Have I missed something? The Independent website quotes campaigners warning that hundreds of thousands of dementia sufferers risk missing "life-changing" treatment after diagnosis rates plummeted during the pandemic.
What ‘life changing’ drugs?
- Thread starter Agzy
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Is this it?
Elsewhere Chris Whitty has stated that lack of diagnosis during lockdown has meant statins and hypertension meds have not been prescribed.
I take the point that these drugs are more effective than anything offered for dementia.
What hope is there? If someone goes to the GP with early dementia symptoms they are brushed off, told not to worry and sent away. No one gets referred to the Memory Clinic if their symptoms are mild.
Yet we are told early diagnosis is essential if people are to get those drugs that are claimed to slow things down in the early stages.
Maybe someone can explain to me how it is possible to reconcile these opposing things.
Yet we are told early diagnosis is essential if people are to get those drugs that are claimed to slow things down in the early stages.
Maybe someone can explain to me how it is possible to reconcile these opposing things.
These so called experts just don't live in the real world. it took me 6 years to finally get a diagnosis for mum, at which point she was thought to be in the latter stages of the disease. She was then offered drugs to try and slow things down and keep her even longer in the desperately awful state she had deteriorated to. In my experience, dementia is just not taken seriously and very misunderstood by those who do not have direct experience of the issues. The lack of support for dementia sufferers and their families is a disgrace.
Currently there is only one new drug that has been developed so I am not quite sure how significant this statement is as reported :
Lecanemab and Aducanumab despite a lot of heralding of these new drugs, they are still very limited in their affect and under development. Availability still has a big question mark over it currently. They might be a scientific breakthrough but my impression is that there is still much work to be done in terms of efficacy.
I fail to understand how we have ended up with shortfalls in dementia diagnosis, knowing that early basic interventions can stem off or slow down progression and buy some time. I get very frustrated by the attitude and approach to dementia in my own world of work so it doesn't surprise me that the cultural inheritance dementia has still remains in many quarters. Don't take this the wrong way, but even if someone has a bad cancer prognosis they are more likely to get the right attention, at the right time and in the right place by the right people, but dementia - you might as well bang your head against a brick wall -in fact I think I have on a number of occasions 🤕
Of course pinning this down to its root cause will be difficult. Yes the pandemic was an issue, but should services have been closed down to the extent they were, knowing the impact this would have?
Again people with dementia and their families get a raw deal, but after so long living with this now, nothing surprises me anymore.
“At a time when new treatments for dementia are on the horizon, it has never been more important for people to be diagnosed quickly and accurately. Failure to improve diagnosis rates could result in many people missing out on potentially life-changing medicines when they are available.”
Note it states 'potentially life-changing medicines when available' -referring to the new immunotherapy drugsLecanemab and Aducanumab despite a lot of heralding of these new drugs, they are still very limited in their affect and under development. Availability still has a big question mark over it currently. They might be a scientific breakthrough but my impression is that there is still much work to be done in terms of efficacy.
I fail to understand how we have ended up with shortfalls in dementia diagnosis, knowing that early basic interventions can stem off or slow down progression and buy some time. I get very frustrated by the attitude and approach to dementia in my own world of work so it doesn't surprise me that the cultural inheritance dementia has still remains in many quarters. Don't take this the wrong way, but even if someone has a bad cancer prognosis they are more likely to get the right attention, at the right time and in the right place by the right people, but dementia - you might as well bang your head against a brick wall -in fact I think I have on a number of occasions 🤕
Of course pinning this down to its root cause will be difficult. Yes the pandemic was an issue, but should services have been closed down to the extent they were, knowing the impact this would have?
Again people with dementia and their families get a raw deal, but after so long living with this now, nothing surprises me anymore.
Not just availabilty but cost. Even assuming these drugs are given the OK in this country, who will get them? I can't see the NHS forking out. And the cost is not limited to the drug itself as it has to be given fortnightly, intravenously, i.e. in a hospital setting, which obviously has costs for the NHS. The side effects are serious - brain bleeds, etc. And guess what - anyone on the drug must have regular (very expensive) scans to check for that so there's another cost. And an appropriate consultant to oversee all this.
How many carers will want to take their PWD to hospital for this treatment every couple of weeks, plus all the necessary checks as well? How many would find it impossible or just too upsetting for their loved one?
Of course, as we don't diagnose people with early dementia, for whom these drugs may have some benefit, the actual cost will be nil. It's just never going to happen...
I think it would be best if you put these points in a letter to the Secretary of State for Health and Social Care, because penultimately only they can answer the question on cost.Not just availabilty but cost. Even assuming these drugs are given the OK in this country, who will get them? I can't see the NHS forking out. And the cost is not limited to the drug itself as it has to be given fortnightly, intravenously, i.e. in a hospital setting, which obviously has costs for the NHS. The side effects are serious - brain bleeds, etc. And guess what - anyone on the drug must have regular (very expensive) scans to check for that so there's another cost. And an appropriate consultant to oversee all this.
How many carers will want to take their PWD to hospital for this treatment every couple of weeks, plus all the necessary checks as well? How many would find it impossible or just too upsetting for their loved one?
Of course, as we don't diagnose people with early dementia, for whom these drugs may have some benefit, the actual cost will be nil. It's just never going to happen...
I think there is a gross misunderstanding over these new immunotherapy drugs in general, because there is much that is just not known about them, including in how they work and that is the same in cancer immunotherapy as well.
Yes they can reap benefits but they are also largely an unknown entity and the cost is not just in the practicality of them being used but also in their limitations in some of the population they are used in.
I think the defining problem is that while by comparison some cancers can be made to remission on immunotherapy and with a lot of risk, there is no real comparison with dementia. As you say there are also practicalities of using these drugs.
Dementia is thought to generally start long before there are signs and symptoms, in some instances estimations are 15 years before -where does that tally with any of this now? Perhaps this is a token gesture rather than a real approach to effective treatment. Why aren't we using more better approaches to early detection and screening, cancer doesn't have these limits imposed on it so why does dementia?
The bigger question in the scheme of things is 'does immunotherapy have a real future in the treatment of dementia?' Because so far I haven't seen anything to suggest this, either historically or scientifically convincing research that makes me think 'yes this is it'
I also think they are barking up the wrong tree with immunotherapy. At best it seems a rather poor sticking plaster that has a tendency to fall off.
Its a very tall order to expect to find a way out for people with dementia with such a small breakthrough, not only that the original news article sings out a type of single treatment for dementia, which of course is another untruth because there can never be a single treatment for all types of dementia.
Screening needs to start much earlier, because even though we don't have any real new drugs that hold the 'wow factor', even basic interventions can help prolong cognition and memory and buy some time and that is better than nothing at all
This is key. And perhaps we need to follow up with the research that discovered dementia starts 15 years+ before symptoms appear. Surely that would seem to be a better starting point.
We have screening for all sorts of diseases, in some cases quite frequent screening, and so you could screen for dementia at, say, 55 or 60 years of age. Treatments are only likely to be effective if they are started early. I think that dementia is still seen as a disease that affects old people but these days people in their later 60s and 70s - the classic ages at which people with dementia show symptoms (of course, some people show symptoms much later) - are not considered old and are regarded as having many years of at least a reasonable quality of life left.
I think with early onset dementia and I mean in people who are in their 30's there is a good enough argument to say that old age is not a sufficient marker of dementia, even though it seems to be diagnosed in later ages and perhaps for all intents and purposes there is a missing link. The problem with researchers is that they have to narrow their research questions and designs to prove a specific aspect and whilst this may or may not be productive it means there are gaps elsewhere that are unexplored until someone says hey look over here instead of over there -that process amongst researchers can take decades
And yet… only a couple of weeks ago, some newspaper (sorry, can’t remember which one) was heralding the news that the new initiative to pick up potential cases of dementia was to screen care home residents. Now, as we all know, 70% of care home residents are only there because their dementia is so advanced that they have to be. So what nut job thought this up? And what does it say about the complete lack of understanding there continues to be about absolutely everything connected to dementia? I despair, I really do.
Sometimes we just have to laugh at the face of adversity and think something I can't repeat on here 😁
It was just this quote on my ipad and Goggle showing snippets from newspaper headlines and this was from ‘The Independent’ and it annoys me as these throwaway headlines raise hopes that will be dashed. Proved and excellent response rom you and other though, thank you x
I don’t think that in spite of years of research, there is enough known about dementia. You only have to read the posts on TP to know that there is a great diversity and variability in the expression of dementia in the people we care for which indicates to me that we are still in the realms of comparative ignorance when it comes to these diseases.
Until you can accurately diagnose a disease, then how can you successfully research a cure or treatment?
Because dementia does not have the immediacy of threat to life as in cancer, the medical profession tend to be a lot more relaxed about it as do governments. I also think that hard pressed GPS realise that they really don’t have any of the answers and all they can do is treat the symptoms.
I know that my husband has dementia. After seeing a specialist for over eight years, the initial diagnosis of Alzheimer’s was then withdrawn and now he remains ‘non diagnosed ’.
Perhaps the place to start is in developing adequate diagnostic tools. That is providing you understand exactly what you are trying to diagnose.
I think it's always going to be very difficult to diagnose early if GPs just use the MMSE. I agree @Lawson58 we need better diagnostic tools - something along the lines of a simple yes/no blood test. If only we could find something specific in the blood that meant you were definitely going to get dementia and was measurable by the age of 30! Maybe then we'd have a chance at treating it effectively.
But I'm thinking that's unlikely. It might be possible for Alzheimer's or some hereditary dementias but things like vascular dementia often develop only after a stroke and who knows who is going to have a stroke? For that we can only go on all the usual things we're supposed to do to prevent (lessen the chance of) strokes. So it's back to healthy diet and exercise, no smoking, etc. But that is not an answer! If anything, it draws us away from looking for the origins of dementia in the brain and I really think that's where we should be looking.
If I decide to put my billions of spare cash into research/pharmaceuticals, that's the direction I would go. I would not be looking for drugs to 'treat' dementia once it is very apparent because I don't really think that is possible. I'd love to be wrong.
But I'm thinking that's unlikely. It might be possible for Alzheimer's or some hereditary dementias but things like vascular dementia often develop only after a stroke and who knows who is going to have a stroke? For that we can only go on all the usual things we're supposed to do to prevent (lessen the chance of) strokes. So it's back to healthy diet and exercise, no smoking, etc. But that is not an answer! If anything, it draws us away from looking for the origins of dementia in the brain and I really think that's where we should be looking.
If I decide to put my billions of spare cash into research/pharmaceuticals, that's the direction I would go. I would not be looking for drugs to 'treat' dementia once it is very apparent because I don't really think that is possible. I'd love to be wrong.
I've been out to visit my mum and have been pondering your points @Lawson58. I am no expert at neuro sciences by any means but I have found myself reading one research article about one specific thing and ended up down the line reading another far removed from the original thing I was reading about -but this is what happens when anyone sets out to learn about a topic or research about something -we discover the answer does not belong to one specific thing. The problem with the human brain is that in many respects it remains a complete mystery. I did look at some papers on mechanisms of dementia at one point and to be fair they were so in depth they were hard reading and I think I realized by the end a lot of what has been written remains hypothetical. So diagnosis is still very much based on signs and symptoms, with some radiological intervention and validated tests. I haven't read in some time over this aspect of dementia so I could have missed any new developments.
I sincerely hope a one point test could be developed, it would save a lot of wasted time.
I think more funding is needed in this area, it has been neglected because drug companies can't see a way of profiteering out of it -sadly that has been the reality until more recent breakthroughs.
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