Article about the NHS and dementia made me see red

[Grahamstown]

https://www.thetimes.co.uk/edition/...strain-of-record-dementia-diagnoses-mf5dxg7wc
These first lines of this article really made me cross:
‘Spotting dementia in a timely way means that people get the care they need, when they need it,’ and I asked the question in my comment, And what would that care be? What do you think the writers meant by this?

 

[Grannie G]

It is misleading @Grahamstown and the only people who really know this are people with dementia and their carers.

 

[northumbrian_k]

I couldn't access the whole article due to a subscription issue but, based on what @Grahamstown has quoted, it sounds like the authors are trotting out a well-aired truism that can be said of any disease or public health issue. Try substituting "cancer" or "alcohol dependency" for "dementia" and it does not make any more sense. Spotting things in a timely way is always a good idea but the first question is how?, followed by how do we know what is needed to deal with this? (what care is required?), and how and when can we ensure that the necessary care is delivered? Just knowing about an issue is not the same as having the resources (money, people, services) to deal with it. As we know, in the case of dementia it is the unpaid family/carers who too often provide the resources until they themselves reach breaking point.

 

[Philbo]

I can't remember exactly when the NHS' TV campaign was launched about getting an early diagnosis for dementia, but I do remember it was still running when my wife was first diagnosed.

I suspect that many naive folk such as me, were horrified at the lack of help and joined-up services available? At first it didn't dawn on me just how much help we would need, so when 2 years later, my wife was discharged by the memory clinic "back to the care of your GP", I foolishly thought we'd get called in to discuss care plans etc. How stupid can one be!!!

 

[Rach1985]

Catching the signs early is all well and good, but to me it sounds like blame. It’s your fault you didn’t do something about it sooner. But I imagine many of us at first miss the signs because we put it down to the ageing process.
If there was more money in the system we would all be having brain scans at a certain age to see if there are any changes in the brain but that will never happen
I really find the blame game frustrating

 

[Rach1985]

Oh and when we take him to the GP in November with concerns it took until June to get a diagnosis so talk about catching it early. It started as taking vitamin D in November. Finally get a referral in January, a brain scan in February. The results were meant to be given in April but that appointment got out back 6 weeks because someone was sick to June. Great job!

 

[Sirena]

I was invited to a free NHS health check recently. Apparently for over 65s it now includes being told 'the signs and symptoms of dementia to look out for' - I assume you get given a leaflet. Whether you're looking for it in yourself (pointless) or in someonelse, isn't clear. And when you've spotted them - what then?

Recognising dementia early isn't particularly useful. As others have said, there is no care available, families are left to deal with it themselves, if there's no family there's no help until a crisis point, and quite often PWDs are very resistant to official help anyway. My mother is fairly amenable but even she told SS she didn't need help when she did, because the default position is "there's nothing wrong with me".

 

[Jaded'n'faded]

I was invited to a free NHS health check recently. Apparently for over 65s it now includes being told 'the signs and symptoms of dementia to look out for' - I assume you get given a leaflet. Whether you're looking for it in yourself (pointless) or in someonelse, isn't clear. And when you've spotted them - what then?

Recognising dementia early isn't particularly useful. As others have said, there is no care available, families are left to deal with it themselves, if there's no family there's no help until a crisis point, and quite often PWDs are very resistant to official help anyway. My mother is fairly amenable but even she told SS she didn't need help when she did, because the default position is "there's nothing wrong with me".

You're absolutely right. Whilst I think it's really important that people with early onset dementia get help ASAP, not least because it might give them access to the 'slowing down' drugs, it seems totally pointless with 'old age' dementia.

Who is to say what could be early dementia, MCI or 'normal' old age slowing down? They all look pretty similar in the early days and it would take a pretty amazing health professional to diagnose at that stage. Expensive scans can be inconclusive even in later stages. The only people able to spot the early signs are family members who know the person really well and can see subtle changes.

And what good would it do? In the early stages my mum did not need intervention and it would have been massively insulting if I'd marched her down to the doctor. She would never have spoken to me again.

There are enough people with full-blown dementia who need help/treatment/better monitoring without worrying about people who may or may not be in the early stages.

I hate that word 'timely'. Nothing about diagnosis, medical treatment, needs assessments and social service involvement happens in a timely manner.

I'll stop before this turns into a full-on rant rather than a little one

 

[Grahamstown]

You're absolutely right. Whilst I think it's really important that people with early onset dementia get help ASAP, not least because it might give them access to the 'slowing down' drugs, it seems totally pointless with 'old age' dementia.

Who is to say what could be early dementia, MCI or 'normal' old age slowing down? They all look pretty similar in the early days and it would take a pretty amazing health professional to diagnose at that stage. Expensive scans can be inconclusive even in later stages. The only people able to spot the early signs are family members who know the person really well and can see subtle changes.

And what good would it do? In the early stages my mum did not need intervention and it would have been massively insulting if I'd marched her down to the doctor. She would never have spoken to me again.

There are enough people with full-blown dementia who need help/treatment/better monitoring without worrying about people who may or may not be in the early stages.

I hate that word 'timely'. Nothing about diagnosis, medical treatment, needs assessments and social service involvement happens in a timely manner.

I'll stop before this turns into a full-on rant rather than a little one

You are right to rant and I can tell you that there are a lot of comments about this article below the line, many mini rants, most of them sensible and agreeing that the headline is wrong as a description of what the NHS does. The level of ignorance about dementia is staggering and I have done my best to answer some of the questions. Education is vital and should be started as early as possible just like any other disease. Things are improving and just this morning I bought 8 cupcakes from my hairdresser who is a very kind person raising money for the Alzheimer’s Society because her partner’s grandfather has dementia. In response to one of her remarks about him I gave her one of the tips from TP, don’t ask questions, but say something about yourself such as ‘I am (name) and going to be married to your grandson. She was asking him ‘do you know who I am’ and of course he didn’t. It is an ongoing struggle as well we know.

 

[big l]

You're absolutely right. Whilst I think it's really important that people with early onset dementia get help ASAP, not least because it might give them access to the 'slowing down' drugs, it seems totally pointless with 'old age' dementia.

Who is to say what could be early dementia, MCI or 'normal' old age slowing down? They all look pretty similar in the early days and it would take a pretty amazing health professional to diagnose at that stage. Expensive scans can be inconclusive even in later stages. The only people able to spot the early signs are family members who know the person really well and can see subtle changes.

And what good would it do? In the early stages my mum did not need intervention and it would have been massively insulting if I'd marched her down to the doctor. She would never have spoken to me again.

There are enough people with full-blown dementia who need help/treatment/better monitoring without worrying about people who may or may not be in the early stages.

I hate that word 'timely'. Nothing about diagnosis, medical treatment, needs assessments and social service involvement happens in a timely manner.

I'll stop before this turns into a full-on rant rather than a little one

I am there too. what support there is - and it is there - you have to circumnavigate yourself when you're written off by the memory clinic. and what exactly were they for? We had 3 visits to the memory clinic, 1 phone call from a memory nurse(?) followed by 27 pamphlets through the post (17 then 10). I gave them the diagnosis, I suggested cognitive therapy, oh, and I suggested various guard rails. And then, after I contacted them, a true fairy godmother of a memory nurse, who got things organised - but - only 1 visit. I then got a card asking me to rate their service...I know my rant is further on the line. - but when does it get better please? We have now been handed back to our G.P.

 

[Dunroamin]

i have an extremely early diagnosis but this is due to my occupation prior to retirement. My GP said my symptoms were stress related then asked me what i did prior to retirement. 'Oh' was the response and a referral to memory was then promptly made. So is the early diagnosis helpful? Sadly not really. Services are not geared up to me, groups are inappropriate as I still function adequately in many ways, I often have more knowledge than those running the groups - and then there are of course the well meaning friends who insist I do not actually have Alzheimers.

 

[Sirena]

A bit more about my mother's path to diagnosis, prompted by your post @Jaded'n'faded .

She was unusual in that she thought she had dementia before anyonelse did. Her GP referred her to the memory clinic, where the CPN did the tests and told her they showed she had dementia, and referred her to the memory clinic doctor. The doctor redid the tests and told her she didn't have dementia, just MCI, or as he put it "there is nothing wrong with you'.

9 months later she ended up in A&E with a minor health issue, and the hospital doctors thought she was behaving oddly, and requested a referral to the memory clinic and to SS. The memory clinic (different doctor) diagnosed 'moderate' dementia, and a scan was organised. Only it wasn't. 8 months and multiple phone calls later she finally got an MRI - Alzheimers diagnosed.

The doctor wanted to try her on memantine, which was the only medication ever suggested. However first of all she needed tests on her heart function and blood pressure and unbelievably, these tests took nearly a year to be finalised. They then decided memantine would not be useful.

So despite efforts there was no early diagnosis, and no treatment anyway. And all her care has been arranged by me and self-funded.

 

[Countryboy]

i have an extremely early diagnosis but this is due to my occupation prior to retirement. My GP said my symptoms were stress related then asked me what i did prior to retirement. 'Oh' was the response and a referral to memory was then promptly made. So is the early diagnosis helpful? Sadly not really. Services are not geared up to me, groups are inappropriate as I still function adequately in many ways, I often have more knowledge than those running the groups - and then there are of course the well meaning friends who insist I do not actually have Alzheimers.

well I agree with Dunroamin
if only we had hindsight when asked if we would see a Dementia Consultant my personally view on having an early diagnoses of Alzheimer’s in 1999 aged 56½ wasn’t an issue or problem and I was asked if I try the new drug Aricept however within a year I started having second thoughts about the diagnoses why because previously I had No idea of the stigma attached to a word Dementia and here I was having to fight off the bureaucrats the DVLA , my employers, Police, etc I therefore started to query my diagnoses with Consultants to get the diagnoses overturned or removed for medical records finally I managed to get a PET brain scan in 2003 and SPECT brain scan in 2004 unfortunately the scans showed damage or loss of volume so now my medical records says Alzheimer’s & Frontal-temporal-dementia, me personal I was 76 a few days ago so after 20 years I’m still active ok other medical issues not related to dementia I’m still on the Aricept so maybe that was the answer the medication that kept me active. , I don’t feel much different after 20 years now I'm getting older staying above ground is the challange