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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.
janet brunetti
saysThis was very helpful for me as I am a activitie co ordinator working with dementia residents
It has made me to think before I speak
Thank you .
R N Srivastava
saysThe Alzheimer Society is doing great service educating Care Givers & others right ways of communicating with Dementia patient.Having been the prime care giver to my dear & late wife,during her about 10 years troublesome years I heartily appreciate the value of advices like the one you disseminate.though my wife passed away 4 yrs ago I still read your e mails carefully & disseminate to care givers & young medicos.
Val gould
saysHow useful all the above data had been for me we all need help its hard to see the valorld through their eyes
marie sweetnam
saysThe day the diagnoses is made, is the start on a road you two have never walked on before - you now walk 180 degrees in the opposite direction. Walk each day with the motto of A Day at a Time.
Although it is exhausting to live each day, try and 'hear' the same question already asked several times as though it is the 'first' time you hear it, and so stay calm and answer calmly every time.
But I wish I knew what to do about losing my voice and sounding like an old pipe smoker!
Alexandra Reed
saysGreat advice, thank you
Alex
Anne
saysSome useful information. I read A Contented Dementia and found I was able to use the suggestions to help me communicate with my sister in law. We had some very happy times together and we became close friends over the course of her illness. I never challenged her version of events, that was the way she remembered things, and that was good enough for me. I was very sad when she died, but happy that she had not deteriorated and lost her sparkle.
Jane Evetts
saysI relate to alot of what's been said my mother loves little children as soon as she she's a child a lovely smile appears also music & singing I or one of my sisters will say come Jean let's have a dance. Just at that moment it's as if we have the old mom back. At first we had tears in our eyes just seeing that smile. We have bad days but most of the time she is not to bad. I also recommend nutrition Fortisip drinks my mom likes strawberry flavour. Alot of times she as gone off eating & drinking. Some one told us about these drinks. We know its these energy drinks that keep her going. She also as a memory tablet every day we also think that helps to. She knows who I am & says were Jane & for my dad her husband it's weres dad . She also as a cuddly toy we give her to go to bed. She seems to find comfort loving it as she falls to sleep.
Alan
saysI find that my best way to deal with communication problems is simply to say "don't worry, I know exactly what you mean and I fully agree". That always puts my wife at ease and then I change the subject. And when it's time to leave the care home, it's always "Gosh, I've got to go and collect my prescription- see you soon." Problem solved with no anxieties.
Colin Coulson
saysI found your article very interesting. My Wife was diagnosed with Alzheimer's just over 5 years ago. It was heartbreaking earlier this year to pass my Wife (after 56 years of marriage) over to Cares at the Residential Home, but I was totally mentally & physically exhausted. In those 5 years I received very little advice or information from my Wife's Psychiatrist, and the Community Psychiatric Nurse. I honestly believe that at the diagnosage stage, Carer's and Family should be given a File containing all the relevant information that you need at that stage and to cover the further development of the disease. I only learnt what to do through a friend who's Husband suffered from Alzheimer's. I now look back and and think of all the things I shouldn't have done, and lots of things I should have done for my Wife to make her life more comfortable. My Wife now has the loving care of the Staff at a Residential Home, but the Psychiatrist has only visited my Wife once in five years and continues to change her medication, sitting in his Office 10 miles away, and the C.P.N. only visits if we indicate that we are going to lodge a complaint. Please could you put more pressure on Mental Health Teams to provide Carers the required information from the onset, thank you
SANDRA PEMBER
saysSpot on, Colin .
Jeanette
saysCouldn’t agree more, my Dad is suffering and so stressed looking after my mum. No help except from family. Mum won’t stay in and is constantly wanting her own way. Swears at us , witch she never used to. It is upsetting for all the family as sometimes you just don’t know what to do. Help!
Alzheimer's Society
saysHi Jeanette.
Thanks for getting in touch - it sounds like your family is going through such a stressful time. If you require any advice or support, our National Dementia Helpline advisors are available on 0300 222 11 22. The phoneline is open Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm). We hope this helps.
Gillian Sinclair
saysHi Jeanette ...so sorry you are going through this, we have been down this road ,@ I wish I had the knowledge 8 years ago that I have now ,, my Dad was trying his hardest then to care for my mother... For two years he @my sister and l struggled to understand what was going on ..mum was not really told anything but her condition was that of .....lewy bodies dementia.we sadly lost Dad six years ago he had massive stroke and I'm sorry to say that my mothers illness wore him out. And he payed the heavy price with his life ...so my advice to you is get help insist that she goes into a care phasility... because looking back I would have made that happen..... if we had ....Dad would probably still be here now ...my mother is still alive in a nursing home in last stage dementia and I pray for her to pass peacefully now ...I hope you take from this and be strong because you will loose your Dad if you don't @ what good will be his noble gesture. Then !!!!!If he dies like my Dad and your mother carries on in an awfully demented state ... regardless....it is hash to here but this is a cruel illness and it shows no mercy to anyone... least of all the caregiver ...good luck be strong and get help ...💋
Judy benson
saysI strongly recommend the book Contented Dementia for more on this. They point out that asking any questions at all can be extremely distressing, yet care agencies and medics are concerned about getting consent, and the assessment process for getting a diagnosis / reviews is a questionaire! We have stopped any further reviews for our mum as it was just too stressful for her. We need a much more sophisticated system to deal with this issue.
zoe
sayscontented dementia is a wonderful book and has been outlining this sensible, empathic approach for many years - great to see others are now catching up with their thinking
Richard Boamah-Asare
saysHow grateful I am, for such rich resource.
Olga Fairweather
saysI found the info very helpful - I am going to visit my sister and brother in law (who has dementia) and found the notes very helpful. I have taken a copy for my sister as I am sure it will help her when talking to her husband.
Lorayne
saysYou should never argue, if I say its black even though its red its black, agree don't disagree, don't tell me I've said the same thing more than once just act like you have heard it for the first time, don't explain situations I will work it out for myself, never correct me, don't expect me to feel emotions like you do
Ann Johansen
saysHow right you are Lorayne. We just live in slightly different worlds. Your world is as valid as mine, but a smile is a smile in any language, and my sister's smile lit up the room every time I visited her. Words aren't always necessary. God bless. Ann.
Kay
saysThese are so spot-on! I would also like to see things not to say to carers. My top 5:
1. Have you tried leaving notes (to remind the person with dementia)? Carers are not stupid. We are resourceful people, and we have probably tried everything! People at the early stages of dementia may find notes helpful, but any notes we leave just get ignored or thrown away. As frustrating as I find these kinds of unhelpful suggestions, I haven't asked friends not to suggest things, because just occasionally someone comes up with a 'lateral thinking' solution that didn't occur to me! It does mean I have to listen patiently as well-meaning but totally unworkable ideas are offered.
2. I hope I have a heart attack/I would buy a one way ticket to Switzerland before that happened to me. Yes, I have actually heard this from otherwise kind, caring friends. However frustrating and cruel we find this disease, we do not wish that our relative was not with us. We all fear this disease happening to us or to someone we love, but this does not mean that the life of a person with dementia is not worth living. Also, even if you accept euthanasia as an ethical choice (and many don't), at what point do you decide? The first time you blank somebody's name? By the time someone's dementia has progressed to a serious enough level that this option would be considered, the person is unlikely to have capacity to make their wishes known. People do not choose to get dementia. It is not a sign of weakness of character.
3. Well-meaning advice to 'just accept' whatever new problem has arisen as inevitable. As one GP put it, 'they just tend to fade away at this age'. There are some symptoms and problems that we really can't solve. We can't stop the progress of the disease, nor indeed the natural ageing process. But that doesn't mean we are not going to work to give our relative the best level of care achievable, and make their environment as safe as possible. Accepting that someone will inevitably die of natural causes is not the same as accepting neglect.
4. 'You are choosing to care for your relative. If it you are so exhausted, you should get social services to take over'/'I thought that GPs were managing dementia care now'. Whilst this may technically be a possibility, the reality is that the care system is broken in many parts of the country. Social services left one of our elderly relatives in a dire, dangerous situation, and we morally had no choice but to step in. Also, caring is exhausting and carers must find ways of looking after themselves, but that doesn't mean we want to give up. I found looking after my kids as babies and toddlers exhausting, but that didn't mean I wanted to put them in care! The time may come for someone to move to a care home, but this is an individual choice for every person with dementia, and their carers. Also, 'getting carers in' is often a good choice, but this in itself requires choosing, managing and co-ordinating the care. Non-carers don't know that most GPs do not pro-actively manage dementia cases, and that it takes a lot of organisation to liaise with GPs, District Nurses and Social Services, and private carers, none of which seem to talk to each other.
5. Miracle cures for dementia. Like other progressive and chronic illnesses, there are some exciting developments on the horizon, and there are some things which may work for some people to slow progression of the disease, or to temporarily alleviate symptoms. Music therapy is known to be good for some people with dementia, but for some people with hearing loss, this may be less effective. Exciting medical cures are likely to come too late for the person we are currently caring for. Alternative therapies may be helpful in managing symptoms, but they are not going to halt the disease.
Alan
saysKay's blog is very useful, particularly for those who are relatively new to this situation. Especially important in a residential setting (providing you have properly researched the care home) is not to question the care staff. They are trained and experienced. Instead, take advice from them!
Lynne
saysNot so easy to research the care home. My uncle has been in, what was thought to be a very good care home, for the last four years. The staff have changed so many times that no-one seems to know them. The original staff were very welcoming and friendly but the new staff are completely different. In four years the manager has changed four times.
Elizabeth R Green
saysThank you for taking the time to tell us all this. This is one area that, to my mind, needs more attention. Who cares for the carer. Sometimes we can make such silly remarks, and we are just trying to give support. My friend has promised me that if I say the 'wrong' thing I will be told, I promised I wouldn't take offence.
Alice
saysThank you so much, as carers we do our very best, no more no less.
Many of us have our own health needs too.
I think the lack of coordination is a real problem and costly to.
Pauline Ashton
saysAll excellent points.
Kay
saysReply to point 2....I have said my husband would be better off dead, I am not sorry I said it, I am so devastated by this horrible discease happening to him. He got pneumonia in January 2017 and he is in a nursing home already. I want to take him home and see how we get on, I desperately need advice
zoe
saystry the live in care hub www.liveincarehub.co.uk they may be able to help you
Tricia
saysSo sorry you are feeling like this Zoe, I do hope you are getting some support. It is such a cruel illness. How long is it since your husband was diagnosed?
My husband is two years into his dementia journey so I have no idea how quickly it will deteriorate.
We try to make the most of the days given to us.
Many blessings to you both, Tricia
John Ellis
saysOh I so agree with you. All my local friends have disappeared as I had to give up activities, those connected with their churches were the first to go.
As for things not to say to carers my top two are 'I wasn't thinking' and 'I didn't think'.
There they are not bothering to think when my wife would love to be able to think.
Anne Heath
saysThank you this has been really helpful, I am waiting for a diagnosis for my dad and feel as if I have a lot to learn in a short time.
‘What not to say to someone with dementia’ – Sunshine
says[…] ‘What not to say to someone with dementia’ This easy-to-read short article tackles head-on some of the more painful questions that are put to people with dementia. It covers statements such as these: ‘I’ve just told you that’ or ‘Your brother died ten years ago’ or ‘What did you do this morning?’. For each, it explains why this might pose difficulties for the person with dementia, and what to try instead. It comes from the Alzheimer’s Society UK. […]
Susan
saysWe haven't been given any information about dementia and don't know how to deal or cope with it, my mother in law has vascular dementia and have seen a lovely lady at times look so confused, we don't know if she knows who we are or what she remembers, heartbreaking
Alzheimer's Society
saysHi Susan, we’re sorry to hear about your mother-in-law's recent diagnosis. Please do contact our Helpline team if you would like information, support or advice about dementia. They’re ready to talk to you on 0300 222 11 22 and you can find out more about them here: https://www.alzheimers.org.uk/info/20012/helpline Alternatively, you can read lots of information about vascular dementia on our website here: https://www.alzheimers.org.uk/info/20007/types_of_dementia/5/vascular_d…
Sandra
saysThe support and simple advice from Alzheimers society is invaluable. My first carers meeting was a source of strength and inspiration.One day at a time. The simple advice on communication is sometimes hard to put into practice but it really works. Reach out si mych warmth us waiting
jo warner
saysim so pleased that there is now the help family & carers need! when my mum was diagnosed i wasnt sure where to turn to! i originally became a dementia friend because of her! it is very hard to deal with most issues that it causes & the reminders of what to say & more importantly not to say is helpful (if not almost impossible to stay within the boundaries) i had my concerns with my mum months before anyone else noticed what was going on, & it was thanks to the hospital that they recognised the issues as they were with her longer than she was at the g.p's doing the tests which turned out to be a very good day for her!! my fondest memory was her telling anyone who could hear her that " she says ive got dementia but i dont!" & her sneaky way of "having a drink but not actually drinking!" which sadly led to her demise
Pauline Ashton
saysI can highly recommend Contented Dementia recommended to us by our Admiral Nurse when my mum was diagnosed. It explains how, why and what to say to someone with dementia. It helped me a lot. Take care.
Clare
saysThat book was also a huge help to us as a family on how to deal with someone suffering dementia
Initially borrowed from the library and then I bought it as a reference book
Debbie
saysHello my Mam had vascular dementia, it was 12 years since she was diagnosed and 7 years since she passed away. I wish I knew then what I know now through dementia friends. I found it hard not to get upset because my mam didn't, she was unaware of her dementia, I could tell In her eyes she was content and happy. She didn't know my name but she lit up when I walked in. I will never really know what she was thinking but knowing I always left on a positive and with tonnes of hugs and kisses helped me and her. I can only go on my experience but try to be positive even when it's really tough at times, you can leave her smiling on the inside. Take care.
sharlene ayres
saysHi I live Burnley I was on depokote I'm 54 mental health and calico housing making sure I have a brain bug please can you help me
Alzheimer's Society
saysHi Sharlene, sorry to hear you've been experiencing these difficulties.
Have you already spoken with a GP? This would be a good first step if not, while you can also contact our helpline for advice. Please find details here: https://www.alzheimers.org.uk/info/20012/helpline
If you're worried about your memory, you may find the information on this page useful: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/wor…
It may also help to read about dementia symptoms and how the diagnosis process works: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis
Hope this is useful -- please do get in touch if you need any advice or support.
Thanks,
Kyle