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Colin’s story: diagnosis

How is DLB diagnosed? Learn from two expert clinicans, and hear Colin’s story of his path to diagnosis.
All dementia diagnoses can only really be made with absolute certainty as pathological diagnoses. And what that means is they can only be made after death when the patient’s brain can be examined under a microscope in the presence of the neuropathological features. So for Alzheimer’s disease, the plaques and tangles and for DLB, the actual inclusion bodies, the Lewy or Lewy bodies can be seen. But we’re pretty good at diagnosing these conditions in life, because we recognise the symptoms. And when our patients die and ultimately go to post-mortem examinations a very, very good correlation and association between the diagnosis we make in life based on clinical features and those pathological diagnoses.
So clinicians are very good at diagnosing DLB on the basis of the characteristic symptoms that we see. Some of the red flags for a diagnosis of dementia with Lewy bodies will be people who have a lot of fluctuations. So some days, they’re very, very good and some days, very sleepy and cognitively not as good. And those fluctuations can be hour to hour, even minute to minute or day to day. So that’s the first. The second is hallucinations. So people often report or if questioned, will admit to having hallucinations. These hallucinations are often fairly typical. They will report seeing people or animals which are silent.
They may recognise, maybe family members who don’t talk to them and the silence seems to be a very characteristic feature of these hallucinations. And unlike other conditions when the hallucinations can be very scary or threatening, people can be a bit bemused and anxious about them but after a while, they may sometimes no longer be threatening and actually somewhat comforting. And the third feature is spontaneous features of Parkinsonism. So they develop features that look along the line of Parkinson’s disease, although there are some slight differences. Well, Colin had this car accident. And initially he was obviously he was very shaken up. And then he became very depressed. So they put him on citalopram.
And after about a month, he started sleepwalking and started hallucinating. So they increased the citalopram. And that was even more of a disaster. So then they tried sleeping tablets. I can’t remember, we’ve tried three different types of psychotic, anti-psychotic sleeping tablets. And one day he fell down the stairs at a friend’s house, outside a friend’s house. And he was really terrible shaken. And we went to the GP, who said straight away, I want him down at the hospital for a head x-ray. By the time we got into the hospital and waited to be x-rayed, and the doctors came, they said he didn’t need a head x-ray, he wasn’t confused.
And I then said, well, this is ridiculous, because our doctor wanted him to have his head x-rayed. So we went to see, that night, we paid to go and see a private neurologist at Bushey Spire. And he examined Colin, and he said, I don’t think he is– I don’t know what he’s got. But he looks like he’s got Parkinsonian symptoms. And I’m going to refer him to the Parkinson clinic in Edgware. So we went there and Dr. Matthews who runs this clinic said she didn’t think he had Parkinson’s. But she thought he might have something called Lewy Body, which we had never heard of. And she said, I’m going to refer to him to Queen Square.
So we initially saw a Parkinson doctor at Queen Square, who then referred him to Dr. Schott. So we have been with– and Dr. Schott did a lumbar puncture and then we got the diagnosis. So I first met Colin and his wife a few years ago when I was actually asked to see them as a referral when they were admitted by one of my colleagues to the ward. He’d had a minor road traffic accident a few years previously, which is probably incidental. But then had become a bit slowed up and a bit apathetic and there was a question about depression.
And then he’d started thrashing out in his sleep, which actually is a red flag as we’ve said before for these sorts of conditions and having a lot of hallucinations. And he was actually given some of the anti-psychotic drugs at that stage by a physician elsewhere, not in this hospital, which made the situation very much worse. And then he was seen by one of my colleagues, who suspected his diagnosis and brought him in. When I saw him on the ward, I elicited many of the classical symptoms that we’ve described and the fluctuations and the hallucinations. And then recommended that we tried the anti acetylcholine receptor drug which we did and really had very dramatic effects, really almost stopped his hallucinations.
And he was much brighter, which was very gratifying. And then I’ve have been seeing him now for a few years in the clinic. And for the most part, I think his function has been very well-maintained. I know that he gets to be a little stowed up a little bit over time, and memory is not as good as it was, but particularly with the support from his wife, I think he’s living a very fulfilling life.

Watch Prof Robert Howard and Dr Jon Schott describe the main features of DLB and the process of diagnosis. We also hear from Colin and Gill about their journey to diagnosis.

The three features that differentiate dementia with Lewy bodies from other forms of dementia are:

  • Fluctuations – day-to-day changes in symptoms are common in dementia, but in DLB fluctuations can happen over a period of hours or minutes.
  • Hallucinations – people with DLB may see things that aren’t there, this might be people or animals, which are often silent.
  • Parkinsonism – motor features including tremor, limb rigidity (stiffness) and slow movement

Dr Schott also mentions some aspects of treatments for dementia with Lewy bodies, particularly the possible adverse effects of anti-psychotic medication, and potential benefit of anti acetylcholine receptor drugs. Later in the week we’ll look in more detail at the symptoms of DLB, and the drug treatments that may be used.

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The Many Faces of Dementia

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