What not to say to someone with dementia

What not to say to somebody with dementia

A poor choice of language can be both hurtful and frustrating. Here we look at some words and questions to avoid using.

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For somebody living with dementia, language and communication can become more difficult over time.

How and when language problems develop will depend on the individual, as well as the type of dementia and the stage it is at. While the person living with the condition may have issues with recall or finding the right word, the words that other people use are important too. 

Good communication can be key to helping somebody to live well with dementia. Here are a few of the words and questions to avoid in conversation.

7 things not to say 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 is often a reminder of memories lost. This can be a frustrating or painful experience, and there’s also no evidence that training the brain in this way will help somebody hold on to memories. That’s not to say you should avoid talking about the past, but it’s better 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…’ instead. 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'

Having to answer the same question several times can be frustrating, but repetition will happen. There is little benefit to passing on your frustration to somebody with dementia, and saying ‘I’ve just told you that’ only reminds the person of their condition.

Try this instead:

Try to be polite and as patient as possible. It's important for somebody with dementia to feel they're being listened to and understood.

3. 'Your brother died 10 years ago'

A person living with dementia may forget about a past bereavement or ask for somebody who has passed away. But reminding them of a loved one's death can be painful, even causing them to relive the grief they've already experienced. How carers should respond to this may vary for different circumstances, but it's always good to show sensitivity.

Try this instead:

It may be better to come up with another reason for somebody's absence, while at other times a gentle reminder is appropriate. In the later stages of dementia, trying to remind them that the person has died is unlikely to work and may be best avoided.

Our dementia advisers are here for you.

4. 'What did you do this morning?'

Avoid asking too many open-ended questions, 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. It’s also important that people with dementia continue to make personal choices, but defining the options might be a helpful technique.

Try this instead:

Rather than ‘what would you like to drink?’, you could ask ‘do you want tea or coffee?’ or more simply, ‘do you want a cup of tea?’.

5. 'Do you recognise me?'

It can be distressing when somebody with dementia doesn’t recognise you, but remember that the feeling is mutual. Asking the person if they know who you are can make them feel guilty 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.

6. 'Let’s have a cup of tea now, then after that we can go for nice walk and get lunch in that café you like 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 in loud environments and wait until you have the person’s full attention before you start a conversation.

7. 'Do you need some help with that, love?'

Words like ‘love’, ‘honey’ and ‘dear’ can be patronising for people living with dementia. This is sometimes referred to as ‘elderspeak’ and can cause older people to feel infantilised.

Try this instead:

Always remember the person behind the dementia, using their name as often as appropriate. This helps keep their dignity intact and aids concentration too.

Contact our National Dementia Helpline if you would like support from one of our advisers.

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Hello everyone, I would really appreciate some advice as i dont know what to do anymore regarding my grandmother. I live in a household with my sister, my mother, father and grandmother. Me and my sister work remotely so were in our rooms most of the day working and trying to focus as it is quiet in our rooms. My father is her primary caretaker(his mom) and my mother does so much for her as well. We are not trained to handle someone with dementia and its progressing really bad. My Grandmother packs all her clothes everyday to try to leave the house. She has fell down the stairs before and has gotten violent, forgotten who we were at times and stares at the wall in confusion. Its very sad and i don't think we are well equipped or sadly have the patience to deal with it. My father lashes out and gets angry so many times and even yells which i know is very bad for her. We all love her very much and its so sad for us to see this happen to her. My sister and I have suggested putting her in a home that specializes in caring for senior citizens with dementia because we think she will have a better quality of life. My dad is more old school and rather have her stay with us although her quality of life is terrible and it pains me to see her live like this. She literally stares at the wall everyday and there is alot of arguing in the household and its not a very loving environment which is why my sister and I tend to stay in our rooms. Any advice would be greatly appreciated. Are we wrong in suggesting that we move her to a home? I want to reiterate that her primary caretakers do not know how to take care of her. When my grandma ask about her mom or says shes going to her moms house, they flatout tell her that her mom is dead and sometimes in a bad tone. I dotn want to paint my father as a bad person, he is her only child and i know it is a heavy burden for him along with so many other problems going on. I apologize for the long message. Thank you for taking the time to read this.

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Hi Michael, thanks for getting in touch.

This sounds like a complex and difficult situation, so we'd really recommend talking to a dementia adviser for some information, support and advice. You, or one of your relatives, can do this by calling our Dementia Connect support line on 0333 150 3456: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

The choice of when somebody should move into residential care can be very difficult. We have some advice on our website here which you may find helpful to read: https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes…

There are lots of things to consider here, and it sounds like you could do with some support. So please do give the support line a call for some ideas which may help, or just to talk about the situation with your grandmother.

Hope this is helpful, Michael.

Alzheimer's Society blog team

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My mum is in a care home with advanced dementia just had a conversation with a neighbor of my mum who asked how my mums mind is I was very upset

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My 88 year old mother has been living with us since lockdown (March 16, 2020). Her dementia has been progressing since then. She has been confused for the most part asking to go home which means her apartment. She had started wondering around, 8 times in one month. i have to call the police twice. It has not happen recently because we have double locked all our doors but i see every morning that she tries. The first lock is always unlocked. It has been so frustrating and stressful. My biggest challenge is my mom sleeps in the main floor of our house and we all sleep upstairs. I don't have a spare room for her to sleep upstairs and most of all I have steep stairs. She wonders around the house at night and makes me worry she might fall or slip one day when trying to go up or down. It was fine in the beginning but now she wants to sleep with me upstairs on our bed. I tell her no and every time she asks it makes me feel so bad but I have to stand by my grounds. I tell her "you are already in our house. There is nothing to worry about. You are safe here". Almost everyday is the same scenario. I don't know what to do. Please help.

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Hi Vicky, thanks for your comment.

I'm sorry to hear that your mother's dementia has progressed - this sounds like a really difficult situation for you.

We have some advice on our website that you may find helpful. In particular, these pages on why somebody with dementia may walk about and how you can help keep them safe: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/wal…

As you've mentioned feeling bad about having to stand your ground, you may also find this page on guilt helpful - and how to manage those feelings while caring for somebody: https://www.alzheimers.org.uk/blog/guilt-dementia-how-manage-guilty-fee…

I hope these links are helpful, Vicky. But if you need more support, please also know that you can call our Dementia Connect support line on 0333 150 3456. By calling this number you'll be able to speak to a trained dementia adviser who can learn more about your situation and give tailored information, advice and support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope this helps,

Alzheimer's Society blog team

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How should you react as a caregiver when an Alzheimer’s patient fights with you about taking a shower, telling you that they have already showered that day? Do you correct them?

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Hi Ashley, thanks for your comment.

We have some advice on our website about washing and bathing which you may find helpful, particularly this page on when somebody with dementia is relucant to wash:
https://www.alzheimers.org.uk/get-support/daily-living/when-someone-dem…

If you're still having difficulties, then we recommend calling our Dementia Connect support line on 0333 150 3456. One of our dementia advisers will be able to learn more about your experience and give ideas, advice and support. You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope this is helpful,

Alzheimer's Society blog team

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My father in law has dementia/Alzheimer’s and his daughter told him to the lawyer and had him change his will in her favor. He sounds normal at certain times so can the will chance be contested due to his illness

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Hi Ruth, I'm very sorry to hear about your father-in-law.

It would be best to contact our Dementia Connect support line on 0333 150 3456 to discuss the specifics of the situation. One of our advisers will be able to offer guidance. Please feel free to give us a call when it is convenient.

More details on our phone support (including opening hours) are available here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Alzheimer's Society blog team

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My dad was diagnosed 6 years ago with short term memory loss but unfortunately 4 years ago we got told that dad had Alzheimer’s he was only 56, then a few months later my Nan was also diagnosed with Alzheimer’s and ended up moving in with us. This lockdown has been so hard for us all as Nan desperately wants to go out but being 80 she’s vulnerable and can’t go out (she refuses to go out the garden). Today has been particularly difficult as dad has now forgot who me and my siblings are :(. I really don’t know what to do.

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Hi Emma,

Thanks for getting in touch - I'm really sorry to hear you've been having such a difficult time with your dad and your nan.

This has been a really challenging time for so many people affected by dementia. We've got a section on our website dedicated to coronavirus which you may find useful to answer some of the challenges you've been facing - you can find it here: https://www.alzheimers.org.uk/get-support/coronavirus

In particular, there's some information here on how to help your nan stay indoors: https://www.alzheimers.org.uk/get-support/coronavirus/frequently-asked-…

Regarding your dad's memory problems, that sounds really difficult for you both. We have some information on this page about how to support people with dementia when they forget the names of people or objects: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…

This can be really tough, so you may also find it useful to speak with one of our dementia advisers as well. They can listen and learn more about your exact situation, then offer more tailored information, advice and support. You can call the support line on 0333 150 3456 and find more details about it (including opening hours) here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Hope this is helpful. Take care, and please do call the support line if you need more advice.

Alzheimer's Society blog team

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My 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

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Hi 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

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My 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

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Hi 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.
-
Alzheimer's Society blog team

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My 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

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Hi 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.
-
Alzheimer's Society blog team

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Jennie: 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

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I 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.

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Hi 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

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Why 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!

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His 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.

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Why 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!

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My 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

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The 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.

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My 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.

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Not 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.

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I 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!

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Thank you, every bit of guidance through this mindfield helps.

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