• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

T o diagnose or not

bemused1

Registered User
Mar 4, 2012
3,402
Have been following Dave k' thread with interest but thought it wasn't the place to raise this.
Almost 4 years ago husband changed into someone I didn't know almost over night. We had a bad year when I tried to convince him to see go and I spoke in vain to go who was not prepared to do anything unless he came to the surgery.Eventually I got him there on another pretext and surprise surprise she thought his memory and general behaviour were not what they were.
Referral to cpn and yes there was a problem. Did he want a brain scan- most emphatically. Not. Any other tests No.
So almost four years on we have no idea what kind of dementia he has and I am glad I didn't push him- he knows sometimes that all is not well but if he is happy not knowing then I am happy to spare him the process of diagnosis. Since we are self funding I learned very quickly that as were not in the least bothered about him so we have private carers and manage alone.
As to whether his family believe me or not I really do not care. I will not try to force him to face something he can't.
That is my experience but I realise this is not the way others see it. So what do you think, I would really like to know whether we are just odd in thinking that to knowing he has dementia is more important than the label or knowing what kind.
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
Have been following Dave k' thread with interest but thought it wasn't the place to raise this.
Almost 4 years ago husband changed into someone I didn't know almost over night. We had a bad year when I tried to convince him to see go and I spoke in vain to go who was not prepared to do anything unless he came to the surgery.Eventually I got him there on another pretext and surprise surprise she thought his memory and general behaviour were not what they were.
Referral to cpn and yes there was a problem. Did he want a brain scan- most emphatically. Not. Any other tests No.
So almost four years on we have no idea what kind of dementia he has and I am glad I didn't push him- he knows sometimes that all is not well but if he is happy not knowing then I am happy to spare him the process of diagnosis. Since we are self funding I learned very quickly that as were not in the least bothered about him so we have private carers and manage alone.
As to whether his family believe me or not I really do not care. I will not try to force him to face something he can't.
That is my experience but I realise this is not the way others see it. So what do you think, I would really like to know whether we are just odd in thinking that to knowing he has dementia is more important than the label or knowing what kind.
My husband has had some form of dementia for the last five years, actively, and obviously, for some time before that, I was seeing a few signs that pointed to it. After going through the hell of trying to get help and once, virtually being called a liar in my own home, it turns out that we neither get any support!

Tried to get scans done for both the dementia and for emphysema. Both failed to happen, the first because we were refused hospital transport - the second because I was told I couldn't accompany hubby to hospital. I actually knew the second scan would not happen, simply because of that scenario. The people who set it all up for me were shocked that hubs came away from hospital without his scan. I could have told them he wouldn't get it. I'd already been through the first trauma and knew what to expect. Sadly, I was right :(

A second scan for the emphysema was offered but turned down by OH. (He really does not know how unwell he is). A doctor's appointment was offered at the hospital for him, but he refused it. I am now working between crises, hopefully, there won't be any, unless that's just my own wishful thinking.

As long as you get some kind of support, bemused1; don't sweat the rest of it all, but do obviously keep an eye out for other medical needs which may crop up. I have heard that if the patient refuses help, the various services won't necessarily get involved, but that could differ throughout the country.

My best to you both.
 

Sue J

Registered User
Dec 9, 2009
8,035
Have been following Dave k' thread with interest but thought it wasn't the place to raise this.
Almost 4 years ago husband changed into someone I didn't know almost over night. We had a bad year when I tried to convince him to see go and I spoke in vain to go who was not prepared to do anything unless he came to the surgery.Eventually I got him there on another pretext and surprise surprise she thought his memory and general behaviour were not what they were.
Referral to cpn and yes there was a problem. Did he want a brain scan- most emphatically. Not. Any other tests No.
So almost four years on we have no idea what kind of dementia he has and I am glad I didn't push him- he knows sometimes that all is not well but if he is happy not knowing then I am happy to spare him the process of diagnosis. Since we are self funding I learned very quickly that as were not in the least bothered about him so we have private carers and manage alone.
As to whether his family believe me or not I really do not care. I will not try to force him to face something he can't.
That is my experience but I realise this is not the way others see it. So what do you think, I would really like to know whether we are just odd in thinking that to knowing he has dementia is more important than the label or knowing what kind.
I don't think you are odd Bemused at all and given the hurdles there are in getting a diagnosis and your experiences where your only support I think? has been through this forum , it proves much easier to just get on with living it rather than add to your battles trying to get a diagnosis. He is lucky to have you on his side.:)

However, the situation re. dementia care as we all know is dire. Diagnosis is only of real value when appropriate care and resources, understanding and training follow from that. Without the latter, getting a diagnosis can add to people's difficulties because the sufferer can use it as ammunition in 'arguments'. Or you get a diagnosis and are left :confused: when you are already:confused: as to why they have told you what you have and then don't help.

It is because of my past training and experience that I recognized, and continue to, my own symptoms. I have tried to fight for a diagnosis I really don't want, but know because I have EO, that I need in order to be able to keep any roof over my head. I still after 5 years have no real diagnosis but may be slowly getting somewhere. Like your experience Chuggalug, I couldn't go to the things they wanted me to go to because I was too ill, mentally and physically, depsite my local CMHT labelling me as severely mentally unwell, and a careplan that stated I needed a support to get a diagnosis they took any CPN support away and then took me off their books because my needs were 'too specialist'. I did get a scan and the result 'You don't have a brain tumour' - I can come to terms with a dementia diagnosis and am, my own, but the medical world are not helping by their own denials, the medics I get on best with are those able to acknowledge, like I have, to that something is seriously wrong. I am aware my perspective on it may well change to total denial!

Without the support from here and very good friends I can't think where I would be.

I do believe though that people with dementia can be given a better quality of life and an accurate diagnosis should be a signpost for tailored care for caree and carer - as we all know you can't have one without the other and often without realising it I think that TP members are pioneers in the process of what I hope will lead to improvements in diagnoses and pathways of tailored care. I have said before it is here that the researchers should be reading and learning.

Best to all on TP, or not, diagnosis or not, struggling with this disease.
Sue
 
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Wolfsgirl

Registered User
Oct 18, 2012
1,028
Nr Heathrow, Mum has AD & VD
It sounds to me like you are doing well without a diagnosis and I would say if everything is working well for you both, and you especially have support, then not to worry as we are all different. :)
Have been following Dave k' thread with interest but thought it wasn't the place to raise this.
Almost 4 years ago husband changed into someone I didn't know almost over night. We had a bad year when I tried to convince him to see go and I spoke in vain to go who was not prepared to do anything unless he came to the surgery.Eventually I got him there on another pretext and surprise surprise she thought his memory and general behaviour were not what they were.
Referral to cpn and yes there was a problem. Did he want a brain scan- most emphatically. Not. Any other tests No.
So almost four years on we have no idea what kind of dementia he has and I am glad I didn't push him- he knows sometimes that all is not well but if he is happy not knowing then I am happy to spare him the process of diagnosis. Since we are self funding I learned very quickly that as were not in the least bothered about him so we have private carers and manage alone.
As to whether his family believe me or not I really do not care. I will not try to force him to face something he can't.
That is my experience but I realise this is not the way others see it. So what do you think, I would really like to know whether we are just odd in thinking that to knowing he has dementia is more important than the label or knowing what kind.
 

bemused1

Registered User
Mar 4, 2012
3,402
Chuggalug and sue -you've both pointed out the reasons I have not pushed to get my husband diagnosed- it leads nowhere and for difficult people like my husband it's just a cop out to say he refuses this that or the other- duh he's ill. Yes sue as far as the dementia goes I have had no support except this forum. BUT how much have I learned. I get far more support and help dealing with husbands medical problems.
Sue I hope that at least a diagnosis will give you the security of a home
I am in despair with the state of dementia care and indeed all mental health care. From my own experiences with my husband and also many years ago with my mother who was severely bipolar I am not convinced that the 'experts' have the answers.As you say sue the community of tp is a greater source of knowledge.
 

Raggedrobin

Registered User
Jan 20, 2014
1,427
It is an interesting dilemma. i suppose one advantage of diagnosis is that different drugs may be helpful for different types of dementia, so knowing which sort helps with that. Also to check it isn't something else, like a brain tumour (although as your oh has been ill for so long it would be unlikely.

i agree though that the nhs pathway for people with dementia is really not very clear and seems to be a bit of a lottery how much help and support you get, if any, and whether it is any use or not.
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,531
Dundee
My husband was diagnosed over 13 years ago. I'm glad we got the diagnosis as it allowed him to have access to medications. I have no way of knowing if he would have declined more quickly without them but I wasn't prepared to find out. He is now on no dementia medications but as far as I am concerned we possibly got some time from them. He has Alzheimer's so medications were appropriate for him.
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
My husband did have a CT scan initially, which showed nothing. The Consultant has him down as having Alzheimers with pronounced paranoid psychosis/hallucinations - but he told me that my husband doesn't actually have the classic Alzheimer's symptoms - he doesn't really "fit" any of the types -so he may have a mixed dementia. The Consultant also said that he would have thought Lewy Bodies, given the pronounced hallucinations etc. my husband had - but he has none of the other symptoms of Lewy Bodies. So, we never pursued getting a more definitive diagnosis. He certainly has Dementia and is now in the late stages. It hasn't helped that he had lifelong mental health problems. A more precise diagnosis wouldn't have stopped the progression - and he has been on all the meds he needed as things cropped up. Granted, getting the right ones was a bit trial and error, but we got there.
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
My husband did have a CT scan initially, which showed nothing. The Consultant has him down as having Alzheimers with pronounced paranoid psychosis/hallucinations - but he told me that my husband doesn't actually have the classic Alzheimer's symptoms - he doesn't really "fit" any of the types -so he may have a mixed dementia. The Consultant also said that he would have thought Lewy Bodies, given the pronounced hallucinations etc. my husband had - but he has none of the other symptoms of Lewy Bodies. So, we never pursued getting a more definitive diagnosis. He certainly has Dementia and is now in the late stages. It hasn't helped that he had lifelong mental health problems. A more precise diagnosis wouldn't have stopped the progression - and he has been on all the meds he needed as things cropped up. Granted, getting the right ones was a bit trial and error, but we got there.
Oh, that's interesting, LadyA. As I've watched my husband over the last five years and read through the various types of dementia, hubby also doesn't seen to 'fit' any of the types either. He shows a lot of Alzheimers' signs, but there are other things as well which happen. I'm so glad you got support.

I've always been too terrified to reveal everything that happened to me, even on here when I sought support. You may find bits and pieces of some of the 'events', but what I'm always afraid of the most is scaring any of the rest of you who are caring for someone with this.

Oh boy! God bless and help us all...
 

Noorza

Registered User
Jun 8, 2012
6,542
I think the emotional welfare of the dementia sufferer also has to be factored in. If the person is unwilling to accept a diagnosis of dementia, it can be emotionally difficult for them. It could be devastating. As Izzy rightly points out that the medications can extend the quality and quantity of life, then it is the right thing to do. There is a saying on AS that if you have met one person with dementia then you have met one person with dementia. I love Izzy's thread as she shows how to live with dementia and not suffer from it.

It may well be worthwhile to find out if medication is an option, it is not suitable for everyone, that too may help you decide the best way forward.
 

Noorza

Registered User
Jun 8, 2012
6,542
My husband did have a CT scan initially, which showed nothing. The Consultant has him down as having Alzheimers with pronounced paranoid psychosis/hallucinations - but he told me that my husband doesn't actually have the classic Alzheimer's symptoms - he doesn't really "fit" any of the types -so he may have a mixed dementia. The Consultant also said that he would have thought Lewy Bodies, given the pronounced hallucinations etc. my husband had - but he has none of the other symptoms of Lewy Bodies. So, we never pursued getting a more definitive diagnosis. He certainly has Dementia and is now in the late stages. It hasn't helped that he had lifelong mental health problems. A more precise diagnosis wouldn't have stopped the progression - and he has been on all the meds he needed as things cropped up. Granted, getting the right ones was a bit trial and error, but we got there.

A mental health specialist once said to me that mental health is like the Olympic rings

There are so many areas that cross over, it's impossible to unravel it and have it cut and dried. The specialist even apologised that all she could find was OCD as if there should have been more to find. That was more than enough to digest!!!! We later had a diagnosis of autism. For us it opened doors, he could access CBT's, school support, out of hours clubs run my children's mental health charities, medications, extra time in exams to name but a few.

If it makes a difference to the quality of life then go for it, if it doesn't then personally I would not pursue it.
 

bemused1

Registered User
Mar 4, 2012
3,402
A mental health specialist once said to me that mental health is like the Olympic rings

There are so many areas that cross over, it's impossible to unravel it and have it cut and dried. The specialist even apologised that all she could find was OCD as if there should have been more to find. That was more than enough to digest!!!! We later had a diagnosis of autism. For us it opened doors, he could access CBT's, school support, out of hours clubs run my children's mental health charities, medications, extra time in exams to name but a few.

If it makes a difference to the quality of life then go for it, if it doesn't then personally I would not pursue it.
I think the difference is that for many people a diagnosis of dementia opens no doors at all.For me it comes down to the choice between do you want a few more years with the knowledge of what may happen and the possibility of medication or do you want to enjoy the last years without knowledge.My husband is in the latter category and the choice as far as I am concerned is his not mine.
Chuggalug in view of your experiences would you do the same again? Or is that an impossible question?
 

nmintueo

Registered User
Jun 28, 2011
847
UK
I would really like to know whether we are just odd in thinking that to knowing he has dementia is more important than the label or knowing what kind.
I rather agree. For myself, I'd want a diagnosis, but precise diagnosis would matter a lot more if led to a useful prognosis or - especially - to effective treatment. Currently, it doesn't really do that terribly well.

So if the patient adamantly resists diagnostics, why insist?

I would not, however, use the lack of a diagnosis as, for example, a dodge to keep an undiagnosed dangerous driver at the wheel. And I suppose having a diagnosis may have other uses in terms of accessing services or benefits.
 

Dave K

Account Closed
Apr 14, 2014
1,426
57
Barnsley (UK)
Great thread by the way...

"To diagnose or not"

Is my wife refusing to have a diagnosis - No

Would I push her to get a diagnosis - No

Would I take her kicking and screaming for a diagnosis - No

Do I feel that a diagnosis would be beneficial - Yes

I am hoping to bring help to my wife though I know there is little help out there but once registered with a diagnosis then and if (a big) if there is a breakthrough that can help AD sufferers (or a cure) then my wife will be already on the list

The second reason is that I can not cope on my own so want all other family members in support and offer a little assistance and help so that I can live my life in a manner that is normal to non sufferers and non carers

Have I done the right thing in going for a diagnosis

I do not know yet, I will come back on that one in a few weeks as hopefully, my wife's diagnosis will be given tomorrow

Would I consider putting my wife in a care home - Yes

I would ONLY consider putting my wife in a care home if and ONLY if she became a danger to herself or others

I have no intention of shipping my OH away because of the diagnosis (slightly off topic but I thought I would mention this anyway.

My views only...

Like I said "Great Thread"
 

Sue J

Registered User
Dec 9, 2009
8,035
I can live my life in a manner that is normal
Dave when you have found out what that is can you let me know please:D;):D

Dementia is a disability, having a broken leg is a disability would you consider being abnormal if you had a broken leg?

How we use language affects perceptions of people with disabilities.
 

bemused1

Registered User
Mar 4, 2012
3,402
Sue that is so true and I know that there is a lot of sympathy for my husband's physical problems but mention dementia or memory problems in this neighbourhood(mainly elderly people) and there is a definite aura of 'I wonder what he did to get that when I haven't.'
Dave I hope diagnosis will bring your family on side. My husband's children from his first marriage would not help-two broke off contact 30 years ago. The third with whom I get on quite well can see the changes in her father but really does not want to be involved with his care in any way.Can they think outside the box that stigmatises mental illness?

So i nteresting to see how differently people think.For me I am quite sure that giving my husband the peace he wants for as long as possible is the right thing to do.
 

Kijo

Registered User
Feb 9, 2014
31
Fortunately B was/is interested in staying healthy as there is a history of "bad hearts" in his family tree, so it has never been hard to get him to doctors.
For our case (in Canada), the diagnosis was important - not only for me to know what we are battling, but for financial support as well. B is on permanant disability now, after no employment or funds for 2 years prior to diagnosis. Due to the diagnosis (and filling out tons of forms), he receives a monthly pension that helps immensely.
As well, he is on Aricept due to the diagnosis, and although there is no real knowing if it is making a difference, it helps me feel we are doing something to try and battle the progression of this beast.
I personally can't imagine dealing with this long term without having a diagnosis, and I believe everyone has their own shoes to walk in with this desease. I wish there was a path to walk where someone has cleared the way and has ALL the answers, but each of us just has to dive into the brambles and hope we don't get stuck.
I just know I couldn't dive in without having found the TP family as it is my biggest source of support.
 

Dave K

Account Closed
Apr 14, 2014
1,426
57
Barnsley (UK)
Dave when you have found out what that is can you let me know please:D;):D

Dementia is a disability, having a broken leg is a disability would you consider being abnormal if you had a broken leg?

How we use language affects perceptions of people with disabilities.
Sue, I am so sorry if I offended you in anyway.

Maybe I worded it wrong to which I apologise for.

What I meant to say and am now thinking before I reply is that I do not have AD, I do not have a broken leg. my wife, I believe has AD (to be confirmed) but she does not have a broken leg

Yes I know that AD is a disease, a terrible disease, a hidden disease and generally a disease that most folk can not comprehend, understand or will tolerate.

Hidden diseases are dismissed lightly whereas a broken leg with bones sticking out or a cut where blood can be seen pouring from a would, even if only minor, are treated with more compassion and help than a hidden disease that can not be seen on the outside.

I am not one of those folk that, "if you can not see it then it is imaginary". I generally care for the well-being of my wife.

I also have to look after myself, when I am down my wife is down, my son is down, everyone is down. I have to be the rock but rocks can sometimes break with catastrophic consequences, I do not want to be a broken rock.

I need to look after my wife and myself so I can continue to look after my wife.

Again, I am sorry if I offended you, I never meant to be flippant to AD sufferers...

I can say no more than I apologise if I have offended you
 
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Sue J

Registered User
Dec 9, 2009
8,035
Sue, I am so sorry if I offended you in anyway.

Maybe I worded it wrong to which I apologise for.

What I meant to say and am now thinking before I reply is that I do not have AD, I do not have a broken leg. my wife, I believe has AD (to be confirmed) but she does not have a broken leg

Yes I know that AD is a disease, a terrible disease, a hidden disease and generally a disease that most folk can not comprehend, understand or will tolerate.

Hidden diseases are dismissed lightly whereas a broken leg with bones sticking out or a cut where blood can be seen pouring from a would, even if only minor, are treated with more compassion and help than a hidden disease that can not be seen on the outside.

I am not one of those folk that, "if you can not see it then it is imaginary". I generally care for the well-being of my wife.

I also have to look after myself, when I am down my wife is down, my son is down, everyone is down. I have to be the rock but rocks can sometimes break with catastrophic consequences, I do not want to be a broken rock.

I need to look after my wife and myself so I can continue to look after my wife.

Again, I am sorry if I offended you, I never meant to be flippant to AD sufferers...

I can say no more than I apologise if I have offended you
You haven't offended me Dave, I know what you are about hence:D;):D

It was more a questioning statement not aimed at you but given the title of the thread .:)

No offence taken.:)
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
My oh has diagnosis of AD and vascular dementia and has therefore the medication to slow it down and has opportunity to change to a different one. Do we get any help? No, not really but the doctors can at least keep an eye on urine infections, mini strokes and other illnesses that can be a byproduct of dementia. He is 4 years on and is holding up well so far. We do have memory lapses, confusion and pacing and repeated questions but muddle through and we still have a lot of lovely and good days :) He knows about his dementia and does get frustrated and scared but we also laugh and enjoy every day . Diagnosis for us is helping to make sure he has medication to slow it down and is also monitored :)


Sent from my iPhone using Talking Point
 

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