"Diagnosis" of Alzheimers

[davide]

I have noticed the stories in the news about some public figures such as Terry Pratchett and Glen Campbell, who (very bravely) have talked about being "diagnosed" with Alzheimer's, despite apparently being quite lucid and in the early stages of the condition.

My experience with my late father was that we never got a firm diagnosis, even when his short term memory had become very bad. We had a number of consultations with a community psychiatrist (specialising in older people), who did the MMSE (Mini-mental State Examination) with my father on several occasions and confirmed that this was getting worse. He had various tests, including blood tests and a brain scan, which showed "loss of brain cells" (I forget the technical term) "consistent with his memory loss".

But no diagnosis was offered by the psychiatrist or by his GP. After the last consulation I phoned up the psychiatrist to discuss the results and asked (and it took a lot of courage to ask) "Is it Alzheimer's?" - to which I was told "Yes, probably, though there is never a 100% diagnosis". That is as close as we got to a diagnosis.

Do others get a more firm diagnosis - was our experience atypical?

And, by the way, after this last consultation, I feel that we were left completely unsupported by the NHS. There was no follow-up to see if the condition was worsening, or to offer support or advice. On one occasion I asked his GP for a follow-up appointment with the psychiatrist, but was told that, to control costs, this could only be given if there was a specific change in circumstances which merited it. I had to sort out care arrangements, and the decision eventually to move my father into a care home, on my own. I feel it is awful that, with such a serious condition, patients and their families are just left to fend for themselves with no support from the NHS.

 

[min88cat]

Totally agree with you David. MIL was assessed 3 years ago and her score was 8. When we asked what that meant, he said it was bad.

No meds, no further assessments other than further brain scan when she was admitted last year with pneumonia, where they said there was no change.

No one has said it's Alzheimers to our faces, we have just put two and two together read forums and worked it out for oursleves.

Support is pretty much non existent, and we are struggling as you will see from my post below!

 

[branwen]

I think the problem is that with all dementias the only time a firm diagnosis can be made is post mortem histopathology of brain tissue - it's simply not feasible (or in the best interest of the patient) to biopsy brains when the patient is alive. The risks of doing it vs the benefits are not worth it because there are no effective specific treatments. So doctors tend to go on what symptoms and other health problems are present eg hypertension and TIAs would point to vascular dementia.

 

[davide]

I think the problem is that with all dementias the only time a firm diagnosis can be made is post mortem histopathology of brain tissue - it's simply not feasible (or in the best interest of the patient) to biopsy brains when the patient is alive.

That was my understanding, Branwen - that's why I was surprised to hear people discussing so clearly a "diagnosis" of Alzheimer's at an apparently very early stage. Maybe the message just got simplified or misreported by the media.

 

[BeckyJan]

My husband was given a diagnosis of Alzheimers after a serious of tests but there could only be confirmed with a post mortem. Their evidence was based on the tests and the behavioural details I gave them. He later had a stroke and was only told 'Mixed Dementia' some 12 mths later during a standard review of medication.

We had little support from the Consultant but the Mental Health Team did hold a course for newly diagnosed sufferers and their carers. That was valuable.

I then received some help during an emergency situation when my husband went to an Assessment Unit.

Generally though we felt unsupported compared with some others on this site. So much depends on funding and how committed the Mental Health Teams are to their work and clients.

 

[branwen]

Generally though we felt unsupported compared with some others on this site. So much depends on funding and how committed the Mental Health Teams are to their work and clients.

I'd agree. Both my parents have dementia and I only had one meeting with the various nurses, consultant and CPNs (SW didn't turn up) after they'd been in hospital for 5 weeks, during which time there was no info beyond "They've been watching tv" and the like. I was simply told they had vascular dementia (Dad), Lewy body (mother), needed 24/7 care and to look for an EMI registered care home. No support, very little information, no advice as to where I could get any help or advice, despite the fact that I'd repeatedly told them I had a very difficult relationship with my mother and I suffer from severe depression. The only contact I've had since with any of them was the ward phoning up demanding to know 10days later why I hadn't yet arranged a care home placement.

 

[Nebiroth]

There is no definitive test for Alzheimer's Disease except a direct examination of the brain tissue and that, obviously, can only be done post-mortem.

Thus a diagnosis of Alzheimer's is one of probability and elimination: you eliminate other possible causes which produce similar symptoms by means of tests (such as brain scans and blood tests), if these prove negative and the symptoms and progression are typical, then there is a high probability of Alzheimer's.

But because in each individual is affected in different ways and will progress at a different rate there is always room for doubt.

It is certainly difficult to distinguish the different diseases in the early stages (remembering that "dementia" is just a description of symptoms, not an actual specific disease - just as, for example, one might be described as having a fever. Confusingly some of the diseases do have dementia in their names though!)

Thus an initial diagnosis can be uncertain in the early stages - Alzheimer's, Vascular, etc. This usually becomes clearer as time goes on because the progression tends to be distinguishable between the two.

And, just to muddy the waters further, it's possible to have more than one of the diseases at the same time.

An awful lot of medicine works in the same way - diagnosis by exclusion and probability unless there happens to be a specific, testable identifier. It is for example possible to be 100% certain of a broken bone.

With Alzheimer's, all you can say is - are the symptoms and progression typical of the disease and have other testable conditions been ruled out. If this is the case then the probability of Alzheimer's is high.

The probability is raised further with younger persons such as Terry Pratchett because the possibility of normal aged related problems can be virtually ruled out.

As I say, the only way to be absolutely sure is to look at the brain tissue. However, abnormal and progressive loss of memory and cognitive function typical of Alzheimer's in the absense of other identifiable disease leads to a diagnosis of Alzheimer's until and unless evidence is found that disagrees with this.

 

[sparrow10]

I also have met with a "brick wall" when trying to get help for my mother. Father passed away with Vascular Dementia eight years ago and I have to say we had good support from our GP for him, mainly because mother just could not cope with his sleeplessness, hallucinations and wandering around house. The thing we had not realised at the time, was that Mum was having "short term memory problems" and had done for a while, but dad had covered for her. Her GP thought that a funny turn she had experienced a few years earlier had been a TIA and it seems from this time the memory problems had started, but there was no follow-up medically, other than medication for High Cholesterol readings and aspirin.

Since then I have repeatedly tried to get help from the GP that treated Dad and those that she is now registered with. I have not mentioned that because she was not looking after herself properly and not eating proper meals, we moved her and she now lives with us in a self contained annexe. Her previous Dr. just fobbed me off with "it would not help her to diagnose Alzheimer's or do any memory tests as she is a very anxious lady and to put a name to her condition would make her worse". So we soldiered on for another couple of years, until her house became uncleaned and her clothes rarely changed, she also was not eating proper meals. This was the point when husband and I decided to move her to us. This was two years ago and I have on several occasions since asked her present GP (who is also mine) to call her in under the pretence of some kind of health check-up, but to no avail. It seems that unless Mum decides she needs to see the Dr. regarding her memory, there is little I can do.

I just feel that until the time comes when we are unable manage her problems we are left to our own devices. At the moment things are not too serious, but we are unable to go away without employing a live in carer for her, as she is unhappy to be left on her own and will not consider respite. She needs constant reasurance about everyday living and her daily routine and has completely lost the skills to prepare a meal or even think what to eat.

Reading other stories under this thread I feel that some people seem to get some help albeit fragmented and fought for tooth and nail and others are left to "get on with it". After reading this thread I felt I just had to add my bit regarding the lack of help that seems to be available for carers and sufferers of Dementia.

 

[ooster22]

After reading I feel very fortunate

After reading this thread I feel very fortunate in how my mum's 'diagnosis' was accomplished. Mum showed marked mental problems in very specific areas to start with - for example, suddenly she no longer understood the passage of time or the difference between night and day. I talked to my GP (who is also my mum's doctor) and he arranged that when she went into see him on a routine health matter, he casually suggested he give her a full 'MOT' as she hadn't had one for a while. After physically examining her and gently talking to her, he concluded that she appeared to have early symptoms of dementia and most probably (given the pattern developing) it was vascular dementia. He then arranged for mum to have a home visit from a CPN and following her visit she agreed with the diagnosis of vascular dementia. Both professionals also agreed that mum should not be put through the trauma of a CT scan (something she had always had a phobia about) to provide a definitive diagnosis.

So I was lucky - up to that stage however, shortly after the visit from the CPN, mum became very ill, spent 5 months in hospital (where the nursing care and the SW assigned to mum were brilliant) and has now been in a care/nursing home for 4 weeks. Our GP continues (when approached) to be very supportive, the CPN hasn't been near her for months and SS have yet to appoint a SW for mum now that she is no longer under the care of the SW at the hospital (who does not deal with patients after they have been discharged).

So I make countless phone calls, obsessively check on my mum's health and wellbeing at the Home (so far can't fault the staff) and continue like so many on this forum to bang my head against the wall of the impenetrable fortress that is 'The System'.
All we can do as carers is to keep on keeping on - maybe, if we all, as a group shout loud enough and long enough we can break through those walls. If nothing else a good shout makes me feel better - anyone up for a shout?!

 

[davide]

The probability is raised further with younger persons such as Terry Pratchett because the possibility of normal aged related problems can be virtually ruled out.

Thanks, that was the point I had missed and which explains things more.

 

[davide]

This was two years ago and I have on several occasions since asked her present GP (who is also mine) to call her in under the pretence of some kind of health check-up, but to no avail. It seems that unless Mum decides she needs to see the Dr. regarding her memory, there is little I can do.

That seems surprising - is the surgery one which is used to dealing with older people? I had no problems making an appt for my dad and accompanying him in, and then discussing his "memory problems" with the doctor. We never used the term Alzheimer's or dementia in front of him, but he admitted to having "memory problems" and was not upset by this being discussed.

One thing I did with my dad was to draft a letter to the surgery authorising them to talk to me about his health issues, and got my dad to sign this, which he did not mind doing - is this something you could consider with your mum?

 

[Mariondb]

We had the same problems with the NHS - my MIL was clearly not "right" for some time. Dreadful short term memory, not quite lucid at times, very sleepy and started declining rapidly physically, ongoing UTI's - this is with a history of mini strokes!!. No tests were done - after one stay in hospital she was sent to a rehab unit "to get her mobile" (snowball in hell we thought!). They did nothing, just kept commenting on her "confusion" and asking us why that was.........for crying out loud who are the medics here!!

Finally on her latest revisit to hospital, I spoke to an Occupational Therapist and told her that nobody had suggested, diagnosed or done anything so there was no point asking me questions about her care that I didn't feel appropriate without some form of diagnosis.

That seemed to kick start something and finally they did tests and brain scans and hey presto....the vascular dementia we had believed for some time.

Her GP has the nerve then to say she believed she was borderline a few months ago - however a few months ago when we asked she said she wasn't even on the radar (her words), so she is clearly just covering her backside.......I would love to see her notes!!

I actually believe this is purely down to money........and each Trust passing the buck on to avoid doing tests which will come out of their budget. Trouble is it is the patient and the family who suffers for a NHS we all pay for, and it is the people who have no family to kick butts that I really worry about......

Now nobody will give a "best guess" prognosis because we want to ensure that her care is within her means i.e. we give her the best care her money can afford for the time she has left......

The care of the elderly or the younger people diagnosed with AD or dementia, is about as effective as weather forecasting - yet these vulnerable people should have a considerably better deal from our so-called caring society which is clearly based on pure finance.

 

[Grannie G]

My husband was diagnosed with Alzheimer`s following a Brain Scan which showed global shrinkage.

Following the diagnosis, the GP only monitored his diabetes and blood pressure, the consultant monitored his dementia.
He was checked every six months.
The unit where the consultant was based ran an 8 week course for carers and sufferers, who were then encouraged to attend a monthly support group.
When his behaviour problems became unmanageable, my husband was allocated a CPN , following a stay in an assessment unit. He was prescribed an antipsychotic which was monitored carefully by both CPN and consultant.

As his condition deteriorated my son and I were given a check list of challenging behaviours , by the consultant , which confirmed classic Alzheimer`s.

Now he is in residential care and the CPN and SW have close their files on him as he is no longer presenting challenging behaviour.
He still has a consultant who visits occasionally. The consultant has other patients in the same home so if he has cause to visit one, will check on them all.

My husband has a new GP who monitors his diabetes.

I might be wrong but I feel those who present with challenging behaviour do get more attention and a better service from the NHS.

 

[sparrow10]

That seems surprising - is the surgery one which is used to dealing with older people? I had no problems making an appt for my dad and accompanying him in, and then discussing his "memory problems" with the doctor. We never used the term Alzheimer's or dementia in front of him, but he admitted to having "memory problems" and was not upset by this being discussed.

One thing I did with my dad was to draft a letter to the surgery authorising them to talk to me about his health issues, and got my dad to sign this, which he did not mind doing - is this something you could consider with your mum?

Yes, the surgery is one that has many older people registered with them, we live in an area that has a high ratio of retiree's. The problem is that my mother does not need to see her GP for any general health issues and is in complete denial that she has memory problems and unless she is unwell for a physical reason, is unwilling to seek help from the GP. Her excuse for all her behaviours is "I'm 85 and you will be the same at my age". Many of her friends and ours do not see her confusion etc. as she is able to put on an act "fib" her way out of situations she cannot understand.

I am also able to discuss her medical details with her present and past GP's, but other than deal with the immediate problem we have made the appointment for, they do not take the opportunity to speak to her regarding her confusion, forgetfulness and other dementia related symptoms. My husband and I have even gone so far as to make an appointment to speak to the GP on our own asking for help, but were informed that Mum would have to be the one requesting help. As she is in complete denial, this is not going to happen. So after speaking to her doctor on at least three occasions voicing my concerns I am no further forward.