Can I just ask...

[Kate P]

Aren't you all sick of my infernal questions already?!

I was wondering how easy other people have found it getting a firm diagnosis?

We're currently finding it very difficult. Our GP believes that mum has AZ or semantic dementia and wanted her to have a brain scan which she is refusing to consent to (we think - she gets confused between "yes" and "no" but I think in this case she is on a definite "no").

Dad managed to get her to an assessment set up by our GP but the first time he said he was busy and told her to keep a diary - a fine feat for a woman who can't speak and gets confused writing.

The second appointment he refused to speak to my dad, took mum in a room by herself and then declared she had a "block". We have no idea what went on in the room because obviously mum is unable to tell us.

We've now asked for a referral to someone else for a second opinion but I'm worried about the same thing happening again and to be honest my dad's at boiling point over the whole thing as mum is starting to go down hill very quickly (she no longer understands money, can't cook or follow simple instructions and insists on visiting Tesco several times a day).

Can we get a diagnosis just from these assessments or is a brain scan necessary at some point?

 

[Grannie G]

Hi Kate,

No one will ever get sick of your questions, ask away. If they can be answered they will be, but it`s not often possible.

I`m really disappointed the GP shut your dad out. I have never had any resistance from any medics my husband has seen.

As for a firm diagnosis, that`s a difficult one.

When my husband had a scan, he was told there was brain shrinkage and offered Aricept. Because of this, we presumed he had Alzheimers, although the term wasn`t actually used. Now, because he is diabetic and I had concerns about his behaviour, I asked if he could have VaD, and was told it was probable.

All I know is he has dementia. What specific type of dementia is really unimportant, as the Alzheimer drugs disagree with him, and all he takes are anti-depressants.

If you need a diagnosis in the hope of medication, then you will have to persevere.

Good luck.

Love xx

 

[Skye]

Aren't you all sick of my infernal questions already?!

No, absolutely not, it's why we're here, provided you accept that we're not experts, just carers like you who are a bit further along the road.

I was wondering how easy other people have found it getting a firm diagnosis?

I didn't have any difficulty, but then John has never been unco-operative. We went straight from GP to MMSE to consultant to scan to diagnosis in the space of a month. (The fact that the diagnosis was later changed is irrelevant)

I do think you need to demand a referral to a consultant. Your GP sounds a dead loss, I can't understand why he is fobbing you off.

Normally a consultant would see your dad and your mum separately, then together to see how they interact.

Can we get a diagnosis just from these assessments or is a brain scan necessary at some point?

As I understand it, the scan is to confirm brain shrinkage (which the MMSE test indicates anyway), and to check that there is not a tumour. It doesn't tell you what form of dementia it is, I was told by our consultant that that can only be confirmed at autopsy. It could be that a consultant will diagnose without the scan, you'd have to ask.

 

[annesharlie]

Kate

It's wonderful to have you posting this much, there is lively discussion and always something new to read when I log on.

From what I understand with dementias it's actually quite difficult for them to be specific. The scan rules out bleeds or tumors, but then it's cognitive testing which can tell them which parts of the brain are affected. Even then it's not always a definite diagnosis. With Ron they've done some of the testing and tell me that it looks like FTD but he does have some features of Alzheimer's. They will test again in about 8 months, and that will give them an idea which areas of the brain are worsening and at what rate. They then - may - have a clearer idea of prognosis.

I actually said I didn't really care what kind of dementia it is - none of them are curable, all horrible to live with. There are no really good medications for the FTD so he's been put on Arisept - not making any difference, three weeks later.

It is essential that your dad gets a chance to talk at length to that GP and give a full history - it is this clear history from family members that give the doctor a true picture of what is really going on. When Ron was with the specialist he insisted he was just fine, rarely had problems with his memory, was doing better with his problem solving etc etc - none of this true, though he believed it. Maybe your dad should make a seperate appt for himself?

A

 

[Kate P]

Hi Anne,

Yep that sounds like mum too - she's absolutely convinced that she's fine and exactly the same as she's always been but to be honest she's so different I don't feel like I know her anymore. I can't imagine how much more that must hurt when it's your spouse.

I do sometimes wonder how much of it is that she doesn't want to believe it?

I feel like I'm never off this site at the moment but it's such a relief to finally be talking to people who understand.

We have good friends and family but we've been dealing with this for nearly four years and we can tell that they're starting to get a bit sick of listening - can't say I blame them it's hardly "party talk" is it? On the other hand they also seem completely unable to comprehend how you can laugh about it sometimes - it's as though they think it's disrespectful but you'd go mad if you didn't! (I'm particularly thinking here of my mum's current belief that any gift in sight must be for her - she's opened other people's presents and spent her anniversary party last week demanding presents from anyone she thought hadn't brought one! ).

I think only people dealing with dementia can appreciate what it's like to live with in day in and day out. It takes over your life really. I can't remember the last time a day went by and it wasn't the first and last thing on my mind.

 

[Grannie G]

Kate,

I`ve said this so many times before, but as you are new to the Forum, I`ll repeat it.

You might find it helpful to keep a diary; dates, times, situations where your mum exhibits inappropriate behaviour. This can be printed out and posted to the doctor a week or so before an appointment.

I send one or two week`s entries to the consultant before every appointment. He appreciates it. It saves discussing my husband as if he weren`t there. It also saves arguments, as he would deny any of my observations, as he will have forgotten them.

 

[Margarita]

Does not sound like you have a helpful doctor at all .

We're currently finding it very difficult. Our GP believes that mum has AZ or semantic dementia and wanted her to have a brain scan which she is refusing to consent to (we think - she gets confused between "yes" and "no" but I think in this case she is on a definite "no").

My mother refused to go to see the doctor , lucky for me , when I got mum they it was to do with her diabetic medication doctor new something was wrong with mum so doctor sent of for an appointment with consultant that deals with the elderly & I took mum alone .
.

Oh yes and if it was all left to my mother , I would of never of know what was wrong with her as doctor did not really know , as its really not up to doctor to say what is wrong with my mother , only to make the referrals.

We've now asked for a referral to someone else for a second opinion, but I'm worried about the same thing happening again

Don't be worry that it happen again , I got a second opinion , even if it did take me to Gibraltar to do it .

As doctor in UK was useless , then when I got back to UK with mum , I put my mother under my doctor who is just great .

all you want is a referral to a the local hospital to see a consultant , your other doctor thinks your mother has some form of dementia , so your mother does not have the mental capacity , to release that what you are doing for her is for her own good to get medication for her , in seeing the consultant / brain scan .

say that to the 2nd doctor receptionist & go from they .

The biggest challenge is getting your mother they when the appointment arrives.

Good luck

 

[Sandy]

Dear Kate P,

I'm not entirely sure how brain scans fit into the diagnostic picture. One purpose can be to eliminate any other causes for the symptoms observed. Since you mentioned semantic dementia and found the Picks site useful, you might want to look at this article on diagnosing Fronto Temporal Dementia (FTD):

http://www.ftd-picks.org/?p=learnmore.tests

I would have thought that you could get a referral to some sort of consultant psychiatrist even without the brain scan.

It's not surprising that your mother doesn't feel that there's nothing wrong with her. It could be fear or denial but many people with dementia (especially with damage to the frontal lobes) have very little or no insight into their own condition.

Sometimes people will respond to the genuine concerns of their loved ones, without any elements of frustration or anger, more of something in the line of "If you won't do it for yourself, do it for me because I love you and I'm worried about you." Depending on the person and their levels of sensitivity, this appeal needs to be fairly dramatic with tears and everything.

Take care,

Sandy

 

[Margarita]

I'm not entirely sure how brain scans fit into the diagnostic picture.

you got me wondering why now . I wonder if its anything to do with what kind of medication they can or can not take or blood clots in brain bleeding in the brain ?

 

[Skye]

This article explains the purpose of scans, and shows images of the brains of people with AD.

The scan will also rule out a tumour.

http://www.qrd.alzheimers.org.uk/researchdetail.asp?GrantsID=65

 

[Margarita]

what a good link Hazel thank - you