Diagnosis again

I know I've posted about this before but I still have very mixed feelings about the importance of a quick diagnosis. Someone asked online how long a diagnosis would take.

I'm afraid it can be as long as the proverbial piece of string.

Part of the problem is that whilst memory clinics can usually decide whether someone has some sort of dementia, it can take a very long time to identify which condition a person has. Dementia can have many causes. Increasingly, as well, clinicians seem to come up with a 'mixed dementia' diagnosis as if covering their backs.

My wife was referred to a well-regarded memory clinic in 2000. She got the following diagnosis in 2011: Probable Alzheimer's disease (posterior cortical atrophy). Probable !! Since then she has had an additional diagnosis of Parkinsonism.

But during the many years of waiting we got on with life as best we could and created many happy memories. If you think a quick diagnosis will help then it might be a case of being careful what you wish for.

Now I know some people can benefit from some medications and that a diagnosis is usually required before drugs are presribed but I also know, from our experience, and from my reading that this is not always the case. S was tried on a number of  meds before she had a diganosis.

Reasons for getting a diagnosis

I have always been somewhat somewhat sceptical about the push for more people to get an early diagnosis and I've posted about this before. It took a long time for S's diagnosis to be arrived at, more than a decade. We knew fairly early on that she probably had some form of dementia but nothing more specific.

I know some people and their carers deliberately avoid diagnosis and I can understand this.

However, there are some arguments for seeking a diagnosis:

1) There are drugs available which might help (they may not though and may have side-effects). And some forms of dementia do not really respond to any medication.

2) A diagnosis ought to give you access to a lot of valuable support. But people often report that this desirable result is not forthcoming.

3) Blood tests might show that dementia-like symptoms may be caused by a number of conditions which can often be cured or kept at bay:

http://www.helpguide.org/harvard/whats-causing-your-memory-loss.htm

Early diagnosis

I have touched on this before, but I still feel strongly that the emphasis placed on early diagnosis of dementia is not necessarily helpful. I'm really talking about attempts to diagnose the exact type of dementia which is deemed necessary but is often much more problematic than people realise. I read regularly about people who have been 'diagnosed' after seemingly minimal investigation. Each time we attended the memory clinic a leading expert on dementia told us that there was a definite problem but that an exact diagnosis was not easy. Every avenue was explored until, 11 or 12 years after the initial referral, we did get a diagnosis, for what that was worth. After each appointment I spent time reminding my wife of all the positives that the expert professor had mentioned - he was a very positive guy, urging us to live as good a life as we could. We carried on doing everything we were still able to do, with increasingly frequent adaptations, finding ways to compensate somewhat for the abilities that were failing.

Do I look back at this with regret? Absolutely not! A diagnosis is just a word or two. It's not uncommon for diagnoses to be changed, sometimes more than once as the condition progresses. Drugs may work a bit for some people and help with some of the symptoms. None of them helped S and she had some unpleasant side-effects.

I would just advise other carers to concentrate on what the person they care for can still do and to find ways of compensating for the abilities that are less secure. We have had 16 years since the clinic referral and had some wonderful times. Of course, it's much more difficult now, but life goes on. I hope you will have many more years together.

Diagnosis again

Even now, 15 years after S's referral to the memory clinic. I have learnt something new about her diagnosis, a diagnosis that was only made in 2011. The doctor who finally did the home visit following my pestering after she was 'discharged' from the Movement Disorder Clinic (because a Movement Disorder - inability to walk - meant she couldn't attend the Clinic!) has written to the GP and helpfully copied to the letter to us.

Under 'Diagnosis', I read 'Probable AD (posterior cortical atrophy)'.

This is something of a surprise since this has never been mentioned by any of the medics who have dealt with her previously, which include a leading expert on dementia who saw her regularly between 2000 and 2011 when she was finally diagnosed, by a neurologist, as having AD.

Having had a quick look at PCA online, this doesn't seem any more appropriate than any of the other diagnoses that have been 'tried on for size' during the 15 years.

Just as well, as no-one suggests that it makes a scrap of difference to how S is treated or, rather, not treated.

The only suggestion he makes, apart from a tweak in the Sinemet (Parkinson's Disease) medication, is a 75mg aspirin daily dose due to his 'suspicion of cerebrovascular disease'. This suspicion has been entertained and rejected before. S seems to have none of the risk factors for cerebrovascular disease.

So we're none the wiser really.

When There's No Amyloid, It’s Not Alzheimer’s

This is the heading to a fascinating article in the latest Alzforum weekly newsletter. Here's a link to the article:

http://www.alzforum.org/news/research-news/when-theres-no-amyloid-its-not-alzheimers?utm_source=Alzforum+Weekly+Newsletter&utm_campaign=0372e368ea-September_14_2015_Newsletter&utm_medium=email&utm_term=0_944a562dd7-0372e368ea-91738709

And the first paragraph gives you the gist:

Reporting in the August 24 JAMA Neurology online, researchers led by Eric Reiman at Banner Health in Phoenix, confirm what others have suspected from PET imaging, namely, that as many as one-third of the people clinically diagnosed with mild to moderate Alzheimer's disease do not meet criteria for significant amyloid accumulation in the cerebral cortex. Reiman and colleagues came to this conclusion after examining brain tissue postmortem—the gold standard for assessing amyloid burden. The finding puts the kibosh on the idea that some PET scans are negative because amyloid ligands bind poorly to particular forms of amyloid in some AD patients. It also reinforces questions about the accuracy of clinical diagnoses of AD and leaves the field struggling to explain what causes dementia in these amyloid-negative individuals. This promises to be an intense area of investigation, said Reiman.

Articles like these are often difficult for a lay person to understand. But from what I can understand and already know I would say the title is begging the question a tad. It should be no surprise that many people diagnosed with AD are found post mortem not to have amyloid accumulation in their brains. But surely this could be because either, as the title says, people without the amyloid must have a different disease or different diseases OR because, as other research suggests, amyloid accumulation is not as significant in AD as is so often claimed.

Paying GPs £55 for diagnosing dementia

Readers in other countries may not be aware of a news story that is currently causing some controversy in the UK,  There is a proposal that GPs should be paid £55 for every case of dementia they diagnose (as I understand it, the money would go to the practice rather than to the GP personally).

Amongst the points that have been raised:

* Why should anyone be paid more for simply doing their job which diagnosis is part of?

* In reality when GPs suspect that a patient may have dementia they will normally refer them to a memory clinic/service for tests and scans and, hopefully, a confident diagnosis.

* There is anecdotal evidence that some GPs fail to spot the signs of dementia, particularly in younger people and, certainly, it would be unwise to assume that a GP can make an accurate diagnosis of the condition.  I've read of two cases recently where people have been wrongly diagnosed as having dementia.  In one case, a woman sold her house to pay for care and spent over a year in a care home before the error was discovered.

* A distinction needs to be made between a diagnosis of the condition we call dementia and a diagnosis of one or more of the diseases that cause the condition. If it's clear that the diagnosis of dementia is not always easy, diagnosis of the disease(s) can be very difficult. It is true to say that a definite diagnosis can only be made post mortem  -  if then.

* Is it wise to rush to diagnose people with a condition for which there is no cure and for which the only treatments are, for many people, inadequate or worse?
I've discussed this in earlier posts which you can find by using the search box (top left).

* Many people living with dementia, and their carers, feel that adequate support post-diagnosis should be the number one priority.  There's also a fear that a rapid increase in the number of diagnoses made will simply put more pressure on support services which are, in many cases, already falling apart or non-existent.

Fast diagnosis - a bit of a reality check.

I've written before about various aspect of diagnosis (try search  -  left top corner  -  if you are interested).

This story is a little worrying:

http://www.express.co.uk/news/uk/522684/Pensioner-Sold-Home-Dementia-Care-Home-Misdiagnosed

The story is a useful reminder that the diagnosis of dementia, and more particularly the diagnosis of a specific disease, is not always as straightforward as the current demand for fast-track diagnosis would suggest. As the quoted dementia specialist says, it's a bit of a reality check.

Diagnosis and possible prevention

This recent article is interesting:
http://www.bbc.co.uk/news/health-22531066

I have reservations about the current emphasis on the need for early diagnosis and I've discussed them before (type 'diagnosis' into the search box at the top left if you're interested).

Leaving these views to one side, it interests me that the article clearly suggests that diagnosis is a more complicated matter than we are sometimes led to believe:

'The National Clinical Director for Dementia in England, Prof Alistair Burns, says the MoCa test could be an important component in identifying risk of vascular dementia, but he says by itself it is just a "snapshot", and a lot of other factors should be brought to bear in arriving at a diagnosis.

"It's not just one thing. It's looking at the history of the person, it's looking at how they are doing in general, it's looking at the medical history, at brain scans, and that test of cognition, of executive function."

However he says the message about the possibility of prevention is important.'

The possibility of prevention is another interesting topic about which there are few clear-cut answers. Since vascular dementia was first identified it has been clear that lifestyles which minimise the risk of heart disease or stroke might help to prevent vascular dementia as well. But there are several different kinds of vascular dementia and many, many more kinds of dementia that don't seem to have any connection with the vascular system. It's important that people understand this.

Generalisations about people with dementia

You find them all over the internet.  Even when people pay lip service to the idea that 'everyone is different', they frequently state, suggest or imply that 'they' do this, can't do that, feel this, must be treated like this, cannot understand that....

The absurd thing is that those who make these statements will themselves often only have experience of two or three people with dementia.  Either they are thoughtlessly extrapolating from this miniscule sample or, more likely, they're just repeating what they have read or been told by other equally misguided people.

I've mentioned before a couple of totally false assertions:

http://adventureswithdementia.blogspot.co.uk/2012/08/are-people-with-dementia-capable-of-new.html

http://adventureswithdementia.blogspot.co.uk/2012/05/if-i-hear-anyone-else-talking-about.html

Statements like this also ignore that the fact that people are often diagnosed at very different stages of whatever type of dementia they have (and some people claim that there are over 200).  Many people in the early stages of the diseases will be able to do nearly all the things that people without dementia can do.  Indeed, they may be able to do some of them better than most people without dementia.  The writer Terry Pratchett is a well-known example.  Several years after diagnosis, he is still writing books.  Likewise, the singer Glen Campbell was able to produce a very polished album post-diagnosis.

For every celebrity, there will be thousands of other people who are still functioning 'normally' in some or many respects.  People are still working, driving, and living independently.

I would advise people who want to try to understand the world of dementia to ignore any statement that lumps people together in the way that I've illustrated.

I'm not of course, denying that many people with dementia can have some things in common, just like people without dementia can.  It's the absence of qualifiers  -  some, many, most  -  that gives the game away.

It's just sloppy thinking  -  on a par with talk of 'the poor' or 'the unemployed'  -  and often from people who should know better.

Fast-track diagnosis

There's currently a considerable amount of hype about a new state-of-the-art fast-track system for diagnosing dementia (which will of course make some entrepreneurs very rich).  We're told it is very important for people to have an early diagnosis.

I'd like to state an alternative view that I have mentioned before.

1) Even with the most sophisticated scans, it is still true that Dementias can only be properly diagnosed post mortem.

2) The fact above may not even be a fact. Read about the nun study:

http://promega.wordpress.com/2009/05...the-nun-study/

My wife was only 'diagnosed' after being investigated by a leading memory clinic for twelve years. Throughout that time she had increasing difficulties. But she also had access, at different points, to two of the much-vaunted small handful of drugs which people awaiting diagnosis and their families understandably have such high hopes for. They didn't help and had unpleasant side-effects.

During those twelve years we got married, our children got married, my wife had her first grandchild, we went on some wonderful holidays, we enjoyed our life together to the fullest extent possible.

If we had had a diagnosis earlier, how would it have helped?

Some people suggest that an early diagnosis would enable you to make the most of the time you have left. I disagree. We had all that precious extra time without an explicit death sentence hanging over us. Our Guru said: 'Live a good life'. That's all you can hope to do, with or without a diagnosis. But I reckon it's been a lot easier without.

And I'm not saying it's been easy!

Finally, because we had such a good 'pre-diagnosis' we've managed to carry on enjoying life when we can, after a fashion. As the early part of this blog details, my wife had a terrible period just after the diagnosis (there's a surprise!) but she has improved since then. (Steady now! People with dementia aren't supposed to improve. It's not allowed.)

New readers start here

As the blog is nearly one year old, it occurs to me that as new readers come along, it could be helpful to point them towards some significant posts that chart the perhaps unusual developments in my wife's condition.

This is one of the earliest posts:

http://adventureswithdementia.blogspot.co.uk/2011/10/slipping-away-from-me.html

This was one of the lowest points, though looking back, my anger probably helped me through this period:

http://adventureswithdementia.blogspot.co.uk/2011/11/dreadful-negative-experience.html

This was another awful time:

http://adventureswithdementia.blogspot.co.uk/2011/12/today-is-special-day.html

In the New Year, things started to improve:

http://adventureswithdementia.blogspot.co.uk/2012/01/bit-calmer-some-things-happening-lot-of.html

This was an interim 'progress report':

http://adventureswithdementia.blogspot.co.uk/2012/02/progress-report.html

I'll leave it at that for now, but post further selections on the near future.

It is of course possible to read any or all past posts by clinking the links at the bottom and right of the page. 

The nuns' study

One of the most intriguing pieces of research into Alzheimer's is the ongoing nun study. In 1986 Dr David Snowdon, an epidemiologist and professor in Neurology, embarked on a revolutionary scientific study involving 678 spirited Catholic nuns; the School Sisters of Notre Dame. An ongoing project, the Nun Study has come to represent some of the world's most significant research on ageing and Alzheimer's disease. The participants, ranging in age from 75 to 106, have allowed Dr. Snowdon access to their medical and personal records; and these bright, articulate and altruistic women have each further agreed to donate their brains to the study upon their deaths. 


This link explains some of the findings:
http://www.dementiacareaustralia.com/index.php?option=com_content&task=view&id=236&Itemid=81 

The most interesting finding, in my opinion, is that  'approximately one third of the sisters whose brains were found to be riddled with Alzheimer's plaques and tangles at autopsy had shown no symptoms and scored normal results in all mental and physical tests while alive! Though the opposite result was true in other cases; such contradictory results show that there is much more to Alzheimer's than neurological changes in the brain alone.'

In other words, there were nuns whose post mortems indicated that they had the classic plaques and tangles which are assumed to indicate Alzheimer's yet they had no symptoms. Likewise there were nuns who did have symptoms but in whom, post mortem, there was no sign of the plaques and tangles.

And yet, years later, you can still read over and over again, apparently authoritative descriptions of the disease which make no mention of these findings!

It's inexplicable.

Is a diagnosis necessarily a good thing?

A neurologist is quoted on an online forum as saying to someone who was impatient about the fact that it was taking her so long to obtain a diagnosis: 'no diagnosis is better than a wrong diagnosis'. So here we have a sensible neurologist  -  pretty remarkable. 

But having thought a lot about our experience, I would go further. I would even say that, depending on who you are, the road to a diagnosis might well be one on which it's better to travel hopefully than to arrive. S and I were somewhat reassured to be told at various points that the 'obvious' diagnosis was not necessarily correct. In fact, we were even told with some certainty that S definitely didn't have Alzheimer's. Though it was clear many years ago that she had some form of dementia we found that it was possible to 'get on with our lives'. One diagnosis and 12 years later, I am happy that we had all that time together, sharing some great experiences, thinking that things might not be so bad after all.

Some people who are desperate for a diagnosis want it so that they can 'get on with their lives'. But you have to do that anyway and I would have thought it's a bit easier if you have some hope that you might not have a terminal disease (other than the one called life that we all have).

Some people believe that once they have a diagnosis, the cavalry will arrive with loads of support. Sadly, they are often disappointed at the length of time that takes. And people have sometimes been told, on diagnosis, that nothing much can be done for them.

Looking back, I don't think that an 'early diagnosis' would have been a good thing for us at all. I actually believe that we're still benefiting from the fact that we had so many good years. And all that time, S had Alzheimer's  - apparently. Well, maybe we can still have some good times.

My feeling about neurologists exactly. (My recent experience was not the only one.)

Before the advent of CAT Scans and MRI -- and often even with them -- a neurologist would perform a lengthy physical examination in order to tell what part of the nervous system was involved, 'localizing the lesion'. Of course, most conditions were -- and still are -- untreatable. A famous neurologist in the fifties once described his job as "Diagnose, adios."

Two neurologists are hot air ballooning when clouds come up and they realize they're lost. They go lower, and suddenly the clouds part and they see that they're passing over a field where a man is on a tractor.

One of the neurologists leans out and yells, "Hey! Where are we?"

The man on the tractor looks up and shouts back, "In a balloon!"

Then the clouds swallow them up again. The first neurologist smiles. "This has been a great day! We saw good scenery, we put back some brewskies, and now to make the day complete, the first guy we meet is a neurologist too."

"Wait a minute!" interjects his friend. "That looked like a farmer to me. What makes you say he's a neurologist?"

"Well, think about how he answered our question. He gave us precise localization and it didn't help a bit."

A dreadful negative experience

I've hardly had time to think this through properly but we had a truly awful experience at the Memory Clinic last week. We had a phone call asking if, because we had not yet had any contact from the community mental health team (still haven't), to whom S had been referred, we'd like to have an appointment with a neurologist (it had just become available). I did wonder how a neurologist could help at this stage but felt we couldn't pass up any possibility, so agreed.

We arrived fifteen minutes early and were finally called in an hour later. S did very well waiting, getting no more agitated than me! When we finally went in, I explained that the hour long wait was just what someone with S's condition didn't need. There was a cursory apology. Then he said that the 'full assessment' would take one hour (bear in mind that S has been continually assessed by the Prof and his team since 2000) and I wondered why we were there, whether there had been some mistake. We discussed whether we would leave. Then he said it might be completed in half an hour. I wish we'd left but we are so desperate for help that we decided to stay.

He then proceeded to speed read S's twelve year medical history in twelve minutes, nodding sagely from time to time, while we sat there like dummies. I've come across this before with medical people. Absolutely no preparation. That's appalling time management and an utterly disrespectful and insulting way to treat patients.

He then started the assessment, trying to talk to S. Not surprisingly she was in no fit state to answer his questions. He soon had to talk to me. I trotted out all the information he asked for and which we had told the Prof three or four weeks before. The significant difference was that whereas the Prof's approach is firmly person centred and he is as interested in what the patient can do as what they can't, the neurologist was very clearly working to a check list and looked as though he was gratified each time he was able to enter a black mark. So whereas the Prof was genuinely impressed that S was so interested in the US Open Tennis, not so long ago, that she was able to sit through and enjoy two matches which each lasted over three hours, the neurologist wanted to know if she would have been able to remember the results the next day. At one point he wanted to start testing S with the kind of questions that she has been trying to answer for twelve years. I told him that the clinic psychologist had realised that this was not helpful several years ago and he reluctantly desisted. He then produced a little book and showed S, who he already knows has some problems with vision, four poorly reproduced passport-sized B & W photos of a very young Tony Blair, Bill Clinton, Parkinson and someone else, can't remember. Did she recognise them? No. Did she not recognise this one - pointing to Blair. No. But what he didn't learn was that S often follows the TV news, and comments appropriately at times. I wouldn't mind betting that she would recognise Gordon Brown if he ever appeared now.

Anyway, I could see that he was working towards a diagnosis - that's how they see their job. So when he started to sum up, I asked him if anything he was going to say would offer us help in terms of treatment. The answer, of course, was no. Then he said that we deserved certainty, we should have a diagnosis - even though we hadn't asked for one - and that S has Alzheimer's. He said that people at the clinic had been beating about the bush (he didn't use that phrase but that was the gist) for too long, looking at all sorts of other possibilities (quite a sensible approach, I would have thought) and saying that S was atypical when she wasn't at all, it was just that the memory clinic staff did not see many young onset patients - if they had seen those that he has seen they would realise that S's symptoms were not atypical at all.

In case I haven't made this clear previously, we knew that S has some form of dementia, that it is progressive and that there is no treatment. The fact that some arrogant, patronising know-all has given it a name makes not one iota of difference.

All this raises a lot of issues which I will return to in future posts. Perhaps one of the most important is the fact that there is only one way in which Alzheimer's can be positively diagnosed and that is post mortem.

The difference between being seen by the Prof and this robot is that when you walk away from an appointment with the Prof you feel positive, even though there is rarely anything substantial to feel positive about. When we walked away this time, we felt totally negative about the experience. Essentially, the difference is about being treated as a whole person rather than a brain with a body attached to it.

Dementia timebomb hoax

The media are full of this today. It's not a hoax in the sense that there isn't a massive problem further on down the road as more and more of us live longer and therefore more and more of us suffer from dementia, but the emphasis of this campaign launched today is the need to get a diagnosis and then.............what?

This perhaps.

They should really find another name

A stupid 'specialist' to whom S was referred when we were applying for ill-health retirement stated in an illiterate report that she appeared 'not so much demented as depressed' - this when she had already been attending the memory clinic for several years and when regular tests and several scans had shown that there was a real problem. No-one else felt that, at that time, she was depressed in a clinical sense though naturally she wasn't over the moon about what was happening to her.

Dementia has very unfortunate connotations, 'demented' is even more suspect. Like 'mental' and 'deranged' - no-one would want these words applied to them. The common usage of these words also seems to suggest a permanent state when, even at an advanced stage, there can be periods of 'normality'.

This is not some PC thing. The words just aren't helpful - to anyone.

Connected to this is the whole concept of diagnosis, of which more later.