CerafolinNAC- a medical food

FDA approved as a medical food. for the treatment of early memory loss including Alzheimer's disease. This has to do with vitamin B-12 and Folate which we have all heard of. In fact when a doctor does a workup for Dementia one of the reversible causes of dementia is a deficiency in these vitamins. It is treatable, that's why it is considered reversible, clinically it looks a lot like Alzheimer's. This is some of the blood-work the doctor orders when doing a dementia workup. Now people that have enough and normal levels of these vitamins still get Alzheimer's. Taking extra amounts of these vitamins does not stop or cure Alzheimer's. But it does show some promise in providing some cognitive benefit.

Much of the issue of B-12 and folate and cognitive decline has to do with metabolizing homocysteine. elevated levels of this amino acid are seen in many Alzheimer's victims. The reason, cause and effect etc is pretty interesting and a current area of research. I will discuss this more in future posts.

CAREGIVER EMOTIONS

Generally they run the gamut. first of all depending on what stage your family member is in, this will dictate some of the feelings. They tend to vary and have a significant range, sometimes for no apparent reason and sometimes for a very good reason. At the two opposite ends of the spectrum are HOPE and UTTER DESPAIR. They are intense and strong, it is unusual to have a mundane day. There is the psychological issue of coming to terms early on after the diagnosis, and knowing and accepting there is no cure-that can be mentally exhausting as is any grief process. Mental overload and exhaustion leads to anger, sadness, anxious feelings and sometimes physical symptoms and problems, more headaches, irritable bowel, aches and pains, back problems, neck problems, lots of signs of mental stress, the physical complaints are really, the stress on the brain stresses the body, the immune system is weakened etc etc. Throw in the fact that Alzheimer's caregivers don't really have too much time to take care of themselves, not getting enough sleep, not eating right etc etc and you have symptoms compounded.

Then there is the actual physical exhaustion, staying up all night, perhaps trying to balance a full time or (more than full time job), raising your own kids or grandkids, and then caring for a loved one with Alzheimer's is a set-up for overload. The physical exhaustion leads to more anxiety and feelings often of depression, not to mention the fact that when you actually CAN get a few hours of sleep you may be so anxious and frustrated over caring for you loved one and the hopeless and helpless feelings that often pervade, you actually can't shut your brain off and let yourself sleep.

Sometimes it is hard to slow down, throw in all the appointments you have to keep for your loved one, in addition to all the other aspects that go into balancing a modern american family- other relationships suffer.

Does it have to be this way? Where do you draw the line? How do you break the cycle. Are there some happy caregivers filled with hope, maybe even joy? There are, maybe far and few between. Hope and joy often tend to come in snippets. They are easy to miss if you can't slow down a bit. There is no one secret..........

Is Alzheimer's A Mental Illness?

This is more of a political question in many ways than a scientific one. When we speak of a psychiatric disorder we often use the term "functional" as opposed to "medical". Functional essentially means without an organic cause.

We know that AD has a specific course, with specific and non-specific signs and symptoms. It has demonstrated changes in the brain at a microscopic cellular level as well as a macroscopic level when it is advanced. The gross brain of a victim with advanced stages of AD looks different than the gross brain of a person without the disease.

In many psychiatric disorders you can not find the physical changes in the brain. That does not mean they do not exist, it is just that science has not caught up in certain psychiatric disorders.

For a long time when AD was first becoming known in our conscious awareness some twenty or so years ago, the issue of a psychiatric disorder or not was a hotly contested and emotional issue by many advocates and groups. It really stemmed from the fact that we have terrible biases and stigmas associated with mental illness. In fact we still do. We did not want to classify our AD victims with 'those' kind of disorders.

In fact there are many psychiatric disorders where you can find differences in the brain. It is well-established that people suffering with schizophrenia for example, have larger ventricles in the brain compared to people without schizophrenia.

The debate was further compounded by the fact that the Diagnostic and Statistical Manual (DSM) which is still on its 4th edition and goes back to the early 1950's in the first edition, lists Alzheimer's Disease. This manual is sort of the "Bible" of psychiatry developed by committees of experts that have time, and published by the American Psychiatric Association. It lists diagnosis and criteria to make the diagnosis. It has two actual practical purposes besides academic (and political). lawyers and judges love it, in a court of law, because it is in black and white and considered dogmatic, and insurance companies like it because they recognize some diagnosis of which they will actually reimburse for.

Many people do not like that Alzheimer's disease is listed in the DSM.

The fact of the matter is there are many personality changes and behavioral changes in AD. A victim can develop depression or display irritability, aggression, or speak in a delusional fashion (for example become paranoid) and even develop hallucinations- seeing or hearing things that are not real.

These are all signs and symptoms we generally reserve as conventional psychiatric symptoms.

Sadly we really don't treat our mentally ill with much respect or dignity in our 21st century world. The stigma abounds. It is not unlike how society stigmatizes AD, whether we want to admit it or not.

As families we often don't like it when the psychiatrist gets involved in the treatment of our loved one with AD. The psychiatrist is usually associated with the prejudices we have about mental illness.

In the end the question is irrelevant. Mental illness is real and people suffer with it, just like AD. both need to be treated and they both need to be treated with more compassion, no matter what way you look at it.

Euthanasia, Suicide, Death Panels, Dementia, Sir Terry Pratchett

There has been quite a bit of buzz lately about expediting death in the event of Alzheimer's.
There are a few good reasons for this.
1. Consider the fact that Alzheimer's is now a household word. Most people in America and the Western World have heard of the disease. (see earlier blog posts)
2. Then in the United States throw in the current health care debacle. There is not enough money and resources to go around. Everyone needs health care, it is a right, NOT a benefit, hwo is going to pay for all this, the Democrats don't know what they are doing, the republicans don't care, etc etc etc.

It's so political.

Then we keep hearing about 'LIMITED RESOURCES' hmm, we don't have a cure for AD, the treatments are of limited efficacy.

Alzheimer's patients can't speak up for themselves too well. Families are too busy trying to survive and care for their loved ones with the disease.

so what the the head scratching and problem solving lead to?

Well lets go back to the old death with dignity debate. Everyone is scared of getting the disease. There is a little less shame around it. So we have more noteworthy people and families, celebrities talking about it.

Perhaps we should revisit assisted suicide, with limited resources and all.

I had a comment on a post the other day on Huffington Post about this very topic.

If a person with Alzheimer's forgets to eat the food in front of them is it time to die? The original article hinted that no nutrition may be a painless peaceful way to die.

Except it is not.

It sort of hurts to be starving to death even if you have Alzheimer's.

Now I am not being unreasonable here, I do not believe in IV's and insertion of feeding tubes when a person is at the end stages of Alzheimer's disease. But through most of the stages, a person with Alzheimer's still has feelings, right? They may not be able to cognitively express them.

Sometimes I think some of us worry about our pet's feeling more than our elderly. Of course the politically correct term for decades now has been "seniors".

We make fun of the elderly, we say "oh I was having a senior moment" the young and youthful often joke about Alzheimer's- as if they might never grow old.

We are at the point of abolishing the word "retarded" in our vocabulary, it is considered mean and very politically incorrect, we would not dare pick on a special needs child, or a person with a developmental disorder.

Do we pay that same respect, that politically correct carefulness to our elderly? -Maybe.

emerge Sir Terry Pratchett, one of the most famous best selling writers in Great Britain. He has AD. He donated a lot of money to Alzheimer's research. He does not want to live through the stages, and envisions a more romantic way to die.

I suppose that is his choice.

Here is my fear, what if a young cool person, with no medical problems has a living will-really clear nice advance health care directives. They decide that if they get Alzheimer's and the first time they forget to eat, they would like to be put to death. A Facilitated death. Suicide. Perhaps by not putting any food in front of the person anymore. A passive facilitated death. -Or scary thought, a more active facilitated suicide.

Fine good, progressive thinking right? Totally Hip.

Well what happens when that living will, advance directive comes into play, and it just so happens that the person with moderate dementia, that forgot to eat, changes their mind. What if they now want to live? No one will believe them- they are not of sound mind and competence. They can't give informed medical consent. Perhaps the family could override, but what if there is no family or legal guardian. Then the state takes over,

"too bad Alzheimer's victim, you said you wanted to die, we have no resources and you are a drain, it does not matter if you want to live now. We have your advance directive written when you were competent."

Does anyone see or care where this is going?

Who gets to decide? Some judge? A Panel of medical ethicists?

Euthanasia means "painless" death incidentally.

I am not particularly hysterical, but stranger things have happened.

And what about all that "end of life counseling" doctors would be given incentives to provide. Wow. We have not heard much about that lately, but it will be back I am sure. With the limited resources and all.

I wish there was more buzz about cures and effective treatments, rather than killing our old people with AD, couching it in some vogue, elitist, intellectual debate. some cultures actually still honor their elderly, not the norm in the narcissistic youth and beauty driven western world.

DELIRIUM

What is a delirium? It is very different than dementia. A delirium is also known as an acute confusional state or another sometimes used term is encephalopathy. It is a medical emergency in this sense, an untreated delirium can have as high as a 25% mortality rate.

There are many, many causes of delirium, for example toxic or metabolic states. Drug withdrawal can be a common cause of delirium. Most people have heard of the DT's: delirium tremens Alcohol withdrawal causes this. There are metabolic encephalopathies. Delirium is a medical problem, not a functional or psychiatric problem, yet patients with delirium often end up misdiagnosed and on psych units.

Why?

There is bizarre problems and behavior associated with delirium, hallucinations: visual (seeing things) or tactile (feeling things crawling on your skin) are a common problem. Note that in a psychiatric disorder not a auditory (hearing voices) is the most common type of hallucination.

Liver, kidney and thyroid abnormalities are (metabolic) causes, infections, and drugs can be other causes. Basically there is an imbalance and the brains equilibrium with the rest of the body becomes out of whack.

A person with dementia may develop a delirium, for example a untreated urinary tract infection can cause this.

The person with delirium has a fluctuating level of consciousness, they may be in and out of being alert. It may fluctuate over the course of the day, becoming worse at night frequently. The person may be aggressive or violent and lash out.- hence a misdiagnosed psychiatric problem.

A person with delirium has not just an altered fluctuating level of consciousness, somnolence to agitation for example, but they can not attend. The persons attention span is altered.

Attention and level of consciousness are two distinguishing factors of delirium from dementia.

A person with dementia may be disoriented -not know who they are or you are, they may have an impaired memory, not remember things, and that part is the same as delirium.

But someone with dementia really does not have the same alternating level of consciousness, and they generally may not remember a thing, depending on how far the dementia has progressed, but they do have an attention span and they can attend. Example, if you give a demented person a strong of 5-7 numbers to repeat they can say them back, that is attention, not concentration or memory.

Concentration which would be saying the months of the year backwards or of course the classic, spell W O R L D backwards tests concentration. Concentration and memory and orientation are always typically impaired in delirium and dementia.

People with dementia should not have a delirium, but they are more sensitive to developing one. Example a younger person with a urinary tract infection and no dementia is not likely to develop delirium but someone more elderly and with dementia may be more likely.

Mitochondrial dysfunction

Some interesting research although not new exactly, but yet at the cutting edge if you will for Alzheimer's is in the area of Mitochondrial dysfunction. Inside all human cells including cells in the brain and central nervous system, there are various components, for example, the nucleus, mitochondria, endoplasmic reticulum and many other things. In any biology course, even the most basic high school biology courses, one of the first things that is covered is a cell. protein synthesis, genetic coding, and many other things take place inside a cell.
On of the important bodies in the cell is the mitochondria. We are often taught that this is the "powerhouse" of the cell. This is where energy is made basically. The cell need glucose to make energy. The cells take up glucose. The brain needs a lot of glucose. The brain uses a lot of energy. The mitochondria make energy in the form of a chemical called ATP. Its all the basic make-up of life and energy if you will.
Somehow it is seen and felt that fairly early on in Alzheimer's disease, that the mitochondria in cells stop working so well. No one knows exactly why but, it becomes a vicious cycle, perhaps the buildup of amyloid plaque somehow hurts the function of the mitochondria. Bottom line is you get cells not working so well, free radical or oxidative damage and eventually cell death.
It is one more clue one more piece of the puzzle, but something that is defiantly seen in AD.
I watched a short video today of a presentation by Jeffrey Cummings MD out at UCLA. He is one of the biggest names in AD treatment and research over the years.
We will have to see what happens with this area of research, but you will probably be hearing more about it over the next few years.