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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.
Janice
saysThe 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.
Doris Anderson
saysReading 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!
Peter Phipps
saysBlog 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
Roma Busby
saysI found the information and advice, very helpful, thank you.
Tricia
saysMy 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.
Sharron watson
saysHi 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 !
Tricia
saysThank 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.
Sharron
saysYes 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. 😉😉
Tricia
saysAmen 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.
John Ellis
saysI 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.)
Tricia
saysLovely 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
Alzheimer's Society
saysHi 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
Derek
saysHi 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?
Marion Beamish
saysMy first time reading these posts too, Derek. Gosh, lack of vision would certainly add to your wife's distress and your difficulties. Activities?Music springs to mind first. A petting zoo or any contact with animals. Soaking in a hot pool. Visiting a pharmacy or department store and testing perfumes. Any activity involving the other senses especially if it is relaxing and you would also enjoy it! What do the blind foundation provide in your area?
I live in New Zealand and my husband is in a rest home (nursing home in the UK). He was diagnosed with Alzheimer's 10¹/2 years ago. He's a sweetheart and I'm lucky that he still recognises me. It seems that government provision for home carers is better here than in the UK, and the Alzheimer's Society is wonderful.
Tracey Gibson
says'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.
Bill Frampton
saysThe 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.
Sharron watson
saysThe 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'.
John Ellis
saysI 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.
Terry Gashe
saysThere 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 ?
Sue
saysThis 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.
Val
saysVery 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.
Hod Birkby
saysThank you for reminding me to be patient. It is difficult at times, but these seven points are really important.
Thank you again.
Hilda.
saysI 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.
Carole McEwan
saysThank you. Incredibly helpful.
Linda Starkey
saysThe 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!
Lesley Reeves
saysMy sentiments exactly, thank you
John Ellis
saysYou 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.
John Ellis
saysWe 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.