Advice
What not to say to somebody with dementia
Words can be helpful and uplifting, but also hurtful and frustrating depending on the situation. Here, we look at some words and questions to try to avoid when talking to a person with dementia.
For a person living with dementia, language and communication can become more difficult over time. The type of difficulties a person will face as dementia progresses will be different for each individual.
The type and stage of the person's dementia will also be a factor. While the person living with the condition may have difficulties with finding the right word, the words that other people use are important too.
Good communication can be key to helping the quality of life for the person with dementia. Here are a few of the words and questions it may be best to avoid in conversation.
7 things to avoid saying to somebody with dementia
1. 'Remember when...?'
While it can be tempting to try and jog the memory of somebody living with dementia, this kind of question may highlight the fact that the person has memory problems. It can also sometimes feel like the person is being tested.
This can be a frustrating or painful experience, and there’s also no evidence that prompting the person in this way will help them to recall or hold on to memories. It can be pleasant and comforting to talk about the past, however, it’s usually more helpful to lead the conversation and allow the person to join in.
Try this instead:
Instead of posing a question, try leading with ‘I remember when…’. That way, the person can search their memory calmly without feeling embarrassed, then join in if they like.
2. 'I've just told you that'
It can be difficult answering the same question several times, especially when you are trying to keep frustration or upset from your voice.
However, reminding the person that you have just answered their question will not help them retain the information for next time, it is likely to just remind them of their condition. This can be distressing for you both. Bear in mind, that for them, it is likely to feel like the first time they have asked the question.
Try this instead:
Try to remember that the person cannot help repeating themselves. It is important for them to feel heard and understood.
Answer repeated questions calmly and patiently, with an even tone of voice. If you feel the need, take a break, and remove yourself from the conversation for a while.
3. 'Your brother died 10 years ago'
A person living with dementia may forget about a past bereavement or ask for somebody who has died. Reminding them of a loved one's death can be very painful, and they may react as though hearing the news for the first time all over again.
How to respond to these types of difficult questions will vary for different people in different circumstances, however, it's always important to show sensitivity and minimise any distress.
Try this instead:
For some people, encouraging them to talk about the person they are asking about can be comforting. Distraction techniques can be useful, although try not to avoid the question if they keep asking, as this can cause the person to feel more anxious.
Find out how the person is feeling, sometimes asking about a particular family member or friend is due to the person having an unmet need, such as wanting comfort or reassurance.
4. 'What did you do this morning?'
Avoid asking too many open-ended questions about the past, as it could be stressful for a person with dementia if they can’t remember the answer. While it might seem polite to ask somebody about their day, it’s better to focus on what’s happening in the present.
Try this instead:
Instead of asking them about their day, speak briefly about your day and give them time to ask you questions about it.
They might then offer information about what they have done. Talk to them about the present and use items in the environment such as photos or ornaments to stimulate conversation.
5. 'Do you recognise me?'
It can be distressing when somebody with dementia doesn’t recognise you, especially if you have a close relationship with them. Remember that it is likely to be upsetting for them to not recognise people around them too.
Asking the person if they know who you are can make them feel guilty or anxious if they don't remember or offended if they do.
Try this instead:
The way you greet somebody with dementia might change depending on the stage of their condition – judge for yourself but keep it friendly. A warm hello could suffice, or it may help to say your name and your relationship to them each time.
6. 'Let’s have a cup of tea now, then after that we can go for nice walk and get lunch and something else to drink in that café you like next to the big church in town.’
Long, complex sentences can be difficult to grasp for somebody with dementia. It's difficult to process several ideas at once as cognitive abilities slow down, so it's better to give directions or instructions one step at a time.
Try this instead:
Use short, simple sentences as much as possible. Avoid speaking too much in loud or busy environments, and wait until you have the person’s full attention before you start. During a conversation, give the person enough time to process what you are saying.
7. 'I'll just help you use your little spoon there, love?'
‘Elderspeak’ - which can involve talking in a high-pitched voice, using words like ‘love’ or ‘deary’, and generally speaking to the person like they are a child - should be avoided. This can be patronising and infantilising for a person with dementia.
Try this instead:
Always remember the person behind the dementia. It’s fine if the person needs you to speak slower than usual, but try to keep your tone of voice the same as with anyone else.
Some people may like being called ‘love’ or ‘dear’, but unless you know the person it is usually best to use their name instead. This helps keep their dignity intact.
This article was first published in 2017 and most recently updated in January 2024.
Carers: looking after yourself
Supporting a person with dementia can be challenging. Looking after yourself is important for both you and the person you are supporting.
Emily Godwn
saysMy great aunty has dimentia but it seems to have taken over her quite fast, last week I was laughing on the phone to her and now she thinks I'm dead and she doesn't want me to ring her anymore, I always speak to her on the phone everynight but now I haven't spoken with her for five nights and I'm finding it really difficult, what should I do? Someone please help me
Anonymous
saysHi Emily,
Thanks for your comment - we're really sorry to hear about this change in your great aunty.
We have some general advice on our website about changes in behaviour, which you may find useful: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…
As the advice there is general, you may want to speak to one of our dementia advisers about your situation for more tailored support. You can call our Dementia Connect support line on 0333 150 3456 and see more details about our phone support (including opening hours) here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this is helpful,
Alzheimer's Society blog team
Susan
saysMy mother turned 100 last week and has lived with me for a number of years but the the last year and a half she has been suffering from Alzheimer’s and brain shrinkage. It has been quite hard but since this lockdown began I sometimes (most of the time) feel so wound up and stressed. I try my best to follow the guidance on how to speak and react with her but everything seems so magnified during this period I have to admit I’m struggling with the constant battle of her not wanting to wash or shower. Her constantly say she wants to go home to her mam. And I’m keeping her prisoner. Can you give me some advice please
Anonymous
saysHi Susan
We're really sorry to hear about these challenges you're facing with your mother.
By calling 0333 150 3456, you can talk with a dementia adviser who can provide you with ideas and guidance on how to manage your mother's needs. Our advisers can also offer you the option to receive regular calls to keep in touch to find out how you are and offer advice and support when things change. Find out more about our support line here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
You may also find it helpful to speak with other primary carers and family members of people affected by dementia. Our online community, Talking Point, is available 24/7: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this helps, Susan.
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Alzheimer's Society blog team
Jennie Stanton
saysMy husband was diagnosed with Alzheimer’s in January 2016, he hasn’t spoken a word since the end of 2017. So how can I communicate with him. He gives no response at all , and I am at my wits end to know how to communicate with him. He is very agile and when we go for walks , I almost have to run to keep up with him. He sleeps a lot, and also walks around the house a lot, going from room to room, backwards and forwards
Anonymous
saysHi there Jennie,
Thanks for getting in touch. Dementia can make it hard for people to communicate, which can be upsetting and frustrating - both for the person with dementia, and for the people around them. We have a factsheet on communicating that you may find useful: https://www.alzheimers.org.uk/sites/default/files/2019-09/500lp-communi…
We recommend you call our Dementia Connect support line on 0333 150 3456 so our advisers can fully understand the situation and provide you with the information and advice you need. Here's some information about our support line and opening times: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
You may also benefit from talking with other people affected by dementia who may have experienced a similar situation - join our online community, Talking Point, to find out more: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this is helpful, Jennie.
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Alzheimer's Society blog team
Susan Duby
saysJennie: I am in America but would love to communicate and commiserate with you! I am going through a similar Alzheimer’s situation as you are. Sue Duby, Macomb, MI
Jennie Stanton
saysI am not sure what to say. My husband who has Alzhiemer’s cannot speak, has difficulty hearing cannot write or read now. So how do I communicate with him, with great difficulty. Do you have any ideas.
Anonymous
saysHi Jennie,
Thanks for your comment, we're really sorry to hear about your husband.
This sounds very difficult for you both. It's good to remember that non-verbal communication can also be really important - we have some information on our website that you may find helpful: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how…
If you've already seen this advice or would like to talk to somebody about your situation, please call our Dementia Connect support line on 0333 150 3456. Here you'll be able to talk to a trained dementia adviser who can give more ideas, advice and support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this is helpful, Jennie.
Alzheimer's Society blog team
Jean Langton
saysWhy does my husband of 64 years, think that I am two different people. I never leave him with anyone else. But he very often doesn't believe me that I am his wife! It is so upsetting, although I do not show my feelings to him!
Darleen Vanderbosch
saysHis response to you may be determined by where he is, in his mind, at that particular time. If his "reality" at the moment is when he was in his early 20s, for instance, his wife is young, and probably has no grey hairs. If he is of high scool age he probably doesn't have a wife, or children. If he doesn't know you, you might ask him to tell you about his wife, or even ask if he is married. The reality he is in at the moment is the only reality he has, you can't change that anymore than someone could convince you the moon is purple when you Know that isn't true. If they tried to insist, it would only irritate you. Help him find joy in whatever place he is. My husband's reality changes, sometimes from one hour to the next. We both can enjoy our day if I encourage him at whatever or whenever he believes he is. I wish you the very best.
Jean Langton
saysWhy does my husband of 64 years, think that I am two different people. I never leave him with anyone else. But he very often doesn't believe me that I am his wife! It is so upsetting, although I do not show my feelings to him!
Mary healy
saysMy sister has dementia when i talk to her an look in her eyes it look like she fading away wondering if anyone else notice this with there love ones with dementia
Lynette Smith
saysThe frustration gets overwhelming when you are living with this 24/7. My sister does not understand the most simple tasks, such as put it in bin, etc. the frustration is worse when she understands sometimes and not other times, trying to guess when she remembers is the hard part.
daughter
saysMy mother has Vascular Dementia and communication can be difficult, she can be very normal and talking normal and suddenly she can be somewhere else. Its very frustrating to know just how to effectively communicate with her.
Darleen Vanderbosch
saysNot being able to follow the tought someone we love can be very frustrating. The key for me has been to just stop, take a mental deep breath, and clear my mind, when my husband is suddenly somewhere else. If I can't figure out what he's talking about, I may say something like, "I'm sorry, my mind wandered, what were you saying?" Or "oh, where are you?" Or whatever else might elicit a clue as to where he is at the moment. He might think he is on a trip we took 40 years ago. If so, I just go along. We can't change where or when they think they are, we can only play detective (consider it a game you are trying to win) and/or go along. That way both you and your mother can enjoy your time together. Encourage her as much as you can, so she won't feel that you are angry with her, or don't believe her. We never knew what our young children would come up with next, but we adjusted because short attention was their norm. Moms norm is different now, too.
Debbie Hamma
saysI disagree with these. My sister who has Alzheimer’s wants me to tell her things like deaths of loved ones. When I tell her I don’t want to tell her about painful things, she tells me it helps her reality. After a while she moves on to different topics. She wants the truth no matter what!
Susan
saysThank you, every bit of guidance through this mindfield helps.
Dee
saysMy mother Who is 82 has bladder cancer and since she had been on chemo she Appears to be developing dementia her personality has changed and she is angry with my father who is primary caregiver, appears to be hallucinating and seeing and believing things that are not true
Kriste Eden
saysMy mother in- law is now living with us and she always says she wants to go home and im not sure what to say. Sometimes i tell her she's home and sometimes i tell her the Dr said she has to stay with us for awhile. Is there a correct way to tell her she can't go home?
Adriaan
saysI have the exact same situation. Mother in law moved in with us 1 year ago. Had to take her bank cards from her because she keep hiding and losing them. Regularly she asks where is her cards and she wants it back and wants to go home (she lived by herself) and she says nothing is wrong with her.
Step one: Mom, it is dangerous for you living by yourself. The world is not what is was and its not save living alone anymore.
Step two: You are well looked after here and that is what matters.
Step three: You are not in the way and make yourself home.
After this chat, she is calmed and say that if she complain again, we should give her a wack on the head. LOL.
But then few days later it happens again. LOL.
So I am not sure if I am following the right path, but I still get angry every time it happen
My advice is give her something that 'attach' her to your home.
We have chickens in our garden and she has her own white silkie chicken.
We told her that Hanna (the silie) enjoys it here and will not fit in anywhere else.
Please let me know if you have advice for me too.
Mark
saysIs it helpful or hurtful to let them know they are doing something wrong or to not do something. Ex.( don't throw that away)
Sofiane Bounoua
saystry the live in care hub member Ashridge Home Care ashridgehomecare.co.uk they may be able to help you.
Anne
saysI’m brand new to being a live in carer but was put straight into care for someone with advanced dementia. Her profile certainly didn’t indicate how bad it was. With the help of some of her very good friends, social services and old age mental health staff I’m working through my difficulties and am coping much better. I also so find sites like this invaluable. I’ve gotten more help this way than from my agency. I’m not sure I’ll be continuing as a carer but keep up the good work.
nat chris
sayswhat to do if you live abroad and can only visit your parent with alzheimer once a year. They don't recognize you and get confused in the first days of the visit. Is the yearly visit going to cause more damage to their health/illness ?
Anonymous
saysHi Nat, thanks for getting in touch.
Sorry to hear about this situation with your parent - it sounds difficult and I'm afraid there's no simple answer here. The effect of a yearly visit will vary from one person to another, and also is likely to vary for the same person at different times and as their dementia progresses.
In terms of whether a yearly visit would cause a progression of the person’s Alzheimer’s, we can say that, as Alzheimer’s is a physical disease of the brain, then it is not possible for this to be made worse by a stressful or confusing event. However, the disruption caused by a visit could well cause an exacerbation of confusion in the short term. So this wouldn’t cause your parent's dementia to get worse and progress in a medical sense, however they may experience confusion that they wouldn’t have otherwise experienced.
An important point though, is that this potential for a short-term increase in confusion needs to be weighed against the possible benefits for the person in seeing their child/children.
In cases like this, It's useful to get a better understanding of your parent's situation so we can talk through the options. You can do this by contacting our team of Dementia Advisers, either by emailing directly on [email protected] or call us on 0333 150 3456.
We are open seven days a week (9:00am to 8:00pm Monday – Wednesday, 9.00am to 5.00pm Thursday and Friday and 10:00am to 4:00pm weekends).
Hope this is helpful,
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Alzheimer's Society blog team