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What did the Doctor say on diagnosis?

janecayman

Registered User
Dec 31, 2010
10
0
Manchester UK
Hi I am an academic and we are looking at how patients are informed of their diagnosis - the exact words that are used eg:

you have a diagnosis of dementia
you have Alzheimer's
you have memory problems

I am afraid that ...
I can confirm that ...

If you could share your experience that would be very helpful.

Many Thanks

Jane
 

WJG

Registered User
Sep 13, 2020
123
0
It's important to point out that I am in the process of being diagnosed, but following a SPECT scan I had a video call with my psychiatrist who explained that this showed damage to both of my parietal lobes - he then said words to the effect that this, together with the symptoms I have reported, could indicate the early stages of dementia that was possibly Alzheimer's . In turn, he pointed out, this means that I needed further neuropsychological tests before he could offer me a fur diagnosis - and it was possible that even after these tests he still wouldn't know for sure what was going on. He further was keen to point out that he had no way of knowing the progession of the disease.
 

janecayman

Registered User
Dec 31, 2010
10
0
Manchester UK
It's important to point out that I am in the process of being diagnosed, but following a SPECT scan I had a video call with my psychiatrist who explained that this showed damage to both of my parietal lobes - he then said words to the effect that this, together with the symptoms I have reported, could indicate the early stages of dementia that was possibly Alzheimer's . In turn, he pointed out, this means that I needed further neuropsychological tests before he could offer me a fur diagnosis - and it was possible that even after these tests he still wouldn't know for sure what was going on. He further was keen to point out that he had no way of knowing the progession of the disease.
thank you
 

canary

Registered User
Feb 25, 2014
18,843
0
South coast
When mum was diagnosed she was in her own little bubble and had no idea where she was, what the doctor was talking about, or even that he was talking about her. She spent the whole time flirting with the doctor - much to my embarrassment and the doctors amusement, so the doctor spoke mostly to me. He said that the scan showed some areas of shrinkage in the brain, produced a diagram of the brain and talked about the areas that showed the shrinkage. He said that this pattern is what you find with Alzheimers and that this is what mum had.
 

jennifer1967

Registered User
Mar 15, 2020
12,615
0
Southampton
when my husband was diagnosed. he had gone to the memory clinic for the tests. the nurse phoned couple of days afterwards and spoke to me. she said, its as you thought, vascular dementia, there is no treatment referred you to admiral nurses and alz. soc. book in the post about the different stages. that was it and no follow up or anything.
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,167
0
71
Dundee
Both my husband and mother have passed away but I can still clearly recall how we found out about the diagnosis.

Nobody told me about my mum’s diagnosis. She was in hospital with a UTI and I read the notes at the end of her bed. Vascular Dementia was noted there.

My husband went through a long process of diagnosis. At the end of this process we were invited to a meeting at the main hospital where we live. There was a panel of people there - consultant, community psychiatric nurse, hospital social worker and a student or two. The consultant said that the conclusion of the tests, scans and assessments was that my husband had ‘dementia of the Alzheimer’s variety’.
 

jaymor

Volunteer Moderator
Jul 14, 2006
15,134
0
South Staffordshire
Following all blood tests and scans we attended a meeting with my husband’s consultant and we were told that he did have dementia, it was Alzheimers.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,303
0
Kent
The consultant told my husband and me, his scan showed an area of global brain shrinkage. He said he would prescribe some medication. As soon as I saw the medication was Aricept, I knew he had Alzheimer`s dementia. My husband did not take anything in he was of the generation and culture totally in awe of medics and also in his own bubble, either not willing or not able to be 100% present.

Months later he asked me what was wrong with him. I told him he had Alzheimer`s and he set out to find ways to cure himself.
He heard fish oil helped memory so began by eating sardines every day. We also spent a fortune on alternative medicine which he believed in wholeheartedly and I didn`t have the heart to be negative about it.

We took my mother to a neurologist referred by her GP. This was in the early 1990s. He told us my mother had lost all insight and presented with the dame behaviours he had seen in his own mother.

In the late 1960s my father was told he had fluid on the brain and it could be drained. It couldn`t, and he developed dementia as the fluid built up faster than it could be drained.
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,402
0
Nottinghamshire
My dad’s GP delivered the news. He said “I’m very sorry but...” and then sent him to the memory clinic to try and work out which type of dementia he had.

He did ask if we had any questions but we knew what was likely to come as mum and her brother and sister had had dementia too.
 

Old Flopsy

Registered User
Sep 12, 2019
312
0
My husband had the memory test and scan in March 2020.

In May 2020 I got a telephone call explaining the results (he was too deaf to hear the call) and then he got a letter addressed to him 'strictly confidential' as because of covid-19 all face to face appointments had ceased,

It said 'our consultant psychiatrist has reviewed all of the information and the scan and has given a diagnosis of Vascular Dementia, with your long standing alcohol consumption most likely playing a role in this, which I have informed your wife of today. Your wife consented to me requesting your GP to consider the use of antiplatelet therapy. This involves keeping the blood thin and less sticky to help reduce the risk of any further vascular damage.'

The letter then went on to recommend reducing alcohol consumption, but gradually, and also eating healthily etc.
 

Thethirdmrsc

Registered User
Apr 4, 2018
673
0
My husband had a memory test and a brain scan in 2017, and we then got called in to see the consultant in our local surgery and were told “ well the tests have come back and as I thought, you have Alzheimer’s”, and then told that he could no longer hold an HGV licence. We both walked out within 5 minutes shell shocked, and really didn’t talk about it much in the first year.
 

LynneMcV

Volunteer Moderator
May 9, 2012
4,302
0
south-east London
After my husband had undergone a series of physical and mental tests I was asked to attend a consultant's appointment with him. We had proactively sought out a diagnosis for what we suspected was dementia so the consultation simply (and sympathetically) confirmed that our suspicions were correct.

My husband was only 58 at the time and he was classed as having a non-specific dementia at that point. This diagnosis remained on his medical notes, though verbally the consultant(s) would refer to Alzheimer's but with an open mind to Lewy Bodies.

We didn't see much point in going through more stringent tests to find a specific type of dementia because my husband ended up on medications which were suitable for both types anyway.
 

Dimpsy

Registered User
Sep 2, 2019
1,906
0
Mum had a full mornings appointment at the excellent Memory Clinic attached to our closest major hospital. First port of call was a scan and then mum, OH and I met two MH nurses for a friendly chat, (as far as mum was concerned), but it was clearly part of the diagnostic process to put mum at ease before OH and I went with one nurse who asked us many in depth questions about mum, whilst mum was with the other nurse doing the memory test.

We sat in the waiting room for thirty minutes or so, while the consultant and nurses examined the scan, tests etc and then we met the consultant.

Like @canary's mum, (but without the flirting), the consultant included mum in the conversation, but really was talking to OH and I.
He explained how the scan had shown changes which was associated with the onset of Alzheimer's diseases, which was also backed up by the memory test results (which he gave to us to take home) and explained why some parts of the test mum had done well in and the parts where she scored poorly was further proof of dementia and why it was Alzheimer's. He gave his opinion of how many years mum was along the road and what medication was available to slow the progression.
He said mum would be referred to our local memory clinic for advice on the start of the medication, side effects and what to expect and where we would also meet our local Alzheimer's Society representatives, who would give us advice on the services available in our area. We would also be invited along to a Memory Matters course, for the PWD and OH and I as her carers, once a week for six weeks.

The consultant was matter of fact and respectful to mum and us and everything he said would happen, did, and we felt (and still do) cradled and supported from the beginning.
 

cobden 28

Registered User
Dec 15, 2017
133
0
Hi I am an academic and we are looking at how patients are informed of their diagnosis - the exact words that are used eg:

you have a diagnosis of dementia
you have Alzheimer's
you have memory problems

I am afraid that ...
I can confirm that ...

If you could share your experience that would be very helpful.

Many Thanks

Jane
When my late mother-in-law was diagnosed with vascular dementia in the earlyn1990's, she was told by the doctor to her face that it was vascular dementia, but nobody really explained to the rest of the family at the time what this meant. Present at her hospital bedside at the time of diagnosis were my ex's stepdad (MIL's husband), my sister-in-law, SIL's husband as well as myself and my ex.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,457
0
Yorkshire
just wondering why you are asking and what will be done with this information - are you an academic in a medical field
 

MartinWL

Registered User
Jun 12, 2020
2,026
0
65
London
I don't remember when the D word was first used, but the diagnosis came in a letter from a memory clinic. Later we went to see the GP due to my Dad not accepting anything. He said " The diagnosis is the diagnosis", which was an indirect way of saying it would not change.
 

Seaholly

Registered User
Oct 12, 2020
113
0
Bit of a sore topic for me because it wasn't handled especially well and it's hard not to feel let down.
Mum's GP referred her to Memory Clinic, which went well. The nurse was very kind and patient with mum and she asked questions to me, husband and mum all together and then took mum off by herself.
The actual diagnosis came by telephone (it was the start of Lockdown, so it was understandable)
I felt the doctor either hadn't read what was in front of him, or didn't really appreciate what it is like either living with dementia, or caring for someone with dementia.

I didn't expect to have to explain (with mum sitting right next to me) that mum was no longer capable or able to use the telephone and since she was having one of her 'bad' days, there was no way she would take anything in.
He advised me that mum had Alzheimer's and then asked if the news was a surprise.
I said, "Yes, but in all honesty, I wasn't expecting Alzheimer's because it began with her eyesight, so I was worried about PCA or Lewy Bodies".
He said, "It has to be Alzheimer's because it happened so slowly over time. It could be something else, but we'd have to look inside her brain and we can't do that until Post Mortem, obvioulsy!"

There was no offer of a brain scan; no advice on what to do next - just a promise of some leaflets - so we were just left floundering once again :(
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,399
0
High Peak
Nobody told my mum. I'd known for years but she was kind of OK, muddling along, so nothing was done - she hadn't seen a doctor in years. Then she had a fall, ended up in hospital and the dementia suddenly became a whole lot worse. I spent ages trying to explain this to an arrogant consultant but he claimed there was nothing wrong with her. Turned out the conversation she'd had with him had been totally made up by mum, but he was convinced she used to be a GP herself (no!) and both her children were medics too (no!)

The only reason she got a diagnosis at all was because I moved her from hospital to a care home and a DoLS was needed because she kept trying to escape. A temporary one was granted subject to a further scan and subsequent consultant visit - he went to see her at the care home. He phoned me and we talked at length about mum's behaviour now and in the last few years. From that he changed his original diagnosis (vascular dementia, because of the sudden change in mum) to mixed Alzheimers and VD.

There was no follow up, no drugs offered, not even a leaflet. I think the general opinion was that as I'd already moved mum into care, it was all done and dusted. She was just left to deteriorate and die, which she did some 3 years later.
 

WJG

Registered User
Sep 13, 2020
123
0
It's important to point out that I am in the process of being diagnosed, but following a SPECT scan I had a video call with my psychiatrist who explained that this showed damage to both of my parietal lobes - he then said words to the effect that this, together with the symptoms I have reported, could indicate the early stages of dementia that was possibly Alzheimer's . In turn, he pointed out, this means that I needed further neuropsychological tests before he could offer me a fur diagnosis - and it was possible that even after these tests he still wouldn't know for sure what was going on. He further was keen to point out that he had no way of knowing the progession of the disease.
I have now has further psychological tests, which were a mixed bag in terms of results. But I've a,so got to see a Neurologist who talked me through the results of 2 scans ans showed me the scans, before diagnosing MCI. He further commissioned an MRI Scan and a lumbar puncture.
He's now sent me a copy of his letter to my GP. I realise that I'm getting a piecemeal diagnosis. Each scan and test reveals a bit more. But while it was mentioned some time ago that Alzheimers was a possibility (and still isn't confirmed) I was still brought up a bit short to see it in black and white.
Perhaps I need to emphasise that I welcome knowing details of scans. I find it helps to relate the damage to what I am experiencing. Indeed, I'd be happy to have computer files with all relevant data including psychological tests and scans. People seem surprised when I say this, and I've been told that I won't understand images of scans - but having a copy of an ultrasound scan of a foetus is commonplace, so why shouldn't I have one of my brain?
 

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