Tuesday, 26 January 2016

New test for Lewy Body dementia

Although Lewy Body dementia (LBD) is the second-most-common degenerative disease after Alzheimer's disease, it's not exactly a household name. It affects more than 1.3 million Americans, is poorly recognized, and diagnosis is often significantly delayed. Patients with LBD simultaneously experience losses in cognitive function, mobility and behavior. The late Robin Williams had this form of dementia as did legendary NHL coach Alger Joseph "Radar" Arbour, which also can cause visual hallucinations and make depression worse. Until now, there has been no way to assess or operationalize many of the cognitive and behavioral symptoms of LBD in clinical practice.
A leading neuroscientist at Florida Atlantic University has developed the "Lewy Body Composite Risk Score" (LBCRS) to quickly and effectively diagnose LBD and Parkinson's disease dementia (PDD) in about three minutes. The LBCRS is a brief rating scale that can be completed by a clinician to assess clinical signs and symptoms highly associated with the pathology of this disease. With this important tool, a clinician can assess whether the patient has bradykinesia, rigidity, postural instability, or rest tremor without having to grade each extremity. This simple, one-page survey provides structured yes/no questions for six non-motor features that are present in patients with LBD, but are much less commonly found in other forms of dementia.
The LBCRS study, "Improving the Clinical Detection of Lewy Body Dementia with the Lewy Body Composite Risk Score," recently published in Alzheimer's & Dementia, the journal of the Alzheimer's Association, involved 256 patients who were compared with the clinical dementia rating and gold standard measures of cognition, motor symptoms, function and behavior. The test was administered in a "real-world" clinic setting with patients who were referred from the community rather than in a research sample. The clinic sample had a mixture of gender, education, comorbidities, behavioral, affective, motor symptoms, and diagnoses. The LBCRS was able to discriminate between Alzheimer's disease and LBD with 96.8 percent accuracy, and provided sensitivity of 90 percent and specificity of 87 percent.
For the study, caregivers completed evaluations to determine the presence and severity of non-cognitive symptoms observed in the patient and their impact on the caregiver. Each patient was administered a 30-minute test battery at the time of the office visit to assess their cognitive status. The LBCRS was completed after all other rating scales were scored and the diagnosis was presented to the patient and family.
"Most patients never receive an evaluation by a neurologist skilled in the diagnosis of Lewy body dementia, and significant delays and misdiagnoses occur in most patients with this disease," said James E. Galvin, M.D., M.P.H., one of the most prominent neuroscientists in the country who developed the LBCRS, and a professor of clinical biomedical science in FAU's Charles E. Schmidt College of Medicine and a professor in FAU's Christine E. Lynn College of Nursing. "This new tool has the potential to provide a clearer, more accurate picture for those patients who are unable to be seen by specialists, hastening the correct diagnosis and reducing the strain and burden placed on patients and caregivers."
Another important aspect of the LBCRS is its ability to improve the sensitivity of diagnosis, thereby reducing the risk of exposure to patients with LBD to medications that can have potentially serious adverse consequences. The survey also increases the potential opportunity to receive appropriate symptomatic therapies in a timely fashion, and lessens the inappropriate exclusion from and inclusion into clinical trials.
"Early detection of Lewy body dementias will be important to enable future interventions at the earliest stages when they are likely to be most effective," said Galvin. "Our study provides evidence-based methodology that will have applications in clinical practice, participation in clinical trials, prevention studies, community surveys, and biomarkers research."
Galvin is one of the leading international experts on LBD, and has been working to improve clinical detections by combining biomarkers including high density EEG, functional and structural MRI, PET scans and CSF biomarkers to characterize and differentiate LBD from healthy aging and other neurodegenerative diseases.
Galvin has led efforts to develop a number of dementia screening tools, including the Quick Dementia Rating System (QDRS), AD8, a brief informant interview to translate research findings to community settings. He has done cross-cultural validation of dementia screening methods in comparison with Gold Standard clinical evaluations and biomarker assays. His team also has developed sophisticated statistical models to explore transition points in clinical, cognitive, functional, behavioral and biological markers of disease in healthy aging, mild cognitive impairment, Alzheimer disease, and Parkinson's disease.

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The above post is reprinted from materials provided by Florida Atlantic UniversityNote: Materials may be edited for content and length.

Should charities be more Accountable

Over the last few days we have heard about charities bombarding people with appeals for more and more money, but I do wonder if they are controlled enough.

Sadly one elderly lady died partly because of all of the appeals she was getting through the post, it was not the total cause, but upsetting enough.

These days you cannot go to the shops without being bombarded by charity workers in the streets asking you to sign up to a direct debit to one charity or another.

Many years ago, if you were collecting for a charity you could hold a collection tin, but you were not allowed to stop people in the streets or shops, nor were you allowed to speak out, that was outlawed. 

These days people collecting money seem to get right in front of you, and shake their tin, just to put more pressure on you to pay up.

However these days I do feel that charities need to be monitored and should be accountable to the paying public.

While we may know generally who the money goes to, we rarely hear about where all if the money goes to, and this sometimes gets people asking questions.

Many charities have vast offices usually in fancy places, which usually cost a lot of money, and this is something I have always thought of as being wrong.

You could have a big office in somewhere which is not too expensive or fancy, but this appears to be something that charities do not think of. 

But I do feel that if they were forced to be open and accountable to the public, they would be forced to use money wisely and not waste it. 

Charities have also been accused of passing on people's names and addresses to other charities, and I feel that is disgusting and unlawful.

Many people these days sponsor one charity or another be pending on their finances at the time. 
But this should be up to them, they should not be forced to put money in every collection pot on the streets. 

I know that charities are being underfunded these days, but if they are not careful, I can see a day when their fundraising will be strictly controlled and monitored by governments, and I feel that would be bad for these organisations and very sad.







Algae linked to neurodegenerative conditions


Algae linked to neurodegenerative conditions similar to Alzheimer's, Parkinson's and motor neurone disease

However experts have urged that the findings do not suggest that common algae can cause dementia 


Alzheimer’s disease experts have sought to calm fears that toxins found in algae around the UK could be causing dementia.
Researchers in the US recently found evidence which suggested that blue-green alga or cyanobacteria - an organism found in water around the world - can produce a toxin linked to the development of a neurodegenerative disease similar to Alzheimer’s.
The mysterious illness among populations in the Pacific Island of Guam which is similar to Parkinson’s, motor neurone disease and Alzheimer’s prompted researchers to attempt to pinpoint a potential environmental cause.
The team at the Institute for EthnoMedicine in Wyoming reached their conclusion by analysing cyanobacteria that lives in marine, brackish and freshwater environments across the world, CBS News reported.
The study published in ‘Proceedings of the Royal Society B’ journal linked the disease in Guam to a neurotoxin called BMAA. As well as algae, the toxin is present in cycad seeds - which Chamorro villagers on the Pacific island use to make flour tortillas.

Researchers also fed vervet monkeys fruit laced with BMAA, and found that the animals had developed neurofibrillary tangles and plaque which are linked to neurodegenerative diseases.

BMAA was also discovered in 12 freshwater lakes and reservoirs across the UK and in seafood from isolated areas of the Mediterranean, sparking fears that the toxin may cause conditions such as Alzheimer's to develop via the foodchain.

Professor Paul Cox, director of the Institute for Ethnomedicine, told the Mail on Sunday: "We know the single biggest risk factor for Alzheimer’s disease is age, and as our population ages, people will get it more. Secondly, we are getting better at diagnosing and finding Alzheimer’s cases.

"We are adding the possibility of a third factor" adding: "BMAA could be a contributory factor in some people."

However, he stressed that the researchers were not asserting that they had caused Alzheimer’s in the monkeys and that the brain plaques present were different to those believed to cause Alzheimer's.

Monday, 25 January 2016

Eye tests and driving

Eye tests and driving

Over the years, people with certain illnesses like dementia have always been restricted when it comes to things like driving.
Giving up driving is one of those subjects which can cause a lot if distress, as families try to restrict those in their care from driving, and that sometimes leads to many arguments within the family.

This sometimes leads to people with these illnesses refusing to give up driving, because they are determined to carry on, and they think that because they have driven for many years, they are safe to carry on. 

To me this should always have been dealt with by consultants or family doctor, and they should have been responsible enough to tell the person that they should stop driving, not leaving it to the families.
They should also have been responsible enough to tell the DVLA that this person is unsafe in their opinion to carry on driving

They also have the power to tell the person to do a driving safety test if they think it's the best way, but they should not continue to hide behind patient confidentially, especially when someone else's safety may be at risk 

The Driving licence and vehicle authority DVLA have a set of guidelines about illnesses and driving, but I do wonder how many people read and understand them, including doctors 

Many years ago I had a trapped nerve and had to wear a neck brace. But it took a nursing sister to point out that I should not be driving because I would not be insured if I had an accident.

 I had in fact been wearing this brace for nearly a year when I was told this. 
The consultant at the hospital had said nothing, neither had our family doctor, it was only pointed out when I was sent to have traction on my neck that this came out.

Over the years I have had intermittent double vision problems, and driving had never been mentioned either until recently when I saw a neurological specialist at an eye hospital. 

This was the second eye hospital I had been to in recent years, yet prior this to this recent specialist, no one had ever said that I should contact the DVLA, which makes me wonder if hospitals are bothering to say anything about the law.

I confess that I had never driven by myself ever since I got my licence back after my diagnosis of early onset Lewy body dementia, and if I did not feel completely fine, I refused to get behind the driving wheel.
However I have decided that enough is enough, and I have returned my driving licence, and given up driving completely.

But over the last few days I heard that people are driving in their late 79-80s and are not being told to get their eyes tested to see if they can see clearly and safely. 

This to me is very wrong if the authorities are saying the young people with early onset dementia should be stopped from driving, yet they are not doing anything about the elderly, who may not react fast enough behind the wheel let alone see clearly.

In this day and age of fee bus passes there is no excuse, although I understand that some people live in the countryside, sometimes where there are few if any local bus services. 

But I do think that the government should do more now to stop people driving. 
At the end if the day, if your family doctor or specialist does not inform you to stop driving, and also tell the DVLA about their worries, they are leaving themselves open to being sued by the patients.

I was once told that if anyone with dementia had an accident while driving, they would be blamed by the insurance companies,  whether they were to blame or not. 

I am not sure if this is legal or correct, but it does worry me that people with this illness may be victimised simply because they have this illness, while others are getting away scot free.

 Other people may well be more dangerous, because of eyesight or reaction problems.