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.

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 helpline 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.

Communication and language

Read more communication advice and tips from our website's 'Get support' section. 

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The process of finding help or information is hard. A flow chart type pack would help. Each day is different. Your great solution no longer works. The learning curve is now a circle. My husband has vascular dementia made more complex by an aneurysm which in turn is affecting his right side. So no simple answers there. I have had eight different physios from various parts of the NHS, all interviewing me with the same questions. All doing nothing that actually involved their skills. Seems a great waste of money. I suggest a handout for basics about your person. Also getting medicines even vaguely right is a nightmare. Departments are not linked. A potential killer. So if each of us wrote a book could a computer sort out all the data and variants into something useful!

My sentiments exactly, thank you

You have hit an important nail right on the head. I tried drawing up a venn diagram of a circle for each organisation that we have to deal with and how they overlap with other organisations. It produced the most useful diagram I have seen but I still find that I talk to so many professionals many of whom do not produce anything useful or they provide what they think carers want, not what we actually want.

Thank you. Incredibly helpful.

I have just read through all these comments, and found it very reassuring to know that I seem to be dealing with problems in much the same way as other carers. Although my hubby has not been actually , verbally, diagnosed as having Dementia, he has memory etc. problems as the result of a severe stroke thirteen years ago, and is slowly, slowly deteriorating. However I try to carry on as normal , with family support at times, although it is really an abnormal, sometimes very upsetting experience.

Thank you for reminding me to be patient. It is difficult at times, but these seven points are really important.
Thank you again.

Very helpful, people often forget the loved one going through dementia and make it about them n their lose. My mum has vascular dementia and even though it's hard to watch her disappearing in front of my eyes, she still my mum. Trying to understand what she must be going through is difficult, I find making new memories n hugs help.

There is so much that is familiar in all these comments and after 4 years I have become accustomed to most of the situations that have been described. I have negligible support from the local health team and no follow-up from the meetings after initial diagnosis. My wife complains of numerous physical pains in her legs, shoulder and arm and headaches as well as a rash which is very itchy. Because she is not able to articulate her problems nothing gets done. I don't know if these pains are real, but they are clearly real to her and this continues to cause more distress than her inability to remember or find words. any ideas ?

This could be due to her medication, my mother has tried a few different medications for her dementia and complained of itching and feeling more confused. My mother also suffers with many other problems so I find myself having to check her daily and knowing when she's in pain from arthritis, ulcerated collits and her fluctuating blood pressure, which she has had several nasty falls from. Check with doctors on side effects of any medication she is taking or speak to your local pharmacist.

The Carers I know who are looking after partners 24/7 would like some real support. Proper respite. The phone lines are brilliant at the beginning but after 6 years of caring for my husband having someone at the end of a phone is great but not really what I want. I will add that the opportunity to contact someone from Alzheimer's group is the only support I've had in those 6yrs. The memory clinic gave up on my husband when they realised they couldn't give him any medication!

I'd like to see 6 weeks paid respite per year for all dementia patients who are cared for at home. Carers could then have some quality time for themselves in order to 'recharge their batteries'.

I do so agree with you. The Government certainly don't realise the difference in the carer's load when they spend 24/7 with the person with dementia.

The many and varied comments are indicative of the problems we,not to mention our loved ones, face daily, if not hourly. How difficult this affliction is to deal with, never mind to live with , is constantly at the front of the mind.of most carers as we struggle to cope with the loss of loved ones slowly disappearing from view.

'What not to say to someone with dementia' was really useful for me. I am still trying to come to terms with & help my mum who has vascular dementia. She still lives in her own home (bungalow) with my 91yr young dad. I find that i can encourage her to do things & get her motivated by using a sense of humour as she still has quite a wicked one at times! We always have plenty of hugs also.
Its hard for my dad sometimes to understand why she keeps asking the same questions over & over again but we get by & I try to expain things to him about her condition in way that doesnt frighten him.

My Husband was diagnosed with mixed dementia two years ago and I feel I am not handling it very well. I get tired with the constant repeating and sad that I am gradually losing the person I married. I try my very best but find myself getting irritated and quite often speak unkindly to him and then feel guilty afterwards as I know that he has not asked for this to happen. I am currently reading Contented Dementia and I feel this will be a help. Any tips on how to remain patient.

Hi Tricia.....my husband has mixed dementia too. We're now into our 6th year with it. It does get slightly easier over time to cope with it all. I think you're going through a grieving process now and hopefully you will adjust.

I find that keeping my husband occupied with things helps. I find him little jobs to do washing up, housework, gardening etc. He also loves the adult colouring books and he will sit for hours colouring in the pictures.

Remember we're only human and we will lose our temper sometimes. It's all very well for the 'experts' to say don't lose your temper but when you live with it 24/7 it's extremely tiring and frustrating.

These are some of the things I use to eleviate repeated questions

Laminated signs on cupboards
A small whiteboard for messages
A clock that shows the time, day, date etc
A bulldog clip on the TV magazine so it's on the correct day.

And anything else that makes my life easier !

I try to see it as as their way of trying to communicate with us so sometimes I'll answer the question and then talk about something else. It doesn't stop the question being asked again. Sometimes seeing items can trigger repeated questions. For instance if my husband can see sweets, biscuits or cake he will constantly keep asking if I want any so I try to keep things that trigger any questions out of sight. If we're out walking he'll keep stating the same thing so I take this as a sign that he wants to talk but doesn't remember how to do it so then I might point out a tree, bird or something even clouds !

Thank you so much Sharon for reply and understanding and very practical tips which will be a help.
Each day is another day. I am sure you agree that this journey we are on is a journey that none of us would chose to make. However we are on it and it is a step at a time and there are so many things to be thankful for.
There is such a good support network in the area we live and my husband attends to groups which he really enjoys.

Yes it's a long and harduous journey and some days can be very difficult.

We just have to make the most of the good times. 😉😉

Amen to that Sharon. Today has been one of those good days. We had a lovely day at a National Trust venue. Blessings to you and your husband.

I am glad I am not the only one that loses their temper at times Sharon. The books that say never lose it seem to me to be a road towards a nervous breakdown. I did not apply for this job and would not have been selected for it and it is injuring my health, so like you I am only human. My only rule that when I do lose it I recover it in the next sentence so it is only as short a time as I can make it. (PS The book I do like is The Selfish Pig's Guide to Caring. Seems the nearest to the real world IMHO.)

Lovely to hear from you John. You are right we are only human. We are on a journey that we would never have chose. So each day is a new day and we will all do the best we can, we can do no more than that.

I have felt encouraged since joining this forum , just being in touch with people that really understand.

Blessings to you and your wife.
Tricia

Hi Tricia, I am sorry to hear that you’ve been struggling with your feelings around your husband’s symptoms. It can be very difficult to keep patience, especially when you’re tired and stressed. I wonder if you’ve ever tried visiting our Talking Point Online Community: https://forum.alzheimers.org.uk/? This can be a good place to get tips and also to offload some of how you’re feeling. If you prefer to talk face to face or on the phone, you could contact your local Alzheimer’s Society office or speak to a Helpline Adviser on our National Dementia Helpline on 0300 222 1122. You might also consider taking some time for yourself. There are some tips in our factsheet Carers – Looking after yourself, which you can read on our website: https://www.alzheimers.org.uk/info/20046/help_with_care/79/carers_looki….

We hope this helps. All the best.
Helpline Adviser

Hi all,
This is my first time reading the various blogs.There is some very useful advice and help from people who do know what it is like to care for someone with alzheimers. Reading the experiences of others has been an encouragement in that I am not alone in having the various feelings that I have; those of frustration, anger, short temperedness, and then guilt for my selfishness and lack of patience and understanding as it is my wife who is suffering this terrible disease.
My wife has post cortical atrophy, a variant of alzheimers which means that as well as suffering confusion, memory loss etc.she cannot see properly although this is not an eyesight problem. She therefore has difficulty eating and cannot carry on with any hobbies, crafts etc. and cannot join in any organised activities and although we go for walks I
struggle to provide any stimulation for her. We did have a carer coming in a couple of days a week, a very nice lady and I know they got on well together but my wife just became totally stressed the nights before she came & ever since then my wife thinks there is someone taking/wearing her clothes. Any suggestions as to how to provide interests for her?

I found the information and advice, very helpful, thank you.

Blog on what not to say most useful, Any info on such matters is very useful since you are really the only one that is living with the patient 24/7

Reading these comments restores my faith. My experience caring for my husband was horrendous, he had dementia ..bonnet syndrome, bladder cancer and was partially sighted I was never offered Hospice care tho i was 8O years old and he was 9 years older. We coped for 5 years and I was offered a Macmillan Nurse for day time only at the end of his life .. it was too late. I will never get over the feeling of a wounded war veteran being so let down by the system. I was told by an Admiral Nurse that I was too polite, those who complained loudest were seen first!

The sad thing is "No one has been cured of Dementia and until we find a cure or treatment it will be difficult to ascertain the real impact on the emotional well being of the patient." Thus as health professionals we are not supposed to lie to patients, although I do tend to agree with some of the tips however dementia patients are real human beings with real human rights and they deserve to be told the truth as often times as they demand to know. Being repetitive is part of the condition so I don't think it is ideal to mislead or change the topic especially when they are telling you that they won't go for activities because their mum will be coming to pick them up.

I 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.

John 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.

Having 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

MASE 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!

Yes 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

Why 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?

Hi, 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.

It 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!

May I quote your 7 things in an article I am writing on Alzheimers Awareness? I would of course give you credit. Thank you.

Hi Robyn,

That's fine to quote from the article, if you could add a link too that would be great. Thanks!

^Kyle

A 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.

Hi,

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!

Hi 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.

Hi 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.

This 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 :)

Forgot 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.

Allways 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!!!!!!.

My 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.

I 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

Hi 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

Excellent 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.

Hi, 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.

Hello 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.

This 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.

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