Has anyone (older) with an ABI/TBI been told that they have dementia?

My husband has an ABI as a result of contracting encephalitis over twenty years ago. Now he is a 'gentleman of a certain age', the doctors seem to have dismissed the encephalitis and some even question whether it ever happened!!

They seem to be trying to 'make him fit' what they think they know most about. They are ignoring the side effects of the ABI and are suggesting that he has dementia, although non of the tests indicate/confirm this. I was asked by the doctor to research Picks disease and then let him know what I thought. My husband doesn't fit the Picks profile. Despite feeding this back to the doctor; he is sticking with his theory/diagnosis - Frontal temporal lobe dementia (FTLD) Isn't this also known as Picks?

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  • Unfortunately, my experience with medics is that many of them can't really core with things outside of the Ladybird Book Of Symptoms, and have an unfortunate tendency to think the disease they're familiar with (or is flavour of the month) is the solution. The fact that many symptoms that should be associated with Disease X aren't present, or contra-indicated ones are, makes no difference whatsoever. Not that they are alone in this, I see it in engineering as well.

    The only thing that I've found any use in such circumstances is to list the diagnostic criteria for Disease X and then ask them to justify it on that basis, including excluding other possibilities, eg "if you don't think it's Blogg's Syndrome, then using its diagnostic criteria, explain why not". Tact and diplomacy are usually necessary. :-) Perhaps putting a record of your discussions in writing... just as a check of your understanding, mind... and along the doctor to confirm may be another option? Sometimes having to put pen to paper, or fingers to keyboard, can have a salutary effect on the writer!

  • Hi nemo,

    Thank you for responding to my post. It would appear that doctors just can't get a handle on the sequelae of ABI or TBI. I absolutely agree with you. Medics can be somewhat blinkered. We received a letter inviting us to attend, what I have since thought to be a dementia clinic. The opening statement of the conversation being 'We are here because of your FTLD.' My response being 'and on what basis have you reached this diagnosis' - red faced medical 'professional' who had not read the notes!! Good job my husband and I are made of stern stuff, as I fear some people may well have walked away from that clinic feeling very low. I have on previous occasions, provided the doctors with links to Headway and the Encephalitis Society, but can only assume that they have not accessed this information. The Psychologist seemed to 'get it' but the rest of them, too hung up with their own agenda. Ironically, I was given a 'carers card' which I should show to medics, so that they will listen - really!!

  • My mother who is in her mid-eighties acquired a brain injury after having extremely low potassium and sodium levels earlier this year. I was told by the consultant that she would not get dementia because of this. However when Mum next saw her GP she talked about sending Mum to a Memory Clinic! It has taken several months to get the consultant to arrange a MRI scan of Mum's brain to establish just what has happened to cause such dramatic memory loss. I know it won't change my Mum's condition but I hope it will enable family and friends to understand what has happened. Mum will probably be referred to a neurologist following the results of the scan. Don't know if this will help, but I thought I would let you know.

  • Hello Q-Jane,

    Thank you for your response to my post. All the best with the memory clinic and the MRI scan. I hope you find the answers and strategy to help your Mother. We have also been through the MRI, SPECT scan and neurology clinics but I'm not quite sure how we ended up at the Dementia clinic. My husband is only in his mid fifties and has had memory issues for over 20 years since his ABI.

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