The reasons why I think Ma has Lewy Body Dementia

In the beginning I was convinced Ma had delirium from the three anaesthetics she’d had within 5 months.  The geriatrician said that Ma didn’t have dementia, just delirium.  She improved but had recurring delusional episodes where she was a danger to herself. She didn’t know where her bedroom or the toilet were, she kept asking to go home; she tried taking her wheely walker down the stairs. This continued until I was forced to place her into the hospital’s medical assessment unit in order to get to the bottom of what was really wrong with her.

So after a battery of tests and 10 days in hospital, visits by various geriatricians, there is still no diagnosis for Ma’s ‘issues’.  Dementia doesn’t seem to come easily off the tongue of doctors or geriatricians… it’s inferred but never named.  I even had one geriatrician tell me that I needed a formal diagnosis in order to access more services, but even he couldn’t diagnose Ma.  Another told me he had never seen anything like Ma’s symptoms and that he just didn’t know.  I don’t profess by any means to be any type of expert on dementia or on medical matters.  I’m just a daughter who is searching for answers to explain what is happening to my Ma.

I got my first clues on what might be wrong with Ma when I had to ring the National Dementia Hotline  for help during one of Ma’s delusional episodes.  They mentioned that it sounded like a specific type of dementia.  When I was setting up in-house respite for Ma, the coordinator mentioned that Ma could have Lewy Body Dementia.  Over the past few weeks I’ve been undertaking an online course on Understanding Dementia through the University of Tasmania.  (It’s a free course available online and most invaluable to anyone that wants a better insight into this insidious disease.)

Lewy Body Dementia (DLB) was discussed and I did further research (Alzheimer’s Society).  What I found led me to believe I have found the answer to Ma’s problems.  The reasons why I’m convinced Ma has Lewy Body Dementia are as follows:

  1. Visual hallucinations occur in most people with DLB, and can be distressing.  These are often people or animals, and are experienced as detailed and convincing.

    Ma is often convinced there are people around her that I can’t see.  Sometimes adults, sometimes children, sometimes animals.  Just last night she was convinced somebody was in her bed and then in the chair in her room.  When I think back, Ma has been seeing ‘white birds’ and a man climbing up a palm tree for a few years.  When she was in hospital there were multiple animals residing with her.

  2. Hallucinations and visual difficulties partly explain why many people with DLB have delusions (thinking things that are not true).  Someone may believe they are being persecuted, that there are strangers living in the house.

    Yes indeed, Ma is constantly under the impression that there are other people in the house.  She even wants me to cook extra for them!  When really upset I get accused of stealing her handbag and her money.

  3. Problems with attention and alertness.  These can fluctuate widely over the course of the day, by the hour or even a few minutes.

    Sometimes Ma is so ‘with it’ it’s scary!  There was a recent article in the paper about an ICE user eating their toes.  After she had eaten cake which put powder on her nose I made a remark that she looked like a drug user.  Without missing a beat she told me: “well at least I’m not eating my toes!”.  Yet five minutes later she couldn’t find her way to the toilet.

  4. Difficulties judging distances and perceiving objects in three dimensions.

    Ma is often convinced that doors have been closed in front of her and that she has been shut in.  She will go and sit somewhere else as she is convinced the door to her bedroom is shut.

  5. Difficulties with planning and organising

    Ma hasn’t been able to do this for awhile now.  Just getting her to answer yes or no to a question is a major undertaking.  If I ask her to ring the doctor or anybody else she can’t do it…. although she did manage to ring 000 when she was having a delusional episode!

  6. Up to two thirds of people with DLB have movement problems when the condition is diagnosed, and this proportion increases as it progresses.  These symptoms are those of Parkinson’s disease, and include slowness and rigidity of movement with a blank facial expression. Walking is often stooped and shuffling, with problems balancing. Trembling of the limbs is also sometimes seen.

    This is a hard one as Ma walks on a wheely walker and her gait is already bad and she suffers chronic pain from her arthritis.  She is certainly having increasing difficulty pulling herself up the stairs but she is also in more pain…

  7. Sleep disorders are common.  The person may fall asleep very easily by day, but have restless, disturbed nights.

    Again, this is a hard one as Ma’s sleep patterns haven’t been good for a long while.  I will see her fall asleep sitting up with her head in her lap.  Even when I have her out and we’re waiting she will sometimes nod off.  Sometimes she’ll be very hyper during the night.

Information about Lewy Body Dementia (DLB)

  • Lewy Body dementia gets its name from the characteristic pathological change called a Lewy Body. These deposits cause damage to, and the eventual death of, nerve cells in the brain.
  • Lewy Bodies are also a characteristic feature of Parkinsons’ disease.
  • Dementia with Lewy bodies develops slowly and tends to progress gradually.
  • Unlike Alzheimer’s disease, in the early stages of dementia with Lewy bodies the person’s attention and alertness often vary widely from day to day, or even during the course of a single day.
  • DLB can be difficult to diagnose.
  • Diagnosis of DLB is largely based on the symptoms – particularly fluctuating attention or alertness, persistent detailed visual hallucinations, and movement problems associated with Parkinson’s disease.
  • A more specialised brain scan can be carried out. This can confirm a diagnosis of DLB if it shows reduced density of a particular type of cells (dopamine nerve cells) at the base of the brain.
  • A person with DLB will benefit from individualised and meaningful occupation (eg tasks, hobbies), social interaction, reminiscence or life story work and strategies to cope with memory loss and visual hallucinations.

    This is so the case with Ma.  The less social interaction she has the worse she gets.  I can’t leave her for more then an hour before her mental state starts to deteriorate ie. hallucinations start.  Reading and listening to the radio also add to her comfort.

Dealing with hallucinations or delusions

  • If someone is having hallucinations or delusions, in most cases it is unhelpful to try to convince them that there is nothing there, or that what they believe is untrue. What the person is experiencing is real to them at the time. Instead, carers can offer reassurance that they are there to support the person, and perhaps try distracting them.

    I have used distraction on a number of occasions ie. drawing her attention to the kitties or what’s on the radio; has she read a certain article…

  • As in other dementias, behaviours that challenge (eg agitation, aggression) in a person with DLB should be viewed as a form of communication – a sign of an unmet need. Approaches tailored to the individual should try to identify and meet this need.  The underlying cause may be a medical condition such as pain or the side effects of drugs. Or the behaviour might reflect frustration, fear or boredom. To manage these, carers should look for specific triggers and make appropriate changes in the person’s environment or care.  Aromatherapy, massage or talking therapies may also help.

    Triggers!  Yep, I’m beginning to know these.  For any ramped up delusional episode Ma experiences, I can always find a trigger (see my previous post on Triggers).

So, does she or doesn’t she?  The only way there will ever be a positive diagnosis is by autopsy and she isn’t ready for that yet!


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