Sunday, 23 November 2014

What is Dementia with Lewy Bodies

What is Dementia with Lewy Bodies

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Dementia with Lewy bodies (DLB), also known as Lewy body disease, is the second most frequent cause of age-related neurodegenerative dementia. At least 5 percent of people aged 85 and older are thought to suffer from this little known but not uncommon and devastating disease. In the UK approximately 100,000 are thought to suffer from DLB.
There are presently over 700,000 people with dementia in the UK and this number is projected to rise to 1,000,000 by 2021 unless cures are found. There are currently about five million people with dementia in the European Union. These figures represent only patients; caregivers double or treble the number of people whose lives are directly affected by dementia and relations and friends increase these numbers further.
DLB shares mental symptoms, such as confusion and loss of memory, with Alzheimer's disease and motor symptoms, such as gait and slow movement, with Parkinson's disease. For that reason it is often misdiagnosed. Accurate diagnosis is essential for successful treatment of the disease: people with DLB are characteristically highly sensitive to certain drugs which can worsen unpleasant symptoms or even be fatal.
DLB was virtually unknown until a decade ago. Due in large part to a close collaboration between researchers in the UK, Japan and the USA, it is now recognised as a distinct medical condition and not a variant of Alzheimer's or Parkinson's diseases.

Symptoms and Diagnosis

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Each case of dementia with Lewy bodies (DLB) is as individual as the person who suffers from it. Different people will show different combinations of symptoms. At present a diagnosis of DLB can only be confirmed by autopsy but a careful clinical evaluation of the patient and his or her symptoms can, in many cases, form the basis for making a reasonably confident lifetime diagnosis.
The symptoms of DLB can be grouped as central, core, suggestive or supportive [1].
The central symptom of dementia with Lewy bodies is dementia , or progressive mental decline serious enough to interfere with normal daily activities. Significant memory loss may not develop until later. There may also be problems with attention, problem solving and spatial awareness. This can easily be mistaken for Alzheimer's disease or for Parkinson's disease (PD) with dementia.
Core symptoms: Dementia along with the existence of one of the core symptoms listed below can lead to a diagnosis of possible DLB. Two of the core symptoms in addition to dementia and the diagnosis of DLB is probable.
  • Fluctuating states of consciousness

    Typically people with DLB will experience extreme swings from alertness to confusion. These occur unexpectedly over any period of time, from minutes to days. If a person who has been diagnosed with Alzheimer's disease can sometimes play cards or follow a game of cricket, it could be DLB instead.
  • Visual hallucinations

    Two-thirds of patients with DLB experience vivid and recurrent visual hallucinations. For some people these are pleasant visions of animals or small children but others have terrifying, threatening hallucinations, which cause them - and their carers - intense distress.
  • Spontaneous Parkinsonism

    People with DLB experience motor difficulties seen in PD patients such as slow movement (bradykinesia), rigidity and falls but sometimes do not experience the tremor which is characteristic of PD. With DLB there tends to be greater difficulty in walking, balance and facial impassiveness than in PD [2, 3]. In both diseases the patient may suffer from autonomic symptoms such as sudden drop in blood pressure upon standing, difficulty in swallowing , incontinence or constipation [4, 5].
Suggestive symptoms: One or more of these symptoms in addition to one or more core symptoms can lead to a diagnosis of probable DLB. One or more suggestive symptoms without any core symptoms is enough for a diagnosis of possible DLB.
  • Disturbances in REM sleep

    REM sleep is the deep sleep in which people dream. A certain amount of good, undisturbed REM sleep is necessary in order for people to function efficiently. DLB sufferers may talk in their sleep or act out their dreams. Some times this is so marked that the sufferer may fall off the bed.
  • Severe sensitivity to neuroleptic drugs

    Sometimes people with DLB are prescribed neuroleptic (anti-psychotic) drugs to help with their symptoms. This should only be done by someone experienced in the illness as many of these drugs can be extremely harmful or even fatal to people with DLB (see Treatment).
Supportive symptoms: These may assist in a diagnosis of DLB but are not conclusive in themselves.
  • Fainting
  • Falls
  • Problems with swallowing or continence
  • Delusions
  • Depression
  • Other hallucinations ( hearing, smelling or feeling things)
A diagnosis of DLB is less likely if the person has had a stroke or other illness which may have affected motor or mental ability. top

What is Dementia with Lewy Bodies?

Dementia with Lewy Bodies (DLB) is the second most common cause of dementia in older people, affecting approximately 130,000 individuals in the UK together with their carers and relations. It is sometimes also referred to as Lewy body disease or Lewy Body dementia.

What are Lewy bodies?

Lewy bodies are deposits of abnormal proteins inside brain cells and are named after Dr. Friedrich Lewy who first described them under the microscope in 1912. Lewy bodies are associated with the death of brain cells and subsequent deterioration of the brain.

What are the symptoms of DLB?

DLB shares characteristic symptoms of Alzheimer's disease (AD) and Parkinson's disease (PD), with both mental and motor problems. There are problems with memory, concentration and other cognitive abilities similar (but not identical) to AD and difficulties with balance, movement and autonomic functioning (bladder, bowel, blood pressure control) as in PD.

How is it different from AD and PD?

People with DLB characteristically experience dramatic swings in their level of alertness, fluctuating from clarity to confusion, often in a short period of time. Visual hallucinations are common in DLB, typically of people and animals, which are vivid but silent. Although they may have other Parkinsonian symptoms, the tremor associated with PD is not always present. Because DLB, AD and PD share so many symptoms, diagnosis of DLB can be difficult and requires an experienced specialist e.g. in old age psychiatry or neurology. Accurate diagnosis is essential for successful treatment.

What treatment is available?

At present there is no cure for DLB but symptoms can often be alleviated. Research indicates that some AD drugs may be helpful for people with DLB. Parkinson's drugs may help some people with the motor symptoms but can increase confusion in others. Prescribing should generally be started by a doctor with experience of DLB. Some types of drug (antipsychotics) drugs should not be given to people with DLB as they can be extremely harmful. Non-medical interventions such as a daily routine, physical activity where possible and changes to the environment are all helpful in managing daily life. 

Asking for help

I received this on Saturday, and wondered if anyone could possibly help with this.
I do have a forwarding email address, and will pass it on if needed

Hi Ken,

I'm delighted reading your blog as I'm learning so much about the LBD. I'm not directly dealing with it, as I live in Canada, but my uncle, who lives in Colombia, South America is who suffered it, been diagnosed about 4 years ago. His father, my grandpa, suffered from Parkinson's, so at the beginning we thought my uncle had it also. Now, we think that because my uncle was a university professor in chemistry for many decades, the exposure to many chemicals at the labs could' be a factor in developing this disease. However, we don't know for sure. Unfortunately in Colombia the information and resources are even more limited that in NorthAmerica. We are also trying to find if there is a way his brain can be donated for further  studies that in a future can conduct to find a cure for the LBD. If you have any related information  whether regarding the body donation, or the relationship between chemicals and the disease, I would greatly appreciate if you could share it with us. I would also would like to ask your permission for sharing your blog with my relatives, especially those who are taking direct care of my uncle, to help them to understand more the processes and circumstances he is enduring.

Many thanks in advance for your understanding!

Sandra Nathalia Bellina.

Lewy Body Association
Lewy Body,uk 

Saturday, 22 November 2014

Robin Williams RIP

It has been a very sad month, for millions of film goers, who remember the actor Robin Williams, who they thought the world of, due to his many roles in many films, some serious and some hilarious.

He was a man who by all accounts got right into the person he was acting, and I suppose this must have put a lot if pressure on him over the years

Robin was diagnosed as having Lewy Body Dementia, and for reasons known only to himself, sadly took his own life

This is not a very nice illness to live with, and no two people have the same problems.
We are all individuals with individual problems and symptoms.

Robin is one of a host of well known actors and personalities, who had been diagnosed with a neurological disease, such as Motor neurone disease, Parkinson's disease, and Lewy Body Dementia, to name a few.

Many people found ways to cope with their illness, but as many of us living with the illness know, it has its down sides at times, things like depression, which can be hard at times

Many of us lost our jobs through the illness, and this could have hit Robin hard.

I was famous or a Star like Robin, but I was a University College Engineer, but in the end I could not remember how to do my job, something which hit me hard at first, but now it's all gone. 

Robin could have been struggling to remember his words, or could have been in the position where the future, filled him with uncertainty and  fear. 

Many people with Lewy Body Dementia, do not struggle with short term memory problems, but some of us do, as this causes problems, as we feel as if we do not fit in with the model symptoms.

However as I was told recently, people sometimes have extra problems which are mainly cause by mixed dementia's, so they could have say Lewy Body Dementia and also Alzheimer's disease, where people do struggle with short term memory. 

Robin was a super star, and very well loved by millions of people, as well as his loving family, who must be devastated by such a sad loss. 

Many people have openly said that, he would have been a wonderful ambassador to all who have this illness, but this was not to be

Rest in Peace Robin, and God Bless your family 

Friday, 21 November 2014

When Parkinson’s and dementia strike together: Reports suggest Robin Williams suffered this cruel double blow

From the Daily Mail

When Parkinson’s and dementia strike together: Reports suggest Robin Williams suffered this cruel double blow

  • Both Parkinson’s and dementia affects around 100,000 Britons
  • Robin Williams might have been affected by this ghastly disorder
  • He’d suffered from Parkinson’s for three years
It has been reported that Robin Williams may have been affected by Parkinsonian
It has been reported that Robin Williams may have been affected by Parkinsonian
They are two of the most devastating conditions — but the cruel double whammy of both Parkinson’s and dementia affects around 100,000 Britons.
These people have Parkinsonian symptoms — slow movement and problems with gait — as well as confusion, memory loss, hallucinations and delusions associated with dementia. 
They may get Parkinson’s first, then develop dementia a year or more later — known as Parkinson’s dementia. 
Or, if dementia is diagnosed before or at the same time as Parkinson’s symptoms develop, they are said to have ‘dementia with Lewy bodies’ — a type of dementia that shares symptoms with Alzheimer’s disease and Parkinson’s.
Parkinson’s dementia and dementia with Lewy bodies are the same problem — the difference is the order of the symptoms.
It’s been reported that the actor Robin Williams might have been affected by this ghastly disorder when he took his life this summer. 
He’d suffered from Parkinson’s for three years — then last week a leaked pathologist’s report revealed there was ‘diffuse Lewy body dementia’ in his brain.
Lewy bodies are tiny clumps of abnormal proteins produced by the brain when its cells are not working properly. 
They cause memory problems, although these don’t tend to be as severe as with Alzheimer’s — which is linked to a build-up of the protein beta-amyloid.
Another key difference is that Lewy body dementia affects regions of the brain responsible for vision, causing powerful hallucinations, nightmares and spatial-awareness problems.
Studies suggest that up to 80 per cent of people with Parkinson’s will develop Parkinson’s dementia.
Professor David Burn, clinical director of the charity Parkinson’s UK, says: ‘People with Parkinson’s will already have Lewy bodies in the bottom of the brain, which controls movement. 
'In Parkinson’s dementia, the Lewy bodies spread up to areas involved in memory, cognition and vision.
‘For the patient with dementia with Lewy bodies, the problem starts at the top of the brain and spreads down — they tend to go to their doctor with cognitive problems, then develop Parkinson’s or get both simultaneously.’

In your 50s, the illness is more likely to start as Parkinson’s. Dementia with Lewy bodies usually affects people in their 70s, says Ian McKeith, professor of old-age psychiatry at Newcastle University and chairman of the Lewy Body Society
Diagnosis is usually via a brain scan that tests for dopamine, a chemical that is lower in people with Parkinson’s and Lewy body dementia.
Symptoms vary — but it’s a harsh blow for patients, says Professor Burn.
Margaret Kelly would agree. Her husband Reggie, 76, a father-of-three and former supermarket 
manager, was diagnosed with Lewy body dementia in 2009, when he was 71. 

Up to 80 per cent of people with Parkinson’s will develop Parkinson’s dementia
‘Every form of Alzheimer’s is cruel, but I do think this is the cruellest,’ says Margaret, 75, from North-East London.
‘Reggie was such a fit man. Now he’s like a baby. He can’t speak and he’s so confused he doesn’t know me any more.’
Four years before his diagnosis, Reggie couldn’t move his legs away from the sink while washing up. 
Margaret then started noticing changes in his behaviour — he would become quiet and expressionless at times.
A GP diagnosed depression, but antidepressants didn’t help.
Reggie went on to develop a shuffling gait, and in 2006 a neurologist diagnosed Parkinson’s. 
Medication helped control those symptoms but in 2009 Reggie’s behaviour changed dramatically. 
‘He became terribly aggressive,’ says Margaret. 
‘He’d wreck the shed looking for a screwdriver. He’d never admit he couldn’t remember where it was.’
Memory tests showed signs of Lewy body dementia. Around this time, Reggie started having hallucinations, some of which were horrific.
Since his 40s, he’d suffered with nightmares and restless leg syndrome — the urge to move your legs at night. 
It is thought there may be a link between sleep disturbances and Parkinson’s and Lewy bodies.
The cause of Lewy body dementia is largely unknown but the risk increases with age. Both Lewy body dementia and Parkinson’s are slightly more common in men. 
Patients may be prescribed Parkinson’s medication and cholinesterase inhibitors, such as Aricept and Exelon. 
These particularly help with hallucinations, says Professor McKeith. Correct diagnosis is vital, as some Parkinson’s drugs can worsen hallucinations.

A U.S. study found half of patients with Lewy body dementia saw the doctor more than ten times before diagnosis.
Although dementia and Parkinson’s specialists are well aware of Lewy bodies dementia, GPs and the public are less so. 

Motor symptoms of Parkinson’s can mask cognitive issues. 
And hallucinations, delusions and movement problems aren’t usually associated with dementia, as Bridget Hunt discovered after her mother Rose developed Lewy body dementia.
‘We never thought it could be dementia because of the hallucinations,’ says Bridget, 60, of York. Rose started seeing things in her early 70s. 

Other symptoms included struggling to add up, shuffling, a tremor in her arm and spatial-awareness problems.
At 80, she was finally diagnosed with Lewy body dementia. Aricept slowed the disease down, but her increasing disorientation is difficult to witness, says Bridget.

While Rose still lives at home, Reggie moved to a care home in 2011 after a serious fall. Margaret, who is disabled, visits him every week.

‘I desperately want to take him home,’ she says. ‘He’s not the same man I knew but we’ve still got him.’