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The Does and the Don’ts

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
As I’ve read post, it became clear that there is a divide often between those that want to know the diagnosis and those that don’t.
It does seem to be divided by which position you are in. If you are the Carer, then you seem to want a diagnosis to verify what you’ve been saying all along and then there is the one that is showing the signs, that really do not want to be told!

I would ask, what is the benefit of knowing? I’m not sure if this means you can claim benefits that will help in the care, but other than that, there does seem very little to be gained. I am talking from the position of have been told I have dementia, so as you may expect, my view is slightly biased.

It is also clear to me that both those looking after and those being looked after, know that there is a problem and what the problems are related to. Often it seems the moment those problems first start to manifest themselves are also quite marked.

Having just read this post, ‘Spotting the early signs of dementia: What’s the point.’ I’m still at a loss to know why anyone would want to know, unless there is something that can be done to change the course of it!?

It does state that recently a number of trials testing new treatments for dementia have failed, but they believe it might be because they are looking a people in which the condition has gone too far!?

Firstly, billions have been put into research to find a treatment and none have proven any benefit as a cure! Secondly, why does the system still insist on delaying any testing and assessments for people that first raise concerns. It seems to be that by the time a diagnosis is given, for many, the prognosis is 99% an end game!?

The research states that changes in the brain associated with dementia my begin up to fifteen years before the symptoms begin. Apparently if they could detect these people, they could start testing more treatments.

My questions:

Where has this 15 year figure come from, because if you do a bit of research yourself, this figure changes?

What treatments are they talking about, the same treatments they are using now, in the hope that using them earlier will solve the problem?

What are the treatments for and what is the hope?

They talk of looking for triggers that lead to dementia developing, but this is not an original idea. This has been a question since dementia research begun!

Where is the research into the history of people with dementia, what happened before the signs, looking at medical records and accounts that may seem to have no direct connection, such as bereavement and depression?

They talk of novel ways to diagnose dementia, but they don’t say what they are looking for?

Simple blood test to detect what?

AI to understand the impact of tau and amyloid plaques affect nerve cells. An area that has still no proven causal link to dementia.

VR to help assess memory and behavioural problems. Should try asking the people involved, the demented and the carers!?

GameChanger and using smartphones to look at an idea called healthy ageing. I though ageing didn’t play a part, or am I reading the wrong research papers?

The biggest resource that is used the least…. the carers and the cared for! When will these people be seen as the solution to the problems, rather than just the problem, the lab rats and research as just something to complete a degree, master, or doctorate?

It is surely obvious to most by now, that dementia is not something we catch! There is a cause, it starts early for most.

If research stays with the same dogmatic framework, progress will continue to be slow, or as so far, none existent! Millions and Billions wasted! In the meantime, millions around the world are given little or no hope and for those that are oblivious, they are hoping to be bringing you the bad news soon!

You may be asking why am I so worried about this and the answer is simple, I'm one of those sent home to die, without hope, in an uncertain manner, lost, alone and scared! While people play with their games and blood test. If you was me, what would you do?
 

Sam Luvit

Registered User
Oct 19, 2016
5,996
East Sussex
Morning @NotTooLate

You ask what is to be gained by getting a diagnosis and why do some persue that with such vigour? It doesn’t change the outcome, you are in the same position the day after diagnosis as you were the day before.

I have a different disease or condition, but both are heading towards an unchangeable result. I wanted to know what it was.

I was a very active child, competing in sports and thoroughly enjoying the intensive training. Then one day, I woke up and nothing worked. I hadn’t fallen, there was no injury, but from that day on, I was in pain. Walking, sitting, standing or lying down, everything hurt. I was fifteen. Fifteen year olds did not suddenly get back ache

Over the next nine years, I was poked and prodded, tested and x-rayed. I was offered Painkillers but no reason for the pain. I met doctors who assumed I was trying to get time off work and others who wrote a prescription and waved me off.

I had no confidence in the medical profession. At nineteen I learnt pain management and came off all painkillers. I still had no idea what the cause was, so I didn’t know if I was making things worse or better by trying to live a “normal” life. It was the fear that I might be making things worse that got me to keep trying to find out “why” or “what” it was

At twenty three, nine years later, I changed doctor for the zillionth time and by pure chance, I met a GP who wanted to find out why and not reach for the prescription pad. I’d struck gold. He was an ophthalmic surgeon, with an interest in alternative medicine whose interest was back problems. He was an amazing doctor, highly regarded in his profession and I found him by pure luck

Nine years of questioning my sanity, of wondering if it was psychosomatic, if there was in fact a part of me that didn’t want to be sporty, or if there was something nasty going on that no one was telling me.

Turned out it was just boring old OA of the spine. At the time, doctors thought it only affected old people, so they didn’t consider it.

Why did I tell you this? The diagnosis made no difference. I still have OA marching through my body, appearing in one place after another. There is no cure. They can’t even agree on what does or does not help and my end result will be a wheelchair.

Absolutely nothing was changed by being told what was wrong. But I changed. There is a reason why I ache when it’s damp. It’s not in my head, it’s a real reason. It had a name. The name gave me direction to research if I wanted to. The name changed nothing, but it changed how I lived and what I do. I balance what I do on day one with what I need to be able to do on day two. So, if I want to drive a hundred miles tomorrow, I will have an easy day today. My prognosis of ten to fifteen years of needing a stick and then a wheelchair has passed and then some. Instead of that happening in my forties, it will probably be in my sixties.

The diagnosis of dementia or arthritis doesn’t change the disease or the prognosis, but it changes how you do things. It also changes other people’s attitude to you. Not always in a good way, but, understanding the underlying reasons is helpful for other people. I can’t walk for several hours, it’s not me being lazy, it’s because I can’t do it.

An understanding of dementia, as much as we can understand it, means other people can make allowances, can try to support. My mums diagnosis was devastating to her, as a retired dementia nurse, she could only see the end result. I learnt how to walk away and come back smiling when she got “in a loop” and was angry but didn’t know why. I learnt to spot signs of anxiety and try to find ways to reassure her. I learnt the symptoms of UTI’s and arranged for AB’s.

The diagnosis of dementia means you sort the practical side of things, the LPA’s so your wishes will be carried out when you can’t make those decisions. If someone needs to care for you, they can claim Carers Allowance, a reduction in Council Tax bills and getting out on the “vulnerable person list” for services, so that power, phones, water etc issues see you at the top of the list for repairs. You can also register with the police a statement giving a description, places you like to go and medical issues (diabetic, asthmatic etc), so that if you get lost, the search starts much earlier than otherwise might

While I understand your feelings towards getting a diagnosis not making any difference, you had dementia before someone told you that’s what you have, knowing might help you understand why you feel some of the things you feel. It’s also prompted you to look into it. Who knows, your questions and searching could be the thing that springboards some meaningful research.

I hope my ramblings don’t offend but I wanted to try to show why a diagnosis can be helpful
 

NotTooLate

Registered User
Jun 10, 2017
301
Alvechurch
toolate.blog
Good Morning @Sam Luvit

Finding that amazing doctor, something I’ve heard a lot, but it always leaves me with the question, how many didn’t?

I can certainly see the benefits for financial support and help from local authorities. I wholeheartedly believe in any support, that any less-abled person can get and need.

Your words do not offend at all, in fact I wish more would share their thoughts.

If I was told I have this, or that, that is ok, but then if you are told there isn’t anything that can be done! It is like ending your life! You started with this, ‘heading towards an unchangeable result,’ but I don’t believe that to be true. There is always something, up until that point arrives when your mind of body can no longer go on, but to accept that now!?

I’ve read accounts of people with terminal cancer, living the remaining time more alive than ever before. You see, I don’t think people see life as being terminal, but it is, but we just seem to drift by and let it be…. never getting out of it all we can, just a life of regret and lots of moaning, that does do anyone any good!

When I started having problems and was told this and that, I didn’t just go, ok, that’s it, time to start wrapping my life up. I could see I had problems, but I looked at what I could do, not what I couldn’t. I’ve known and still know some amazing people, that have far greater problems than me and many have had them all their lives. They have shown me the way. It’s not about disability, it’s ability!

I believe a diagnosis with no hope, is not worth having. That is my opinion and is no better than anyone else!

I live with my dementia, deafness, epilepsy, Menieres, being in a wheelchair, unable to use the toilet, but this doesn’t mean my life is over! Life means my life will be over someday, but changing my life to live it to the full, or as best I can, that’s what I’m doing, each and every day! That is what I think everyone should do!

Stay safe and keep well my friend!

Richard
 

dbrilyant

Registered User
Sep 14, 2014
30
As I’ve read post, it became clear that there is a divide often between those that want to know the diagnosis and those that don’t.
It does seem to be divided by which position you are in. If you are the Carer, then you seem to want a diagnosis to verify what you’ve been saying all along and then there is the one that is showing the signs, that really do not want to be told!

I would ask, what is the benefit of knowing? I’m not sure if this means you can claim benefits that will help in the care, but other than that, there does seem very little to be gained. I am talking from the position of have been told I have dementia, so as you may expect, my view is slightly biased.

It is also clear to me that both those looking after and those being looked after, know that there is a problem and what the problems are related to. Often it seems the moment those problems first start to manifest themselves are also quite marked.

Having just read this post, ‘Spotting the early signs of dementia: What’s the point.’ I’m still at a loss to know why anyone would want to know, unless there is something that can be done to change the course of it!?

It does state that recently a number of trials testing new treatments for dementia have failed, but they believe it might be because they are looking a people in which the condition has gone too far!?

Firstly, billions have been put into research to find a treatment and none have proven any benefit as a cure! Secondly, why does the system still insist on delaying any testing and assessments for people that first raise concerns. It seems to be that by the time a diagnosis is given, for many, the prognosis is 99% an end game!?

The research states that changes in the brain associated with dementia my begin up to fifteen years before the symptoms begin. Apparently if they could detect these people, they could start testing more treatments.

My questions:

Where has this 15 year figure come from, because if you do a bit of research yourself, this figure changes?

What treatments are they talking about, the same treatments they are using now, in the hope that using them earlier will solve the problem?

What are the treatments for and what is the hope?

They talk of looking for triggers that lead to dementia developing, but this is not an original idea. This has been a question since dementia research begun!

Where is the research into the history of people with dementia, what happened before the signs, looking at medical records and accounts that may seem to have no direct connection, such as bereavement and depression?

They talk of novel ways to diagnose dementia, but they don’t say what they are looking for?

Simple blood test to detect what?

AI to understand the impact of tau and amyloid plaques affect nerve cells. An area that has still no proven causal link to dementia.

VR to help assess memory and behavioural problems. Should try asking the people involved, the demented and the carers!?

GameChanger and using smartphones to look at an idea called healthy ageing. I though ageing didn’t play a part, or am I reading the wrong research papers?

The biggest resource that is used the least…. the carers and the cared for! When will these people be seen as the solution to the problems, rather than just the problem, the lab rats and research as just something to complete a degree, master, or doctorate?

It is surely obvious to most by now, that dementia is not something we catch! There is a cause, it starts early for most.

If research stays with the same dogmatic framework, progress will continue to be slow, or as so far, none existent! Millions and Billions wasted! In the meantime, millions around the world are given little or no hope and for those that are oblivious, they are hoping to be bringing you the bad news soon!

You may be asking why am I so worried about this and the answer is simple, I'm one of those sent home to die, without hope, in an uncertain manner, lost, alone and scared! While people play with their games and blood test. If you was me, what would you do?
The big plus in knowing I have dementia is that I forgive myself for making mistakes (eg making our lockdown flask of tea to take out on a walk, and forgetting to use tea bags). And I suspect the drugs help me to think my way out of the pickles the dementia gets me into.
 

AliceA

Registered User
May 27, 2016
2,861
We were glad to get a diagnosis, it ruled out other conditions. It helped us both to work together to deal with things as we felt it was THE dementia.

I found I did not take things personally when dementia was causing a bad day.
It allowed for recognition so we could access help, this was important to get support. Financially and practical, it helped us get plans in place. It helped us to prepare and simplify. Without we would have been parted sooner. I managed to care at Home against all odds.

We are all different, there is no right way or wrong way, it was our way. We had always tackled life like that.

Now I am alone. How would I approach it now if I end with idemenyia?
perhaps it is personality.
I would get my house in order then I would enjoy life as far as I could.
I already have POA etc in place. Let my wishes be known.

I have lived with another health issue so I know for me I would make plans then trust it to the universe. Why, well there are no set times in life. Some live happy lives some do not, with so much there is no rhyme or reason it seems. We do our best, we can do no more. I hope what I say does not upset, anyone.

I did study the disease and the research, this was to be able to answer well meaning people who gave advice, some really did not have a clue.

I do hope that being on here helps, there are many type of Dementia, then one has to equate the situation, income, personality and so much more.

With kind wishes, Alice
 

Lawson58

Registered User
Aug 1, 2014
2,164
Victoria, Australia
I don't think anyone has said that symptoms could appear as early as fifteen years before diagnosis was a hard and fast marker. I have heard that it could be twenty years and maybe that time line depends on how observant the partner/daughter/son is about the person who ends up with dementia. And often it is only in hindsight that people are able to put two and two together about things that happened years before and recognize them for what they were.

You should check out Kate Swaffer on YouTube. She is a person who has Alzheimer's but has not let it stopped her doing anything. She is an amazing advocate for people with dementia and I think you would find it interesting to see some of her presentations.
 

Dunroamin

Registered User
May 5, 2019
44
An extremely early diagnosis can be either positive or negative depending to some degree on personality. I was diagnosed very early due to my professional knowledge and an ex colleague who listened to me. It has enabled me to make a list of all the things I want to do whilst I can, and I am working through it. I have also set up various legal documents. I have been open and honest about my Alzheimers to friends and relatives which has got rid of any elephants in the room. I already have a supportive network of professionals, support workers and family and friends.

We are currently sorting out for a further downsize and will move to more appropriate accommodation in due course. I intend to make a difficult journey for my carers as easy as possible by putting everything into place now.

@Lawson58 thank you for the Kate Swaffer information. I will go and liaise with google.
 

Lawson58

Registered User
Aug 1, 2014
2,164
Victoria, Australia
An extremely early diagnosis can be either positive or negative depending to some degree on personality. I was diagnosed very early due to my professional knowledge and an ex colleague who listened to me. It has enabled me to make a list of all the things I want to do whilst I can, and I am working through it. I have also set up various legal documents. I have been open and honest about my Alzheimers to friends and relatives which has got rid of any elephants in the room. I already have a supportive network of professionals, support workers and family and friends.

We are currently sorting out for a further downsize and will move to more appropriate accommodation in due course. I intend to make a difficult journey for my carers as easy as possible by putting everything into place now.

@Lawson58 thank you for the Kate Swaffer information. I will go and liaise with google.
You are a wonderful advocate for people with Alzheimer's and also for those who care for them. Regardless of a dementia diagnosis, I think it is wise for all of us to have the sort of preparations you have made to make life easier for our loved ones.

I think Kate Swaffer will inspire you further.