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.
Gordon (John) Dennis
saysVery useful especially for giving instructions and talking about her late parents, brother and our daughter.
Mandy Ross
saysThank you, some helpful ideas here
Jackie
saysIt,s ok to say don't say this or that when you care for someone 24/7 its very difficult not to say things
Nae
saysYes, we are not saints its very very hard
Patricia
saysIt'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.
Sarah
saysShould 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.
Alzheimer's Society
saysHello 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
Sarah Heatlie
saysHelloy grand mother has just passed away and we are yet to tell my grandad who has vascular dementia. What is the best way to deal with telling him, they hadn't seen each other for almost 2 months due to both being in different hospitals unwell. He is also due to move to a nursing home today so we thought it was best to let him move before telling him. We are so worried about telling him as he is very poorly himself. Any advice would be greatly appreciated. Also we are unsure if he would cope with attending her funeral etc
Avril
saysYou 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
Thomasena Hanley
saysGreat advice Patricia
Emmie
saysI agree. Every day I have to deal with mum and her dementia and every day is gets harder and harder. It's the cruelest disease ever. It broke my heart tonight when mum said (crying), "I just want to feel like I used to". So she has some slight awareness of her condition yet it's short-lived :( Dad has Parkinsons and has to care for mum 24/7, I do what I can (I work full-time). I have to talk to her on the phone most night (as dad rings and asks if I can calm her down). She wakes early afternoon nap (and has Sundowning) and thinks she is not in her home, asks for her mum and is getting so angry when dad explains she dies in 2001. Dad has taken my advice in telling a lie , to save her anguish, that she is in Spain, or out shopping; she'll ring you later". That has worked now and then but sometimes she knows she is no longer here - how can you be consistent here? Mum tries to leave the house all hours of the night, she has gone next door many times for help (to her neighbour of 43 years). Dad is obviously trying to protect her and stopping her leaving but she then fights with him, cries, swears and calls him awful names. We don't want to see her go in to a home, at least not yet. Dad says he can manage at moment, but it's not good for dad - he gets 2 hours, maximum, sleep a night and it's been that way for the past year. Talking on the phone to her, I do talk about past memories and current things, I talk to her about everything we have shared over the years - what else can you possibly talk about for an hour on the phone? This is so incredibly heartbreaking.
Darcy
saysHi Emmie -
I have a situation somewhat similar to you - my grandparents live together. Grandma is beginning to show signs of late stage dementia. Papa has COPD and is on oxygen full time. My aunts, uncle, dad and I take care of them and Papa is w her 24/7. Just like you, we are all doing our best to care for them as they did for us for so many years. You sound like an awesome daughter. :>
My aunt has stage 4 ovarian cancer that spread to her stomach. We found out last August when Grandma was in better shape so it's sort of in her long term memory. When she begins to recall that my aunt is ill, we keep it simple and don't use "scary" words. "Aunt Kate still goes to the doctor for her stomach problem." "The Dr. is helping her."
Grandma also asks me all the time if something is "wrong" with her. She will tell me that she knows something isn't right and she shouldn't "be like this." She has even told me that she just wants to die (she said that on Christmas day to me). I haven't figured out how or if I'm responding to her properly when she says those things. It breaks my heart and I wish there was more that I could do. I can't imagine how she must feel inside.
All the best to you and everyone who is going through this. Thank you for letting me share.
Sincerely,
Darcy
Margaret
saysIt's so hard to remember all these things not to say but very valuable to learn .