Dementia Support Line
Advice
How to offer help to someone with dementia who doesn’t want it
Do you know a person with dementia or memory problems who is refusing offers of help? Here are a few ways to support someone who may be in denial or lack insight about their situation.
It is common for someone living with dementia to deny that they are experiencing issues with their memory or other aspects of cognition, such as having difficulty holding conversations or carrying out daily living tasks.
This could be due to denial or lack of insight. Similar to denial, lack of insight means that a person with dementia is unable to recognise changes in their behaviour and personality.
Continued denial can cause problems in the person's future. For example:
- they may refuse to accept help
- there could be delays in starting or stopping medication
- they may continue to drive despite it not being safe for them to do so.
Offering help to someone with memory problems who may be in denial
Someone living with memory issues may deny that they’re experiencing problems. This can be frustrating, especially if you’ve been encouraging them to visit their GP for a memory test.
Denial may reflect that the person is feeling fearful and needs time to accept what is happening.
It is possible that they have some awareness of their cognitive issues and may be feeling uneasy or anxious about this. They may also be fearful about the future.
They may feel – or think that other people may feel – a stigma about having a diagnosis of dementia.
Here are some ideas to consider when talking to someone about your worries.
- Broach the topic gently. It may help to remind them that memory issues don’t always point towards dementia.
- Be kind and supportive during the conversation. Listen to their reasons and any fears they raise.
- Let them know that you’re worried about them. Give examples of issues like missing appointments, misplacing items, forgetting names.
- Break down the larger issue into smaller ones. Pick one to focus on, such as, ‘I’ve noticed you’ve been forgetting names of friends. Maybe the GP will be able to help.’
- Keep a diary of events. This will help you show someone you’re worried about that you have ‘evidence’ for your worries. The diary will also support you both if you see a doctor as they may want to see a record of issues.
- Turn the focus towards getting support for their friends and family. For example, ‘If you visit the GP, we might be able to get extra help that would give me a break...’
If their denial of the issue(s) continues, this may further delay receiving an official diagnosis.
Offering help to someone with dementia who denies their diagnosis
Receiving a dementia diagnosis can be a daunting experience.
The person who has been diagnosed may feel a range of emotions, from sadness to disbelief to denial.
When you talk to someone about their diagnosis and how they’re feeling, try to stay calm. This may help calm them down, too.
Denial can be beneficial, as it can give someone time to process news and how they feel about it.
Giving the person time and space to think about their diagnosis and how they feel about it is a good way of approaching the situation.
If they continue to deny their diagnosis, you might start to feel frustrated or unable to help.
There are a few things you can do to support someone who is in denial about their dementia diagnosis or refusing to accept help.
- Keep a diary of events – examples of issues, dates, times, locations – and what happened. This record can support you in approaching the person diagnosed with dementia, if it feels appropriate. You can use it to show them you care and are concerned for them.
- Find out more about local support groups and therapies. Attending these may help the person come to terms with their diagnosis. Talking and art therapies are popular choices.
- Try to stay calm when talking about your concerns. Getting angry or upset can make conversations uncomfortable for everyone involved. The person you’re worried about may be more hesitant to talk to you in the future.
It's important to try talking to the person you're worried about and to encourage them to see a doctor themselves.
Where this doesn’t work, you might consider speaking to the person’s doctor yourself. If doing so, it is best to get the person’s consent, or at least inform them that you are going to speak to their doctor. It will then be for the doctor to decide whether they disclose the information to the person.
Tips for supporting someone with memory loss
Get practical tips and advice on how you can support someone who is experiencing memory loss
If you have a question about dementia, call our helpline to speak with our expert advisers, or join Dementia Talking Point to chat with other people in your situation.
Dementia Support Forum
Visit our online community to get advice, share experiences, connect.
Shelley
saysHi my mum was diagnosed 4 years ago with Alzheimer’s although that’s a problem in itself she is not eating and we have tried everything all food seems to taste funny or spicy and she has no appetite at all I’m scared she is starving to death
Anonymous
saysHello Shelley, thank you for getting in touch.
We're sorry to hear about the problems you're facing with your mum's appetite and eating habits. People with dementia often experience problems with eating and drinking. These web pages describe the most common challenges and provides tips for carers like you: https://www.alzheimers.org.uk/get-support/daily-living/poor-appetite-de… This information is also available as a free downloadable resource: https://www.alzheimers.org.uk/sites/default/files/pdf/factsheet_eating_…
We'd also strongly recommend contacting our National Dementia Helpline on 0300 222 11 22 for further advice on this: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
We hope this helps, Shelley.
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Alzheimer's Society blog team
EMMA
saysMy neighbour who was not well liked ! Began knocking on my window up to 22 times a day . Although I am a nurse I had real trouble getting help . No NOK to contact . They refused help denied that they needed help . Then I had to have an op . So had to spell it out to GP . No medication prescribed for them . Managed to get a care package for 4 times a day as police were picking her up at night . I have found people are NOT dementia friendly they do not want to be involved!!!! So they usually knock on my door to sort problems out .
Barbara Holland-Davies
saysMy 97 year old mum has been in a lovely care home for 2 years. She makes involuntary noises (which she's not aware of) - quite loud oohs & aarghs & grunts; thankfully does not realise other residents are impatient with her. I understand its frustrating when they are watching tv etc but she can't help it. Is there anything that would help kerb this habit? Her short term memory is non existent now but recalls things from her childhood etc..
Anonymous
saysHi there Barbara,
Thanks for getting in touch.
Although it is quite common for people to engage in noise-making (called ‘non-verbal vocalisations’) in the later stages of dementia, sadly there isn’t a lot of research on it.
The research that has been done suggests that such noises may often be a way to compensate for lost language skills. So the greater the loss of language skills, the greater the chances that someone will use non-verbal vocalisation as a means of communication.
This may be something that you might like to explore with your mum. For instance, does she only make these noises when she feels a certain way, or at a particular time, or after a particular event? It may be an idea to look at what your mum may be trying to communicate – if anything – by these noises, as that may give an indication as to what is causing them (and so what might be done to prevent them).
If your mum is able to communicate verbally, then it might be a good idea to ask her what exactly seems to happen for her on the occasions when she makes the noises. Is there something in particular – possibly some emotion - compelling her to make the sounds? If so, can she describe how she feels at that point? This may give an indication as to what could help.
Another question to ask may be, how does your mum feel afterwards? Does she feel some sense of relief at having communicated, or less anxious or agitated (if indeed she felt either anxious or agitated to begin with)? There may be a self-soothing or self-stimulating aspect to the noises.
Alternatively, it may be that there is no conscious element to the noises and they are totally involuntary, in which case it might be a good idea to speak with the doctor to explore what else could be causing this. It could be useful for the doctor to make a referral to a specialist who can further explore whether the noises are a form of Tourette’s, for example, and, if so, whether there is any medication which wouldn’t have the side effects that the GP is concerned about.
Another option might be to speak with the home to see if they have any views either on what might be causing these noises, but also whether there are ways of managing them (for instance by raising awareness of dementia with the other residents so that they have more of an understanding of why your mum is making those noises).
Lastly, it might help to look at our online community Dementia Talking Point, as other people may have discussed similar issues – such as here https://forum.alzheimers.org.uk/threads/strange-noises.97382/#post-1353…
You may also find it useful to speak with our expert Helpline Advisers on 0300 222 11 22 as they may be able to give more advice around how to deal with these vocalisations.
We hope this is helpful!
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Alzheimer's Society Knowledge Adviser
RICHARD GARNER
saysMY MOTHER WAS IN NUSEING HOME AS SHE PASS AWAY 2 YEARS AGO AS SHE SUFFER DEMENTIA AS IT WAS UPSETTING ME TOO SEE MY MOTHER LIKE THAT
Ernest Foster
saysI look after my wife of nearly 70 yrs and I find that with all the assistance I am able to get by family the one thing she misses most is a trip out in the car I sold mine to help with the cost of carers but I was to old to drive anyway why is there no one who could take us out for an hour for which I would gladly pay ,we have not been outside for nearly 3 months !
Anonymous
saysHello Ernest, we're sorry to hear this. Please take a look at 'Your support services' to see whether there's anything in your area that might be of use to you and your wife: https://www.alzheimers.org.uk/get-support/your-support-services
For further information about services, our National Dementia Helpline is here for you on 0300 222 11 22: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
We hope this helps.
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Alzheimer's Society blog team
Rachel
saysMy mum has always whoosh with dates, birthday/ anniversary now she doesn’t know what day it is, when I say it’s friday she says is it I’m not with it I thought It was Monday, and every day when I ask what she had for dinner she will think about it then sayi don’t know and ask my step brother what she had, another thing she does is she will say what have you done today or what am i having for dinner, I will tell her then she will ask me again and this will go on 4/5 times and I say you already asked me a couple of times and she will reply did I, and she keep rubbing cream and powder on some bite/sores which are not going away, the othe week I watched her run 4 different creams and when I said about it her reply was no I haven’t, where you show me so I had to show her savlon /sudocrem /anistan/e45 she didn’t believe me and she won’t see Dr she said if I get the Dr she will refuse to see them and tell them to go away and that we want to put her in the funny farm it’s heartbreaking and tearing me apart I have my own health issues but she is my mum and I made a promise to her to care for her which I will uphold no matter what this has happened over a period of around 6-8 months I gave her leaflet on memory loss and said we all get forgetful even me but she looked at it and looked at me in disgust, but when she sees the tv ad she says that must be awful for them people, please if you have any advice I would appreciate it i have already made calls to the dementia and Alzheimer’s helpline
Anonymous
saysHi Rachel,
We're really sorry to learn about the difficulties you're having with your mum. It sounds like a very distressing time for you.
If you don’t seem to be able to make progress in persuading your mum to see the GP, you could mention your concerns to the GP yourself.
Patient confidentiality means the GP is not able to give out information about a patient, but they are able to receive information. It is up to the individual GP whether they decide to take any action on information received.
For further advice on this, please try calling our trained advisers again - they can help to talk through this and provide you with support: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Good luck, Rachel. We hope this helps.
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Alzheimer's Society blog team
Jenny
saysIt would be useful to understand what the word “support’” truly means to individual sufferers of the condition.
‘Support’ is a just word —- its reality that truly helps.
Sarah Stimson
saysI totally agree with you Jenny. Support appears to means ticking boxes & putting all responsibility on family members until they are exhausted, depressed & unable to live their own lives. My Mum’s has Alzheimer’s for 10 years, diagnosed st 65. I’ve done everything for her & still do. Now my dad, aged 80 (with whom I’ve had a very difficult relationship due to his on/off controlling behaviour, bullying & putting all Mum’s care on me) has Alzheimer’s . I’m carer exhausted & feel so resentful towards the State who really don’t do anything at all to help!
Debby Bond
saysI mirror your feelings on this issue. I see my mother changing weekly
Lack of empathy Will sit in a room with no tv on
Staring into space for ages
System is box ticking She was supposed to go for another assessment after waiting 8 weeks Cancelled the appointment 3 days before Without telling anybody. Showed no emotion when I tried to explain I had booked the day off work
At my wits end
Share your frustrations
Liz
saysMy mum is 68 years old she was diagnosed with vascular dementia. The has been so scary for me to see how she became from bubbly lady to I very quite personally with no self esteem.
There are days when you wonder if she knows about this illness. I make her smile but obviously is so difficult because her thoughts go wondering .
I felt helpless, I tried groups and gym exercise but it’s never so straight forward. She doesn’t trust anyone only her family.. she had bad experience with a lady who was supposed to be her friend and was left on her for dead. Police never did anything but that is the one thing that always stuck . People are cruel and it’s hard times ahead . I can’t tell you how I feel but lost any angry that my beautiful mum and always giving has been my rock all my life. I can’t answer to why but it’s the most aweful and cruel world we are Living in today 😔
Jennifer
saysMy mum is 84 and was diagnosed a year ago. She asks the same questions tens of time and forgets important events within minutes. All that her husband and I can just about manage but she is extremely verbally abusive to her husband. She swears at him tells him he is no good and says he is to blame for all her I’ll health. This is daily sometimes from the early hours of the morning for hours at a time. Her husband is 80 and I have notice he has signs of depression and is drink more. How can I help the situation?
Suzanne
saysFind a Care home, and don’t feel guilty. You cannot manage this situation.
Janet fishwick
saysMy mother is 91 and a half years old. She has stage 4 a!zheimers and has lived alone for 29 years since my dad died. She refuses to use her walking stick, forgets to take her medication, has no idea what day or time it is, is unable to perform simple household tasks and is becoming incontinent. Her food management and appetite decline weekly,along with her memory. We have provided her with a cleaner, hairdresser and chiropodist which she accepts. Mother has a large A4 diary with all her appointments and family information provided. Since she cannot correctly name the present day, this information is wasted on her every week. We are now considering Home Help as her needs are increasing. We all know that mother will resist and so the cycle starts again.......
Suzanne
saysAgain, similar to my reply to Sharon. I would consider a care home for your mother.
David Webb
saysI’m sorry but there’s not much help for people with Alzheimer’s/Dementia l lost my mother in law to this awful illness I’ve seen the good and the bad side side of care homes.Now I’m going through it all again with my wife who has been diagnosed with Alzheimer’s are doctor admitted my wife Sally to Airodrome house in Gosport Hampshire for assessment and care i look after my wife at home with the visit from the carer now and then the carer retires and they don’t let us know whatsoever Then when I contact them they removed her from their system and told me I now have to go back to my GP and ask to have her access again to much red tape at every department you go to Department Of Works and Pensions ect PIP. DVLA yearly license if been waiting ten months for a decision when I contact them still not made I said to them I’ll make your decision for you she is not safe to drive how many are driving without saying anything I am not the sort of person to let anything go if it’s not right everything has been a battle and red tape I feel sorry for people who can’t be bothered with the stress for the help they should be getting anyway I’m sorry I’m going on but the system is just not acceptable.
Pam Laurance
saysSometimes the help needed is very concrete and specific and NOT WANTED. e.g when I infuriated y mother (now dead) by taking her jacket with us in the car when I know she was likely to get cold and she insisted she would not. If I had realised how angry she would be about it I would have just sneaked it into the car....anyway, we survived. And, at least, by ten minutes later she would have forgotten that she had been angry.
I think for many people with dementia there is a strong lasting and upsetting feeling that "My life is my own" any more. Because even when you ask the person " Do you want this? " "Would you like that?", by the time you get it or do it or whatever they have forgotten it was something they agreed to...
This is upsetting for them and VERY TIRING for carers.
Marc Limbuvala
saysWhile I understand there is no one size fits all type of answer or help, I thought I would present the following to see if others a going though similar. I care for a gentleman whom was diagnosed with Alzheimers 6 years ago. Both he and all of his family are still in denial, I have spoken to both the gentleman and his family for a number of years and still total denial. I've never come across this issue before over such a long period of time. While I continue to offer all the care and support I can I'm beginning to feel a little short on support.
Jan
saysThis sounds very familiar! Took 2 years to get mum to the Drs then another year to get diagnosis. 3 years after diagnosis mum is still in total denial and has failed to take her tablets. She is now deteriorating fast but still refusing any help. Which is a worry as she doesn’t know what day/ time it is but provides all food etc for my dad who is immobile ( he has carers in 4 times a day).
Mum refuses all contact, I believe on the basis that if she doesn’t talk to anyone she won’t be found out.
Since she is deemed to have capacity we cannot instruct carers against her will. Now worried that there will have to be a catastrophic failure before she is deemed not to have capacity
Bea
saysSorry to hear jan,
This is a similar situation to what my Nana is in. She has always been dominant and in charge and realising she is having to give more control to grandad makes her very angry and frustrated. She is in complete denial and no one can mention 'memory loss' without her going mad. My grandad is becoming Ill with stress and the doctors are refusing to do anything unless my nana admits herself for help despite my grandad voicing his concerns. Very difficult for the whole family and to watch my grandad suffer :(
Sharon Burton
saysMy 88 year old father was diagnosed with vascular dementia 4-5 years ago. He is now incontinent, immobile and housebound. He has Carers four times daily but l am very worried about him at night. He has had three falls in total one where he broke his hip resulting in being in hospital for three months. My brother and l are unsure whether he should now be in a residential care home but know that he would want to remain at home, even though he thinks he now lives in his childhood home. He is very confused most days now.
I find this very upsetting now and really don’t know what to do for the best. I would appreciate any advice.
Anonymous
saysHello Sharon, thank you for your message.
We are very sorry to hear about your difficult situation; we know how hard it can be caring for someone with dementia and making decisions about moving into care.
We have a section of the website called 'Care homes: When is the right time and who decides?'. It has advice and practical tips for carers and information on how to know whether it is the right time to move a loved one to residential care, which may prove useful: https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes… This is also available as a free downloadable resource: https://www.alzheimers.org.uk/media/12201
For further information, support or advice about dementia, our National Dementia Helpline is here for you on 0300 222 11 22: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Alternatively, you might like to join our online community, Dementia Talking Point. You'll have the opportunity to connect and speak with other people affected by dementia who may have been through similar situations with their loved ones: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We really hope this helps, Sharon. Best of luck.
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Alzheimer's Society Blog Team
Graham Hall
saysHi Sharon. Have you thought about having a life line Installed ? your dad could have a falls detector programmed into the life line. I always think it is like having someone sitting ther 24/7 ask your local council.
Suzanne
saysHi, Sharon, I personally would Start looking at care homes at the stage you’re at.
Both of our parents had/have Alzheimer’s and vascular dementia. And both ended up care home as we were unable to help them (physically and psychologically) to the extent they needed it.
The trigger for dad going into care home was double incontinence.
Now with mum , the trigger for us nudging mum to try care home was mum’s anxiety - she was calling 999 every other day, with chest pain, spending the whole day on A&E then Discharged home as fine.
She had no realisation of having called 999 more than15 times. We couldn’t bear it any more - stressful for her and us.
She had separation anxiety whenever we visited (every w/e) and left her. We had Terrible guilt about her loneliness. She often thought she’d been alone for days - but it was just hours.
Now she is much happier in a lovely care home. Surrounded by nice residents and staff.
L Cupitt
saysHello Sharon,
You should be looking for a good nursing home. They are out there but they need to be searched out. He is going to deteriorate with time so start the process as soon as you can. My wife of 49 years has Alzheimer's and she also experienced a fall in a good care home. She had to endure 9 weeks in hospital when she could have been out in less that five weeks except the NHS acute wards can not handle dementia in any of its forms. Now she is in a very good nursing home in south Manchester. The care they are giving is first class. Having a qualified nurse on duty 24/7 really helps to catch problems early.
My advice is to start looking early and go for a nursing home despite it being more expensive as your father will need the extra services in the fullness of time. Ask some of the families of those in the home how their loved one is cared for. Unless they are very positive about the care keep looking and be prepared for a space to become available in the best homes. Ask the home staff difficult questions such as about staff turnover and how many staff have been there for over ten years. Avoid any of the big homes run by American/Canadian businesses, as they only want the money.
You have a tough journey ahead and I hope it goes smoothly.
Maria-Elena Heed
saysHello, I've been married for 16, we moved to Spain three and half years ago. I have concerned about my husband's behaviour for some time. He had a heart attack in May 2017 then shingles in November 2918 and he suffers from arthritis. In conversation He sometimes changes the names of objects, his moods swings happen every day. If busy and I interrupt he gets very angry. Can this behaviour be the start of dimentia? Please advise thank you.
Anonymous
saysHello Maria-Elena, thank you for getting in touch.
We are sorry to learn about your recent concerns; it sounds like you're going through a difficult time.
Dementia can cause a number of different symptoms, which you can find out more about here: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…
If you've noticed changes of behaviour in your husband that are similar to dementia symptoms, you should try and encourage him to see a GP. They can refer him for an assessment to find out for certain the cause of the problems.
For further information, support or advice about dementia, our National Dementia Helpline is here for you on 0300 222 11 22: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Alternatively, you might like to try our Live Online Advice service to speak with a helpline adviser: https://www.alzheimers.org.uk/get-support/national-dementia-helpline/li…
We hope this helps. Wishing you all the best, Maria-Elena.
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Alzheimer's Society Blog Team