Lewy Body Dementia - what I have learnt - please share what you know about LBD.

[Twin2]

There are a lot of posts that mention Lewy Body Dementia, but I would like to start a new post as my Mum has been diagnosed with LBD (along with probably Alzheimer's and Vascular Dementia) and I am trying to find out as much as I can about other people's experiences.

We fortunately had a very good diagnosis from the first visit to a Community Pschyciatric Nurse a year ago. My mum was 87 and lived independently but had required a lot support with things like appointments and shopping over the previous year. The diagnosis enlightened us because it seemed to explain all the changes in her behaviour over the preceding years: deteriorating handwriting, struggling to write cheques (numbers) and deal with money, smelling gas (twice her gas service was cut after an emergency call), never ringing me (trouble with numbers), talking about seeing people/a women in black with babies/a meeting in the front room (hallucinations related to LBD), being asleep on the sofa in the afternoon and still in nightclothes (hallucinations scaring her and keeping her awake at night so sleeping in the day), missing appointments and birthdays (trouble with dates and times), not taking her medications (struggling with time of day and numbers)m etc. We also came to realise that perhaps her hearing was OK but she was using poor hearing as an excuse for forgetting things or avoiding things (because she "did not hear us").

The weekend after the CPN appointment I was away and got a call from my sister to say neighbours were worried about my mum as she was talking about people that werent there (she thought someone was in her garage and was trying to steal things). The ambulance was called because they thought my mum might have had a fall so hse was admitted to hospital. My mum had gone in to an assessment ward but we decided to fight to get my mum admitted to get a proper diagnosis of her dementia - hence CT scans were undertaken and the diagnosis was for all three types of dementia.

As my sister and I both lived a long way from my mum, my sister works long hours and I have a young family, we decided to find a residential home for my mum. A year later she is still there and it seems like the best solution. It is a really nice place, a four year old building, and lovely country views. Of course it is not the same as my mum being at home and having independence, but we have peace of mind that she is safe and is not socially isolated like she was in her home.

So, there are lots of things I would really welcome your feedback and experiences on - anything you would like to post about any or all of the following would be great:

- Medication: my mum has Quetiapine and was first given this in hospital at my sister's request because of her distress at her hallucinations. As Mum's hallucinations have just got worse again, the doctor has decided to up her dose from 0.5 tablet am and pm to 1.0 tablet am and pm.
What medication is usually diagnosed for LBD?

- Progression of LBD: my mum seems to have had step change in hallucinations ie increased hallucinations. Do these come and go or get progressively worse in your experience?

- Knowledge of care home staff about LBD: I am not sure the staff really understand the treatement of LBD although the home has a specialist dementia unit. Any recommendations of books or sites that I could refer them to?

- Treatment of LBD: is there any treatment you have found successful for symptoms of LBD?

I really welcome anything you have to say! Thanks!

 

[juniepoonie]

hi ya I don't have anything that would help you but the consultant psychiatrist that my BIL is under , and she she top in the field of dementia an related illnesses told us that a diagnosis of LBD can only be made on post mortum. she said all these deseases are so closely related. How did they come to that conclusion. I know that with mri that can give indications of VD an what part of brain is affected but maybe you have more info. juniepoonie

 

[nicoise]

Dear Twin2,

My mum had a diagnosis of LBD following a few years of Parkinson's Disease - so her progression to dementia with the appropriate symptoms meant that diagnosis was probably correct.

This was confirmed post mortem, although there were also signs that she had had TIAs, which we suspected through unexplained falls and confusions at those times, and which brought their own effects with different symptoms. Additionally, there weren't actually that many lewy bodies found, despite her very clear PD and LBD.

My mum did have hallucinations, but they weren't present very often, and didn't upset her unduly. Thus she had no medications for hallucinations - but I understand that quetiapine is the anti-psychotic of choice for someone with a diagnosis of LBD, but has to be used with caution with PD. As always, what suits one person doesn't necessarily suit another with the same diagnosis, nor does it always address the issue it is intended to, and can worsen the symptom it is trying to treat.

Mum was prescribed Exelon (Rivastigmine) patches (the tablets didn't suit her), which is often used in LBD, and which she found beneficial in reducing the "fogginess", in her words.

My mum didn't stay in a care home very long, so I can't comment on that. The carers she did have at home seemed to understand the peculiarities of LBD versus AD - that her memory was pretty good, that she was lucid more than not, that her abilities fluctuated, that she had good times and bad times, and flagged up when she seemed to be having a particularly challenging time.

As always, even the same diagnosis has a lot of variation from one person to another...

I'm sure you have done a fair bit of research, but this link is quite informative:

http://www.lbda.org/content/caregiver-faq

 

[SussexDave]

LBD and hallucinations

There are a lot of posts that mention Lewy Body Dementia, but I would like to start a new post as my Mum has been diagnosed with LBD (along with probably Alzheimer's and Vascular Dementia) and I am trying to find out as much as I can about other people's experiences.

We fortunately had a very good diagnosis from the first visit to a Community Pschyciatric Nurse a year ago. My mum was 87 and lived independently but had required a lot support with things like appointments and shopping over the previous year. The diagnosis enlightened us because it seemed to explain all the changes in her behaviour over the preceding years: deteriorating handwriting, struggling to write cheques (numbers) and deal with money, smelling gas (twice her gas service was cut after an emergency call), never ringing me (trouble with numbers), talking about seeing people/a women in black with babies/a meeting in the front room (hallucinations related to LBD), being asleep on the sofa in the afternoon and still in nightclothes (hallucinations scaring her and keeping her awake at night so sleeping in the day), missing appointments and birthdays (trouble with dates and times), not taking her medications (struggling with time of day and numbers)m etc. We also came to realise that perhaps her hearing was OK but she was using poor hearing as an excuse for forgetting things or avoiding things (because she "did not hear us").

The weekend after the CPN appointment I was away and got a call from my sister to say neighbours were worried about my mum as she was talking about people that werent there (she thought someone was in her garage and was trying to steal things). The ambulance was called because they thought my mum might have had a fall so hse was admitted to hospital. My mum had gone in to an assessment ward but we decided to fight to get my mum admitted to get a proper diagnosis of her dementia - hence CT scans were undertaken and the diagnosis was for all three types of dementia.

As my sister and I both lived a long way from my mum, my sister works long hours and I have a young family, we decided to find a residential home for my mum. A year later she is still there and it seems like the best solution. It is a really nice place, a four year old building, and lovely country views. Of course it is not the same as my mum being at home and having independence, but we have peace of mind that she is safe and is not socially isolated like she was in her home.

So, there are lots of things I would really welcome your feedback and experiences on - anything you would like to post about any or all of the following would be great:

- Medication: my mum has Quetiapine and was first given this in hospital at my sister's request because of her distress at her hallucinations. As Mum's hallucinations have just got worse again, the doctor has decided to up her dose from 0.5 tablet am and pm to 1.0 tablet am and pm.
What medication is usually diagnosed for LBD?

- Progression of LBD: my mum seems to have had step change in hallucinations ie increased hallucinations. Do these come and go or get progressively worse in your experience?

- Knowledge of care home staff about LBD: I am not sure the staff really understand the treatement of LBD although the home has a specialist dementia unit. Any recommendations of books or sites that I could refer them to?

- Treatment of LBD: is there any treatment you have found successful for symptoms of LBD?

I really welcome anything you have to say! Thanks!

Hi twin2,

My mother also has a diagnosis of LBD based on her symptoms which are very similar to those you describe with your mum.

Mum was at the stage you mention about 2 years ago, at the time her hallucinations were so severe that anti-psychotics were necessary. After about 8 weeks we were able to stop the anti-psychotics but rivastigmine (Exelon) was continued.

Mum still has a few hallucinations almost of which are aural. The voices seem to reflect underlying anxieties and appear to be mum's internal conversations, e.g. we had a period when mum would say that voices were telling her to avoid someone who had been a longtime friend and that this former friend was a terrible person. The hallucination appeared to be a manifestation of her thoughts concerning this person. Perhaps the kind of though we all have from time to time but don't verbalise or imagine as coming from outside our head.

It is extremely difficult, demanding and time-consuming but I have had much success in dealing with the hallucinations by addressing the underlying anxiety. Removal of the stimulus or getting someone mum trusts to act as reassurance can do wonders. In addition to psychological problems the stimulus may be physiological e.g. urinary tract infections may bring on an increase in the frequency of hallucinations. If mum starts worrying about hostile voices I make an effort to determine the concern and reassure her that I am there to make sure that no-one can get to her. Hallucinations are now much rarer and represent no more than an occasional slight irritant.

Do you think the carers might be able to do this.

Mum's psycho-geriatrician also advised me that hallucinations may decrease over time.

I hope you find my comments helpful and that things improve for you

Dave