My wife who was diagnosed with vascular dementia has not had any form of brain scan since 2014 is slowly getting worse i.e, mobility, confusion, memory, fatuige, decision making, including what to eat.The other day I sent an email to local hospital chasing Pamelas annual appointment with the stroke outpatients, my wifes biggest stroke was in 2012, plus tia,s since. In my email I suggested that it might be time for Pamela to have another scan, the reply was that doctors would make that decision in clinic. Is it not normal to have regular scans for people who have V.D and a history of any type of strokes. I am interested in other peoples opinion and experience on this subject.P.S V.D was diagnosed 2014.
M.R.I scans for Dementia.
- Thread starter lorryman
- Start date
Hi lorryman. My husband has Alzheimer's and had a ct scan as part of his diagnosis. He then had a stroke and had a ct scan as part of that diagnosis. He is still seen by the stroke nurse but as far as I know that's it and he won't get further or annual scans. He has only had the one stroke but the ct scan did find small vessel vascular disease. I do think an annual scan would be a good thing as i think medical support is lacking and it would show how the disease is "progressing" but doubt there is the money or resource available to do it.
I wouldn't know about strokes, but to be honest, I can't see the point in annual scans once dementia is diagnosed. They use up resources, they can stress the PWD and they do nothing other than show decline you can see in other forms. Yes you need one to be diagnosed, but after that, what's the point? It's not like they determine treatment, and there is no medication for vascular dementia anyway.
I don't know if it is different where Vascular Dementia is concerned but my husband had an MRI in January 2012 at the beginning of his diagnosis - it showed a very mild atrophy, eventually leading him to be diagnosed with unspecified dementia.
It was 2015 when he was given another scan (though this one was a more detailed PET scan). The only reason it was given was because my husband had a new consultant who had never dealt with a younger person with dementia before and who wanted to see if there was anything helpful to be gained from it - up until this point it had been generally mooted that there was little point in repeating an MRI on a regular basis as it would only show an entirely expected deterioration and would cause needless stress for no real gain in medical knowledge).
As it happens, the more detailed PET scan did not throw up any new info either and my husband continued to be diagnosed with unspecified dementia.
Earlier this year my husband's mental health declined suddenly leading him to be hospitalised in a secure unit for two months. An MRI scan was carried out as part of the general investigation into what might be causing the sudden change. The MRI showed nothing other than "what would be expected with advancing Alzheimer's".
From our experience an MRI is not something that is needed on a regular basis as it does little more than confirm what is already known.
It was 2015 when he was given another scan (though this one was a more detailed PET scan). The only reason it was given was because my husband had a new consultant who had never dealt with a younger person with dementia before and who wanted to see if there was anything helpful to be gained from it - up until this point it had been generally mooted that there was little point in repeating an MRI on a regular basis as it would only show an entirely expected deterioration and would cause needless stress for no real gain in medical knowledge).
As it happens, the more detailed PET scan did not throw up any new info either and my husband continued to be diagnosed with unspecified dementia.
Earlier this year my husband's mental health declined suddenly leading him to be hospitalised in a secure unit for two months. An MRI scan was carried out as part of the general investigation into what might be causing the sudden change. The MRI showed nothing other than "what would be expected with advancing Alzheimer's".
From our experience an MRI is not something that is needed on a regular basis as it does little more than confirm what is already known.
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My wife only had 2 scans, an MRI one and a SPECT one when being diagnosed, until she had a fall whilst in the care of the NHS.
Because of this they did another scan.
I asked what changes were since the first scan (5 years ago) and they said it was "what you'd expect to see further deterioration".
It's all about dealing with the reality of the situation you alone are having to deal with and recognising that everyone with AZ is different is my view.
Knowing that she has gone from 10% to 15% brain deterioration and that she got 15 out of 30 on some scale to 10 out of 30, I don't believe it matters it doesn't help me in any practical manner so who cares, as Beate says why use up limited NHS resources.
K
Because of this they did another scan.
I asked what changes were since the first scan (5 years ago) and they said it was "what you'd expect to see further deterioration".
It's all about dealing with the reality of the situation you alone are having to deal with and recognising that everyone with AZ is different is my view.
Knowing that she has gone from 10% to 15% brain deterioration and that she got 15 out of 30 on some scale to 10 out of 30, I don't believe it matters it doesn't help me in any practical manner so who cares, as Beate says why use up limited NHS resources.
K
Mum has also only had one scan - for diagnosis and I dont see that she needed another one. She wouldnt be able to cope with another one now anyway
My OH had one scan as part of the diagnosis.
Sorry I don't know anything about strokes.
Sending support,
Aisling
From my experience the medics only organise scan's when they deem their is a medical need for one. My Mum has Lieukemia (as well as AZ) and for AZ they have done one scan whilst for the Lieukemia they have done one scan in the last 4 years.
The 'rule' is that tests should only be carried out if the results are going to change management. Once it has been confirmed that someone has dementia, I don't see the points in further (routine) scans.
Deterioration is expected and can be seen without scans which do not always (often?) match the scan picture anyway. 2 people can have very similar scans and very different behaviour!
Deterioration is expected and can be seen without scans which do not always (often?) match the scan picture anyway. 2 people can have very similar scans and very different behaviour!
It seems that most of the time Dr's rely on CT scans and observed and reported behaviour for diagnosis. Of course a CT is cheaper but it doesn't give as clear a picture of soft tissues than MRI; which is crazy as we are looking at some very important soft tissue here the brain?!?! I generally think that our health authorities go the cheapest route possible for a diagnosis.... The problem is, how the hell are they going to learn more about these varied conditions in dementia if they don't do an MRI as standard. It seems to be the required scan for research so why not MRI everyone so they have a bank of data to use.
Mum scan was an MRI. She only had the one though.
I had assumed that everyone else who replied and said that they only had one scan were talking about an MRI.
Did your relative only have a CT scan? Sometimes once the dementia is advanced PWD can cant cope with an MRI (too noisy and claustrophobic), but they may be able to do a CT scan. And if the dementia is quite advanced the atrophy will show on that too - even if not in as much detail
I was meaning a ct scan and agree mri scan would be difficult. I also don't want to waste resources but feel frustrated about the lack of medical support. I am having to manage the situation as we all do and have had to learn on the job. I accept to a degree that the medics cannot predict what will happen and when but if the situation was monitored by experienced professionals they may be able to advise and guide.
The doctors could monitor him/her but what would it achieve? No one can predict how the condition will develop in a specific person, so all they could do it tell you what might or might not happen and you can find that all out on here.
None of us want to feel ignored (which we are) but it would incur massive cost for the NHS and not actually really achieve anything positive.
I've taken my mum (in the past) and my wife (until recently) to numerous appointments at the memory clinic and frankly they were a waste of time.
"You don't make a pig fatter by weighing it" as the expression goes, testing and documenting their progress never made them any better or got me anything.
K
Fair point Kevin I hate to think resources are being wasted and you are right I do feel ignored and irrelevant and unsupported etc. We get next to no support and basically have to get on with it. I hear nothing from the memory service whatsoever other than they rang me to talk to me in vague words about the scan my OH had due to a stroke but only because I specifically asked them to. No follow up which I think is not good. Even if it was a phone call it would make a difference. The government says it values carers. No it doesn't but it does need us. We save a huge amount of social services - and of course we should care for our family or OHs or whoever - its part of family commitment.
