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The Layperson’s Guide to Medications and Vitamins Relating to Dementias and Alzheimer’s Disease

This post will be a comprehensive list – in one place – of the prescription medications and vitamins that may be prescribed for our loved ones suffering from dementias and Alzheimer’s Disease.

My main purpose in doing this is so that caregivers, as medical advocates for our loved ones, have the information needed about the common medications and vitamins used to treat the symptoms of these diseases. 

Currently there is a lot of information on the internet about these, but it’s so scattered and oftentimes so clinically-written that it’s impossible to pull it all together and make wise decisions as to accepting or rejecting medication proposals from primary care physicians and psychiatrists.

And the preceding paragraph has some information caregivers need to know, exercise, and require for their loved ones.

First, both a primary care physician and a psychiatrist need to be involved in medical care for our loved ones. One of the first requests that should be made to the primary care physician after a dementias and/or Alzheimer Disease diagnoses should be a referral to a geriatric psychiatrist.

The reason caregivers need to do this is because geriatric psychiatrists specialize in treating elderly patients and they also have access to the latest research in the treatment of the symptoms of dementias and Alzheimer’s Disease.

Primary care physicians are not specialists. This includes internists. They know a little bit about a lot of things, which is exactly what they were trained for (and that’s not a bad thing), but they don’t have the time nor the resources to be experts in any one thing.

Therefore, a geriatric psychiatrist is an absolute necessity to ensure our loved ones get the best care possible to treat the symptoms of these diseases.

Second, you have the right to refuse medication. For example, one of the medications that Mom’s primary care physician wanted to give her as the Lewy Body dementia symptoms worsened was Abilify. No doubt you’ve all seen the commercials touting Abilify as a “booster” for use with anti-depressants to relieve chronic depression.

This is an “off-label” use of the drug. So is prescribing it for our loved ones with dementias and Alzheimer’s Disease (a lot of the mood and psychosis-managing drugs prescribed for people suffering from dementias and Alzheimer’s Disease are “off-label” uses of those drugs).

I did the homework on it before I filled the prescription. Ability was created to treat schizophrenia. That would have probably been okay, but then I saw the warning that “ABILIFY (aripiprazole) is not approved for the treatment of people with dementia-related psychosis.”

In addition, by then I knew Mom also had Lewy Body dementia in addition to vascular dementia and Alzheimer’s Disease and I knew about the increased neuroleptic sensitivity associated with Lewy Body dementia, so I didn’t fill the prescription.

Prescriptions Dementia Alzheimer's DiseaseThe first category of prescription medications is the cognitive enhancers. These drugs are designed to maintain mental health and may improve memory, awareness and the ability of our loved ones to go about their daily activities by boosting the function of existing neurotransmitters involved in memory and judgment in the brain. They will not reverse nor stop the neurological course of the diseases. They are:

  • Aricept – Approved for all stages of dementias and Alzheimer’s Disease, but most effective in mild to moderate stages
  • Razadyne – Mild to moderate stages of dementias and Alzheimer’s Disease
  • Excelon – Mild to moderate stages of dementias and Alzheimer’s Disease
  • Namenda – Moderate to severe stages of dementias and Alzheimer’s Disease

The second category of prescription medications treats the mood and psychosis symptoms of dementias and Alzheimer’s Disease.

These medications need to be closely monitored and carefully dosed.

The optimal result of these medications is mood stabilization and no psychosis. If your loved ones are “knocked out” by this category of medications, the doses are too high. If your loved ones are “out of control,” the doses are too low. This is another reason you want a psychiatrist involved.

There are many possible combinations of this category of drugs. All the anti-psychotic drugs have possible side effects and extreme caution should be exercised, because of the high sensitivity to neuroleptics,  in using these with our loved ones with Lewy Body dementia. Some of the most commonly-used medications are:

  • SeroquelXR – anti-psychotic (possible side effects of neuroleptic sensitivity and tardive dyskinesia in Lewy Body dementia)
  • Citalopram – anti-depressant
  • Clonazepam – anti-anxiety

Anti-anxiety medications seem to be the most frequently mismanaged in this category of drugs. My advice is to advocate with our loved ones’ psychiatrists for low dosages and have them prescribe it to be taken as-needed instead of as part of the daily medication regimen.

The medication, Halcyon, by the way, should be avoided at all costs in people suffering from dementias and Alzheimer’s Disease. It really wreaks havoc and it has a very long half-life! The most likely place this would be given is during hospitalizations, so be sure to let all the hospital staff you come in contact with know that our loved ones should not be given Halcyon for anxiety and/or sleep.

vitamins for dementia and Alzheimer's DiseaseVitamin supplements may be added to address some of the functioning difficulties brought on by dementias and Alzheimer’s Disease. In my personal experience, I really don’t believe they’re all that effective after the fact of diagnosis. However, we all should make sure we have plenty of this in our own diets now to protect ourselves.

The most common are:

  • Folic acid – helps memory and mental processing speed
  • Vitamin D3 – protects the brain by controlling neurotransmitters and clearing amyloid plaques (found in Alzheimer’s Disease)
  • Vitamin C – protects cells from the effects of free radicals
  • Melatonin – facilitates sleep

Please be careful to work with your loved one’s primary care physician on vitamin supplementation. In many instances, these brain diseases are not the only health issues our loved ones are dealing with and some of the vitamins that might address dementia and Alzheimer’s Disease symptoms could negatively interact with other prescription medication for other health problems.

Our job as loving caregivers is to give the best care we are able to our loved ones, advocating for them, protecting them, making sure that everything that is being done is in their best interests.

We are there because we love them.

All the other participants in the caregiving journey are there for other reasons and those reasons may, intentionally or unintentionally, not consider what is best for our loved ones.

So it’s our job to make sure that we are the gatekeepers to the best care we are able to provide for the people we love. It’s a big responsibility, but, in my opinion, there is no greater gift we can give or be given in this life than to do this.

The Layperson’s Guide to Lewy Body Dementia

Today’s post will discuss Lewy Body dementia: what it is, some of the hallmark features of it, and medications that can help, unless there are severe side effects, and some alternatives to deal with those cases in which the most-often prescribed medications may not work.

Lewy Body dementia is diagnosed during life by its symptoms. The only way to Lewy Body Proteinconfirm it medically is by doing an autopsy on the brain after death. However, the symptoms are obvious enough that it can easily be diagnosed while our loved ones are alive.

This history of  discovering the source of Lewy Body dementia began with Frederick Lewy in 1912. While doing autopsies on the brains of people who’d been diagnosed with Parkinson’s Disease (Lewy Body dementia and Parkinson’s Disease share many motor systems characteristics), Lewy discovered tiny – and abnormal – protein deposits in deteriorating nerve cells of the mid-brain. These proteins became known as Lewy Bodies. Their presence in the mid-brain always leads to a diagnosis of Parkinson’s Disease.

It wasn’t until fifty-plus years later that scientific researchers discovered these same abnormal protein deposits in the cortex (the “gray matter”) region of the brain in patients who had suffered from dementia.

Someone with Lewy Body dementia will have these abnormal protein deposits in both the mid-brain and the cortex. 

The symptoms that differentiate Lewy Body dementia from Parkinson’s Disease are:

  • Vivid and recurring hallucinations and delusions early on when the inkling that something’s going wrong starts.
  • REM sleep behavior disorder
  • Mild to moderate motor skills impairment, most notably with balance, muscle stiffness, and the tendency to fall frequently. A shuffling gait when walking is usually noticeable as the disease progresses.
  • Strong and dramatic fluctuations in cognitive function and alertness.

With my mom, although Lewy Body dementia wasn’t officially diagnosed (I did the research on what I was seeing and realized that’s what it was) until near the end of her life, all three of these symptoms were present early on when I realized something was wrong. She had progressively-worse balance problems the last six years of her life, with those becoming a front-and-center issue in 2010 when she began falling a lot.

Her hallucinations and delusions became a centerpiece issue in 2010 as well. There were also some fluctuations in her cognitive function in 2010, but the strong and dramatic fluctuations in both cognitive function and alertness did not begin until December of 2011. Even then, they were sporadic, but fairly quickly became more of a mainstay until her death in August 2012.

One the medications that she was given during her psychiatric hospitalization in 2010 was SeroquelXR.

This is one of the drugs you’ll have to make a judgment call on, since there are risks and potentially dangerous side effects to use this medication for an “off-label” use in treating the symptoms of dementias and Alzheimer’s Disease.

SeroquelXR is an anti-psychotic (neuroleptic) medication specifically developed for bipolar disorder. It carries a warning that it is not be used in elderly patients with dementia. Additionally, among our loved ones suffering from Lewy Body dementia, about 50% have adverse reactions to neuroleptic medications.

However, for Mom, it worked very well for about sixteen months in controlling the hallucinations and the delusions. In late November 2011, Mom woke up one morning and her whole body was uncontrollably, but rhythmically spasming. She wasn’t in any pain, but she was scared, so I had EMS get her to the emergency room so we could find out what was going on. What she experienced was late-stage neuroleptic-induced tardive dyskinesia.

The SeroquelXR was the culprit, so the neurologist discontinued that during her hospital stay and the spasms stopped within a few days. I was concerned about the mood aspect of not having the SeroquelXR, so the neurologist and Mom and I discussed options, since she was on anti-anxiety medication already.

The best and most workable solution was Depakote, a medication typically prescribed for epilepsy sufferers. It would work on both mood and spasms, but the neurologist said the hallucinations and delusions were going to come back.

And within a month, they did, but they were not scary to Mom and they were always a surprise to me, even though I expected them, but not unpleasant and not unmanageable.

But I came to realize that the SeroquelXR had effectively controlled a lot of the Lewy Body dementia symptoms the longer that Mom was off of it, because after the SeroquelXR was discontinued, the Lewy Body dementia symptoms gradually increased and worsened.

So SeroquexXR can be very effective in treating the symptoms as long as our loved ones can tolerate it and don’t have the kind of problems Mom experienced with tardive dyskinesia.

And that is an important point to make. A lot of this becomes a judgment call on our part as advocates and caregivers for our loved ones. If I knew back in 2010 (I wasn’t involved in the prescription part when Mom was critical and hospitalized) what I know now about SeroquelXR, I would have agreed to it. Because for sixteen months, it gave Mom a pretty decent quality of life in the dementias and Alzheimer’s Disease realm.

There is no known cause for Lewy Body protein deposits occurring in the mid-brain and cortical regions of the brain, so there’s nothing health-wise or lifestyle-wise that can be done to prevent it.

But, if we can understand what it looks like, then we can help keep our loved ones more comfortable and safe and perhaps keep ourselves a little saner and a little calmer. The more we know, the better we can love and serve them.

I’ll end this post with a progressive-over-time brain scan image of Lewy Body dementia (the source is http://www.neurology.org/). A picture sometimes is worth one thousand words, especially when I consider the fact that my mom had vascular dementia, Lewy Body dementia, and Alzheimer’s Disease and this picture shows the damage to the brain from just one of those three diseases. What an uphill battle her last few years were and she fought it bravely and well right up to the end.

Progression of Lewy Body Dementia