The fast-track dementia test

[JanH]

what's the piont

I had no problems getting my Mum quickly diagnosed. "She has vascular dementia, it will get worse, no treatment, bye bye". This was two years ago, she has got a lot worse & we still have no help or support (only on this website) I can see no point in a diagnosis, it means nothing!

 

[stanleypj]

Diagnose and adios

That's how it's known in 'the trade', I I believe.

My understanding is that yours is a common experience.

 

[Ballettoes]

Good points ......

Until the government stops foreign aid and spends that money in the UK on our own health needs; and rather than fast track early diagnosis of patients, it would be more sensible and more beneficial if more intensive research of the brain and its functions was financed so that a cure may be found. The earlier administration of drugs which do not always work and often bring along disastrous side effects is not the answer.

And setting up all theses think tanks and committees etc costs money, too much talking (and getting paid for it) and not enough doing. For all this money being spent on research will we really see a result?. Billions of pounds of tax payers money has already been given to drug companies for "research". I'm not saying don't try to find a cure. But more money should to poured into care now, money to help carers cope day to day on a practical level. The difficultly with this is there is no profit in it, it would only make life better for people like us and at the end of the day that's not the governments first priority.

 

[Ballettoes]

I totally agree with you.

I had no problems getting my Mum quickly diagnosed. "She has vascular dementia, it will get worse, no treatment, bye bye". This was two years ago, she has got a lot worse & we still have no help or support (only on this website) I can see no point in a diagnosis, it means nothing!

My experience was just the same.

 

[jimbo 111]

I attended two forums last month on early diganosis of dementia: one for local doctors and another one for practice nurses. The forums were to show a strong structure in place for all stakeholders such as

GP’s
Practice Nurses
Memory Clinincs

This enabled a clear pathway for dementia suffers across the borough.

A lead GP has been working together with his practice manager to coordinate an early diagnosis pathway.

The forums related to what tests and recording was needed when a patients came into the surgery presenting confusion to the point where it was impinging on their daily lives. The GPs were shown the initial, simple tests of verbal, cognitive and orientation which either a doctor or a practice nurse could give and also the typical problems such patients had in their daily lives because of dementia. It also showed normal blood test screening to eliminate other causes of confusion and the usual medication which could be given to help alleviate the patient’s problems.

A unified, borough wide computer based system had been developed to assist GP’s and practice nurses to record all the screening which they had done. This recording served two purposes: it helped when referring patients to the new memory clinic to give a clear and accurate referral letter, but also provided proof so that GP’s could be paid for this work by the GP monitoring body QUAF.

This information was for both forums. The memory clinic team ran through their role which was:

• To gave full diagnosis and CT scans
• Post diagnosis support
• Monitoring and review of medication
• Info and advice
• Access to therapies and other services
• Rapid access for GP’s back to the memory clinic for reassessment when needed.

The memory clinic then referred back to the GP with a full care plan to manage the patient within their own surgery and rapid access for GP’s to refer back to the memory clinic if and when reassessment was needed. The memory clinic promised GPs reassessment back at the memory clinic within 2 weeks if the patient’s condition changed.

Both forums were very well presented and slanted towards the two different roles of GP’s and nurse practitioners.

The new scheme offered a better structured, and more thorough pathway to treatment than I have ever seen before and the Memory Clinic team were looking to extend the scheme into local hospital wards and A & E.

I was very impressed and all this work had been done in response to the National Dementia Strategy policy on early diagnosis. It would seem at last, in in my own area, something coherent, clear and with a proper pathway is now in place.

A far, far better prospect than when my husband and myself first turned up at the local GP's surgery with severe cognitive problems. We lost at least six months as the GP referred us to a general pyschiatrist because of his young age. Eventually after a further 6 months after he had been referred to a neurological specialist, we got the diagosis of Lewy Body Disease. I'm very hopeful that thanks to the N.D.Strategy insistance on early diagnosis, this will not hapen to others. I also hope that this could be the basis for a nationwide push.

xxTinaT

Like many people on TP and those who have responded to this thread I too
had to fight my wife’s doctor, it took nearly 18 months before he would take any positive action ,and feel certain that an earlier diagnosis would have delayed some of her problems (AD with further complications)
I agree with the general attitude that these so called initiatives are often political sound bites that rarely seem to live up to expectations
But I think that the post by Tina T quoted above deserves some consideration when responding to this thread .
It does seem to be a very positive and encouraging set up ( observed by a member who has been a long term campaigner in dementia matters ) and I am sure if such a system was in operation nationally many people in future will not have to go through the worry and frustration that many of us have faced in the past
I would recommend rereading Tina’s report
jimbo 111

 

[TinaT]

Thanks Jimbo. Your post is much appreciated. In my post I did mention that after diagnosis at the memory clinic there was practical support and a pathway onto other service providers. In fact in my area the Alzheumer Society is the charity which gives some of the support on offer. I had no support whatsoever and was left to find my own way as and when needed around the maize of help which was on offer. This took me a long time and much heartache and I only wish that when Ken and I needed this, we had access to a memory clinic which offered such support.

I HATE the name Brain Clinics - horrid - horrid -horrid terminoligy!! I personally prefer the name Memory Clinics.

I fully appreciate that there is no dagnosis of dementia which can then bring a cure but does that mean that we can then leave people to 'stew in their own juices' as happened in my case?

One step at a time, folks. There is much wrong with dementia care. Let's applaud what seems to be steps in the right direction.

xxTinaT

 

[stanleypj]

Billions of pounds of tax payers money is already being given to drug companies for "research".(

How many billions? It's only 2.5% of the total for medical research (according to Alzheimers Research UK).

As for 'brain clinics', I agree with TinaT. The problem with 'memory clinics' is that the name perpetuates the myth that it is all, or even mostly, about memory.

 

[TinaT]

You are right Stanley.

The name 'Memory Clinic' does just concentrate on one aspect of dementia but I doubt I would get my mother to attend an appointment if it was termed 'Dementia Clinic' with all the connotations that word evokes.

I think we have the same problems which the word 'Cancer Clinic' used to evoke in people, feelings of fear, terror and worry. Perhaps when dementia in all its forms does have a cure, we will not be so frightened of this word.

The trouble for me is that dementia covers such a variety of behaviours, it affects young and old, memory problems, behaviour problems, loss of spatial awareness, violent behaviour, ,loss of speech, independance etc., etc.,

I just can't come up myself with a name which doesn't frighten people off but which also describes the whole gamut of behaviour. God knows my husband's loss of memory was one of the least worrying behaviours for us to cope with.

xxTinaT

 

[stanleypj]

Along the same lines, we went for a SPECT scan in 'The Department of Nuclear Medicine'.n Sounds so attractive!

 

[Jancis]

You are right Stanley.

The name 'Memory Clinic' does just concentrate on one aspect of dementia but I doubt I would get my mother to attend an appointment if it was termed 'Dementia Clinic' with all the connotations that word evokes.

I think we have the same problems which the word 'Cancer Clinic' used to evoke in people, feelings of fear, terror and worry. Perhaps when dementia in all its forms does have a cure, we will not be so frightened of this word.

The trouble for me is that dementia covers such a variety of behaviours, it affects young and old, memory problems, behaviour problems, loss of spatial awareness, violent behaviour, ,loss of speech, independance etc., etc.,

I just can't come up myself with a name which doesn't frighten people off but which also describes the whole gamut of behaviour. God knows my husband's loss of memory was one of the least worrying behaviours for us to cope with.

xxTinaT

Maybe we should call it Mind Clinic.

 

[LynneMcV]

I can't say I feel particularly excited about this.

I had just two over-riding thoughts after reading the article

1. Is the use of an Ipad really a good way to test people for signs of dementia? To my knowledge people with dementia tend shy away from technology. My husband was diagnosed early through basic pen and paper, verbal and visual tests. If he'd have been asked to do tests using an iPad he would have panicked to the point of barely 'performing' at all.
Equally my late mother, who did not have dementia, would have gone into the same panic mode and not performed to the best of her capabilities. I can't see how, in either scenario, the test would be indicative of the person's actual capabilities.

2. As others have already pointed out - quicker testing isn't going to make a whole lot of difference if the resources/help aren't there. Example, hubby was flagged up as having dementia last May and diagnosis was confirmed in August. He is on a low dose of Aricept which might or might not be doing anything, there has been no helpful feed-back via his GP - and as far as the Memory Clinic is concerned, their job is done and they'll see him in 6-9 months time. Even something as simple as guiding me to relevant websites for information and help was beyond them and solely left down to me.

 

[Ballettoes]

How many billions? It's only 2.5% of the total for medical research (according to Alzheimers Research UK).

Not just money for Alzheimer's research money for research into other diseases too cancer diabetes etc. Money for testing drugs to make sure they are safe it's a ongoing process.

 

[Bodensee]

Ixico link

Here is a link to one of the companies involved in the brain clinic:

http://www.ixico.com/News/PressReleases/#BrainHealthCentre

and here are a couple of quotes taken from the link:

' LEADING TO RAPID TREATMENT AND SUPPORT FOR BRITISH DEMENTIA PATIENTS - THAT CAN ADD 18 MONTHS TO INDEPENDENT LIVING'

' THUS PERMITTING EARLIER DELIVERY OF BEST CARE'

I would like to know what they mean by 'best care'?
I would like to know what the 'rapid treatment and support' will be?
I would like to know why they include a blood test at the scan stage and if patients receive the results of this blood test?

My mother has dementia, she receives 2 visits a year from a mental health worker, she takes Aricept, thats it. Are there any new proposals on the horizon to help people with dementia, or is this brain clinic setup designed to find out just how many people in the country have neurological problems associated with dementia?

 

[nicoise]

I echo LynneMcV's feelings re using an iPad for the test - new technology equipment based testing for people who often have difficulty with a mobile phone, or a remote control? That'll skew the results straight away.... What bright spark came up with that idea - I'm not sure that they really understand their target audience

 

[Ballettoes]

Mumbo jumbo

Having just had a look at the link it looks like a load of hot air politic speak loads of info not really saying much. More money given to drug companies to waste I wonder how much help will really come out of this. It makes me sad it really does! I wonder what the alzheiemers society opinion is.
I'm sorry but I think the money could be better spent eslewhere

 

[stanleypj]

I was particularly taken with the idea of results being 'beamed' to the GP. Currently, snailmail letters typed up eventually by secretaries are sent by snailmail to the Practice where admin staff scan them into the system. There's a little way to go.

Of course, this is the Daily Mail reporting........

 

[Bodensee]

Reading the information from the link the idea is to solely reduce the time delays for diagnosis of possible dementia. I have to say I have no qualms about the way my mother was diagnosed a year back and the time it took for her to be referred for a CT scan, in fact she was fast tracked for the scan which in her area is normal practice for suspected dementia cases.
What is positive about these new brain clinics however, is that they will hopefully be able to detect other brain disorders such as prion disease which is prevelant in our population and can remain dormant in humans for years, depression being one of many non-obvious symptons.

 

[Ballettoes]

National prion clinic

Prion disease affects one person per million per year.

 

[nicoise]

Dear Bodensee,

You say:

What is positive about these new brain clinics however, is that they will hopefully be able to detect other brain disorders such as prion disease which is highly prevelant in our population and can remain dormant in humans for years, depression being one of many non-obvious symptons.

Prion disease is not highly prevalent in our population. The Prion Clinic says that there is 1 case of sporadic prion disease per million of the population per annum - which in the UK would make 60 people approximately, which is hardly highly prevalent. To compare, there are 800,000 people in total diagnosed with dementia in the UK at present.

For anyone who is interested, an explanation of sporadic prion disease can be found here:

http://www.prion.ucl.ac.uk/clinic-services/information/sporadic-prion-disease/

It was also interesting to read on the Prion Clinic's website that:

vCJD has been in decline since 1999/2000 and for the first time since 1993 there are at present no known case (sic) in the UK (December 2011).

But I do agree with you that if this improved testing is implemented, then identifying other types of neurological diseases or problems may well improve.

 

[Dikimiki]

Without research ....

And setting up all theses think tanks and committees etc costs money, too much talking (and getting paid for it) and not enough doing. For all this money being spent on research will we really see a result?. Billions of pounds of tax payers money has already been given to drug companies for "research". I'm not saying don't try to find a cure. But more money should to poured into care now, money to help carers cope day to day on a practical level. The difficultly with this is there is no profit in it, it would only make life better for people like us and at the end of the day that's not the governments first priority.

How is a cure to be found?
Surely not all research laboratories are financed and affiliated to drugs companies? Where is the evidence that billions of pounds of taxpayers money has already been given to drug companies for research? This is simply an unproven and unsubstantiated statement whereas the wasted billions in foreign aid is a known fact!