Dementia Support Line
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.
Rosemarie Keane
saysMy brother has recently diagnosed dementia. His wife passed away in July. This has thrown him for a total loop, Doesn’t remember that she died and every day around 4:00 he begins to get anxious and tries to call her or wants to know where she s. It is devasting for him and for his family to tell him everyday that she is gone. Is their anyway we can avoid telling him again & again. Any suggestions will be appreciated
Ann Wood
saysIt is not helpful for him to remind him of her death only distressing. Is there somewhere she may have gone ie shopping or hairdressers that would reassure him that she is not lost. It feels uncomfortable as if you are lying but it is kinder than the truth which is painful and not retained.
Thinking of you in this sad situation
Julie Lane
saysThose with dementia do not need to be grounded in reality, and my favorite term I've heard for that suggestion of telling them their deceased loved one is elsewhere (or better yet, redirecting) is "therapeutic lying." It just agitates them to learn this news over and over again
Sarah Lambert
saysThis is great but if only it was printer friendly. Its just a narrow strip down the middle of the page and not great to print and share with my mum. It would be great if you could put a link to a pdf of this.
Alzheimer's Society
saysThanks for your feedback Sarah. Our site is designed to be mobile friendly as the majority of our readers view it on mobile phones, that's why it is in the single column layout. However we are hoping to add a printer friendly function soon.
Our dementia information pages are available as PDFs to print, you can download them by clicking 'Save this information' if you wish: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…
Thank you
FP
saysHello ,
First of all thank you for taking out time to read this ,
My grandad who is 78 of age
Is in the stages of dementia
He remembers who I am and who the members of the family are , but if you ask him what he ate In the morning he would have no idea ,
He has always been a gentleman,businessman a very strong character man ,
Now to see him like this is very heartbreaking because when I was young I used to see him as a very successful man,
He has travelled the world been everywhere,
But now he doesn't go anywhere just likes to be in his room and has no interest In the outside world.
He does not like taking a shower and has avoided it for some time ,
What is the best way round this
I am his grandson I am 26 years of age
I just feel like I’m not doing enough to help him ,
Any thoughts or opinions on how I could help him.
As he was there for me when I was a baby a teen.
Thank you once again
God bless.
Anonymous
saysHello FP,
Thanks for your comment. We're very sorry to hear about your grandad - this must be a really worrying time for you and your family.
Please know that you can always call our Dementia Connect support line on 0333 150 3456 for more information, advice and support specific to your grandad's situation. More details about the support line (including opening hours) is available here: https://www.alzheimers.org.uk/dementia-connect-support-line
We also have an online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support. This could be a great place for you to receive helpful suggestions from other people who have been in similar situations: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
In the meantime, we have information on our website about daily living (including washing, bathing, dressing, etc) with lots of practical advice, which you may find useful: https://www.alzheimers.org.uk/get-support/daily-living
We hope this is helpful,
Alzheimer's Society blog team
Jennifer Cotrupi
saysI’m so sorry about your Grandad. It’s hard to watch, but there is so much you can do to make his world ok and along the way your time with him can be more rewarding too. My Mom passed a year ago and lived with Alzheimer’s for many years that included the passing of my Dad and a transition to a new living situation. My Mom had always showered every morning her entire life and then One day didn’t want to. It helped when I understand that she became afraid of the Looking up and the water coming at her Face. She just didn’t understand it. At first, it helped to just be near her and to talk her through What was happening in a calm and confident voice. She trusted me and I worked hard to never lose her trust in me. It doesn’t mean I didn’t mess up a lot, but when I did push her too hard, I noticed how she was responding and getting agitated. I stopped gave her a little space and then came back and tried a different way or let it go for a bit. She Also loved washing her hands with warm soap and water or the feel of a warm face cloth across her skin. Sometimes that was all we could get for that day. Be sure to start away from his face so it doesn’t startle him. Pay attention to what you think he is ready for and when it starts to go awry. That will give you clues to what he is capable of that day.
I tried to always set the tone for how our time together would be. If I was upbeat and happy so was she. I wasn’t always able to muster up that energy, but whenever I could it paid off. When I greeted my Mom, I tried to use a tone that told her I was one of her very special people and she was safe with me, she always received me that way. I stopped worrying about her knowing my name or my connection to her, I just focused on helping her understand that I was her safe space, someone that would share in laugh or a hug. If I left the room for more than a few moments that she may have forgotten that I had been there I would return with the same greeting of “ HI MOM! IT’S JENN! With excitement and love in my voice. Her eyes would light up again as if she was having another visitor and something wonderful was about to happen. Sometimes during our visit she would ask me who I am and I would explain to her that I was her daughter and how special that was. I would use that moment to explain to her that she raised me and what she taught me and the look of pride on her face was such a gift to me. She couldn’t believe that she had done such an extraordinary thing. I set the tone for her being happy and that the day or moment was full of possibilities, she followed along every time! It was wonderful fun for me to try to Get that reaction from her. I found simple things to do together like color or fold paper flowers. I would do it along side her, I noticed she watch what I did for queues as to what her next step was. I went at her pace, always keeping her dignity and pride at the forefront of my mind. Later in her disease that became less of an issue and she was happy to have me help or explain something. Early on she needed to believe I didn’t know she was struggling and setting her up to succeed became a goal of mine and made my time with her more enjoyable. It removed all the anxiety of her being with people because she wasn’t trying to hide her deficiencies she was just being with me.. I enjoyed finding things to do with her that made her laugh and distracted her.
I am so sorry that this is the hand that you were dealt, but I love that you are trying to understand your Grandad. You will be a blessing to him as he navigates this disease. God bless you, I apologize for rambling, but I hope this is in someway helpful.
Jing Li Sidey
saysMany thanks for this page of communications as I am a health care assitant in a suggical ward, although we do not have many dementia patients but when we do I can gain many knowlegde and ways to care for them...
Lisa Robinson
saysHaving had a father with dementia, I'd re-iterate ALL of the suggestions re communicting with them. They are vital suggestions. I note that in Care establishments and hospitals,unfortunately, many/most of the carers/nurses etc do use the wor "love" or even "darling" or "sweetie". This is seriously patronising and infantlising. It is SO important not to do this and also, I would add, importantly, NOT to talk over their heads, as tends to happen too (ie if two carers are walking with someone to help them). All the suggestions in this article are all extremely important for the well-being of the person with dementia and should be the focus of all trainings for carers/nurses, doctors, relatives..
Vanessa Young
saysYou are doing what a charity should do and are surely a model others could follow.
Angie Matthews
saysHas anyone else got experience of dementia suffers having hallucinations, my 83 year old father who I care for is suffering from these on a frequent basis, he is convinced that there are people in his house, he keeps dragging chairs from room to room for them to sit on ?..
Linda Blythen-Hall
saysMy mother in law believes there are people living upstairs in her house. She also makes food for the children too.
Her eldest son is 70 and her youngest is 59.
She also is quite adamant she’s been out on journeys and walks.
Debra Goate
saysYour father believes that people are in the house. To him they are real. Acknowledge that he sees them and try distraction techniques. Confronting him, telling him they are not there or not real will distress him. He probably has a type of dementia that produces hallucinations. Talk to the GP as medication may be able to help.
Winsome Muir
saysHi, My father had some hallucinations - he said there was a black cat in the house. It was not ongoing just a few times. We told him it was ok and that the cat was doing no harm. He seem happy with that.
I've met people living with dementia who have ongoing hallucinations and what I've heard dementia advisors say is to acknowledge what the person is seeing. Your response can go someway in reassuring the person seeing the hallucinations that its ok to ignore the 'visitors' because they will eventually go away. Sometimes if its impacting on the person with dementia life in a negative way or it's a frightening hallucination then it might be helpful to seek your doctors/health care worker for advice. I think dismissing what the person is seeing is never a good thing.
Sue Smith
saysMy 83 year old mum who has Alzheimer’s was doing exactly the same saying there were people coming and going in the house, asking for us to stop inviting them round and even shouting at my elderly father when he didn’t offer them a cup of tea or make a meal for them. It was very distressing for her and making her very agitated which was upsetting to see and meant my dad couldn’t cope. I contacted our community psychiatric nurse who said we needed to check that my mum didn’t have a UTI infection as this can make the Alzheimer’s worse (she didn’t) so they tweaked her medication and the hallucinations have stopped. My mum is now in residential care due to her deterioration and my dad’s inability to care for her at home any more.
Samina Khan
saysHi, this sounds very similar to how my dad is suffering and I am quite concerned at my 72 year old mother is not coping with caring for him . Could you advise how best to get my dad in a residential home where he can have the right treatment? I fear that the current Covid impact will delay matters and in the mean time I’m concerned by my mums mental health
Anonymous
saysHello Samina,
We'd recommend taking a look at our advice on 'Care homes: When is the right time and who decides?' - https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes… There's information and advice here that may help you and your parents during this difficult time.
Additionally, you can call our Dementia Connect support line on 0333 150 3456 for information and advice on residential care. Our dementia advisers are here to listen and provide support when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this is helpful, Samina.
Alzheimer's Society blog team
Steve Fawbush
saysYes my dad suffered from hallucinations often during his later stages. He would see things that weren’t there and often times in the evening he would not recognize his wife of almost 60 years and would call me and ask me to come get him and take him home. It was tough on mom and so sad to talk with him about.
Ros Ryan
saysThere is a type of dementia called Lewy Body dementia. The main differentiator between it and Alzheimer's is that with Lewy Body the patient has hallucinations. Sometimes patients with Alzheimer's develop Lewy Body dementia as well. The hallucinations are usually people standing silently. Patients often recognize the people and will converse with them. It is very unnerving when it first happens. It helps if you understand that Lewy Bodies are actual small structures in the brain. Researchers think the structures trigger memories in the brain and this activates vision so the patient actually sees the person they remember. If you ask the patient they can describe these hallucinations clearly. It can be very upsetting for relatives if the patient is "seeing" people who are deceased, however it is often comforting to the patient particularly if they "see" a deceased partner.
So what do you do? I would get your dad to ask them if they want to sit down. You may find that this is enough to avoid him moving furniture. You could also say something like "they don't need to sit dad, they had a long car or bus ride so they want to stretch". Good luck with it!
Dennis Gill
saysThere are no hard or fast rules each case is unique anything done for them is appreciated as long as they are still blessed with some scruples.
Dennis GILL diagnosed with vascular dementia 2 years ago
Joanna Rowntree
saysHi my mam has become extremely forgetful, especially short term memory She is also repeating herself it’s sad frustrating & scary all rolled into one ☹️
I know my language needs to change as soon as I say or ask a Q I then feel so guilty because I am not using the best language, your advice on here is brill thank you but anything else you can recommend would be really appreciated 🙏 the last few days have been really frustrating around her medication I do not want to treat her like a child ☹️ I know she is terrified of becoming unwell as her grandma she grew up with had bad dementia. I actually have a nursing background but at times find this overwhelming x
Tom
saysA close relative is convinced that situations have happened recently that are impossible. The people involved have passed on some 46 years ago. But he is 100% convinced this has happened and is not backing away from that thought. He is positive this event took placed a few days ago. He is aware the people that are involved have passed on some 40 - 50 years ago. but to him this event occurred a few days ago. He is 100% aware of what the current state of America, His age, current date, his surrounding, and most importantly, who we all are and knows who he is and that he is loved tremendously and can count on use for anything he needs. Except for this one issue which we all expect is probably going to happen more frequently during the upcoming years and is probably going to get worse.
Has anyone had anything like this happen that may help to shed some light on what would be the preferred method of working through this. Not so much on my end but for my relative.
Thank you so much for any input received. This is all new to me so I am at the point that it is the best time for helping and learning what to do and how to do for everyone concerned with this situation.
Thank you in advance to everyone providing any recommendations, information, or advice. I appreciate it. Thank youj
Terry Exley
saysHi Tom, we had a similar problem with my father, he was up to speed with everything except he believed that his wife (my mother) was still alive but had left him for someone else (she died in 1999) . He sometimes called her all sorts of awful names which, as you can probably imagine, was very distressing for myself and my brothers. After trying lots of approaches to the problem, including reminding him she was dead (which made him react as if he had been punched but 10 minutes later he’d forgotten and would start over) we have jointly decided the ‘least worst’ option-there isn’t a best option-is to just let him say or think what he wants, and just be non committal. Whatever you say, he will forget what you have said very quickly. Hope this helps and sorry I cannot offer a long term answer. Good luck
Michael
saysHello everyone, I would really appreciate some advice as i dont know what to do anymore regarding my grandmother. I live in a household with my sister, my mother, father and grandmother. Me and my sister work remotely so were in our rooms most of the day working and trying to focus as it is quiet in our rooms. My father is her primary caretaker(his mom) and my mother does so much for her as well. We are not trained to handle someone with dementia and its progressing really bad. My Grandmother packs all her clothes everyday to try to leave the house. She has fell down the stairs before and has gotten violent, forgotten who we were at times and stares at the wall in confusion. Its very sad and i don't think we are well equipped or sadly have the patience to deal with it. My father lashes out and gets angry so many times and even yells which i know is very bad for her. We all love her very much and its so sad for us to see this happen to her. My sister and I have suggested putting her in a home that specializes in caring for senior citizens with dementia because we think she will have a better quality of life. My dad is more old school and rather have her stay with us although her quality of life is terrible and it pains me to see her live like this. She literally stares at the wall everyday and there is alot of arguing in the household and its not a very loving environment which is why my sister and I tend to stay in our rooms. Any advice would be greatly appreciated. Are we wrong in suggesting that we move her to a home? I want to reiterate that her primary caretakers do not know how to take care of her. When my grandma ask about her mom or says shes going to her moms house, they flatout tell her that her mom is dead and sometimes in a bad tone. I dotn want to paint my father as a bad person, he is her only child and i know it is a heavy burden for him along with so many other problems going on. I apologize for the long message. Thank you for taking the time to read this.
Anonymous
saysHi Michael, thanks for getting in touch.
This sounds like a complex and difficult situation, so we'd really recommend talking to a dementia adviser for some information, support and advice. You, or one of your relatives, can do this by calling our Dementia Connect support line on 0333 150 3456: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
The choice of when somebody should move into residential care can be very difficult. We have some advice on our website here which you may find helpful to read: https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes…
There are lots of things to consider here, and it sounds like you could do with some support. So please do give the support line a call for some ideas which may help, or just to talk about the situation with your grandmother.
Hope this is helpful, Michael.
Alzheimer's Society blog team
Sandra raybould
saysMy mum is in a care home with advanced dementia just had a conversation with a neighbor of my mum who asked how my mums mind is I was very upset
Vicky
saysMy 88 year old mother has been living with us since lockdown (March 16, 2020). Her dementia has been progressing since then. She has been confused for the most part asking to go home which means her apartment. She had started wondering around, 8 times in one month. i have to call the police twice. It has not happen recently because we have double locked all our doors but i see every morning that she tries. The first lock is always unlocked. It has been so frustrating and stressful. My biggest challenge is my mom sleeps in the main floor of our house and we all sleep upstairs. I don't have a spare room for her to sleep upstairs and most of all I have steep stairs. She wonders around the house at night and makes me worry she might fall or slip one day when trying to go up or down. It was fine in the beginning but now she wants to sleep with me upstairs on our bed. I tell her no and every time she asks it makes me feel so bad but I have to stand by my grounds. I tell her "you are already in our house. There is nothing to worry about. You are safe here". Almost everyday is the same scenario. I don't know what to do. Please help.
Anonymous
saysHi Vicky, thanks for your comment.
I'm sorry to hear that your mother's dementia has progressed - this sounds like a really difficult situation for you.
We have some advice on our website that you may find helpful. In particular, these pages on why somebody with dementia may walk about and how you can help keep them safe: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/wal…
As you've mentioned feeling bad about having to stand your ground, you may also find this page on guilt helpful - and how to manage those feelings while caring for somebody: https://www.alzheimers.org.uk/blog/guilt-dementia-how-manage-guilty-fee…
I hope these links are helpful, Vicky. But if you need more support, please also know that you can call our Dementia Connect support line on 0333 150 3456. By calling this number you'll be able to speak to a trained dementia adviser who can learn more about your situation and give tailored information, advice and support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this helps,
Alzheimer's Society blog team
lisa yokwe
saysHi, it may be worth looking up the Herbert Protocol. It is aimed at identifying people who are at risk and vulnerable if they do 'wander off' out into the community with the local emergency services. You provide them with a description of the persona and information about where they are likely to go etc to assist in locating them quickly.
https://www.bing.com/search?q=herbert+protocol+dementia&FORM=R5FD3
Ashley
saysHow should you react as a caregiver when an Alzheimer’s patient fights with you about taking a shower, telling you that they have already showered that day? Do you correct them?
Anonymous
saysHi Ashley, thanks for your comment.
We have some advice on our website about washing and bathing which you may find helpful, particularly this page on when somebody with dementia is relucant to wash:
https://www.alzheimers.org.uk/get-support/daily-living/when-someone-dem…
If you're still having difficulties, then we recommend calling our Dementia Connect support line on 0333 150 3456. One of our dementia advisers will be able to learn more about your experience and give ideas, advice and support. You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this is helpful,
Alzheimer's Society blog team
Ruth Newton
saysMy father in law has dementia/Alzheimer’s and his daughter told him to the lawyer and had him change his will in her favor. He sounds normal at certain times so can the will chance be contested due to his illness
Alzheimer's Society
saysHi Ruth, I'm very sorry to hear about your father-in-law.
It would be best to contact our Dementia Connect support line on 0333 150 3456 to discuss the specifics of the situation. One of our advisers will be able to offer guidance. Please feel free to give us a call when it is convenient.
More details on our phone support (including opening hours) are available here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Alzheimer's Society blog team
Emma
saysMy dad was diagnosed 6 years ago with short term memory loss but unfortunately 4 years ago we got told that dad had Alzheimer’s he was only 56, then a few months later my Nan was also diagnosed with Alzheimer’s and ended up moving in with us. This lockdown has been so hard for us all as Nan desperately wants to go out but being 80 she’s vulnerable and can’t go out (she refuses to go out the garden). Today has been particularly difficult as dad has now forgot who me and my siblings are :(. I really don’t know what to do.
Anonymous
saysHi Emma,
Thanks for getting in touch - I'm really sorry to hear you've been having such a difficult time with your dad and your nan.
This has been a really challenging time for so many people affected by dementia. We've got a section on our website dedicated to coronavirus which you may find useful to answer some of the challenges you've been facing - you can find it here: https://www.alzheimers.org.uk/get-support/coronavirus
In particular, there's some information here on how to help your nan stay indoors: https://www.alzheimers.org.uk/get-support/coronavirus/frequently-asked-…
Regarding your dad's memory problems, that sounds really difficult for you both. We have some information on this page about how to support people with dementia when they forget the names of people or objects: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…
This can be really tough, so you may also find it useful to speak with one of our dementia advisers as well. They can listen and learn more about your exact situation, then offer more tailored information, advice and support. You can call the support line on 0333 150 3456 and find more details about it (including opening hours) here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Hope this is helpful. Take care, and please do call the support line if you need more advice.
Alzheimer's Society blog team