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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This page has been a great comfort.. my mum has late stage Alzheimer’s and about to start withdrawing her Aricept.
I’m so worried as they have said she will deteriorate quite quickly - do they mean she will die ?

Hi Audrey, thanks for your comment. I'm glad the page has been some comfort, and sorry to hear about this situation.

Are your mother’s doctors stopping her donepezil (Aricept) because she is approaching the end of her life or purely because she is in the later stages of AD (which can last for quite some time)? I’ll try to cover both scenarios.

If your mother is in the very late stages of AD, or perhaps has another terminal condition that means she is nearing the end of her life, then the doctors may recommend withdrawing any medications that are not providing a clear and immediate benefit. This is known as ‘deprescribing’ and is a way of reducing the overall burden of medication for the patient, making them more comfortable, and reducing nasty drug side effects. The doctors may recommend stopping donepezil (Aricept) if they think the side effects of the drug are outweighing its potential benefits to her cognitive abilities.

The latest guidelines advise that donepezil doesn’t need to be withdrawn just because someone has late stage AD, even if it’s not obvious they are still benefiting from taking the drug. A recent clinical trial showed that withdrawing this kind of drug in people with late stage AD resulted in a small but noticeable drop in their quality of life over a period of several weeks. So the current thinking is that we should keep giving anti-dementia drugs for as long as they’re needed, providing they’re not causing too many problems.

You shouldn’t need to worry about any drastic effects of stopping this kind of drug though, providing it’s managed by the clinical team responsible for your mother’s care. It shouldn’t generally result in a rapid decline in cognitive symptoms, and it definitely shouldn’t hasten a person’s death. This is not how the drug works at all – it just improves symptoms a little bit but has no effect on the progression of the disease itself.

I hope this helps.

Best wishes,
Simon (Alzheimer's Society)

I am so grateful for these tips given in this article. It is so much better when you are aware so you can be mindful of the persons feelings. Being able to address a person with Dementia or Alzheimer's will allow them to feel comfortable and bring joy to their hearts.
Thank you

My mother has dementia and she is always complaining that she has a strong headaches or other type of pain. Sometimes she acts like she can't handle the headache, so I take her to the hospital. At the hospital they can't find anything wrong with her, and after few hours of been there she feels better and act like nothing happen. I don't know what to do. I don't know how to recognize when she is faking it or not. I need help!! I am the only one working and most of the time I have to take off to take her to the hospital.
Sincerely,
Patty

Hi Patty, I’m sorry to hear about your mother. It can be difficult for someone with dementia to express what is wrong. Although talk of pain should be taken seriously, there may be something else that is troubling her that can be alleviated by some distraction onto other thoughts or activities.

I would talk to her GP about this so that they can check her over. You might ask whether it’s OK to give her some regular painkillers such as paracetamol. I’m wondering whether she would have been given pain relief at the hospital that resulted in her feeling better?

You might also wish to consult Admiral Nurses, who are dementia-trained nurses. They have a helpline 0800 888 6678 and can provide advice from a medical point of view.

Kind regards,

Helpline advisor (Alzheimer's Society)

What do people feel about giving the person with Alzeimers a written pocket history of their life as now they keep forgetting and thinking they have just moved out of a house they left over 30 years - Im wary as its rather a doom fun read ... a good life at the time but now stuff is slipping away. Has anyone find this helpful for the person.

This is a good read to be more self-aware when you interact with people experiencing dementia.

My mother has dementia and I love her so much that I keep trying to keep her in her home and she seems to be with it one minute and off I space in another falling now can’t get the help she needs I am beyond exhausted I need help Thankyou karen barker

Hello Karen, thank you for your message. I can hear how much you love and care for your mum.

I am concerned that you have been struggling to get the help you both need. I am wondering if you have contacted social services as they can assess the care and support needs of the person with dementia and their carer, please take a look at the following link:

Needs assessment: https://bit.ly/2tlQJXI.

I am sorry to hear that your mum is starting to have falls. You may like to contact an occupational therapist (OT) by asking for a referral through the GP. Please click on the following link,

How the GP can support a person with dementia: http://bit.ly/2oFZuYe.

If you would like to speak further to a helpline adviser further, please click on the following link: https://bit.ly/2KbAbsl.

Best regards, Helpline team (Alzheimer's Society)

First of all thanks for this article which have a unique value due to old age people. anyhow i like and thanks for this topic. i hope you will post new one. thanks
Dementia Training for Carers

I lost my best friend back in September. I was her caregiver for the last 3 years and was with her for 8 years prior. She had parkinson's and dementia. Not a day goes by that I don't think of her and many are accompanied with tears. At times I ask GOD how could he let her suffer for so long, and she did suffer a lot, being in and out of the hospital and emergency room about 4 times since June of this year. She wound up being placed in a nursing home, which was a huge blunder., which resulted in a terrible bed sore which did not heal at all. I cannot wait to see her again in Heaven.

I lost my best friend back in September of Parkinsons and Dementia. I was her caregiver for the past 3 months of her life and lived with her for 8 years prior. She was in and out of the hospital and emergency for 4 times in 3 months and wound up in the nursing home, which was a huge blunder, which resulted in a terrible bed sore which never began healing. She passed away here at her home, which we elected to bring her back here. I will always love her and can't wait to see her again in Heaven.

I felt exceptionally cheerful while perusing this site. This was truly extremely instructive site for me. I truly enjoyed it. This was truly a sincere post. Much obliged!. Live In Care Services London

I lost my Dad in October, he was main career to my Mom who has dementia. She lives alone with my support, but she forgets that Dad has passed and she goes next door looking for him. She seems to remember most times that he is gone, but then forgets. She wants to remain at home but I worry about her going outside. Can you give me some advice?

Hi Jan, I am so sorry to hear about your Dad, and can understand your Mom’s feelings of confusion about his passing. Many people with dementia do go walking off in an effort to find their parents or their partner as they cannot retain information about what has happened to them.

There is rarely an issue with road safety as this is hard-wired in the memory from an early age, but the biggest hazards are not wearing enough clothing, or getting lost. This link may be useful: Walking about http://bit.ly/2r5fsN2

Many police forces also use the Herbert Protocol, mentioned in the link above, in which they can more easily locate, identify and return people if the family has given them information about the likely locations they may be in, photos and family contact details.

Keeping warm clothing by the front door can sometimes act as a reminder to put on a coat and hat. And you can get help cards from our Helpline: 0300 222 1122.

Thank you, this has helped me understand my mum so much more. She has just started asking where Barney the cat is- he died quite a long time ago.
I’m realising the importance of language.

My father in law has prostate cancer in remission and diagnosed with dementia a year ago he is 80. He is cared for by his wife of 78 and his daughter of 58 who still lives at home. His dementia is bad and he talks of burning the house down etc. The other day he said he doesn't know why he has to take all the pills as he is not unwell. I've read all the comments here but does no one actually say to the person that they have dementia, they forget things and they have to take the tablets to make them well again. Your advice please. Thank you

Is it helpful to show someone with dementia/Alzheimer’s pictures of something that happened the night before because they forgot the event or will it make them sadder that they forgot it. My niece and nephew (3 and 4) were making pizza. My sister took pictures and sent them to me. I asked my mom about it the next day but she didn’t remember. Should my sister show her the pictures or will it make her sad that she didn’t remember.

Dementia isn’t a specific disease. Instead, dementia describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning. Though dementia generally involves memory loss, memory loss has different causes. So memory loss alone doesn’t mean you have dementia. There are different types of dementia. In this article, you will learn about the most widely publicized types of dementia, each of which will have different symptoms and behaviors most often associated with the disease.

http://www.cadabams.org/blog/types-of-dementia/

I am so discouraged. My husband has dementia and I feel our real problems are just beginning. Our scattered family was finally able to get together this past Christmas and it was disastrous. He swore constantly under his breath, was rude to all. He spends most of his time reading when we're alone and doesn't engage in conversation. I thought he would be fine with my daughters and sons in law. Before hand, I reassured him, if the conversation got too loud, he could feel free to get away to his room with his books.
Instead, he stayed to be so rude, everyone wanted to take early flights home. I've been so lonely for conversation and family and feel I may never be able to see them again. When he does speak to me, it's in an angry tone and I wait on him hand and foot. For the past three years, I've never left him for any length of time, because he has managed so well; but this extreme rudeness came with what I had hoped would be a wonderful reunion. I haven't seen my grandchildren in ages; and little hope for future visits. I have been encouraged to put him in Memory Care; but found that is just like babysitting with no therapy to get better.
We are both in our mid 80's and I want us to stay together as long as possible. We do have good days; but is there an answer to being able to see family occasionally? When they do come, it's
usually to help with tasks I find difficult; help us keep doctor appointments, put safety bars in bathrooms, etc. I feel I'm losing my family. I wish we could visit and just find time to talk about their lives, careers, and grandchildren. I feel guilty for feeling angry with his behavior; but I know it's the dementia, and I wouldn't feel
anger with cancer's symptoms. If it were me, I would want him to
be a good caretaker. And I know it's a blessing that I can help him.
It's just that I wasn't prepared for the isolation.

Is it possible for my grandpa to mistake me for someone else. My grandma died suddenly and she was his main caretaker. I’ve returned home to help my family, and sometimes my grandpa calls me a different name, and it’s the same name, like I remind him of someone else?? Does he think I’m her?? Should I say something to my family??

My 91 year old mother has was diagnosed with Alzheimer's 2 years ago. She has lived on her own since my dad died 29 years ago. Mother is now at stage 4 in her illness and displays all the symptoms of repetition, unawareness, ,,forgetfulness and a whole lot more issues. She refuses to have Home Help because she insists that she can manage all her daily tasks. Mother is receiving Assisted Living Allowance which pays for cleaning, hairdressing and chiropody services. She is loathe to leave her bungalow and join small organised clubs where she could meet and socialise. She has weekly visits from Age Concern and is currently managingnto knit woollen squares for a patch work blanket.Her daily needs are becoming more apparent e.g. putting on her heating and gas fire, taking her medication, remembering to wear hearing aids,expecting a newspaper to be delivered... Mother now has no recollection of drinking a cup of tea or doing some light baking. Her knowledge of which day, season or month it is, is pure guesswork.
I am just writing this to let others know that this is not an easy task for us, her family. We feel unappreciated, frustrated and wonder his much longer she can continue to live in her cocoon of existence.

I'm a carer for my son who has learning difficulties and autism , I'm not well myself I've got asthma overactive thyroid and high blood pressure, me and my husband are also caring for my mother in law who had dementia and it's very hard , I feel that she's quite harsh towards me when I tell her do this or don't do that

Thank you, I’m guilty of some of these with my Dad at times. One of the most frustrating things though is watching people (carers, medical, friends etc) speaking VERY LOUDLY to my Dad. I can see he hates it, I try to gently remind that there’s nothing wrong with his hearing!

Sundowners was mums worst time. Always wanted to know where the weans were,as they were late home from school. As one of the 'weans',I just said that they were at my sister's house(the other wean)at a party. Seemed to settle her for a wee while.

Hello, my Mom hasn't been diagnosed with anything yet, apart from a deficiency in B12 last year which she had a course of injections for and now needs every 3 months. She suffers with white coat syndrome and refuses to go to the doctors, my Dad and my siblings noticed changes in her over three years ago and tried really hard to get her to see the doctor but she refused and is very convincing and strong willed, my father spoke to the GP about her on one occasion last year when she accompanied him, but the GP refused to listen to him and my Mom convinced the GP she was OK! Because of data protection and other rules we we're unable to book her an appointment without her doing it, but finally I have managed it and we have now seen the same doctor and are getting someone to come round to assess my Mom. I feel that so much time as gone by and feel so guilty. My mom use to be so clean and tidy especially with personal hygiene but now my father and I have to try to get her to wash and change but she won't budge only occasionally, do you have any suggestions has to how I can get her to wash, and wear other clothes

Wow...you hit this 100 ...living this right now. . very helpful.

I agree with aiming for the best communication - and this site helps a lot - whilst accepting we are human. A short break - if you can step outside or go to the shop, or play your phone game for a few minutes in another room can help you to just take a breath, a moment to orient yourself & drop your stress level.

Thank you for this. My mum, My best friend, was diagnosed 2 weeks ago and it hit us all like a runaway train. We suspected something but weren't sure. She was admitted to hospital for something else, and then the consultant observed her behavior. One thing led to another and .......
These are great tips for us all. Thank you.

This is very helpful. It is good to get confirmation that you are doing the right thing already in some areas and to pick up some new suggestions for helping conversation. My 91 year old mother-in-law has just started to get really muddled speech that is sometimes incomprehensible and it is difficult to know what to say when you can’t understand her. Sometimes she is aware of this sometimes not. I will try some of the things suggested on your website.
It sometimes feels that you are battling on with little support so it is good to be able to get sound advice. I think I now need to find a local group that will understand what we are all going through. Thank you.

Excellent blog.

Hi
My mum has been diagnosed with dementia - currently very bad short-term memory. She had her driving license revoked 4 months ago but just cannot remember this. We have explained the situation many many times but each time she forgets (sometimes within minutes) and gets very upset and angry all over again. This is also very stressful for my brother and I who feel we have tried everything to tell her gently and calmly and offered alternative solutions for her such as walking to shops (30 yards away) or getting bus or taxi with her sister to the next village that she likes going to. But she cannot seem to remember this. While we understand it feels like a huge thing for her, any advice would be greatly appreciated.
Thanks ... Karen

Hi Karen,
Thanks for your comment, and sorry for the late reply.
One of the first symptoms of dementia is often the loss of short-term memory as you say, so she won’t remember your explanations, and each time you talk about the reasons, it's likely she will react with anger and upset as it will be like the first she’s learnt about this.
It would be kinder therefore, not to keep repeating this unwelcome news, and rather to make alternatives happen, helping her to get used to them. Walking slowly with her to the shops and using the bus with her sister. If she asks why you are not using the car, maybe say that it needs a repair, or that it’s nice to walk etc or distract her with other topics. If it’s possible to remove the car from sight, this will also stop being a constant reminder.
Hope this is helpful. Our helpline is also available to offer information, advice and support should you need to talk to somebody: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
--
Alzheimer's Society blog team

I’m in middle of a crisis now with my darling mama & it’s so very sad that’s what I’m finding hard I’m missing her.
She had usual memory loss for her age until last November when infection in her foot re diabetes/ blood flow issues resulting in her having gangerne loosing toes now sore heel & well looking like dementia taking hold .She has heart failure but been ok with that except for fatigue only just had other symptoms on that front.
Just left her in hospital for treatment & scared she will get hurt without me there to protect her
Wow life is so cruel

Mom was doing great mentally until about 2 years ago. She is 91 and 1/2 years old. The signs of dementia were subtle but Mom lived in a senior apartment and did very well taking care of herself and doing the day to day tasks (doing the bills) socializing and playing cards or other games with friends. She'd given up her car 2 years ago due to physical issues(broken bones and falls)
But the past year her memory started to go quickly...and she ahd a compression fracture on her lower back. We finally had to make the decision to put Mom into a nursing home because she refused all forms of help to keep her at home. The sad part for me is Mom has turned completely against me calling me almost every day to tell me to "never call he" and "forget you had a mother" and much much worse. She ioesn't realize the dementia had gotten so bad she was forgetting to take her meds and day to day tasks overwhelmed her. But something triggered her against ME(not my brother) I usually answer her by saying."Well Mom I've got to go now" because she is hurtful and really mean. I stopped calling her a week and a half ago because I'm afraid she'll lash out at me.
I received 25 horrible calls in 4 days last week.
I just sent her some Mother's Day gifts ...and am hoping I will be able to talk to her again.What do I do. It breaks my heart because I've been a very dedicated and loving daughter despite her behavior(in the past she was very controlling until I moved away at 20 years old for good.

Hi Stephana, thanks for getting in touch.

It sounds really painful and stressful for you to be going through this with your Mom. As you have said, you have tried stopping calling her, only to have her contact you more. It sounds like your Mom actually may unconsciously want you to call, and that she may unintentionally be projecting onto you her difficult and complex feelings. This will likely be due to the impact of her dementia and the impact moving into 24-hour care, as well as possible resulting feelings of ‘abandonment’ (even though there was no other option).

Because you are close, despite her past complicated behaviour towards you, she may now not have someone with whom to release these angry and hurt feelings. This can often happen in dementia, when a close family member can be the target of hostility from a loved one, especially if there was an already pre-existing complicated relationship. If you are going to resume calling her every other day you will need to be boundaried with the time, and pay close attention to your own self-care.

You could say to your Mom, if you did call her, and had a lot of anger aimed at you, that you really care about her, and that you will call again. You may need to liaise with the nursing home staff as well regarding your mother’s agitation and how best they can support her, as her needs sound quite complex, and for them possibly be around at the time if you do call her again.

You would be welcome to call us on our helpline on 0300 222 1122 to talk this through in more detail. We are open seven days a week and you can find more information on our opening hours here: http://bit.ly/1T0FzgB.

You may also it helpful to visit our online forum, Talking Point, where you can talk to other people online who may have experienced similar issues. I have included a link here: https://www.alzheimers.org.uk/get-support/talking-point-our-online-comm….

Best wishes,
--
Alzheimer's Society Helpline Adviser

Hi
We have just taken my parents away for a holiday and my mum was forgetful
Before but now just started talking nonsense on and off. Do you think
This could be the start of Alzheimer’s?

Hi Diane,

Thanks for getting in touch. If you're worried about your mum's memory then it's a good idea to talk to your GP.

This page has some information on what to do if you're concerned about somebody's memory, so that might be a good place to start: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how…

You may also be interested in this page about the differences between normal ageing and what could be a symptom of dementia: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how…

Hopefully this information is useful, but it's worth remembering you can also call our helpline for information, advice and emotional support. The helpline's opening hours and details are here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Thanks,
--
Alzheimer's Society blog team

I understand your point regarding "I/remember when?" but my Mum went from early dementia (still driving and being a high functioning person with dementia) to late stage (24 hr care, no mobility, FULL care) as a result of a fall resulting in a head injury (and brain bleed) within days.
My Mum loves to hear about "do you remember?" followed by random stories, even if she doesn't actually really remember them. The best thing I noticed last night was her attention when I spoke about how I feel (we were watching the BBC1 program about anxiety). I've never told her how I actually feel or my concerns that I pass everything on to my 3 kids - she really was listening and even spoke and held out her hand - she is and always will be my Mum x

Hello H, thanks for your comment and sorry to hear that your mum's dementia has progressed suddenly.
Each case is different, so it's good to hear your mum is responding well to 'Do you remember'. If something is working well then there's no reason to stop.
Please don't hesitate to contact our helpline if you need any information, advice or support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Best wishes
--
Alzheimer's Society blog team

When the person keeps saying in front of lots of people ‘it would be nice if someone told me these things’ accusingly on a regular basis when they’ve been involved in the original conversation. This is so hard to deal with. Everyone thinking I’m just not communicating with him. It hurts so much. If I say ‘i told you about this ‘ I’m wrong and if I say’ oh I forgot to tell you ‘ I’m also very wrong. No way out.

Useful, thoughtful information, but I'm not sure about avoiding saying love, dear etc.

Good tips here thank you which we as a family "try" to remember.
Re 1 we find getting the old family photo albums out works a treat and leads to some lovely conversations & memory sharing with mum.

Visit for the best psychiatric hospital in India. It known for the treatment against psychiatric and mental health issues. It's located at the shahdara delhi, Residential and out patient both services are available.

In my opinion first step is to educate yourself with respect to memory loss, causes, symptoms and remediation strategies. Second you must determine the needs and requirements of your loved ones such as; emotional, personal, and health needs. Thirdly you must safety proof your home, as patients with dementia often exhibit unpredictable behavior. It could be quite difficult to look after a patient with memory loss specifically while fulfilling your other responsibilities, therefore it would be best to enroll the patient in an assisted living facility like Avantgarde where they remain under supervision of certified and professional care professionals 24*7.

My mum had Vascular Dementia. Some days she would cry that my Dad didn’t visit. Some days she would cry because he was dead. Both times I would comfort her according to which memory she had. I would say things like Dads at cricket mum, you know how he loves cricket, but he sends his love and will pop in tomorrow. Or I would say even though Dad is no longer with us, you had the best time together and you looked after him so well. Both explanations calmed her. Living in her world was so important.

I look after an old friend with Dementia, recently he has said people have been to his house, sometimes myself when clearly I have not has anyone else experienced this

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