My husband was diagnosed with early onset dementia 2 years ago at 62. He had been displaying noticeable symptoms 3 years prior to that. However even with all the awareness and info available on dementia he is relativity unaware of how the condition will progress and sees it simply as his memory will get worse. It is not that he is in denial he literally is just not aware of the implications and has not been in contact with anyone in the later stages. On the other hand I am well aware of the difficulties ahead however I do not see any valid reason sitting down with him and going through what will happen as things progress. Some people feel that he has the right to know and I wondered what Forum Members thought about it
Should I explain to my husband what will happen in the later stages of dementia
- Thread starter aliceferg
- Start date
I wouldnt. There is nothing that he can do about it and will either just upset him or make him angry. He is also unlikely to recognise the symptoms in later stages.
If my wife asks me questions I answer them. I believe that people have a right to an answer if they ask a question and that they may be empowered by the knowledge if they still have the ability to ask the question in the first place. However, I always start my answers by mentioning that everyone is different so there isn't any certainty of what may happen.
My wife is aware that she has dementia and apart from a short period after diagnosis has not since been in any form of denial. Her questions are usually prompted by some behaviour she has noticed herself and she wants to know if it's how dementia goes. She doesn't notice every behaviour trait and I wouldn't dream of pointing anything out or sitting her down for a summary of her possible future. I just tell her not to worry because I'll always be there for her.
I always find these situations tough from the point of view that I don't know for certain whether I'm doing the right thing. That said, I take my example from her Consultant who just bluntly told her that she had dementia when handing out his diagnosis. Let's face it, we are all just doing our best in a difficult situation.
My wife is aware that she has dementia and apart from a short period after diagnosis has not since been in any form of denial. Her questions are usually prompted by some behaviour she has noticed herself and she wants to know if it's how dementia goes. She doesn't notice every behaviour trait and I wouldn't dream of pointing anything out or sitting her down for a summary of her possible future. I just tell her not to worry because I'll always be there for her.
I always find these situations tough from the point of view that I don't know for certain whether I'm doing the right thing. That said, I take my example from her Consultant who just bluntly told her that she had dementia when handing out his diagnosis. Let's face it, we are all just doing our best in a difficult situation.
Thank you. I talked it over with our two sons and they agree with me so I have family support
Yes I think I would do the same if my husband asked any questions or noticed any change in behaviour but mainly he puts things down to bad memory or the problems he has with balance. Thank you for your reply .
Hi @aliceferg ,
With my husband I chose, for the most part, not to tell him what might come. He was aware he had dementia and accepted it - but his knowledge of dementia was that of an average person who has never actually come across someone who has it- i.e. he knew it affected the memory but little else.
That's not to say that I did not explain things as they arose. He would become frustrated at not being able to do the things he once did and, in the early days he was aware of that loss of ability. He would say it was because he was 'stupid'. Well, I wasn't going to let him go around thinking that, so I explained that it was because of his illness, and that brought him peace.
When we were putting the POA together I did tell him that in some circumstances (but not all) a person with dementia might develop challenging behaviour which could become a threat to others, including close family. It was then his decision to state in his POA that he wanted to be cared for at home but that he would want to go into a care home should he become a threat to his wife and children within the family home. I gave him the info on that occasion so he could make an informed choice.
But, as for a more detailed discussion about what might happen in future, no I didn't burden him with all that. I saw it as my role as carer to research what might happen and how to handle and prepare for it as best I could. I found what I read very hard going and scary at times so I was determined not to put that worry and fear on my husband's shoulders too - I felt that he had enough to contend with through the diagnosis itself.
If I had to do it all again, I would take exactly the same approach. For the most part my husband remained happy after diagnosis and, fortunately, he was unable to remember the more difficult and very challenging times which raised their head from time to time. The difficult times were not an accurate and balanced picture of my husband's overall experience and I am glad he did not worry about them in advance.
With my husband I chose, for the most part, not to tell him what might come. He was aware he had dementia and accepted it - but his knowledge of dementia was that of an average person who has never actually come across someone who has it- i.e. he knew it affected the memory but little else.
That's not to say that I did not explain things as they arose. He would become frustrated at not being able to do the things he once did and, in the early days he was aware of that loss of ability. He would say it was because he was 'stupid'. Well, I wasn't going to let him go around thinking that, so I explained that it was because of his illness, and that brought him peace.
When we were putting the POA together I did tell him that in some circumstances (but not all) a person with dementia might develop challenging behaviour which could become a threat to others, including close family. It was then his decision to state in his POA that he wanted to be cared for at home but that he would want to go into a care home should he become a threat to his wife and children within the family home. I gave him the info on that occasion so he could make an informed choice.
But, as for a more detailed discussion about what might happen in future, no I didn't burden him with all that. I saw it as my role as carer to research what might happen and how to handle and prepare for it as best I could. I found what I read very hard going and scary at times so I was determined not to put that worry and fear on my husband's shoulders too - I felt that he had enough to contend with through the diagnosis itself.
If I had to do it all again, I would take exactly the same approach. For the most part my husband remained happy after diagnosis and, fortunately, he was unable to remember the more difficult and very challenging times which raised their head from time to time. The difficult times were not an accurate and balanced picture of my husband's overall experience and I am glad he did not worry about them in advance.
My husband's mum had Alzheimer's which was very bad. His illness is progressing very differently to the way hers did so he doesn't really believe that he has it. In the early days, I asked him if he wanted to know what was possibly in the future and he replied that he could always Google it if he wanted to know.
So that has been that. He has recently been having some bowel issues and has all sorts of tests and nothing to find. I suggested that it might be something to do with the Alzheimers and he told me that I was being ridiculous. So we don't go down that route any more.
So that has been that. He has recently been having some bowel issues and has all sorts of tests and nothing to find. I suggested that it might be something to do with the Alzheimers and he told me that I was being ridiculous. So we don't go down that route any more.
Thank you very helpful. In Northern Ireland we have EOA Enduring Power of Attorney but that is just used for any financial issues.... does POA cover where you live eg nursing home / what medication you are given etc etc.?
Thank you this was helpful. My husband is bothered by bowel issues ie constipation but I hadn't thought on the possibility of it being related to Alzheimers but I have now done a bit of research and realise that in some cases it can be related so thank you for making me more aware
Yes, there are two types of POA in England and Wales - one covers Finance and Property matters and the other is for Health and Welfare matters. We took both types out in the hope that all eventualities would be covered, and in our case, we ended up using both.
The reference to my husband wanting to be cared for at home unless he turned violent towards us was made within a section of the Health and Welfare POA where he could list his 'preferences'. It didn't mean that it was set in stone, but it was a guideline for us to know what he hoped for and to try to work towards that outcome.
I’m not sure I get this for the following reason you don't wake up one morning and have Dementia unless its through some injury dementia is progressive, I was asked at age of 57 by my G.P if I would see a Consultant in Old Age Psychiatry I did and after an full examination, blood tests and
memory test over a two month period, Obviously I wanted to know the results of this tests the Consultant told me straight out I had Mild Alzheimer’s and asked if I would be prepared to go on a relatively new drug still which was at that time still in its infancy in UK , some three years later after PET & SPECT brain scans I was told had frontal-temporal-dementia, I find it difficult to comprehend you can be diagnosed with a medical condition and not carry out any research on the condition. Irrespective of the Condition
memory test over a two month period, Obviously I wanted to know the results of this tests the Consultant told me straight out I had Mild Alzheimer’s and asked if I would be prepared to go on a relatively new drug still which was at that time still in its infancy in UK , some three years later after PET & SPECT brain scans I was told had frontal-temporal-dementia, I find it difficult to comprehend you can be diagnosed with a medical condition and not carry out any research on the condition. Irrespective of the Condition
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Hi thank you for your reply. I can fully understand why you would think it strange that my husband would not research his condition as you are right most people would want to find out as much information as possible. The main reason would be that he is not 'tech savvy' and seldom has reason to be on the internet and he also reads very little. He is dyslexic and has always found processing information a real struggle and relies on me for finding out any important relevant information, which of course I have done and I have also attended 8 weeks Awareness Training Sessions so hopefully I will be able to tell him whatever he wants to know about his condition when he asks. Short term memory dysfunction / poor organisational skills / difficulty processing information accurately are some of the symptoms of dyslexia which are similar to some of those re dementia which in a way 'hid' his dementia for a quite a few years as we had been so used to his poor memory etc we just put it down to dyslexia. But of course other things started to show and it became apparent to me that there was something more serious. However in general my husband himself is not really aware of any real changes in his behaviour which apparently often happens... he is only aware if I mention it which I only do if it is something that is necessary.
Not sure this answers your question but I hope it is helpful
Not sure this answers your question but I hope it is helpful
Many people find the idea of having any form of dementia quite frightening and often because of the illness they have little or no insight into their condition. There are those on TP who quite clearly understand what is ahead of them but for many, they are in denial about being a dementia sufferer. As you know, this disease creeps up on us for some time before there is a diagnosis and often the person puts up a good front for some time before their behaviour is noticed.Hi thank you for your reply. I can fully understand why you would think it strange that my husband would not research his condition as you are right most people would want to find out as much information as possible. The main reason would be that he is not 'tech savvy' and seldom has reason to be on the internet and he also reads very little. He is dyslexic and has always found processing information a real struggle and relies on me for finding out any important relevant information, which of course I have done and I have also attended 8 weeks Awareness Training Sessions so hopefully I will be able to tell him whatever he wants to know about his condition when he asks. Short term memory dysfunction / poor organisational skills / difficulty processing information accurately are some of the symptoms of dyslexia which are similar to some of those re dementia which in a way 'hid' his dementia for a quite a few years as we had been so used to his poor memory etc we just put it down to dyslexia. But of course other things started to show and it became apparent to me that there was something more serious. However in general my husband himself is not really aware of any real changes in his behaviour which apparently often happens... he is only aware if I mention it which I only do if it is something that is necessary.
Not sure this answers your question but I hope it is helpful
My husband fought me for three years before we finally got a diagnosis. Knowing how bad his mother had been with Alzheimer's he couldn't face the fact that he might have the same condition and who could blame him?
Denial is very common if you read some of the threads on this site. My husband was diagnosed almost five years ago and there have only been three or four times when he has been willing to have any sort of discussion about what lies ahead. And as life expectancy for a person with dementia can vary a great deal, I am not surprised that a patient might rather bury their heads in the sand than look dementia in the face.
Hi thank you for your reply. I can fully understand why you would think it strange that my husband would not research his condition as you are right most people would want to find out as much information as possible. The main reason would be that he is not 'tech savvy' and seldom has reason to be on the internet and he also reads very little. He is dyslexic and has always found processing information a real struggle and relies on me for finding out any important relevant information, which of course I have done and I have also attended 8 weeks Awareness Training Sessions so hopefully I will be able to tell him whatever he wants to know about his condition when he asks. Short term memory dysfunction / poor organisational skills / difficulty processing information accurately are some of the symptoms of dyslexia which are similar to some of those re dementia which in a way 'hid' his dementia for a quite a few years as we had been so used to his poor memory etc we just put it down to dyslexia. But of course other things started to show and it became apparent to me that there was something more serious. However in general my husband himself is not really aware of any real changes in his behaviour which apparently often happens... he is only aware if I mention it which I only do if it is something that is necessary.
Not sure this answers your question but I hope it is helpful
Hi aliceferg yes thanks you have explained well , personally I think with modern medical knowledge people are getting diagnosed at the early stage of dementia unlike years ago it wasn't diagnosed until the latter or very late stage of the disease and then everyone noticed the change we called it Senile-dementia but things have progressed, as I said previously I was diagnosed with Alzheimer’s in 1999 but didn’t necessarily agree I had dementia because I felt completely normal and well however I was started on medication, in 2001 under a new Consultant I challenge my diagnose continually and was sent for a PET brain scan March 2003 and 12 month later a SPECT scan obviously the scan’s showed damage to the temporal lobes so that was a definite problem hence the diagnosed me FTD like your husband I have never read a book in my life apart from reference books but that’s for information I don’t think my dementias hasn’t held me back it never stopped me working or driving so after 20 years it's not that bad ok because of my age now I do have other medical issues probably little more serious than dementia but I will face them the same way for as long as possible , the thing is I’m still above ground at moment
hope all goes well for you and you husband if he is happy maybe best leave things as they are
The (non-)answer is that it depends on your husband's nature and the effect dementia has on him. I've known people who will aggressively deny they have dementia right up to the end.
I suppose I've been lucky in that my wife realised she was "losing her marbles" (her words not mine) and accepted it in a positive manner as "I've got Alzheimer's, what can I still do?".
We've tried to jointly make positive steps to make her feel more secure in her increasingly confusing world. Although she is aware of the overall progress of her dementia we never discuss it in medical terms, just what she will be doing.
This makes it sound as if I've found the perfect solution - NO WAY - things go wrong and we get as tired, angry and frustrated as anyone else, These are the good bits of a very rocky path. Hopefully there is something you can pick out to add to the extensive good advice you've received already.
"Positive" actions were:
I suppose I've been lucky in that my wife realised she was "losing her marbles" (her words not mine) and accepted it in a positive manner as "I've got Alzheimer's, what can I still do?".
We've tried to jointly make positive steps to make her feel more secure in her increasingly confusing world. Although she is aware of the overall progress of her dementia we never discuss it in medical terms, just what she will be doing.
This makes it sound as if I've found the perfect solution - NO WAY - things go wrong and we get as tired, angry and frustrated as anyone else, These are the good bits of a very rocky path. Hopefully there is something you can pick out to add to the extensive good advice you've received already.
"Positive" actions were:
Tell everyone, it's not something to be ashamed of. (Ignoring some of the "expert" replies is a bit more difficult).
Sort out LPAs so my wife didn't have to worry because she couldn't understand her money.
Sign up for brain donation and Join Dementia Research. My wife always wanted to donate her organs so this seemed a positive thing to do. As a result we've met some interesting researchers and visited some hospitals and universities.
Join the local Dementia Cafe, Singing for the Brain etc. These provide an environment where a person's condition doesn't matter. They enable us to meet people with a wide range of conditions so my wife feels that what is happening to her is normal (there must be a better word). They are also good places for getting tips and local advice. I particularly recommend these for helping a person gain an awareness of their condition.
Sort out a care home. This isn't possible for everyone but my wife selected her own care home which deals with daycare through to nursing care. From daycare she knows many of the residents so staying there for respite care wasn't an issue for her.
If only life were that simple.Sign up for brain donation and Join Dementia Research. My wife always wanted to donate her organs so this seemed a positive thing to do. As a result we've met some interesting researchers and visited some hospitals and universities.
Join the local Dementia Cafe, Singing for the Brain etc. These provide an environment where a person's condition doesn't matter. They enable us to meet people with a wide range of conditions so my wife feels that what is happening to her is normal (there must be a better word). They are also good places for getting tips and local advice. I particularly recommend these for helping a person gain an awareness of their condition.
Sort out a care home. This isn't possible for everyone but my wife selected her own care home which deals with daycare through to nursing care. From daycare she knows many of the residents so staying there for respite care wasn't an issue for her.
