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!
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!