Dementia Support Line
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.
Audrey Grahame
saysThis page has been a great comfort.. my mum has late stage Alzheimer’s and about to start withdrawing her Aricept.
I’m so worried as they have said she will deteriorate quite quickly - do they mean she will die ?
Anonymous
saysHi Audrey, thanks for your comment. I'm glad the page has been some comfort, and sorry to hear about this situation.
Are your mother’s doctors stopping her donepezil (Aricept) because she is approaching the end of her life or purely because she is in the later stages of AD (which can last for quite some time)? I’ll try to cover both scenarios.
If your mother is in the very late stages of AD, or perhaps has another terminal condition that means she is nearing the end of her life, then the doctors may recommend withdrawing any medications that are not providing a clear and immediate benefit. This is known as ‘deprescribing’ and is a way of reducing the overall burden of medication for the patient, making them more comfortable, and reducing nasty drug side effects. The doctors may recommend stopping donepezil (Aricept) if they think the side effects of the drug are outweighing its potential benefits to her cognitive abilities.
The latest guidelines advise that donepezil doesn’t need to be withdrawn just because someone has late stage AD, even if it’s not obvious they are still benefiting from taking the drug. A recent clinical trial showed that withdrawing this kind of drug in people with late stage AD resulted in a small but noticeable drop in their quality of life over a period of several weeks. So the current thinking is that we should keep giving anti-dementia drugs for as long as they’re needed, providing they’re not causing too many problems.
You shouldn’t need to worry about any drastic effects of stopping this kind of drug though, providing it’s managed by the clinical team responsible for your mother’s care. It shouldn’t generally result in a rapid decline in cognitive symptoms, and it definitely shouldn’t hasten a person’s death. This is not how the drug works at all – it just improves symptoms a little bit but has no effect on the progression of the disease itself.
I hope this helps.
Best wishes,
Simon (Alzheimer's Society)
Haley Petter
saysThis article is helpful for me as well as other peoples because i was looking for this type of live carer service in London. so thanks for spread awareness.
Renata Gorge
saysHi, I am a live-in carer for a lady with alzimers and I could do with some help please. 2 to 3 times a day she wanders out of the house looking for her husband, parents or brother. I obviously go with her and we walk around but I don't seem to be able to distract her from that. Please could I have some advice.
Alzheimer's Society
saysHello Renata,
Thank you for getting in touch.
We’re glad you are able to accompany the lady while she is satisfying a positive need to go searching for her relatives. This activity of walking about also provides her with important exercise that will add to her general wellbeing.
Hopefully, as it’s only two or three times a day, there is little need to distract her. However, conversations about her relatives and photos of them may absorb her as they are on her mind. It is also an opportunity to draw her attention to interesting things to see on the walk.
Failing that, asking for her help with a task may work, as people love to feel that they are still useful and have a positive role in the household.
In terms of advice, there are a number of different ways to gain more information.
You can learn more about walking about from our website: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/wal…
There may be local Alzheimer’s Society services nearby that can offer face-to-face help, advice and support: https://www.alzheimers.org.uk/about-us/contact-us/alzheimers-society-re…
For details of other dementia support and activities in your area, please follow this link: https://www.alzheimers.org.uk/find-support-near-you
You may also find it helpful to visit our online community, Talking Point, as other people may have discussed similar issues. You don't have to sign up to search through the forum, so you could just read other peoples' posts and find out about their experiences. Explore Talking Point: http://forum.alzheimers.org.uk
Call the National Dementia Helpline on 0300 222 1122. Our advisers are available Monday to Friday (9am-5pm), extending to 8pm on Monday, Tuesday and Wednesday; Saturday to Sunday (10am-4pm).
We also have a Live Online Advice service from Monday to Friday (9am–12pm) and Monday to Wednesday (6pm-8pm). Access the service: https://www.alzheimers.org.uk/get-support/national-dementia-helpline/li…
We hope this is helpful, Renata. Please feel free to contact us again if you need any further information or support.
Sveta Brajic
saysExcellent post! I live in Serbia and I had a big problem when my mother was ill. Since we are doing a lot, no one could care about her. We placed it in the nursing home
There she got all the necessary care and medical help.
Patricia Spragg
saysI posted a comment a while back but have got no response so not sure if it actually was seen if someone could let me know if it was seen or is there an error somewhere that needs my attention I would appreciate it.
I'm a Demensia friend & I'm hoping to have some news to share with you that you will find useful.
Thank you
Alzheimer's Society
saysHi Patricia,
Thanks for your comment - sorry that we missed it earlier! It's brilliant that you have become a Dementia Friend and have been engaging with community centres near you. Dementia cafes and memory cafes can make a huge difference to people affected by dementia, so it's great that you had such a good experience on your visit.
You can find more information about dementia cafes on our website, where you can also find more services provided by Alzheimer's Society and others: https://www.alzheimers.org.uk/get-support/your-support-services/dementi…
Thanks
^Kyle
Patricia Spragg
saysMy heart goes out to each & everyone of you wonderful people who care for those who suffer with Demensia your own lives have had to change be your all recognition you have my utmost respect.
I used to work as a Community Resource Lead / Care Coordinator so went out to visit community centres & attended a meeting to understand Demensia & became a Demensia Friend & I'm very proud to wear my badge.
I don't know if any of you have heard of "Memory Cafe's" I was lucky enough to be invited along one day & said I could stay for an hour well 3 hours later I'm still there having the most enjoyable time drinking tea eating home made cakes playing games ,watching old movies ,chatting ,laughing,crying at times but most importantly listening not judging & feeling very humbled & privileged to be in the company of such lovely people & be part of their world & when I left that experience made me realise how lucky I am but more importantly how vital it is to make everyone aware of the difficulties faced day & night by carers & families & that more support is needed in the community.
KathrynTaylor
saysAllways go out I try to get out everyday Stuart cannot walk or talk but he doe's watch other people and take notice. He is in his8th year of dementia! People say how do you cope . Go out l am lucky l drive talk to people talk about dementia its an illnesses not something to be ashamed of. No good stopping at home and being miserable get on with life!!!!!!.
Sid
saysForgot to add - don't talk about, or let people talk, the person's needs in front of them as if they're not there. This infuriated me - it was another way of dehumanising. Highly individual needs get grouped together, e.g. 'yes, they lose their muscle tone so they get very constipated'. No! Not "they". There is only one person here, and his needs are different to someone else's. Don't accept this awful stereotyping from professionals.
I encountered this at every level with medics/carers and had to ask family members not to do it. A person with dementia is still a person. Also a person with dementia does not need 'babysitting'. The awkwardness of dementia for relatives not in frequent contact can bring out lazy phrases that are humiliating to the individual concerned.
Sid
saysThis is a really helpful reminder. I think all individuals with dementia will respond differently to different prompts on different days - certainly it is hard not to make some of the mistakes listed here, when I cared for my dad I often forgot (ironically) not to ask about remembering... but having said that, a lot of our most memorable chats came through a prompt of - what was it like when you little, dad? Or what were we (his kids) like when we were little, or what was your dad like? (His parents died when I was young)... and so on.
But language became completely confusing - words with two meanings, such as 'step' could be very problematic (my dad had LBD so a lot of problems with coordination and mobilising)... i.e. take a step up. But he would frequently ask abstract questions such as 'what do you mean by sit down?' as I would try to guide him into his chair. Counter intuitively he would respond to prompts such as turn-clockwise or anticlockwise rather than left or right.
I list these because it's familiarity with the person that creates connection and understanding - a facet often overlooked by the medical profession. Although it was easy to get caught out. Because he didn't understand where things were in the bathroom, when getting to the toilet I would ask him to 'go all the way over to the window' where the toilet was to save him making wrong turns. One day he got very frustrated with me when he bed bound telling me to go to the window - it was only later that I realised he needed the loo. As a carer these communication breakdowns can be incredibly draining - so it's important to know when to step away too.
Whilst I agree with the 'love/dear' advice, it would bar 90% of the medical professionals I encountered - many of whom could do with some training in both how to talk to those with dementia - and their relatives who care for them. Nursing staff can be both wonderful - and wonderfully patronising.
My dad died just over 2 years ago - but his journey still feels very raw (dismissed by the NHS as a social need). Apologies for the essay - some of which may be helpful in some way :)
Louise laming
saysA Poem about Alzheimer’s
I think this says it all ...
Do Not Ask Me to Remember
Do not ask me to remember,
Don’t try to make me understand,
Let me rest and know you’re with me,
Kiss my cheek and hold my hand.
I’m confused beyond your concept,
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me,
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different though I try.
Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me ’til my life is done.
Jane Kiel
saysHi,
Thanks for the beautiful message. My mom was diagnosed with dimension and I have bipolar disorder. I'm trying to be there for her but I'm not strong enough. I haven't slept well and I can't handle this difficult. I'm afraid I am going to end to the hospital. Thanks for your support!
Alzheimer's Society
saysHi Jane. Feel free to contact our Helpline team if you would like information, support or advice about dementia. You can call them on 0300 222 11 22.
DEREK COWAN
saysHi Louise,
Sorry I'm only responding now.
What a really heart rending poem.
As a carer it makes me feel very guilty that I don't always see it from my wife's perspective and that I do get short tempered and impatient at times. Hopefully it will help me to be more understanding.
Thank you for sharing it.
robyn engelson
saysMay I quote your 7 things in an article I am writing on Alzheimers Awareness? I would of course give you credit. Thank you.
Alzheimer's Society
saysHi Robyn,
That's fine to quote from the article, if you could add a link too that would be great. Thanks!
^Kyle
E Webster
saysIt would be nice if we didn't have to say, "After December, you won't be getting your usual visitors from The Alzheimer's Society because someone in the hierarchy has decided to axe the visiting service.
Talk about betrayal!
E Webster
saysWhy is The Alzheimer's Society deserting people by abandoning its highly successful home visit service, which has been such a useful - and much-needed - aspect of its work?
Alzheimer's Society
saysHi, thanks for getting in touch. Please could you provide a bit more information about the service you’re concerned about including its location by emailing us on [email protected] and we will look into it and get back to you. Thanks again and all the best.
George Hill
saysHaving read the letters may I say that the M A S E (monthly Alzheimer’s support evenings) in Staffordshire have given out much of the advice that you have said and helped me understand.
This was before and since my wife of 60years was taken into a care home, I have found out that it is best to humour her and tell her that I love her, and that her family are on holiday also that our home is being renovated and not safe to be in.
I also say that I work nights and she is safer in the home where she is being looked after while I am at work.
This all seems to work out ok
Sharrontr
saysMASE is absolutely brilliant ! There should be more groups like this available to everyone.
We should all be able to access Admiral nurses too.
Anyway our doctor told me in the week that you don't die of dementia!
George Hill
saysYes the MASE is a great organisation, not only for the information and entertainment they provide but for the chance to make friends with people who are on the same journey
People you can talk to who understand
IT IS GOOD TO TALK
John Ellis
saysI came across my worst experience of Dementia Unfriendliness last week.
My wife, who has Alzheimer’s, was called for the regular breast X ray. She has never enjoyed this (who has?) but I got her to agree to go with me to the mobile unit.
When we got there I was told I could not accompany her in the waiting room as no men were allowed on the unit. I showed my ‘Carer’s Card’ and was grudgingly allowed in and from that moment completely ignored. She was immediately taken into the small office, the door shut, and asked various questions. I had gone along to ensure she gave correct information but being excluded could not help.
Having been made to feel like a ‘dirty old man’ I did explain to the two women waiting that my wife had Alzheimer’s and that was why I wanted to be there. They were most sympathetic. Their privacy was not ‘invaded’ as there is a separate changing room and X-ray room.
I do realise that the staff concerned could not know that before I retired I was an NHS scientist and part of my work involved visiting maternity wards and discussing with Nurses and mothers-to-be their requirements. However I do think that experience allows me to judge that carers should be allowed in the X ray units just as we act as chaperones when our charges are examined by doctors and surgeons.
Tricia
saysJohn I totally agree with you. My husband has mixed dementia and for appointments he needs me alongside of him. He has difficulty with processing and remembering information. I am sorry you were made to feel this way and it proves that while we have come a long way there is still much ground to cover,
Blessings.