and understanding someone with dementia
Communication is a two-way process. As a carer of someone with dementia, you will probably have to learn to listen more carefully.
You may need to be more aware of non-verbal messages, such as facial expressions and body language. You may have to use more physical contact, such as reassuring pats on the arm, or smile as well as speaking.
Active listening can help:
- use eye contact to look at the person, and encourage them to look at you when either of you are talking
- try not to interrupt them, even if you think you know what they’re saying
- stop what you’re doing so you can give the person your full attention while they speak
- minimise distractions that may get in the way of communication, such as the television or the radio playing too loudly, but always check if it’s OK to do so
- repeat what you heard back to the person and ask if it’s accurate, or ask them to repeat what they said
Page last reviewed: 13 February 2023
Next review due: 13 February 2026
Communication in the later stages of dementia
Is it possible to communicate with a person with advanced dementia who may not be able to talk and appears unresponsive? When you first meet someone with no language and apparently little of their personality remaining, it is easy to believe that it is not.
But there is clear evidence – through the power of music, song and touch – that people with advanced dementia do not lose the ability to communicate.
Even though they can’t talk you can tell. Their eyes are fixed on you and they’ll smile or they’ll be far more relaxed when you’re doing something.
Care worker being interviewed about her work.
Naomi Feil, founder of Validation Therapy, shares a breakthrough moment on film with Gladys Wilson, 87, who is virtually unable to speak. As Naomi starts singing gospel songs – favourites of Gladys, who has Alzheimer’s disease – Gladys starts tapping to the songs and begins to sing along with her.
Naomi says: ‘When she moved I moved with her. I matched the intensity of my voice to the intensity of her movement. And pretty soon, for a split second, we became one person.’
You can watch the remarkable transformation in Gladys in an extract from the film, ‘There is a bridge’.
Those of us who have cared for someone with advanced dementia over a period of time know that there is more to good dementia care at this stage than just keeping the body alive. The person usually has little or no speech, can no longer move independently and may have lost the ability to maintain their body posture at all. But what we learn is that people are people throughout this process.
Back to basics
How we communicate with a person with advanced dementia can vary, depending on what we know about the individual – particularly things they have enjoyed during their life. It can be influenced by where they are receiving the care (in their own home, care home or hospital) and the relationship they have with the people providing care and support.
It sometimes helps to think about how we communicate with a baby or toddler just starting out on their life. We have to be very careful when making comparisons between older people and children. We do not want to be in the habit of treating adult citizens as if they were children in a way that would feel patronising.
From a conceptual point of view, however, if we see human development as being triggered by the brain maturing through infancy and childhood, what we see happening in dementia can be viewed as a reversal of this process.
There are some striking similarities between what babies and toddlers need from their carers or care workers and what people with advanced or end-stage dementia need from theirs. Most people who have cared for babies or toddlers find some reactions that come quite naturally.
We feel drawn to use touch, to hold, to stroke gently, to achieve eye-contact, to try to make them smile, to soothe them when they cry and to make sure they are comfortable. Over time we get to know the personality of the baby or toddler and what they are trying to communicate.
Communicating with a person with advanced dementia requires us to use these same set of skills. We need to recognise that we are caring for someone who has a long life behind them and many stored memories and experiences. If we can find a bridge into these memories we can find a way to communicate with them and nurture their spirit at this final stage of life.
Communication should be there until the end. Never assume that the person cannot hear or understand you. Try reminiscing about their past, talk to them about things of interest (for example, how the family are and what the grandchildren are doing). Pick up on a hobby or interest they may have had (if they enjoyed horse racing, talk about the races that day, the form of the horses, the odds and the jockeys involved).
Non-verbal communication is vital. Touch can be used to stimulate senses and provide reassurance. Try to achieve eye contact. Be aware of the tone of your voice. Remember that the expression on your face will convey more than the content of your words.
Communicating well with a person in end-stage dementia is not written about extensively. It is something that is best seen first-hand. Some years ago, communication experts Kate Allan and John Killick undertook an in-depth piece of work in Australia called the Good Sunset Project specifically to develop ways of working with people with advanced dementia. They based this on a communication approach developed in coma work and got some very positive results.
When a person is at the end stage of dementia it may appear that they have completely withdrawn from our world and communication is difficult. At this stage it is worth considering alternative forms of stimulation to make a connection.
The sense of smell is very powerful. Scents and smells can create a link and bring back reassuring memories of times gone by (for example, the aroma of baked bread or a favourite perfume or flowers). Having these close by can produce a reaction and a connection.
Holding hands, stroking a person’s face or arms, or brushing their hair can be soothing and be pivotal in making a connection. A woman may like the feel of a silk scarf on her neck.
A family photograph or a picture of a favourite view can produce a reaction – perhaps encouraging the person to open their eyes and reach out.
Playing or humming favourite tunes can bring back happy memories. Someone who lived in the countryside may react to bird song. If they lived by the coast, sounds of waves crashing on the shore may lift their spirits. Music can lead to finger or foot tapping, a smile, perhaps a tear.
Often people with dementia who stopped speaking a long time ago can sing along to a familiar tune, remembering the words.
Dancing and movement
Depending on their mobility, the person with dementia may connect through dancing. Perhaps they will get up and move around or put their arms in a familiar dance hold or move their feet to the rhythm of the music.
Connections can be made through art by the simple sensory act of holding a brush or pencil and scribbling, painting or drawing on paper. (See Creative arts in the Keeping active and occupied section).
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- Activity: Communication in the later stages of dementia
- What the research says: Communicating well
Further reading Open
Alzheimer Scotland (2005) Letting go without giving up: Continuing to care for the person with dementia, Edinburgh: Alzheimer Scotland. Alzheimer’s Society (2012) ‘The later stages of dementia’, Factsheet 417, London: Alzheimer’s Society. Killick, J. and Allan, K. (2005) ‘Good Sunset Project: quality of life in advanced dementia’, Journal of Dementia Care, vol 13, no 6, pp 22–23. Killick, J. and Allan, K. (2006) ‘Making contact with those close to death’, Journal of Dementia Care, vol 14, no 1, pp 22–24. Killick, J. and Allan, K. (2006) ‘The Getting Through Initiative: inside the interactions’, Journal of Dementia Care, vol 14, no 2, pp 27–29. Naomi Feil, founder of Validation Therapy, shares a breakthrough moment on video with Gladys Wilson, 87, who is virtually unable to speak. View an extract from the video, ‘There is a bridge’.
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to communicating well with people with dementia: ‘Communicating’ (500) ‘Understanding and supporting a person with dementia’ (524),‘Dementia and the brain’ (456), ‘Changes in behaviour’ (525) and ‘Top tips’. Communicating with people with dementia
This short video posted on Youtube features Bupa’s dementia specialist, Dr Graham Stokes, talking about communication with people with dementia. Dementia care: how to deal with the challenges of communication
This 2012 publication was written by Jennifer Roberts, previously the Dementia Lead for the UKHCA. DemTalk
DemTalk is a free online toolkit giving guidance on communication with people living with dementia. Different versions of the toolkit have been developed for family carers and health and care staff. Listen, talk, connect: communicating with people living with dementia
This 2014 Care UK guide is aimed at family carers, relatives and friends and covers topics such as ‘Starting a conversation’, ‘Having a conversation’, ‘Making the most of your visit’, ‘The unspoken word’, and ‘Coping with difficult conversations’. The guide includes top tips and practical suggestions from a range of Care UK staff. Tips for better communication with a person living with dementia
This new factsheet from Dementia UK explains the challenges faced by people with dementia when communicating, sets out helpful suggestions on good communication skills, and describes some common communication dilemmas.
Related pages from this section Open
- Communicating well
- Understanding dementia
- The person behind dementia
- Having a conversation
- Behaviour as a form of communication
- Communication in the later stages
- Part of: Dementia
Last updated: October 2020