Does mum need to be told she has dementia

[Betty65]

My 88 year old mum has finally been diagnosed with mixed Alzheimer’s and vascular dementia. The doctor is calling her next week (with me present) to give her this information over the phone.
i want to ask what are the benefits of her knowing, She has a friend with dementia and always refers to it as the worst disease ever and she’s glad she hasent got it. I have not been brave enough to contradict her. What do you think

 

[Roseleigh]

I have the same worry with my mum. At 94 even older, and certainly in the early stages of dementia, short term memory deteriorating, lack of empathy, generally lost her former sharpness of mind. She insists nothing is wrong. Ive not tried to make her go to the doctor as she is totally in denial, and at her age I wonder if its necessary for her to receive such devastating news.
My husband is in care with late stage dementia now, so I am sensitive to the siigns, but not sure if others notice. I would like her to have some home help though to get her used to it before some crisis hits but she wont hear of it, and she does just about manage alone with me sorting out problems and doing her shopping.

 

[lemonbalm]

I have never let my mother know that she has dementia. I looked after her for two years before she went into a care home from hospital after a stroke. I would not have wanted to put her through the tests or assessments and she wouldn't have agreed to go in any case. When I consulted her doctor, he told me that he would not recommend any medication at that stage anyway.

Mum is on quite a lot of medication now but still has no idea what any of it is for.

 

[Whisperer]

Dear @Betty65

It is hard to answer your question without a little more information. I have tried to answer as best I can and hopefully others will be along later.

1) Will your mother remember what is said to her by the doctor? If it will be immediately forgotten then little harm is done.
2) If your mum will remember and this will cause her ongoing distress I suggest you tell the doctor this. The way the news is given may well be changed, perhaps if the doctor is aware of this point. That will depend on the medical professional.

On the question of what benefit your mum will get from being told her diagnosis, based on your brief comments I would suggest little, if any, in terms of her actually knowing. Indeed if upset is likely please ensure the doctor is advised as stated above. Whether any treatment is then available I cannot say. My mum refuses to go back to the Memory Clinic so I am stuck with a diagnosis of Mild Cognitive Impairment from 2015. Most likely she has Vascular Dementia for which there is no treatment. Her condition worsens but mum does not want to know. As she told me once in a very emotional conversation “if I am going doally I do not want to know”. A different version of what you mum thinks. Hence I have no revised diagnosis, but a contented mum, just makes my carers journey a little harder. You would most likely be me if I had got us back to the Memory Clinic. With mixed Dementia not sure if any treatment is available.

If the doctor gives the diagnosis straight to your mother and there is upset consider the future. I refer to my mum’s blonde moments, we joke about her memory lapses, the Dementia word is never mentioned. Mum was initially in denial of her problem but as her understanding of her condition has weakened we have now slipped into “Anosognosia”. Please google that phrase. It makes it a little easier to understand where my mum now is, but does not get me any further forward in terms of the Memory Clinic. I will take my mum back when upset can no longer happen. I live with mum and care for her. I decided sometime ago there is no treatment for Vascular Dementia, it would destroy mum to be dragged back to the Memory Clinic so I will do it her way as regards caring. Her ongoing confidence and trust in me is vital to her welfare. I could not risk that relationship to get a paper diagnosis that would do nothing positive for mum.

Our circumstances are different but possibly similar in one important way. If mention of her condition will upset your mum then you will have to work around that. Offer help, support, etc, but always be mindful of the elephant in the room which cannot be talked about. In a strange way when the doctor talks to your mum it will be as much to you as it is your mum. The doctor ends the call and you and your mum are left to deal with her condition. My advice would be when talking to your mum accept her understanding of her condition, even if it is flat denial. In future just work around it in the practicalities of life. A formal diagnosis is a name for something, in terms of helping a loved one with Dementia it has little day to day practical value. In the end your relationship and how you can help your mum with her illness is a different thing.
Sorry but if a ramble but hopefully some help

 

[CardiffGirlInEssex]

My 88 year old mum has finally been diagnosed with mixed Alzheimer’s and vascular dementia. The doctor is calling her next week (with me present) to give her this information over the phone.
i want to ask what are the benefits of her knowing, She has a friend with dementia and always refers to it as the worst disease ever and she’s glad she hasent got it. I have not been brave enough to contradict her. What do you think

When mum was diagnosed I was asked by the memory clinic nurse if I thought mum would want to be told. I said yes, as mum has always been one to confront difficult situations and be direct about things. So she was told, and she hated me for it. What's more she didn't believe it, and still doesn't. However, she has now forgotten about the whole process and is fine with me except when she has delusions about me taking over the house and all her money. If you think your mum will be very upset by the diagnosis it might be better not to tell her directly, although as the diagnosis is on her record it's possible that another medic might tell her under other circumstances at some future date. Having the diagnosis is important because it opens the way to support of various kinds (in theory anyway!) But that doesn't mean your mum has to be told it directly.

 

[Betty65]

Dear @Betty65

It is hard to answer your question without a little more information. I have tried to answer as best I can and hopefully others will be along later.

1) Will your mother remember what is said to her by the doctor? If it will be immediately forgotten then little harm is done.
2) If your mum will remember and this will cause her ongoing distress I suggest you tell the doctor this. The way the news is given may well be changed, perhaps if the doctor is aware of this point. That will depend on the medical professional.

On the question of what benefit your mum will get from being told her diagnosis, based on your brief comments I would suggest little, if any, in terms of her actually knowing. Indeed if upset is likely please ensure the doctor is advised as stated above. Whether any treatment is then available I cannot say. My mum refuses to go back to the Memory Clinic so I am stuck with a diagnosis of Mild Cognitive Impairment from 2015. Most likely she has Vascular Dementia for which there is no treatment. Her condition worsens but mum does not want to know. As she told me once in a very emotional conversation “if I am going doally I do not want to know”. A different version of what you mum thinks. Hence I have no revised diagnosis, but a contented mum, just makes my carers journey a little harder. You would most likely be me if I had got us back to the Memory Clinic. With mixed Dementia not sure if any treatment is available.

If the doctor gives the diagnosis straight to your mother and there is upset consider the future. I refer to my mum’s blonde moments, we joke about her memory lapses, the Dementia word is never mentioned. Mum was initially in denial of her problem but as her understanding of her condition has weakened we have now slipped into “Anosognosia”. Please google that phrase. It makes it a little easier to understand where my mum now is, but does not get me any further forward in terms of the Memory Clinic. I will take my mum back when upset can no longer happen. I live with mum and care for her. I decided sometime ago there is no treatment for Vascular Dementia, it would destroy mum to be dragged back to the Memory Clinic so I will do it her way as regards caring. Her ongoing confidence and trust in me is vital to her welfare. I could not risk that relationship to get a paper diagnosis that would do nothing positive for mum.

Our circumstances are different but possibly similar in one important way. If mention of her condition will upset your mum then you will have to work around that. Offer help, support, etc, but always be mindful of the elephant in the room which cannot be talked about. In a strange way when the doctor talks to your mum it will be as much to you as it is your mum. The doctor ends the call and you and your mum are left to deal with her condition. My advice would be when talking to your mum accept her understanding of her condition, even if it is flat denial. In future just work around it in the practicalities of life. A formal diagnosis is a name for something, in terms of helping a loved one with Dementia it has little day to day practical value. In the end your relationship and how you can help your mum with her illness is a different thing.
Sorry but if a ramble but hopefully some help

Thank you - most helpful. I could ask her doctor if it is necessary for her to be the full blown diagnosis. As you say it will be me picking up the pieces thereafter. Yes, unfortunately this is something she would remember for ever. the doctor has mentioned a dementia team that we would be out in touch with but I am not sure how much of an involvement they will have. She would ask who these people are and what are they there for.
sadly mums dementia, whilst not that extreme yet has the horrible hostess dementia attached to it which means she is lovely to everyone but pretty vile to me. This does test my compassionate side and very recently pushed me into a carers breakdown. I am her only child in this country so I get everything.

 

[Whisperer]

Thank you - most helpful. I could ask her doctor if it is necessary for her to be the full blown diagnosis. As you say it will be me picking up the pieces thereafter. Yes, unfortunately this is something she would remember for ever. the doctor has mentioned a dementia team that we would be out in touch with but I am not sure how much of an involvement they will have. She would ask who these people are and what are they there for.
sadly mums dementia, whilst not that extreme yet has the horrible hostess dementia attached to it which means she is lovely to everyone but pretty vile to me. This does test my compassionate side and very recently pushed me into a carers breakdown. I am her only child in this country so I get everything.

Dear @Betty65

I am sorry to hear that. My mum is the exact opposite provided no mention is made of the elephant in the room. I use to attend a carers group on my own and mum would have been upset if she had ever known. Todate the same kind, considerate, loving mum as in the past. I am aware this might change but your position must be so much harder to deal with. With my mum I just have to accept her memory is now very badly impaired at all levels. My frustration is caused by the repeated asking of the same questions, particularly in the evening which I suspect is linked to sundowning starting.

Please tell the doctor how your mum is likely to take the news. Reading other threads here the support provided via the local mental health teams can be something of a postcode lottery. Please clarify what they can offer then you can decide how useful it would be to pursue that course of action. Future checks on the progression of your mum’s illness might very well cause a lot of upset for little gain. Hardest part of being a carer sometimes is juggling what is “best all round”, not just the theory. Ticks in boxes sometimes just have little practical value.

Please look after yourself. Best wishes for the future.

 

[donna1964]

My Dad was recently diagnosed with Dementia in June 2020. He is now on medication to slow things down. The Assessment took place at my home through a Video Assessment with the Consultant. When the Assessment had finished the Consultant asked if I could go into another room to discuss the outcome.... My Dad is now middle stage. My Mum and the rest of the siblings know the situation but we have not sat down with Dad and told him. I was afraid it would upset and distress him. I have felt we have walked through the dark at the beginning were support is concerned from the necessary people involved in his care...not everyone singing from the same hymn book and conflicting information. I feel its all about giving your loved one the best day every day, keeping them safe, comfortable and well cared for. Interacting and encouraging them in what they still know and giving them confidence. You know your Mum best and whatever you do will come from a loving place. Please take care of yourself too... you cannot look after your Mum if you are not looking after yourself...take all the help that is offered to you by friends & family... you will need a break from time to time. xxx

 

[Duggies-girl]

@Betty65 I worried myself sick abut this and dad was told three times that he had been diagnosed with alzhiemers. Once by the nurse who came to his home for his assessment and twice by the consultant at the memory clinic. I was never asked whether this was a good idea or not and from what I have read on here it seems quite the norm for the patient to be informed. As for dad he was fine each time and said he understood what it meant and thank you very much.

Different story once we were out of earshot of the nurse/doctor when dad informed me that 'they don't know what they are talking about because there is nothing wrong with me' apparently he was just being polite when he agreed and he would not be going back ever again. Each time he was told was the first time for him and he had no memory of the previous time and he promptly forgot about it anyway so I really wouldn't worry about it too much. He was also quite happy to take the memory tablets and I never mentioned the D word again.

 

[Up the Creek]

I had written to the doctor detailing my mum’s delusions and the doctor made an appointment to see her. It coincided with my Mum having problems with a swollen ankle so that’s what she thought she was going to the doctor to get sorted. While there the doctor said to her that while she was there she would like to give her a memory test, it’s something they did with older patients, and my mum agreed to it

Later when she was referred to the Memory Clinic and then to the hospital for a head scan she went along with no questioning.

Then we had lockdown...

At the end of May the MC made an appointment to go through the results by phone on the 1st June. I noted it on the calendar. On the 1st I turned the calendar to June but the next time I looked it was back at May! This gave me advanced notice that my mum wasn’t keen to get the results of her tests.

When the MC called my mum said no to the question did she want to receive her result. Because she had been through it all with my father who had had Alzheimer’s I was able to convince her that the results were important, and she agreed to hear them.

At that point in time it was crucial that I knew exactly what her diagnosis was even if she didn’t want to know. I’m the one that’s going to have to adapt and cope with things as they unfold in the coming months. I felt it was also important she had the results as it would explain why she felt something wasn’t right (if indeed she had any concern)

I have accepted that she doesn’t want to know about her dementia and nothing has been spoken about it since. She will be aware of her diagnosis and there doesn’t seem to be a need to discuss it or remind her of it.

 

[Starting on a journey]

The memory clinic made me tell mum as a condition of getting memantine. So I did it with all my kids present and told her she had a little bit of dementia and then we went to McDonald’s. I have never mentioned it since and ignored her if she says she is “dolally”. We cope with what life throws us on a daily basis. I really don’t think she needs to be reminded. Other people will be different

 

[Canadian Joanne]

My mother lived 15 1/2 years after diagnosis and we never told her. Just the word was enough to send her off. She once told a friend of mine, out of the blue, that she didn't have Alzheimers. I think in her heart of hearts Mummy realized there was something wrong but she fought ferociously against it for years and years.

I personally don't see the point. Even if the person forgets being told, the strong negative emotions can stay for ages. What good can possibly be done by telling someone? It seems more like a box-ticking exercise to me.

 

[Ramblingrose]

My mother doesn't remember anything about being diagnosed with dementia. At first my father tried to hide it from her and other people. I told him that friends and relatives already knew she had it just from speaking to her. Also I felt that if people knew, for example neighbours, they could help by letting us know if they saw anything unusual. Thankfully they have. Also people are more understanding if they know what is wrong. I suppose it is up to individuals how they deal with the elephant in the room.

 

[northumbrian_k]

Early on my wife was told by a doctor at a memory clinicthat she had Alzheimer's disease. She seemed to take it in but I believe that she did not really understand. She did not want to engage with any of the material on living well with dementia. If she remembered seeing the doctor she would ask me "how long have I got?". Sometimes she would say that she had cancer or that she had never seen a doctor. It was pointless trying to explain so I gave up. As the disease progressed she lost her grip on reality so the facts of her diagnosis were no longer relevant to her. In general I would say that telling someone their diagnosis is of little or no benefit and possibly counter-productive. People I know and trust are aware of her diagnosis and I never hide it if someone asks after her or if I need to explain my circumstances. She is at the stage now where other people knowing her 'private business' is not an issue.

 

[Toony Oony]

I didn't tell Mum her diagnosis of Vascular Dementia. She was very depressed at the time and her GP and I had a chat and we jointly decided that it would be in Mum's best interests not to mention the diagnosis. We thought she would panic, give up and go downhill fast. I think Mum guessed though, as she kept saying 'I'm not going funny, am I?' I used to reassure her keeping my fingers tightly x'd! Mum was never told, and only my husband and my daughter knew. I used to run around protectively warning medical staff in advance, not to mention the 'D' word.
On one occasion fairly early on, a locum Consultant Psych saw Mum at the Memory Clinic and the word accidentally slipped out. Mum was onto it like a ferret down a drainpipe! I was busy mouthing 'No' and shaking my head frantically behind Mum. The Consultant was brilliant and didn't miss a beat. She calmly stated that it was just a general medical term for someone whose memory is not as good as it was. She asked Mum if some of her friends had trouble walking now (Yes), were some hard of hearing? (Yes) .... she continued by saying that bits wear out as people get older. Sometimes it's their legs, or their ears, or their hearts ..... in Mum's case her memory was the thing that was wearing out. Mum was happy with the explanation .... especially as it came from the Dr!

It was difficult keeping it from Mum's friends and explaining away things that happened - but I managed it, although I think a couple of them guessed eventually. They thought I was awful and interfering when I made excuses and persuaded Mum not to do certain things that I knew would have caused huge problems without 'essential backup'. I was worried that if a situation had occurred, the truth would be out, and it could deeply hurt and embarrass Mum. Some friends were horrified when the GP and I made the decision that it was finally time for Mum to go into a CH - they had no idea what had been happening. So thankfully I managed to keep the secret well.

It is very difficult to keep this information 'safe' and you need to be very careful, forward thinking and cunning.
Sadly however, it will not be forever as there will come a time when the PWD is no longer aware.

 

[Grannie G]

I didn`t tell my husband until he asked. By the time he asked he knew it was serious but thought if he did the right thing he could recover. I didn`t correct him on this but went along with it.

However I did tell family, friends and neighbours so they would have some understanding of any unusual behaviours. I thought it was much easier than covering up for him and in his best interests, then people around him would be kinder towards him.

 

[Firecatcher]

I think whether you tell a person their diagnosis depends on their level of insight. My Mum was aware of her memory problems and word finding difficulties for a long time and sought help from her GP independently. As she knew something was wrong she definitely wanted to be informed about her diagnosis and subsequently tried to find out more about Alzheimer’s. The way her diagnosis was given was extremely poor as a nurse from the memory clinic phoned my father, casually told him Mum had Alzheimer’s and then left him to break the bad news. Support after that was limited to around three visits from a nurse over a four month period merely checking whether my Mum was having side effects to Memantine.

 

[hooperswan]

My mother was informed a few years ago we had both visited the doctors and then a consultant,she was fine with that and mind you she had probabably forgotten about it soon after anyway,I don't think it registered with her.She's bed bound in a hospital bed now at home as she can no longer walk,I used to worry that she would feel so frustrated and depressed that she was confined to a bed but she's unaware that's the case,in fact when I'm talking about the jobs I have to do for the day mum says "I will get up and help you in a minute son"Just knowing that she's not worrying helps me to carry on as I know she's happy with her life.
I'm blessed that she's still such a happy mum,in fact when she falls asleep during the day she still has a big smile on her face

 

[Betty65]

Today the doctor called mum - my daughter and I were there with the phone on speakerphone. The doctor was brilliant and told mum in a lovely way that all the tests and scan earlier in the year led to the diagnosis that mum had mixed Alzheimer’s and vascular dementia. My mum jumped in and said thank you for the information but I think you are wrong, theres nothing wrong with me apart from forgetting things sometime. The doctor continued with her conversation and advised that as she had advised mum of the diagnosis that the Dementia Navigation team would be in touch with help and support for mum and the family.
After the phone call she did not mention it again and it’s as though the conversation never happened. I was dreading a major melt down and tears so it just goes to show that with dementia patients expect nothing. There is no normal.

 

[Betty65]

I didn't tell Mum her diagnosis of Vascular Dementia. She was very depressed at the time and her GP and I had a chat and we jointly decided that it would be in Mum's best interests not to mention the diagnosis. We thought she would panic, give up and go downhill fast. I think Mum guessed though, as she kept saying 'I'm not going funny, am I?' I used to reassure her keeping my fingers tightly x'd! Mum was never told, and only my husband and my daughter knew. I used to run around protectively warning medical staff in advance, not to mention the 'D' word.
On one occasion fairly early on, a locum Consultant Psych saw Mum at the Memory Clinic and the word accidentally slipped out. Mum was onto it like a ferret down a drainpipe! I was busy mouthing 'No' and shaking my head frantically behind Mum. The Consultant was brilliant and didn't miss a beat. She calmly stated that it was just a general medical term for someone whose memory is not as good as it was. She asked Mum if some of her friends had trouble walking now (Yes), were some hard of hearing? (Yes) .... she continued by saying that bits wear out as people get older. Sometimes it's their legs, or their ears, or their hearts ..... in Mum's case her memory was the thing that was wearing out. Mum was happy with the explanation .... especially as it came from the Dr!

It was difficult keeping it from Mum's friends and explaining away things that happened - but I managed it, although I think a couple of them guessed eventually. They thought I was awful and interfering when I made excuses and persuaded Mum not to do certain things that I knew would have caused huge problems without 'essential backup'. I was worried that if a situation had occurred, the truth would be out, and it could deeply hurt and embarrass Mum. Some friends were horrified when the GP and I made the decision that it was finally time for Mum to go into a CH - they had no idea what had been happening. So thankfully I managed to keep the secret well.

It is very difficult to keep this information 'safe' and you need to be very careful, forward thinking and cunning.
Sadly however, it will not be forever as there will come a time when the PWD is no longer aware.

Thank you for Taking time to reply. I have found that sharing mums condition has helped me to deal with this sad condition. My family, extended family and friends have been amazing and a great support to me and mum. I am sure you have your reasons for secrecy but I’m not sure that I understand them. Thank you anyway