Alzheimer's Society comment on Amyloid brain scans changing dementia diagnosis and management

This article was sent to me via the Alzheimer's Society.I had never seen it before but hopefully it helps others like me to understand more about these scans

Alzheimer's Society comment on Amyloid brain scans

Alzheimer's Society comment on Amyloid brain scans changing dementia diagnosis and management

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Published 22 July 2015

The use of Amyloid PET scans may change the way that doctors manage and diagnose their patients with dementia, according to research presented at the Alzheimer's Association Conference today (Wednesday 22 July).

The scan can show whether someone with memory problems has deposits of amyloid in their brain, the classic hallmark of Alzheimer's disease.

The study focused on doctors in France, Italy and the US who were treating 618 patients who had been diagnosed with mild cognitive impairment, where Alzheimer's was being considered as a possible cause. All patients were given a diagnosis and management plan by their doctors before undergoing an amyloid PET scan. For half the patients, their doctors received their scan results immediately and for the other half the doctors did not receive this information for a year.

Preliminary results demonstrate that doctors who received their patient's scan results immediately were significantly more likely to alter the patient's diagnosis and management plan, including the prescription of Alzheimer's medication, than the doctors who were not given access to the scan results for a year.

Dr Clare Walton, Alzheimer's Society's Research Manager, said:

'Brain scans can sometimes be used to help with a diagnosis of Alzheimer's disease, but neither standard MRI nor these new amyloid PET scans can tell for sure whether a person's memory problems are caused by the condition.

These amyloid scans may give us more information about the cause of a person's symptoms, but they will still need to be used as part of a battery of diagnostic tests.

'We need to be sure that any diagnostic tests for Alzheimer's disease or otherforms of dementia will benefit the person affected. These results do indicate that extra information provided by the scan can influence the way someone withmemory problems is treated by their doctor, but there currently isn't enough evidence to show that the scan will improve their medical experience or quality of life.

'It is essential that people with dementia are given the appropriate support, information and treatments for their condition.

Any diagnostic process that will bring better management of dementia is to be welcomed. However, we need to wait for the results of further tests of this scan to see whether it can bring that benefit.'

Cancer Drug, Nilotinib, Found To Have Positive Effects On Dementia Patients §

 Cancer Drug, Nilotinib, Found To Have Positive Effects On Dementia Patients

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From penicillin to potato chips, some of mankind’s greatest discoveries were found by accident.  The story behind a drug called nilotinib appears to be no different.

Originally approved as a treatment for leukemia, nilotinib seems to be having notably positive effects on patients with certain types of dementia, particularly Parkinson’s disease with dementia, and Lewy body dementia.

Nilotinib’s efficacy in treating dementia was discovered in a recent pilot test of the drug, after which researcher’s related the outcomes at the Society for Neuroscience meeting in Chicago on Saturday.  According to them, of the 12 patients who were given small doses of nilotinib, movement and mental function improved in 11 of them.  The results of the final participant were inconclusive as they didn’t complete the six month trial.

According to Fernando Pagan, an author of the study and director of the Movement Disorders Program at Georgetown University Medical Center, the positive effects for some of the patients were dramatic.  One man found he no longer needed to use his walker, one woman could once again feed herself, and three patients who were previously nonverbal began speaking again.

Pagan expressed his positive feelings toward the drug, saying, “After 25 years in Parkinson’s disease research, this is the most excited I’ve ever been.”

From here it is Pagan’s desire to confirm the drug’s efficacy in larger studies controlled with a placebo.  If it is proven to protect the brain from the brain cell death that occurs in Parkinson’s, it will be looked at as a possible treatment for other neurodegenerative disorders as well, including Alzheimer’s.

The new face for this campaign is 74-year-old Alan Hoffman who lives in Virginia with his wife Nancy.  First diagnosed with Parkinson’s in 1997, Alan describes his first symptom as having trouble moving his arms.  His ability to walk gradually lessened and his speech began to slur.  Then, a decade after his diagnosis, it began to affect his mind.

He claims his ability to read “dropped off” and that he had “no ability to focus.”  His wife Nancy also noted that “He had more and more difficulty making sense.”  He also became less active and unable to help with household chores.

A few weeks into his nilotinib trial, though, he began to act and feel more like his old self.  According to his wife, he “improved in every way.  He began loading the dishwasher, loading the clothes in the dryer, things he had not done in a long time.”

And it wasn’t all physical.  Hoffman’s scores on cognitive tests improved as well.  He also began making more sense when he talked to his wife and was able to focus and read books again.

Alan Hoffman’s profound breakthrough was thanks to Charbel Moussa, an assistant professor of neurology at Georgetown University and an author of the study.

Moussa had the idea to use the cancer drug specifically for Parkinson’s and Lewy Body dementia.  He knew that in both diseases, toxic proteins build up in certain brain cells and kill them.  He also knew that while nilotinib killed the cancer cells it came into contact with, it made brain cells healthier.

He tested his theory, first on brain cells in a petri dish and then on mice.  It proved to be overwhelmingly effective both times.

And while the prospective efficacy of nilotinib is definitely great news, it may not be wise to put all your hopes into it yet.  For one, it sill needs to be tested in a larger study with a control setting.  Also, if the drug is confirmed to be effective and approved for widespread usage for Parkinson’s, it is still extraordinarily expensive.

But the hope is finally there for those who have been suffering from the devastating effects of the disease.

Now, it is Georgetown’s hope, a treatment for Alzheimer’s will be addressed.

Nurses launch booklet to aid hospital dementia care

Nurses launch booklet to aid hospital dementia care

Good Hope Hospital in Birmingham has launched a new booklet designed to improve care for patients with dementia during their hospital stay.

The user-friendly booklet – About me – can be filled in by the health professional that cares for them.

“People with dementia can become agitated when they are in an unfamiliar environment”

Rachel Martin

It is designed to provide a snapshot of the patient, including their likes and dislikes, daily care needs, food and drink preferences and how they like to be communicated with. 

A “forget-me-not” flower magnet – the national symbol for dementia – is also placed on the patients name board to show staff that they have memory problems and can adjust their care needs accordingly.

The initiative was developed by a range of staff at Heart of England NHS Foundation Trust, including specialist nurses. 

Following the successful pilot at Good Hope Hospital, it will now be rolled out across the trust’s other hospital sites. 

Nurse and dementia practitioner Rachel Martin noted that patients with dementia could become agitated in an unfamiliar environment.

“’About me’ is helping our staff to communicate appropriately with these patients, helping to reduce any feelings of agitation or distress,” she said.

She added that it also provided reassurance to family members that their relative was being cared for in the “best way possible”.

Has the Church if England lost the plot

UI was brought up as a member of the Church of England from the age of 5 in 1952,  and was then in the choir when I was old enough, for over ten years

This was when we had clergy who really wanted to know about their community

At this time our rector used to be on the streets everyday meeting people, and getting to know what was happening in and around the town, and local villiages.

He used to own a car, but preferred to cycle, so that he could stop and speak to all he met, when travelling around the villiages.

Now they work one or two days a week, and are never seen in the street in their dog collars.

But over the last few years I fear that they have lost the plot and have no real idea about life outside.

I fear that the monks in middle age England, were more knowledgable than some of the modern day clergy, and they were more caring.

I say this because most of the regular people are elderly, and these are the people who keep paying towards the churches upkeep.

Yet these people are largely used by the clergy as a way of making money, while their views, problems and illnesses, are largely ignored if they do not fit in with the views of the priest in charge.

Many of these parishioners being elderly, also have memory problems, but here again this is totally  ignored, because the church wants to try to appeal to younger people, yet many of these go once or twice a year if that.

Last Christmas my wife asked me to go to the Christmas service, and I agreed, sadly, but never again.

I was staggered to hear a curate talking about superman and Krypton rather than the bible stories.

Just how superman fits in with the bible, I am left wondering.

So is this how clergy are trained thes days?

Church services and forms of service keep changing, so that the old forms of service hardly ever appear, and this is very confusing to many with memory or brain problems

This is because they remember the old services that they grew up with, not modern day things that are repeated every few moments

So it appears that conventional services have been thrown away, to suite the modern types of service.

Not only this but the churches are always asking for more and more money from the elderly, and then appear to be wasting it, rather than putting it to a good use.

In this day and age there are thousands if people within the UK who need support, and help, yet no one ever seems to mention them, it's as if they do not exist. 

We have thousands of ex military people who are homeless and on the streets at night, begging for money to get food.

That's on top of the other homeless people who are struggling to make ends meet, yet the church is doing very little to support them. 

Yes people like the Mothers Union, and other groups are helping and doing a wonderful job in doing this,  but the church on the whole seems to be ignoring, these people as if they do not exist, a bit like this Tory government.

But I blame the Bishops, people who used to mean something in years gone by, now they sit in the House of Lords etc, and forget about life outside. These people could change things, but do not seem to want to get involved, I guess because many are academics and have no real idea about normal people or the problems they face on a daily basis. 

We are now seeing this mass migration of refugees from Syria, so more money will be needed to feed these extra people in need., but I guess that the church will not get involved. 

I could not believe the fact that our church in our town, is now so ending £11-000 on screens within this very old church, so that everyone can take part in the service. 

I confess that this leaves me wondering how we managed back in the 1967-70s, without all of this technology.

Clergy back then were more thrifty with their funds, and only spent money on things which were desperately needed.

I can understand why churches are now empty, because many people are becoming sick of the way this church is working.

Many like myself have simply given up and will never return again. 

Off for a brain scan

I have been booked in for an EEG brain scan next week, so that they may be able to get to the bottom of my problems.

I as not expecting this for another two months, but whether there has been a cancellation, we do not know.

I guess that this comes from the fact that at one stage I was thought to have had temporal lobe epilepsy. 

Then when I was diagnosed as having Lewy body dementia, I was told that it could not have been epilepsy, so I just do not know who or what to believe 

I also have to get some blood tests done sometime soon, to check if my auto immune system is working properly. 

I confess that I know very little about the auto immune system, so I do not know what it does, or how this could have an effect on my problems.

But at least things seem to be moving properly now and that has to be positive 

This is a very difficult illness to diagnose, as I found out some time ago, when an old friend who had been diagnosed with it ten years ago, has now been rediagnoesd as having memory and thyroid problems.

But I am hoping that this can now all be sorted out now that I am under a consultant at Newcastle.

What is Lewy Body Disease

What Lewy Body Disease Is

On this page:

• Lewy body disease is a kind of dementia
• What are Lewy bodies?
• Symptoms of Lewy body disease
• Treatment
• Why do some people get Lewy body disease?
• For more information

        Lewy body disease is a kind of dementia

Lewy body disease is a kind of dementia. Dementia is a general decline in cognitive abilities (thinking, memory, language, etc.) usually due to degeneration of the brain. There are many kinds of dementia. The most common and best known kind is Alzheimer's disease. Lewy body disease is thought to be the second most common kind of dementia. It causes cognitive problems similar to those seen in Alzheimer's disease and motor problems like those in Parkinson's. Like Alzheimer's disease, Lewy body disease is currently incurable and it gets worse with time. It should be noted that there are some kinds of dementia (for example, those caused by a thyroid problem or a deficiency in vitamin B-12) that can be reversed. That's why it's important to have a full work-up done when dementia is suspected.

Lewy body disease is also referred to as dementia with Lewy bodies, Lewy body dementia, diffuse Lewy body disease, senile dementia of Lewy body type, and Lewy body variant of Alzheimer's disease.

Despite its prevalence, Lewy body disease is not well known. Every year, it seems that Newsweek and other popular magazines run a feature article on the progress made against Alzheimer's disease, and any new information about Alzheimer's is big news. In these articles there's never a mention of Lewy body disease. In our experience many health professionals (physical therapists, nurses, and even some doctors) aren't well informed about Lewy body disease.

        What are Lewy bodies?

In 1912, while Frederick Lewy was examining the brains of people with Parkinson's disease, he discovered irregularities in the cells in the mid-brain region. These abnormal structures (microscopic protein deposits found in deteriorating nerve cells) became known as Lewy bodies. Since that time, the presence of Lewy bodies in the mid-brain has been recognized as a hallmark of Parkinson's disease. In the 1960s, researchers found Lewy bodies in the cortex (the outer layer of gray matter) of the brains of some people who had dementia. Lewy bodies in the cortex are known as cortical Lewy bodies or diffuse Lewy bodies. (That's why Lewy body disease is sometimes called cortical Lewy body disease or diffuse Lewy body disease.) Cortical Lewy bodies were thought to be rare, until the 1980s when improved methodologies showed that Lewy body disease was more common than previously realized.

People with Lewy body disease have Lewy bodies in the mid-brain region (like those with Parkinson's disease) and in the cortex of the brain. It's believed that they usually also have the "plaques and tangles" of the brain that characterize Alzheimer's disease. Conversely, it's believed that many people with Alzheimer's disease also have cortical Lewy bodies. Because of the overlap, it's likely that many people with Lewy body disease are misdiagnosed (at least initially) as having either Parkinson's disease or Alzheimer's disease. A big factor in the misdiagnosis might be that Lewy body disease is relatively unknown.

       Symptoms of Lewy body disease

People with Lewy body disease have cognitive problems (problems with thinking, memory, language, etc.) similar to those that occur in Alzheimer's disease. Therefore, it can be hard to distinguish the two. Some doctors think there are three distinguishing features and the presence of two of them makes the diagnosis of Lewy body disease probable:

• Motor problems typical of Parkinson's disease but usually not so severe as to warrant a diagnosis of Parkinson's. Of these problems, an impairment in walking (a shuffling gait) might be the most common one. Also common would be muscle stiffness and a tendency to fall. Tremor would be less common.
• Fluctuations in cognitive function with varying levels of alertness and attention. Periods of being alert and coherent alternate with periods of being confused and unresponsive to questions.
• Visual hallucinations, usually occurring early on. Delusions may be common too.

It's possible that people with Lewy body disease are better able to form new memories than those with Alzheimer's disease. Compared with Alzheimer's, Lewy body disease may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom too.

      Treatment

Right now, doctors prescribe drugs to treat four major features found in Lewy body disease (also see the medication section of our Information page):

• Cognitive problems. Usually, a drug like Aricept is prescribed. This is the same drug that is commonly prescribed for Alzheimer's disease. In some people, it seems to slow the progression of the disease.
• Motor problems. Levodopa/carbidopa (Sinemet) is frequently prescribed to deal with the motor problems. This medication can worsen hallucinations, though.
• Hallucinations. An antipsychotic medication, such as Zyprexa, might be prescribed. This kind of medication can worsen motor problems, though. Also note the FDA warning.
• Depression. In cases of depression, an antidepressant, such as Zoloft or Prozac, might be prescribed.

    Why do some people get Lewy body disease?

No one knows.

Types of dementia

Taken from Alzheimer's Net

A few decades ago, only a few medical specialists would have heard of Alzheimer’s disease. “Senility” was considered inevitable for anyone who lived long enough. But as understanding of the brain has grown, science has been able to identify and differentiate many causes of dementia. Alzheimer’s is the most common type of dementia, but other brain disorders can and do frequently cause dementia.

These types of dementia often present themselves with very similar symptoms. Even trained physicians may have a trouble determining for certain which type of dementia a patient has, and some people experience multiple types of dementia concurrently, which is called “mixed dementia.” That said, newly acquired knowledge and technologies are allowing doctors to diagnose and distinguish different types of dementias better than ever before.

Here are the four most prevalent forms of dementia.

Alzheimer’s Disease

Alzheimer’s disease is by far the most well-known and common type of dementia.

Common symptoms:

·         Memory loss

·         Confusion

·         Difficulty communicating

·         Anxiousness

·         Paranoia

Cause: The mechanisms behind Alzheimer’s disease aren’t well understood and there are competing hypothesis, but the most distinguishing feature of Alzheimer’s disease is the buildup of amyloid plaques and tau tangles in the brain. It’s widely believed that these brain changes are behind the disease.

Treatments or therapies: There are many therapies, both pharmaceutical and non-chemical which can temporarily increase functioning and improve the spirits of the person with Alzheimer’s disease, but no treatment has proven to be effective. The Alzheimer’s Association says, “At this time there is no treatment to cure, delay or stop the progression of Alzheimer’s disease.”

The U.S. government has made Alzheimer’s research a high priority and set the optimistic goal of finding a cure by 2025. Vigorous research continues and numerous possible treatments are being investigated.

Vascular Dementia

Vascular dementia is also known as “multi-infarct dementia” or “post-stroke dementia” and is the second most common cause of dementia.

Main symptoms:

·         Memory loss

·         Impaired judgment

·         Decrease ability to plan

·         Loss of motivation

Cause: Bleeding within the brain from a stroke cause brain damage.

Treatments or therapies: Vascular dementia cannot be cured, but people who have the ailment are treated to prevent further brain injury from the underlying cause of the ailment. Like Alzheimer’s disease, numerous medication and therapies may be used to help manage the symptoms.

Lewy Body Dementia

Lewy body dementia is the third most common cause of dementia, and is also called “cortical Lewy body disease” or “diffuse Lewy body disease.”

Main symptoms:

·         Sleep problems

·         Memory loss

·         Hallucinations

·         Frequent swings in alertness

Cause: Lewy bodies abnormal proteins that somehow appear in nerve cells and impair functioning.

Treatments or therapies: There is no known treatment to reverse Lewy body dementia or address its underlying cellular cause, but as with Alzheimer’s and other the other main types of dementia, a wide array of therapies and treatment are used to improve the patient’s quality of live and alleviate symptoms.

Frontotemporal Dementia

Frontotemporal dementia is fairly rare, but believed to be the fourth most common type of dementia. Unlike the types of dementia discussed previously, frontotemporal dementia is marked more by behavioral and emotional changes than by cognitive impairment. In fact, memory is preserved in people with frontotemporal dementia.

Main symptoms:

·         Decreased inhibition (frequently leading to inappropriate behavior)

·         Apathy and loss of motivation

·         Decreased empathy

·         Repetitive of compulsive behaviors

·         Anxiety and depression

Cause: Frontotemporal dementia occurs when the frontal or temporal lobes of the brain are damaged or shrink.

Treatments or therapies: Frontotemporal dementia cannot be cured or reversed, but doctors will use medicines to treat uncomfortable or problematic symptoms.

Other Causes of Dementia

Just about any condition that causes damage to the brain or nerve cells can cause dementia. For example, people with Parkinson’s disease will often exhibit dementia in the later stages of their illness. Huntington’s disease, Creutzfeldt-Jacob disease and alcoholism can all lead to (currently) irreversible cognitive impairment