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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Thank you, some helpful ideas here

It,s ok to say don't say this or that when you care for someone 24/7 its very difficult not to say things

Yes, we are not saints its very very hard

It's very easy for people to judge & sometimes criticise others who are coping with the most heartbreaking situation.
You are doing your best & yes at times I'm sure you feel you could do better but you have nothing to reproach yourself for the task you have undertaken was not by choice so just carry on doing the most wonderful thing to the best of your ability no one should tell you what not to do but should be there to support you.
I admire you & send you best wishes & hope you can continue to find the strength to carry on.

Should you remind people with dementia about their partners ill health? Or will it continue to upset them? My grandad has dementia and my granny is currently in hospital with a broken hip and we just found out she has cancer. Each time I mention it he has forgotten and seems very upset and I want to do what is best for him but feel he needs to know.

Hello Sarah. We are very sorry to hear about your grandparents. This is a difficult time for both of them, and for the family.

When you told your grandad about his wife’s illness, he was naturally upset. However, because of his memory loss, he may not retain that information. If you explain again, it could be like the first time he has heard the news, and he is likely to be as distressed as before.

The kindest thing might be to respond to his asking after her in a different way. You might say something a little more gentle, such as ‘She is looking forward to seeing you’, or ‘She has had to go somewhere, but she’ll be back soon’.

Finding a more hopeful response is sometimes referred to as compassionate communication. This thread from our Talking Point forum might be interesting to read: https://forum.alzheimers.org.uk/threads/compassionate-communication-wit…

We hope this is useful. Please call the National Dementia Helpline on 0300 222 1122 for further information, advice or support. Our advisers are available Monday to Friday (9am-5pm), extending to 8pm on Monday, Tuesday and Wednesday; Saturday to Sunday (10am-4pm).

Wishing you the best at this difficult time.

- Helpline Adviser

You brought another flood of tears when reading your blog it can be very lonely at times even if you have the support of your family I am looking for some wrist or foot trackers if you know of any contacts x

Very useful especially for giving instructions and talking about her late parents, brother and our daughter.

We 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

Hi 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…

The 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

im 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

I 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.

That 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

Hello 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.

Hi 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

Hi 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

[…] ‘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. […]

These 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.

Kay'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!

Not 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.

Thank 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.

Thank 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.

All excellent points.

Reply 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

try the live in care hub www.liveincarehub.co.uk they may be able to help you

So 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

Oh 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.

Thank 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.

You 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

How 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.

I 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.

How grateful I am, for such rich resource.

I 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.

contented 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

I 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

Spot on, Colin .

Couldn’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!

Hi 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.

I 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.

I 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.

Some 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.

The 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!

Great advice, thank you
Alex

How useful all the above data had been for me we all need help its hard to see the valorld through their eyes

The 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.

This 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 .

We all have phrases that upset us when we hear them. Someone I know can't bear 'to die for' as she had been widowed. My wife has AD and her best friend will often say 'I didn't think' or 'I was not thinking', these drive me up the wall. My wife would love to be able to think and there's her friend just not bothering to think.

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

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