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“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 7 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this eighth installment of brief excerpts from each chapter in the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the seventh step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 7, which provides a comprehensive look at how to acknowledge, recognize, and respond to the seventh step in the journey through dementias and Alzheimer’s Disease: sleep changes and disruptions.

This chapter shows that changes to sleep patterns and sleep disturbances, which includes sundowning, are all part of the seventh step in the journey through dementias and Alzheimer’s disease.

This chapter also discusses how this step impacts our loved ones and us as caregivers and the practical, real-time, and loving ways we as caregivers should respond and help our loved ones walk through this step in the journey.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The series continues with the inclusion of excerpts from Chapter 1, Chapter 2, Chapter 3, Chapter 4, Chapter 5, Chapter 6, and, with this post, Chapter 7.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

going gentle into that good night divider

Excerpt “Chapter 7: ‘Don’t Know If It’s Day Or Night’”

“Changes and disruptions in sleep are the next step in the journey our loved ones go through with dementias and Azheimer’s Disease. Included in this step is a phenomenon called sundowning, which we’ll explain the logic and science behind.

But first we need to talk about the science of sleep. All humans have a 24-hour internal clock that is known as our circadian clock (the term circadian rhythm refers to any biological process that completes a 24-hour cycle).

This clock, shown below, is a complex and coordinated system of neurology, hormones, environmental factors, and routines that are established from the time we are born.

circadian rhythm sundowning melatonin going gentle into that good night

Everyone’s circadian clock is unique, but each follows the general pattern shown above. In fact, the clock shown above is the ideal and the circadian clock that humans basically followed until the Industrial Revolution took place in the late 18th and early 19th centuries.

Since the full transition into the Industrial Revolution, human life and the adherence to this natural circadian clock has been altered and challenged because one of the side-effects of the Industrial Revolution was the development of artificial lighting (gas in the 19th century and electricity in the 20th century), which enabled lighting to be available 24 hours a day.

This was the byproduct of greed that served the captains of industry well (instead of limiting work hours to daylight hours only, artificial lighting enabled factories, foundries, mining operations, etc. to operate on a 24/7 schedule), but the human race definitely got the short end of the stick here.

Because the body is designed genetically, neurologically, hormonally, and environmentally to function in sync with the 24-hour circadian clock shown above, disrupted sleep and sleep deprivation has a chaotic effect on the body, even in otherwise-healthy people.

Time and again, science and medicine have shown a significant increase in accidents and serious injuries among shift workers who work at night. This includes not only production workers, but also professionals such as medical personnel. There is also a considerable amount of evidence that shows night shift workers are much likely to be injured or killed in driving accidents because they have a higher incidence of falling asleep behind the wheel going to and from work.

The most disruptive shift to the human body is the graveyard shift (usually 11 pm to 7 am). By the time these workers start their shift, the body is fully prepared (the hormone melatonin relaxes the body and mind for sleep beginning around 9 pm) to sleep. Forcing the body to do the complete opposite of what is it naturally designed to do is often counterproductive and very destructive to human health.”

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 Alzheimer’s Disease

Today’s post will provide an overview look at Alzheimer’s Disease. As I’ve stated before, Alzheimer’s Disease is a specific type of brain deterioration disease (dementia) that differs from other dementias.

While Alzheimer’s Disease is a type of dementia, not all dementias are Alzheimer’s Disease. “Alzheimer’s Disease” has become the catch-phrase for all neurological degeneration among the general population and that imprecision leads to a lack of understanding of the complexities of these diseases, especially when several types of dementia are present concurrently.

 

Dementias affect specific areas of the internal structure of the brain and are caused by specific abnormal occurrences within those areas. We’ve looked at vascular (multi-infarct) dementia, which is a result of small vessel ischemia within the blood vessels in the brain, and Lewy Body dementia, which occurs when abnormal proteins are deposited in the cortex of the brain.

Plaques and Tangles in Alzheimer's DiseaseAlzheimer’s Disease affects the whole brain, essentially eroding and diminishing, through the resulting atrophy, the whole structure of the brain. The two crucial components in Alzheimer’s Disease are the overabundant presence of plaques (beta-amyloid protein deposit fragments that accumulate in the spaces between neurons) and tangles (twisted fibers of disintegrating tau proteins that accumulate within neurons). Watch this short video to see how these plaques and tangles form and how they lead to neuron death.

While plaques and tangles, which lead to neuron death (the nerve cells get deprived of what they need to survive and be healthy), are part of the aging process, in our loved ones with Alzheimer’s Disease, there are so many of them that the brain slowly dies from the inside out.

Healthy Brain vs Alzheimer's Disease Brain

It is clear from the picture above exactly why Alzheimer’s Disease is a systemic disease, because all areas of the brain are eventually impacted.

However, as Alzheimer’s Disease begins, the first area of the brain affected is the temporal lobe, which is, in part, responsiblelobes of brain for long and short-term memory, and persistent short-term memory loss is usually one of the first symptoms of Alzheimer’s Disease to appear.

The second area of the brain to be affected is generally the frontal lobe, which handles information processing and decision-making. The last part of the brain to be affected is usually the parietal lobe, which is the area of the brain responsible for language and speech.

Alzheimer’s Disease has distinct stages in which symptoms materialize. The stages are (this lists the three main stages, but there is also a more comprehensive seven-stage breakdown, known as the Global Deterioration Scale or the Reisberg Scale):

  • Stage 1 – Mild – Recurring short-term memory loss, especially of recent conversations and events. Repetitive questions and some trouble with expressing and understanding language. Possible mild coordination problems with writing and using objects. May have mood swings. Need reminders for some daily activities, and may begin have difficulty driving.
  • Stage 2 – Moderate/Middle – Problems are evident. Continual memory loss, which may include forgetting personal history and the inability to recognize friends and family. Rambling speech. Unusual reasoning. More confusion about current events, time, and place. Tends to get lost in familiar settings. Experiences sleep issues (including sundowning). More pervasive changes in mood and behavior, especially when experiencing stress and change. May experience delusions, aggression, and uninhibited behavior. Mobility and coordination may be affected. Need set structure, reminders, and assistance with daily living.
  • Stage 3 – Severe/Late – Confused about past and present. Loses all ability to remember, communicate, or process information. Generally incapacitated with severe to total loss of verbal skills. Unable to care for self. Often features urinary and bowel incontinence. Can exhibit extreme mood disturbances, extreme behavior, and delirium. Problems with swallowing occur in this stage as well.

It’s important to remember that not all our loved ones with Alzheimer’s Disease – especially if there are other dementias present – will go through every aspect of each stage nor through all the stages before they die. That’s one of the real difficulties with “mixed-dementia” diagnoses, as these are called, because it’s difficult to tell which brain disease is causing which problems and that makes them more difficult to manage symptom-wise.

The medications generally prescribed for Alzheimer’s Disease are Aricept (mild to moderate stages), Namenda (moderate stage), and Excelon (mild to moderate). All three of these medications are cognitive enhancers. It’s not unusual to have more than one of these medications prescribed at a time.

I will talk specifically about sleep disturbances in dementias and Alzheimer’s Disease, including sundowning, in another post, but I will caution all caregivers to stay away from both non-prescription sleep medications like Tylenol PM, Advil PM, and ZZZQuil and prescription sleep medications like Lunesta and Ambien (all of these can actually make the symptoms worse and definitely make injury and/or death from a fall more likely).

Melatonin is naturally-occurring sleep hormone in humans. As people age, there is less melatonin produced. That’s why, in general, most older people who have never had sleep disorders eventually and gradually sleep less than their younger counterparts. However, the brain damage that dementias and Alzheimer’s Disease cause exacerbates this lack of melatonin. 

So, it’s worth it to try a therapeutic dose (up to 20 mg per night is considered to be safe) of Melatonin. It is available over-the-counter at both brick-and-mortar and online drug stores.

Start with a 3 mg dose and add slowly. With my mom, a 5 mg dose provided enough for her to sleep as best as she could through the night. Do not overdose because this will disrupt the circadian rhythm further by producing late sleeping and grogginess during the day.

Usually our loved ones with dementia and/or Alzheimer’s Disease, even though these diseases are fatal (when the brain’s dead, you’re dead), don’t die from them specifically.

They die either from a concurrent health problem (in my mom’s case, it was congestive heart failure which lead to a major heart attack, a minimal recovery, and then her death twelve days later) or from complications that arise from the brain degeneration caused by the dementias and/or Alzheimer’s Disease.

The two most common causes of death in Alzheimer’s Disease are pneumonia (the brain controls swallowing, and once that becomes compromised, aspiration of food into the lungs is likely and leads to an infection) and fatal trauma to the head from falls.