Diagnosis difficulties and delay

[dadneedsanswers]

I have turned to this forum as a last resort and would greatly appreciate any advice from anybody who has been through a similar situation.

Since January this year my dad has been having tests for dementia after presenting with some short-term memory problems and, most significantly, personality and behavioural changes..He's 56 and had a heart attack in Dec 2013. Summary of tests as follows;
- CT scan (normal)
- referral to general specialist who assessed him from top to toe. Confirmed nothing physically wrong but 'quite likely' he has an early dementia. Suggested GP makes appropriate referrals for an MRI scan and to memory clinic
- MRI scan abnormal, GP told us it shows cerebral atrophy and memory clinic will tell us more info
- Waited several weeks for assessment at memory clinic. After assessment (various tests and questionnaires) told the next stage would be to see a consultant at the memory clinic who would use all of the above info to make a diagnosis
- Finally had appointment yesterday to be told that the consultant doesn't know what is wrong and the MRI is normal (shows atrophy of cranium which is most likely an incidental finding as dad's balance etc not affected and doesn't explain his main symptoms)
- Consultant said he will arrange for further tests (PET scan and neuropsychological assessment) but mentioned the wait list is very long and it could be 6 months before we have any clairty, and told us there is no point in rushing...

Mum and I (and dad) came away from this appointment none the wiser and totally frustrated. Consultant did not seem to appreciate the daily difficulties we are facing and had absolutely no sense of urgency and when I asked what we could do in the mean time (considering day to day emotional and financial strains of care) he just said he didn't know and couldn't help us.

My dad's behaviour and personality has changed significantly compared to recent years and especially over the past 7 months. He can barely hold a conversation and has minimal social awareness and often behaves inappropriately, which is just not like him. He has not been working since December and there is no way he could manage a job or even get through an interview.

I'm wondering if anyone has had similar difficulties with a) getting a diagnosis and b) getting the consultants to acknowledge how bad a patient is despite assessments and the scan not being too concerning? How did you get the doctors to listen?

The hospital that we have been sent to is very much for 'older patients' and the consultant in fact said he's only used to seeing people who are 75+. Can anyone recommend a hospital or doctor who is good with Young/early onset dementia patients?

Apologies for the rambling!

S

 

[nitram]

As a first step I suggest that you go back to the GP and explain your problem, a written list of 'events' would be useful.

 

[theunknown]

I don't have any answers, but suggest that you read about 'Benson's syndrome'. My mum was sectioned, and then I was told that she wouldn't be able to return to her own home. She's now in a care home near me (in an EMI unit), but has never had a diagnosis of Alzheimer's. From what I can gather, if a brain scan is looking for indications of Alzheimer's, the scan will not be focusing on the area of the brain that indicates posterior cortical atrophy (Benson's syndrome). This syndrome is often linked with Alzheimer's, because of the similar symptoms.

I know I'm not really helping, but that's because I feel like I'm the blind leading the blind. Just offering a bit more information x

 

[Kevinl]

Hi DNA, welcome to TP
Unfortunately your story is an all too common first post on here.
Taking the issue of the diagnosis, once it has been established that what your Dad has is some form of AZ or dementia and it's not a physical thing that can be treated (like a tumour, thyroid or whatever) then that's about it as far as the NHS are concerned.
As there's no treatment available other than things like Aricept/Donepezil which I guess they've already prescribed then pinning down the exact cause isn't a priority to the NHS hence you were told "there is no point in rushing" by the consultant, the disease will take its course. It may be in the end you get a diagnosis of "mixed and atypical Alzheimer's" like my wife which really tells you nothing or you may get a specific diagnosis. Ultimately to me it doesn't make any difference as knowing "the name of the beast" as it's a matter of dealing with the reality of the situation but other people do feel differently about this.
Like many of us on here you'll find that there isn't much geared towards the younger people with AZ, it seems it's more aimed at the wartime generation than to the hippie kids of the 1960's, but we are very much a minority go I guess they are catering for the majority.
You can get social service to do an assessment (you can contact them yourself to do this, you don't need a referral) but in truth probably very little will happen, but you might get lucky.
I think when you were told when I asked what we could do in the mean time (considering day to day emotional and financial strains of care) he just said he didn't know and couldn't help us." about sums it up, you are sadly very much on your own dealing with AZ, that why Talking Point is so helpful to us all.
Sorry to go on so long.
K

 

[dadneedsanswers]

I don't have any answers, but suggest that you read about 'Benson's syndrome'. My mum was sectioned, and then I was told that she wouldn't be able to return to her own home. She's now in a care home near me (in an EMI unit), but has never had a diagnosis of Alzheimer's. From what I can gather, if a brain scan is looking for indications of Alzheimer's, the scan will not be focusing on the area of the brain that indicates posterior cortical atrophy (Benson's syndrome). This syndrome is often linked with Alzheimer's, because of the similar symptoms.

I know I'm not really helping, but that's because I feel like I'm the blind leading the blind. Just offering a bit more information x

Thank you, I really appreciate that and will definitely have a look. It's a help just to be taken seriously when a medical professional reacts as though nothing is seriously wrong when actually you're watching somebody fall apart

 

[dadneedsanswers]

Hi DNA, welcome to TP
Unfortunately your story is an all too common first post on here.
Taking the issue of the diagnosis, once it has been established that what your Dad has is some form of AZ or dementia and it's not a physical thing that can be treated (like a tumour, thyroid or whatever) then that's about it as far as the NHS are concerned.
As there's no treatment available other than things like Aricept/Donepezil which I guess they've already prescribed then pinning down the exact cause isn't a priority to the NHS hence you were told "there is no point in rushing" by the consultant, the disease will take its course. It may be in the end you get a diagnosis of "mixed and atypical Alzheimer's" like my wife which really tells you nothing or you may get a specific diagnosis. Ultimately to me it doesn't make any difference as knowing "the name of the beast" as it's a matter of dealing with the reality of the situation but other people do feel differently about this.
Like many of us on here you'll find that there isn't much geared towards the younger people with AZ, it seems it's more aimed at the wartime generation than to the hippie kids of the 1960's, but we are very much a minority go I guess they are catering for the majority.
You can get social service to do an assessment (you can contact them yourself to do this, you don't need a referral) but in truth probably very little will happen, but you might get lucky.
I think when you were told when I asked what we could do in the mean time (considering day to day emotional and financial strains of care) he just said he didn't know and couldn't help us." about sums it up, you are sadly very much on your own dealing with AZ, that why Talking Point is so helpful to us all.
Sorry to go on so long.
K

Thank you K - it's comforting at least to know we're not alone, albeit very sad that so many are in this situation. We have never dealt with dementia in the family and I've been so surprised at the lack of NHS support in contrast to experiences with family members with cancer. It's shocking.
The consultant we saw yesterday seems to be backing away from dementia and suggesting that we don't need a diagnosis/should wait until he gets even worse before s diagnosis is made. But to my understanding this impacts on the financial and other support which he might be entitled to, together with any treatment. He hasn't been prescribed any medication other than an antidepressant which he was given several months after his heart attack when his behaviour started to change. Nothing has been offered or suggested since as the GP seems to be putting all his eggs in the dementia basket...
I've been reading this pm and wonder if it's worth asking the GP to make a referral to a neurologist? We saw an old age psychiatrist who quite frankly didn't seem to know what he was talking about! Do you have any experience with neurologists vs psychiatrists?

 

[Beaky144]

Hi my advice would be ask for a spect scan as this is what showed my mum had Frontotemporal dementia. This has affected her behaviours, means she has been sectioned twice and had now affected her memory. The spect scan allows them to see the atrophy and damage to the brain more closely and it was what showed the damage/shrinkage to her fronto and temporal lobes.

My heart goes out to you and if you need any advise I'll be happy to help if I can.

Jo xxx


Sent from my iPhone using Talking Point

 

[Kevinl]

Thank you K - it's comforting at least to know we're not alone, albeit very sad that so many are in this situation. We have never dealt with dementia in the family and I've been so surprised at the lack of NHS support in contrast to experiences with family members with cancer. It's shocking.
The consultant we saw yesterday seems to be backing away from dementia and suggesting that we don't need a diagnosis/should wait until he gets even worse before s diagnosis is made. But to my understanding this impacts on the financial and other support which he might be entitled to, together with any treatment. He hasn't been prescribed any medication other than an antidepressant which he was given several months after his heart attack when his behaviour started to change. Nothing has been offered or suggested since as the GP seems to be putting all his eggs in the dementia basket...
I've been reading this pm and wonder if it's worth asking the GP to make a referral to a neurologist? We saw an old age psychiatrist who quite frankly didn't seem to know what he was talking about! Do you have any experience with neurologists vs psychiatrists?

You're right to say it's shocking and the comparison with cancer care has been made before, but in the case of cancer something can be done most of the time and when it can't then it is seen as a medical issue, remember though that a lot of cancer care like Macmillan and Curie nurses are from a charity not the NHS, although the NHS is very good at dealing with cancer. There is something similar for AZ called Admiral nurses (link below) but there aren't many around Chorley, Manchester and Bootle are probably nearest to you.
As you already know there is some cerebral atrophy then neither a neurologist nor a psychiatrist can do anything about them and I doubt you'd get a referral, the former can't reverse the damage and the latter can't really do anything with the damaged parts either but it's always worth asking.
The second link is to the government website for claiming PIP (Personal Independence Payments) which are replacing the old disability living allowance, you may as well get the ball rolling but it has always in the past been backdated to the date you either started the claim or were diagnosed so I'd use the date when the atrophy was diagnosed rather than hang about for 6 months waiting for a the scan results.
I'm surprised about the time scale, with my wife we went from; doctors (finally admitting something was wrong) to consultant, MRI scan, specialist, SPECT scan, diagnosed, DWP (Department of Works and Pensions) interview and getting a backdated payment for DLA and mobility allowance in under 12 weeks, you must live in the wrong bit of Lancashire, Salford (Lancashire) obviously works better than your bit.
K

http://www.dementiauk.org/what-we-do/admiral-nurses
https://www.gov.uk/pip/how-to-claim

 

[canary]

Im not sure that neurologists know much about dementia.
My husband has been seeing a neurologist for 20 years ever since an accident left him with a traumatic brain injury. In the past few years though he was obviously deteriorating. He was sent for neuropsychologist testing, but he was diagnosed with depression and everyone thought I was making it up when I said what he was like. It has taken another 2 years and a referral to a London specialist in dementia for anyone to admit that there are problems. They are now talking about Frontotemperal Dementia, but say that they will have to see him again in 6months to document deterioration before it can be positively diagnosed.
BTW, there is no way of slowing the progression of FTD like there is with Alzheimers, you can only deal with the symptoms as they arise. I am fully expecting to be on my own once the diagnosis has been made.
Thank goodness for TP

 

[dadneedsanswers]

Hi Jo - thank you so much for this and I'm very sorry to hear about your mum. I think the consultant that we saw on Saturday is referring him for a spect scan - he talked about a 'functional brain scan'. Do you mind if I ask what changes/symptoms your mum had prior to the sectioning? I assume her behaviour and personality has changed drastically? This whole issue started for us when we found out my dad was having an affair (long story!) which couldn't have been more of a shock - it just wasn't him. He's since started to behave inappropriately i.e. watching 'things' on his phone which my mum has found and also says inappropriate things in public or raises his voice, when before he was much more socially aware. The GP acknowledged this was concerning hence made the initial referrals, but the doctors we have seen since don't seem to be taking this into account. I have read about frontotemporal dementia and from a very basic understanding, this type of dementia best explains his symptoms.
Also - did your mum have an MRI before a SPECT scan? My dad's MRI doesn't show any atrophy in this part of the brain (only the cerebellum) and his initial CT scan was normal.

Take care xx

 

[Beaky144]

Hi Shelly,

My mum had subtle changes over a number of years that initially I put down to just an exaggeration of her personality. For example she has never been an over emotional person so when she became even less emotional and unaware of emotional responses to situations I chalked this up to her being her. Or when she started saying things inappropriately in public I explained this away by saying she had always been quite to the point. In reality she has lost her social awareness abilities. This is the key thing I have found with FTD and my mum. All of her symptoms are exaggerations of her personality which made it easier to explain away and harder to spot for me.

Things got worse in Feb 2014 when I came home from work and my mum told me that she could hear someone singing in the street that they loved her. This tied in with her almost getting conned by a man on match.com all seemed odd to me. This quickly escalated to her believing she could hear people outside attempting to burgle us, believed she could hear buglers in the house (they were apparently living in the loft). I wasn't able to cope after she had called the police, got the neighbours in to look in our loft and had gone to a neighbours house to escape our house because she was about to be killed all whilst I was at work. At night she would be frantic and up most of the night looking round the house for burglers. I was at my wits end so went to our GP who said mum was most likely depressed and prescribed some anti depressants. Two days later we called the NHS non emergency number and begged for help. They said that they could refer her to the adult mental health team and she would be seen in about 1 month. I couldn't last 1 day so I said no and they said well we recommend you go to A&E for an emergency mental health referral. We sat in A&E for 10 hours with my mum frantic that the house was being burgled and the people were coming to kill her in the hospital. Eventually we saw a consultant and the tests and community support started. They initially thought it could be schizophrenia or some kind of mental breakdown. They tried a full range of anti psychotic drugs and none made any change. After my mum had left the gas on, walked out the house at night and barricaded herself in the living room in fear for her life they recomended we take her to hospital where she was subsequently sectioned.

I was told that the first CT scan showed nothing, then the MRI scan showed nothing and it was only when they did the SPECT scan they could see significant damage to the frontal and temporal lobes. Turned out that when they looked at the MRI scan again knowing what they knew from the SPECT scan they could see it on the MRI as well. So my advice there is push for the SPECT as that seems to be the way to get a proper view of the active and inactive/dead parts of the brain.

The behaviours that your dad is exhibiting do sound like they can fit in with FTD but it's such a hard disease to diagnose and there are other kinds of dementia such as Lewy Body Dementia that are quite close. The consultant who made my mum's diagnosis had never come across FTD prior to meeting my mum for example!

Push your GP by going in with lists of examples of his behaviour, request the SPECT scan and referral to a memory clinic/dementia service in your area. It is an uphill struggle but you need to get the right diagnosis to get the right care.

Jo xx

 

[kingybell]

Hi!
I wrote a little blog a few months ago and while it may not give you any advice it may be some comfort to know you are not alone in this.
I would insist on some sort of diagnosis as it will help you get the right support

 

[stanleypj]

Im not sure that neurologists know much about dementia.

This would sound ridiculous to anyone who hasn't actually been seen by a neurologist but at least with the two we saw I'd say you are correct.

I suppose another question is how much GPs, some of whom will happily diagnose dementias, know about it?

And if, post diagnosis, you're 'sent away to die' as some have reported on TP, you might be better off without a diagnosis.

 

[Long-Suffering]

Hi Dadneedsanswers.

My dad started showing signs of dementia 2 years ago or more, and his doctor still hasn't made any moves to get a diagnosis. My mum has mental health problems, and it seems that because of that for the first year they didn't believe her when she told them that dad was losing it. I live abroad, and it was only when I came over and went to see the GP that they started taking notice. But it turned out that was all they did.

That was last summer, and although they now accept that dad has dementia, he still doesn't have a diagnosis. I have been emailing the community carer for 6 months and she is moving things forward, but as such an unbelievably slow pace that it is incredibly frustrating. It's taken 6 months to get her out there to visit them, and then get back to me to say that she will talk to the GP. If I don't mail her every step of the way, the whole process stops.

My impression and experience has been that once someone is recognised to have dementia, the medical profession sees them as a waste of time and resources. The attitude is that as dementia is irreversible and the sufferers are generally elderly, then they'd rather spend their time treating younger patients and those who can be cured.

Hopefully, dad will get a diagnosis before the end of the year and then depending on what the diagnosis is we might be able to give him some meds that will slow the progression down. My cousin is a psychiatrist, and he's told me that most dementia patients, though there is no cure, can benefit in some way from the right medication. But that needs a diagnosis!

Sometimes I feel like it's all a waste of time and no one in the medical profession cares.

LS

 

[Daughter-MHD]

You have my every sympathy

Dear DNA

I am brand new to this forum but I have written about this exact issue in my blog mumhasdementia.com - my mum (you've guessed it) has dementia but we had a hell of a time getting a diagnosis. I'm a doctor myself but I found this more of a hinderance than a help. My advice is, if a diagnosis is important to you (and it is more for some than others) keep plugging away, keep on at the GP, ask for second opinions. Don't be the quiet, reasonable one, kick up a fuss. Good luck x

 

[Kevinl]

I'm a doctor myself .... kick up a fuss.

I never thought I'd see that, a doctor telling you to kick up a fuss Generally if you do anything they don't like (as all the signs everywhere tell you) the doctor's will kick you off the books tout suite.
K

 

[kingybell]

I'm

It took me a year of pushing and kicking and screaming.
Mind (the charity)suggested I contacted the gp-who I almost strangled as he was useless.

It's not normal for a young person to get dementia so you keep pushing. We got a mixed diagnosis of ftd and Alzheimer's in dec 2014.
Now in July 2015 they have changed it to Alzheimer's with some vascular.

We needed diagnosis as my mil could no longer work and needed benefits it's helped us get the right ones for her

 

[teddycatcat]

Write out all the behaviours

It does sound as if the consultant has not communicated to you very well. Is there a service for early onset dementia where you are (ie under 65s?) sometimes called working age dementia. Ask the GP for the scan results- is it cerebral, cerebellar or cranial atrophy. I think your consultant was talking about cerebellar atrophy (not cranial as that is bone). Did dad ever drink alcohol heavily? The consultant you saw should be a specialist in dementia (an old age psychiatrist). Ask your GP if he can be referred to neurology services because he is relatively young. They could do a PET CT or at least re look at the MRI. Hope this helps.

 

[Daughter-MHD]

I never thought I'd see that, a doctor telling you to kick up a fuss Generally if you do anything they don't like (as all the signs everywhere tell you) the doctor's will kick you off the books tout suite.
K

It's usually only those who are physically violent or repeatedly verbally aggressive who are asked to register elsewhere and I wasn't suggesting either of those options! I just mean that it is hard to make yourself heard above the thousands of other patients who will be registered with your doctor and sometimes you need to keep phoning, making appointments to discuss the situation etc. Younger onset dementia remains difficult to diagnose and can be mimicked by all sorts of other things - having said that with my doctor hat on I also know how frustrating it is from a patient / carer point of view too.

 

[dadneedsanswers]

Diagnosis!

So this update comes with good and bad news:
The good - we have a diagnosis
The bad - it's FTD. Perhaps with a mix of Alzheimer's, tbc...

After our experience at the memory clinic (as mentioned in the first post), my mum and I decided that in the first instance we wanted to get a second opinion. I researched over the weekend and on Monday my parents saw the GP who agreed and made a referral to a neurologist working at a different local hospital with experience in dementia/brain disorders in younger patients. This was a private referral but the neurologist works with the NHS which we were advised he could later be referred to.

My dad had his appointment this week and was diagnosed with FTD. However, as he performed, unexpectedly, very bad at some tests (e.g. unable to put the hands of a clock to a certain time) the neurologist thinks there might be 'something else' going on. He has referred us to another neurologist in his team with a special interest in this area and in the meantime has suggested that my dad tries Donepezil, which might not work but won't make him worse hence worth a try.

The diagnosis was made based on a summary of my dad's medical/personal history over recent years since we have started to be concerned (which I wrote prior to the appointment at the consultant's request), various tests that he was asked to do at the appointment along with his previous MRI scan. Despite being told by the consultant at the memory clinic that the MRI did not show any atrophy (other than incidental cerebellum atrophy), contrary to what the GP first told us, the neurologist explained that there is significant loss of brain cells at the front and some loss elsewhere. This will all be reviewed in more depth by the second neurologist.

Having this diagnosis is key to my parents in terms of care and financial support and we can now get the ball rolling with this.

I am so pleased that we had the sense to seek a second opinion and would urge anyone else in a similar position to do so. We are by no means well off (especially since my parents have had to stop working) but my mum has since said that the appointment was worth every penny.

S