Misdiagnosis of alzheimers (actually lewy bodies)

[overwhelmed1]

Hi all

My wonderful dad died Christmas Eve of, so his death cert says 'pneumonia' aged 72.

He was diagnosed with Alzheimers 2 and a bit years ago. However, a long time before he died he showed all the signs of lewy bodies. In fact, he maintained awareness of who we were and every stage of his illness right to the end. It was the worst thing I have ever seen.

I am now angry. Why did the memory clinic simply 'mis' diagnose him then say 'see you every 6 months'. No support. No advice for us with how to deal with it all. Even weeks before he died when my dad couldn't hardly walk or speak much anymore he was made to sit through a 'memory test' which made him howl. How heart-breaking.

I feel angry that no medical professional seemed to know or care what was wrong with my dad or give us his family any consideration.

Even the hospital tried to re-susitate my dad as his heart began to pack up. Why would they try and keep him suffering?

Why was he treated like this when people with cancer seem to get every bit of sympathy and support going yet someone with a disease that eats away the brain slowly but surely till the gruelling end is not even known about? Or rather, people don't seem to have heard of it?

They would if they had a parent with it, that's for sure.

I think I will write it all down and send it to a) the doctors b) the hospital c) the government d) the memory clinic

x

 

[TooHard]

You sound very sad and angry.

Is it possible that he had mixed dementia: alzheimer's and lewy bodies? Was lewy bodies formally diagnosed? Is it possible to be precise about types of dementia for all people with dementia?

My mum has mixed dementia (alz and vascular) but has regular hallucinations which may be lewy body induced or related to her partial blindness (Charles Bonnet Syndrome). I'm not sure that it matters very much which it is at this point and mum doesn't find the hallucinations particularly disturbing.

You've had a horrible time, take care of yourself.

 

[Kevinl]

I'm sorry to hear the sad news about your Dad, you have my sympathy, it's never easy losing a parent or indeed anyone you care about.
To be fair to the medical profession, from the factsheet (link below);

"Dementia with Lewy bodies (DLB) is a type of dementia that shares symptoms with both Alzheimer's disease and Parkinson's disease. It may account for around 10 per cent of all cases of dementia. DLB tends to be mistakenly diagnosed as other conditions (that is, DLB is under-diagnosed). This factsheet describes the symptoms of DLB and how it is diagnosed, as well as the treatment and support available"

Diagnosis of dementia conditions is not an exact science, it's very much an opinion based on a varied set of symptoms and ask yourself would the treatment he was give or even the outcome have been any different if there had been a correct diagnosis?
The extent of your grief is evident in your post but I would ask you to think through how differently it would have played out if you knew it was LBD, would it have changed anything in the end? We all go when it's our time has always been my view.
K

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=113

 

[stanleypj]

I can entirely understand your anger overwhlemed. So many of us share the anger.

But, with respect, how can you be sure that he was misdiagnosed? What did they say when you told them your thoughts about what kind of dementia he had? Diagnosis is not a precise science anyway and, as TooHard has pointed out, many people now receive a diagnosis of 'mixed dementia' (I suspect that at least sometimes this means, 'I really can't be sure of the exact diagnosis'.) It's a shame they can't just say that. And what difference would it have made anyway if they had given him an DLB diagnosis? The diagnosis didn't kill him, the dementia did. It took a leading expert 12 years to give my wife a diagnosis and I suspect he still wasn't certain. And it has made no difference. I agree about the memory tests which are at best of dubious benefit.

All forms of dementia eventually lead to death. It's a horrible way to die in many cases and utterly horrendous for loved ones to witness. My heart goes out to you. As I said, I can entirely understand your anger. But I suspect that you would be feeling the same degree of anger whatever the diagnosis had been. I would.

 

[Sue J]

I very much sympathise too overwhelmed and fully understand your anger.

Whilst I agree with others that the illness is difficult to diagnose and the outcome is inevitable I do feel that its lack of proper recognition, because of difficulty in diagnosis means that sufferers receive sub standard care, i.e. care that would not be seen as acceptable fro someone with terminal cancer e.g. the distressing resuscitation attempt you describe. End of life cancer care, which I know also at times also falls short, does include discussion with family about important decisions, not something considered as a must for people suffering Alz or dementia. I would argue it is more important in these cases often as sufferers are unable to speak for themselves.

Do write it all down and send to anyone you consider that needs to hear and I hope that in doing so it will also help you in your grief at the same time as raising awareness.

Take care of yourself.
Best wishes
Sue

 

[Northern75]

Hi all

My wonderful dad died Christmas Eve of, so his death cert says 'pneumonia' aged 72.

He was diagnosed with Alzheimers 2 and a bit years ago. However, a long time before he died he showed all the signs of lewy bodies. In fact, he maintained awareness of who we were and every stage of his illness right to the end. It was the worst thing I have ever seen.

I am now angry. Why did the memory clinic simply 'mis' diagnose him then say 'see you every 6 months'. No support. No advice for us with how to deal with it all. Even weeks before he died when my dad couldn't hardly walk or speak much anymore he was made to sit through a 'memory test' which made him howl. How heart-breaking.

I feel angry that no medical professional seemed to know or care what was wrong with my dad or give us his family any consideration.

Even the hospital tried to re-susitate my dad as his heart began to pack up. Why would they try and keep him suffering?

Why was he treated like this when people with cancer seem to get every bit of sympathy and support going yet someone with a disease that eats away the brain slowly but surely till the gruelling end is not even known about? Or rather, people don't seem to have heard of it?

They would if they had a parent with it, that's for sure.

I think I will write it all down and send it to a) the doctors b) the hospital c) the government d) the memory clinic

x

Hi, I just wanted to say I am so sorry to read about your dad and about everything you are now feeling. Grieving is difficult enough without all these additional feelings that you and your family have been let down. My dad was diagnosed with Lewy Body Dementia a few weeks ago, but this came after a series of misdiagnoses. In September we were told Dad had an essential tremor. Then he was referred to the Parkinson's clinic. We were very fortunate in that Dad was able to see a specialist who recognised his symptoms of Lewy Bodies, but we know there are lots of people who aren't so lucky. It seems that many medical professionals are not familiar enough with this horrible disease (and it really is horrible - it has completely transformed my father within a matter of months). When I first read the symptoms online, it was like reading a description of my dad. Like I say, we were lucky that a specialist was familiar with this, but apparently Lewy Bodies is often misdiagnosed as Alzheimers or Parkinsons. Not so luckily, this same specialist has told us that although dad's symptoms can be 'managed' with drugs (and to a very limited extent, as he is unsettled, anxious or distressed most of the time) that he will deteriorate over time, and probably quite quickly.

You are understandably angry and it is natural for you to feel this way. I have been angry for months now and am trying to control these feelings for my own sake and the sake of my family. It's really not going to get us anywhere and will only lead to further suffering. Misdiagnoses happen because people aren't aware and the right referrals aren't made. Could you channel your feelings of anger in a way that might benefit other sufferers and their families, as well as maybe medical professionals? It would be good for them, but I'd imagine equally important for you. Make sure you take care of yourself xx

 

[overwhelmed1]

thank you

Many thanks to all who replied to my initial post. I was having a rant.

I know my dad would have died whatever his diagnosis but I just feel health professionals should all be aware of lewy bodies, not just alzheimers.

I think families should be aware that lewy bodies is generally a quicker route towards the end...7 years at most. So they can maybe prepare for that a little. We had no idea my dad was at end of life even though all the signs were there. Lewy b is very rapid. People also need to know that with lewy bodies, awareness is there till there end. My dad knew who we were till the very end and he said his disease was horrified him.

I think more people should know about this.

I will try and raise awareness in a positive way if I can x you have helped just listening thanks so much x

 

[nitram]

"I think families should be aware that lewy bodies is generally a quicker route towards the end...7 years at most. So they can maybe prepare for that a little. We had no idea my dad was at end of life even though all the signs were there. Lewy b is very rapid. People also need to know that with lewy bodies, awareness is there till there end. My dad knew who we were till the very end and he said his disease was horrified him."


Sorry to hear about your dad but I feel that the above is overgeneralising the progression of LBD which in common with all dementias can be extremely variable.

Norrms is a TP member who was diagnosed with LDB some 8 years ago. He is an active worker raising awareness in his local area and still regularly posts on TP
http://forum.alzheimers.org.uk/show...ical-illness&p=1231074&viewfull=1#post1231074

My late wife's progression was different, a year after the original MCI diagnosis in Autumn 2009 she was unable to recognise anybody or anything and was unable to verbalise.
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2700&pageNumber=4

Although these examples lie near opposite ends of a very wide spectrum they are unlikely to be the extreme examples.

I was more interested in the probable progression of the syndrome than giving it a name which I soon found was at the best a rough guide.

 

[Crunchy]

My father has just died, I struggled to get a diagnosis for him for the last two years, as he was very clever and articulate and up until the end of last year achieved a good score on all memory tests. He started hallucinating at least 8 years ago, at first abstract geometric patterns and road maps on ceilings etc, which then progressed to children, animals, and entire scenes in which he was transported to historical streets, or beaches where the tide threatened to drown him. He was a very creative man, and was fascinated by these at first, but in later years became frightened and confused as his world became populated by sinister and paranoid delusions.
I've spent the last two years trying to extricate my mum from his care, get him help for his chaotic huge house and garden (he became a compulsive hoarder), and get him into a place of safety against his will. It's been a nightmare as I'm their only child and they lived at the other end of the country.

I work in the NHS so have a good medical knowledge, and I am convinced he had Lewy Body Dementia, he had so many of the key signs. The only reason I cared really was that people with LBD can have severe reactions to certain anti-psychotic drugs and should not be given them.

My dad was sectioned at one stage, and the psych team put him on Quetiapine without any diagnosis, which calmed him down but did nothing to quell the hallucinations. They then discharged him back home alone, he dismissed all SS carers put in place for him, and called me every day terrified about the assassins and creatures that were living in his home and garden, even calling the police out to investigate these at times. The emergency psychiatric teams were worse than useless, as were the GPs and social services, all of who simply told me to call an ambulance whenever he was in a terrified and distressed state out of hours. It took the fire brigade to finally deprive him of his liberty and get him into respite care.

A year on and safely in care, he was still on quetiapine and completely knocked out for a few hours after every dose, he looked like he was having a stroke every day. The psychiatric team still refused to diagnose him with anything other than depression, as I refused to consent to him having a brain MRI scan, as I knew this would terrify him and do little to inform his treatment.

Finally I found this latest research paper, where they have developed a reliable diagnostic tool for LBD. I can't work out how to paste the link!

Google "Lewy Body Composite Risk Score, Galvin"

It's a chart of simple observations with yes/no answers, and my father scored very highly on it.
I sent a copy with a polite letter to the Psychiatric team looking after my dad, and got ZERO response.

Eventually the care home said my dad's behaviour was too erratic for them, so I had to find a Dementia Nursing EMI unit for him asap. Only none of the latter would accept him as he had no formal diagnosis of dementia! I had to pester the psych team relentlessly and they finally gave him a diagnosis of " Unspecified Dementia". I had no joy when I asked them to wean him off the antipsychotics, he hated the soporific effects of these together with the cocktail of antidepressants and pain killers he was given, he was so articulate and needing to talk but this was hard for him for most of each day. I just wanted him to have a chance to feel awake and clear headed in his madness for once. Sadly he succumbed to a series of falls and infections and died mercifully quickly after less than a week in bed when his body started to shut down.

Apologies for the long post, I feel the need to share this in case it helps anyone. I feel very saddened by the underfunding of the NHS, social services, and community psychiatric teams, which lead to us stressed relatives being batted around ineffectually like a ping pong ball, trying to get help for our elderly lived ones.

I will always wonder if my father's quality of life would have been better if he had been treated as if he had Lewy Body Dementia, and cannot understand why he was treated so poorly, so late, with a cocktail of drugs and no attempt to wean him off them, despite all the NICE guidelines advising this.

His care at the end was wonderful, and I can't recommend EMI care highly enough, as all the staff had dementia training and he had a marvellous two months of chatting with similarly eccentric residents and being accepted for who he was

 

[nitram]

"Finally I found this latest research paper, where they have developed a reliable diagnostic tool for LBD. I can't work out how to paste the link!

Google "Lewy Body Composite Risk Score, Galvin"

It's a chart of simple observations with yes/no answers, and my father scored very highly on it.
I sent a copy with a polite letter to the Psychiatric team looking after my dad, and got ZERO response."

You can't post a link until you have made at least 10 posts.

Here's the link:-

http://med.fau.edu/research/Lewy Body Composite Risk Score Form and Instructions.pdf

 

[Crunchy]

Thank you Nitram! I will be posting more soon I'm sure when I have time to explore this forum x

 

[nitram]

The questions asked in the test are essentially the same as continually asked by the two consultants (psychiatrist and neurologist) caring for my wife.

The LBCRS may not have existed at the time as the document is copyright 2015.

 

[Sue J]

"Finally I found this latest research paper, where they have developed a reliable diagnostic tool for LBD. I can't work out how to paste the link!

Google "Lewy Body Composite Risk Score, Galvin"

It's a chart of simple observations with yes/no answers, and my father scored very highly on it.
I sent a copy with a polite letter to the Psychiatric team looking after my dad, and got ZERO response."

You can't post a link until you have made at least 10 posts.

Here's the link:-

http://med.fau.edu/research/Lewy Body Composite Risk Score Form and Instructions.pdf

Thank you Crunchy for your post, welcome to TP am sorry to read of the loss of your Dad and what he and you have been through with his condition.

Thanks Nitram for posting the link, it doesn't seem to have the questions just details about it??

Best wishes
Sue

 

[nitram]

"Thanks Nitram for posting the link, it doesn't seem to have the questions just details about it??"

Try scrolling down to third sheet.

 

[Sue J]

"Thanks Nitram for posting the link, it doesn't seem to have the questions just details about it??"

Try scrolling down to third sheet.

Thank you

 

[Crunchy]

The study has a decent sample size, and put simply, if the answer is "Yes" to three or more of the ten questions, then there is Probable Lewy Body involvement.
My father scored an easy 6 on this, and also had episodes of two other factors, which added to my frustration that they would not consider weaning him off the anti-psychotics, which are clearly contra-indicated for people with LBD.

His life is over and I am trying not to entertain the possibility that the drugs he was on shortened it, as such thoughts would make me angry which is totally not what I need right now. We place our trust in the professionals dealing with our parents, but like anyone, they can be less than perfect and make bad decisions I guess. I'm hoping that by sharing my experiences I can help others to be more empowered or assertive when they're being advocates for someone with dementia.

 

[overwhelmed1]

Response to Crunchy

I am extremely sorry to hear about the loss of your poor father.

My father also was only bedridden in the end for a week but he also went through a terrible 5-7 years.

I too feel as though no health professional seemed to have any idea or care about my dad's condition and journey. For this, I am astounded.

I knew he was at end of life. They didn't. How utterly bizarre.

Again, I am so very sorry for you loss and I understand how awful it all is xx

 

[Crunchy]

I am extremely sorry to hear about the loss of your poor father.

My father also was only bedridden in the end for a week but he also went through a terrible 5-7 years.

I too feel as though no health professional seemed to have any idea or care about my dad's condition and journey. For this, I am astounded.

I knew he was at end of life. They didn't. How utterly bizarre.

Again, I am so very sorry for you loss and I understand how awful it all is xx

I'm so sorry for your loss too. I went through anger, frustration, guilt and tears over trying to get my father the right help, so I know what you're going through too xxx