Dementia: Patients Don’t Act The Way They’re Suppose To.An AFC Overview of Alzheimer’s and other Dementias.
An AFC Overview of Alzheimer’s and other Dementias
Author: Mark Parkinson RPh: President AFC CE
Credit Hours 2.5- Approximate time required 150 min.
Present an overview of Dementia and its causes
1. Change the paradigm of the Dementia Care Giver.
2. Define Dementia, Fixed and Progressive Cognitive Impairment
3. Explain the Anatomy and Physiology of the Brain
4. Present an Overview of Alzheimer’s, Vascular Dementia, Dementia with Lewy Bodies, and Parkinsons Dementia
5. Discuss Strokes and Dementia, and 1st aide for Strokes
6. Discuss Caregiver Issues In Dementia Care.
1. Read the course materials. 2. Click on exam portal [Take Exam]. 3. If you have not done so yet fill in Register form (username must be the name you want on your CE certificate). 4. Log in 5. Take exam. 6. Click on [Show Results] when done and follow the instructions that appear. 7. A score of 70% or better is considered passing and a Certificate of Completion will be generated for your records.
The information presented in this activity is not meant to serve as a guideline for patient management. All procedures, medications, or other courses of diagnosis or treatment discussed or suggested in this article should not be used by care providers without evaluation of their patients’ Doctor. Some conditions and possible contraindications may be of concern. All applicable manufacturers’ product information should be reviewed before use. The author and publisher of this continuing education program have made all reasonable efforts to ensure that all information contained herein is accurate in accordance with the latest available scientific knowledge at the time of acceptance for publication. Nutritional products discussed are not intended for the diagnosis, treatment, cure, or prevention of any disease.
Dementia: Patients Don’t Act The Way They’re Suppose To
An AFC Overview of Alzheimer’s and other Dementias
Perception is the process by which we humans organize and interpret our sensory input based on the preconceived notions that we have. There is a part based on how our senses and mind function and a part on based on how we function as part of a larger world. What happens when one or both parts aren’t based in the way things really are? We continue on, thinking that we are doing things right, but in essence we are not. Our actions don’t fit. It takes extra effort to exist in the world around us and often our efforts fail.
One of the most challenging aspects of In Home Care is when a patient’s perceptions aren’t the way they are supposed to be. Their perceptions of the world around them aren’t based on reality, but on some alternative version of the world. It’s what we call Dementia. Dementia leads to inappropriate acts and unexpected behaviors. The patient wanders around the house looking for upper floors, basements or people that aren’t there. They argue and act in unusual ways. They escape out the door and wander the neighborhood trying to make reality fit into their incorrect perceptions. Inevitably it causes problems, emotional stress and extra work. You, the caregiver must take care of the patient despite their incorrect perceptions. You must help them fit into reality when their Dementia will not let them. Let me tell you from personal experience, that isn’t easy.
This article will attempt to ease your burden by educating you on the different types of Dementia, including Alzheimer’s. It will teach you how to recognize them and what to do in each case. From time to time I will insert explanations of things from the Adult Foster Caregivers point of view. Hopefully, by the end of the article you will be better prepared and capable to care for those Dementia patients who come into your care.
Adult Foster Care (AFC) and the Dementia Burdened Patient
In Dementia Care the essential first step is to work on your own perceptions. You must change the way you perceive the Dementia patient. In the normal operations of Adult Foster Care you treat everyone in your home as a resident – capable and expected to do things for themselves. The main goal is to provide as normal a home environment as possible. When your resident’s health problems prevent them from do things for themselves, they become patients and you provide the necessary caregiving to meet their needs. In all other circumstances you expect the resident to behave like a normal adult. If they don’t, you reason with them until they do. In Dementia, the health problem is that they can’t act normally. You cannot make your resident act normally because your patient’s mind will not let them. Instead of expecting the resident to act as your other clients do, you must change your caregiving methods to meet the needs of your Dementia burdened patient.
What is Dementia?
Dementia is a syndrome of related symptoms. In general, it is a term relating to the loss or impairment of intellectual function (including memory) serious enough to interfere in the activities of daily living. There are two broad categories: Fixed Cognitive Impairment and Progressive Impairment
Fixed Cognitive Impairment
Some Dementias are the result of brain damage that comes from a causative event. For example, head or emotional traumas, strokes, seizures, alcohol abuse or other toxins. The main characteristic of this category is that the dementia does not get worse after the cause is stopped.
Progressive impairment is caused by a brain degenerative disease. Thus, causes are organic in nature and the condition always progresses into worsening mental conditions. Once mental capabilities are impaired, rarely do they return fully. In most cases, they won’t return at all.
In Progressive Impairment, the beginning of the dementia is usually mild and episodic. The patient can function normally most of the time. As the dementia progresses, abnormal behavior becomes more frequent and severe. Usually, between episodes, the patient can tell that something is going wrong, but during episodes of dementia there is no perception of abnormal behaviors. As the syndrome worsens the patient may become disinhibited and may neglect themselves. Eventually the patient can’t function independently and must receive outside care. In the final and most severe stages mental function deteriorates to the point that it affects other bodily functions. As a result, death usually occurs from other medical conditions, such as pneumonia, infections or malnutrition. In essence, Dementia gradually reduces the quality of life of the patient, first from mental conditions, later with the addition of physical conditions. Risk factors for progressive impairment are age, genetics and, of course, diseases.
The Adult Foster Care point of view.
The prevalence of Dementia is quite high in AFC homes. It could be the main cause of AFC placement or a contributing factor. Even if they don’t have dementia when they move in, because age is a factor, every resident that you receive into your home is at risk for developing dementia. It will be up to you to recognize it when you see it – the earlier the better. Dementia symptoms are variable and can be progressive. This disease will require you to be flexible and adjust your caregiving accordingly. Whether you want to deal with it or not, mental health issues will always be a major factor in Home Care for the aged. At the end of the article I have included a Mini-Cog test that will be helpful in screening your residents.
To more easily understand the different types and causes of Dementia; let us first take a look at the brain and how it functions normally.
Your brain is the organic part of your individual thinking self. It is the engine that drives your personality, will power, reasoning, habits, abilities and the interpretation of what your senses give to you. Some functions are set to happen automatically, while others require conscious action. It is easily the most complex and intricate part of our body.
The Brain weighs about 3 pounds and is made up of millions of specialized cells, called neurons, a huge network of blood vessels, and connective tissue.
The brain has three main parts.
The biggest is the cerebrum and is the uppermost part of the brain. It controls memory, problem solving, voluntary actions and feelings. It’s the thinking part of the brain. The cerebellum sits at the back of your head, under the cerebrum. It controls coordination and balance. The third part is the brain stem. It sits in front of the cerebellum and connects to the spinal cord. The brain stem takes care of most of our automatic processes, like breathing, heart rate and digestion.
The brain is supplied by a very large and intricate network of blood vessels. The vessels carry in resources (mainly oxygen and glucose) and flush away waste products. At any given time, 20 to 25 percent of our blood goes to the brain. It requires a constant 20 percent of the total oxygen and fuel that we take in. When you think hard, that requirement can be as high as 50%. The brain is very dependent on regular supply of blood. It does not store much supply, which makes it very sensitive to any reduction of flow. Any drop in supply and its functioning is reduced. We feel dizzy, lightheaded, and/or confused as a result. If the reduction continues, the cells can quickly die, leading to permanent damage.
The outer layer of the cerebrum is called the cortex. It’s the wrinkly part of the brain’s surface. Specific areas of the cortex are involved in controlling different bodily actions. Science has been able to create a “map” of these functions. It has proven very useful in understanding the effects of brain damaging events.
The brain has two distinct right and left hemispheres. They are connected and communicate to each other through an area called the corpus callosum. The right hemisphere controls the body’s left side movements, while the left side controls the right. It appears that the different spheres can dominate in other functions, as well. For example:
1. When a person has a stroke on the right side, they tend to have problems with spatial perceptions. They misjudge distances, causing falls. It can lead to difficulty in guiding the hands to do actions, like buttoning clothes. It can also affect judgment, which shows up in unusual behaviors. Because they are unaware of this judgment deficiency the right side stoke sufferer can exhibit inappropriate actions and moods. It can even lead to dangerous behaviors.
2. When a person has a stroke on their left side, they have difficulty with language and speaking. They can become slow and cautious, with short attention spans. Often they need frequent reminders and feedback to accomplish tasks.
The work of the brain is accomplished by specialized cells called neurons or nerve cells. The adult brain is very complex with about 100 billion neurons. Each nerve cell has branches that connect to other neurons. All totaled, it is estimated that there are over 100 trillion connections. Each cell communicates with those it is connected to, creating thought and memory.
Communication between cells is an electrochemical signal. When a signal happens, a tiny electrical charge travels down the length of the neuron to its connections with other nerve cells, called synapses. If an electrical charge that reaches a synapse is strong enough it will trigger a release of chemicals stored there called neurotransmitters. There are dozens of neurotransmitters. A few examples are acetylcholine, serotonin, and norepinephrine. When the neurotransmitters travel across the synapse they plug into receptors on the receiving cell. This results in a buildup of another electrical signal in the nerve. When the charge is strong enough the nerve is said to “fire” and off the new signal goes. Some neurotransmitters make it easier to fire, while some make it more difficult. After the chemicals are released, they are either reabsorbed into the cells (call reuptake) or broken down by enzymes in the synapse and the nerve is reset for the next signal.
The brain is set to be very sensitive to stimulus and can react extremely quickly. In fact, it is so sensitive that to protect it from outside stimuli the whole central nervous system is wrapped in 3 layers of membranes called the meninges. Their function is to block anything that will interfere with the normal functioning of the brain. We call these layers the “blood brain barrier”, which is very hard to cross. This is a major factor in any medicine used to affect the brain.
The brain remains isolated from the world and experiences it through sensory inputs. We understand the world by interpreting sensory inputs, which creates experiences. We store these experiences in neural pathways, which create memories. We create conscious reactions to our world as a combination of the various neural pathways. Our reactions and perceptions can be altered if you make a change in one, some or all of the pathways. When that happens it becomes our reality regardless of what really is happening. Examples of this are hallucinations.
You are born with almost all the brain cells you’ll ever have. The brain grows by adding to the structures of the cell and in developing connections between nerves. If a cell is damaged it can possibly be repaired. If it dies, it is lost forever – a new one will not grow in its place.
Cell death happens as a natural result of age. If a particular cell dies, messages can be rerouted through different connections. If more cells die, rerouting may become more complicated, requiring a retraining of the pathway. If too many cells die, it becomes impossible to reroute and the brain action pathway is lost. This results in senile dementia or the natural loss of memory and mental sharpness due to age. Assaults on the brain tissues from fixed sources, like alcohol and drugs, or progressive sources, like disease, add to and speed up this process, causing an earlier and more severe case of dementia.
The Adult Foster Care point of view.
You will have noticed by now in your career that the elderly find it difficult to cope with change. Sometimes strong habits create barriers to change. But as a person ages there is a real chance that they have lost the mental capacity to cope with change. Given enough help the elder can adjust, but patience and understanding is required. Remember, the old coping pathway might be gone forever. If that is the case, behavior adjustment requires a retraining of the neural pathways and it takes time. Repetition and reinforcing proper habits help.If the loss is sudden, like in a stroke, or if the gradual loss becomes too great for the patient and your skills, you can get help from the use of an Occupational Therapist. They are specially trained to help the elder regain some of their lost abilities. Occupational Therapist can be paid for through insurance and can really ease your caregiving burdens.
Causes of Dementia
You are now better equipped to understand the issues in recognizing and treating mental health. The main cause of Dementia in the elderly is the loss of brain function due to cell death. Accelerated cell death comes from fixed events and progressive diseases.
Fixed Cognitive Impairment
There are many things that can cause the early death of a cell. The most common are: trauma that destroys the physical structure of the cell; toxic chemicals that make it past the blood brain barrier; the buildup of the body’s own metabolic waste; and the denial of needed resources. As long as the assault on the brain continues, cell death and functional loss continues. The goal of therapy is to eliminate the assault on the brain and to retrain the mind to utilize what’s left to operate normally. The hope of Fixed Cognitive Impairment treatment is that a normal lifestyle can be regained, if therapy is applied soon enough and retraining efforts are successful.
The Adult Foster Care point of view.
Often caregiving requires the AFC provider to do what is right for the patient, even if the patient gets cantankerous and resists your efforts. You may think, “Has that elderly person lost their mind? What are they thinking, being so ornery?” Your job becomes easier when you realize that this is exactly what might have happened. I remember a case when the care giver called up the pharmacy where I was working to complain about how difficult a medication seemed to be making a patient act. I listened to the frustrated caregiver and asked them to describe the difficult actions. Because of my AFC background, I recognized the pattern and asked the caregiver to look closely at the pupils of the patient. For the first time the caregiver noticed that they were peculiar. One was larger than the other. I quickly informed them to hang up and dial 911 – the patient was experiencing a stroke. Blood flow had been cut off by a clot, causing the brain to act abnormally. Sometimes patients can be difficult because they can’t recognize they are doing things inappropriately. They need your help to compensate for their inabilities and to help them behave correctly, even if they don’t want to.
There are a number of diseases that cause brain cell death at an unnaturally high rate. Most are not well understood and are hard to detect in their early stages. Quite often, the first recognizable symptom is Dementia. By the time a problem has been detected, significant permanent loss of brain cells has already occurred. After the disease has been diagnosed, the goal is to retain as much normal brain function as possible, for as long as possible. Earlier recognition of symptoms leads to better retention of normal behavior.
The list of neurodegenerative diseases is quite long. Too explain them all is beyond the scope of this article. I’ll concentrate on teaching you just the main ones you might see in your practice setting: Alzheimer’s disease, Vascular Dementia, Dementia with Lewy Bodies, and Parkinson’s disease.
Alzheimer’s Disease (AD)
Alzheimer’s disease (AD) is the most common type of dementia, making it the condition you are most likely to see in your practice setting. AD accounts for 60 - 80% of all dementia cases. Alzheimer’s Association estimates that 1 in 8 older Americans have AD. The prevalence in Adult Foster Care homes is most likely much higher than that.
Alzheimer’s disease was first described over a hundred years ago by Alois Alzheimer, a German psychiatrist and neuropathologist. He recognized that some of his patients showed symptoms that were different from senility. At the time he labeled it Presenile Dementia. Later, other Doctors picked up on his studies and labeled all similar cases Alzheimer’s disease.
Even though AD has been recognized for 100 years, learning about the disease has come very slowly. Research has ben difficult. The disease processes happen at the sub-cellular level, behind the blood brain barrier. Early and middle stages of the Alzheimer’s diseases are almost impossible to detect and are difficult to differentiate from regular senile dementia. It has only been in the last 30 years that significant advancement in understanding has been gained. But Medical research has yet to uncover causes of the diseases, cures for them, or even to slow down it progression. A major effort is underway all over the world in the search to find answers. What we have found out so far is;
Most of what was once thought to be senility was actually Alzheimer’s disease. Over 5.4 million Americans have AD, of which 5.2 million are older than 65. As people get older its prevalence increases. About 13% of people over 65 have AD, while 43% of the elderly over 85 are afflicted. Every 70 seconds another person will diagnosed with AD by their Doctor. More women have AD than men. Two-thirds of American afflicted by AD are women. No one knows if that is significant or not. It might be that women just live longer than men.
Etiology (What Causes Alzheimer’s disease)
Alzheimer’s is a slow progressive degenerative disease that robs a person of their memory, their recognition of current reality and eventually their personality. Research has deduced that there is probably multifactorial causes. In many of the AD cases researched, scientists have found a higher than normal presence of the following abnormalities:
1 .Amyloid plaques - abnormal clusters of protein fragments between nerve cells. The amyloid fragments are pieces of larger proteins found in the fatty membrane of a neuron. When they break off they are “sticky” and they clump together outside the nerve. Eventually the clumps grow to the point where they start to interfere with the nerve signals between the nerves. The plaques also tend to trigger inflammation responses, which cause immunity cells to come and devour disabled cells.
2. Intracellular tangles - a protein called Tau that normally keeps the supply tracks in a cell straight, collapses into a tangle. The tangle disrupts the flow of supplies and the cell eventually dies.
The Adult Foster Care point of view.
There is a theory that free radicals (rogue atoms that steal electrons from other atoms, disrupting chemical bonds in molecules) may be a contributing culprit in AD. Antioxidants (like in different vitamins) have plenty of extra electrons and can neutralize free radicals. Since there are plenty of other benefits to taking vitamins, it just makes since to use them to protect your clients from free radicals, as well. Be sure that all your residents are regularly taking them.
3. A gene called apolipoprotein E-e4 (APOE-e4) - Researchers estimate it may be a factor in 20-25% of AD cases. People who inherit the APOE-e4 gene from both parents are at higher risk. But some patients who have the gene never develop AD.
Researchers have discovered a rare form of Alzheimer’s disease caused by deterministic gene variations called “autosomal dominant Alzheimer’s disease (ADAD)” or “familial Alzheimer’s disease”. Symptoms nearly always develop before age 60, and may appear as early as the 30s or 40s. Deterministic Alzheimer variations have been found in only a few hundred extended families worldwide. True familial Alzheimer’s accounts for less than 5 percent of cases.
Of course all these abnormalities are found on the sub-cellular level using a microscope. The only outward signs and indicators of AD are dementia, age and family history.
Diagnosis (The Signs and Symptoms)
The Adult Foster Care point of view.
For reasons already described, early detection is crucial. But how can you tell the difference between AD and regular senility? Actually, it doesn’t matter, “better safe than sorry” is always the way to go. If you suspect that AD is developing, send the patient to the Doctor every single time. Don’t worry about what the Doctor thinks. Later in the article I will give you some tools that will help you communicate effectively with the Doctor (see Mini-Cog).
The Alzheimer’s association has published a very useful tool in recognizing the signs and symptoms of Alzheimer’s. I pulled this directly from their web site (see Other Resources).
“Memory loss that disrupts daily life is not a typical part of aging. It may be a symptom of Alzheimer's, a fatal brain disease that causes a slow decline in memory, thinking and reasoning skills. Every individual may experience one or more of these signs in different degrees. If you notice any of them, please see a doctor.”
“10 warning signs of Alzheimer’s.
- Memory loss that disrupts daily life.
One of the most common signs of Alzheimer’s is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own.
- Challenges in planning or solving problems.
Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.
- Difficulty completing familiar tasks at home, at work or at leisure.
People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, Managing a budget book at work or remembering the rules of a favorite game.
- Confusion with time or place
People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.
- Trouble understanding visual images and spatial relationships.
For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror.
- New problems with words in speaking or writing.
People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a “watch” a“hand-clock”)
- Misplacing things and losing the ability to retrace steps.
A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time.
- Decrease or poor judgment.
People with Alzheimer’s may experience changes in judgment or Decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.
- Withdrawal from work or social activities.
A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced.
- Changes in mood and personality
The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.”
If you notice any of the above, record your observations in there file and send them to their Doctor’s. Once the patient is his office, the Doctor will make a clinical determination that there is indeed Dementia in the patient. Since there is no clinical test for Alzheimer’s yet, he will check for other causes of Dementia. If all other causes have been eliminated, he might take an MRI or CT scan of the patient’s brain to check for AD-like changes. Once he is satisfied with his research, he will make a diagnosis and prescribe therapies.
As you now know there is no possible way to cure or even slow down the progression of AD. The goals of therapy are to control further assaults on the brain, retain as much as possible normal activities of daily living and compensate for losses in abilities.
There are a number of medications that can be used to help retain normal brain activity. I’ll primarily explain how they are used in AD, but they could also be used in other dementia-causing diseases. There are two classes of medicines and five different drugs.
Cholinesterase Inhibitors (ChEIs)
Acetylcholine (ACh) is a very important neurotransmitter used in cognition and memory. It makes the nerves fire. In order to reset the nerve for the next charge, the body uses enzymes to break down ACh. Normally, we have plenty of ACh around so we don’t care if the body gets rid of some of it. In Alzheimer’s and similar diseases, that is not the case. ChEIs slow down those enzymes to help retain more ACh for future use.
The drugs are Tacrine (Cognex), Donepezil (Aricept), Galantamine (Razadyne),and Rivastigmine (Exelon). Tacrine was the first medication developed, but it caused a lot of liver problems and is used less frequently now. Tacrine and Donepezil both are available in generic forms. For patients with swallowing problems or other difficulties taking medications, Exelon is available as a patch. Aricept is available as an ODT (orally disintegrating tablet). Razadyne and Exelon are available as a liquid. Tacrine is the only medicine that can be crushed or chewed. Exelon should be taken with food.
The most common side effects of ChEIs are mild to moderate nausea and vomiting. In most cases the nausea and vomiting subside after 2 to 4 days. Other side effects are muscle cramps, bradycardia (slow heart beat), increased stomach acid and reduced appetite. They may make sleeping and urinary obstruction problems worse.
A major concern of ChEIs is that Acetylcholine is a significant factor in drug regimes. There are many drugs that have anti-cholinergic effects, which would negate the effectiveness of ChEIs medications. The pharmacist or Doctor should review the patient’s medication list to check for this problem. Common drugs known to cause this issue are Amitriptyline, Benztropine, Carisprodol, Chlorphenerimine, Meclizine, Oxybutynin, and Promethazine, and Diphenhydramine (which is found in many OTC cold, allergy and sleep remedies).
NMDA Receptor Antagonist
There is only one drug in this class so far, Memantine (Namenda). It is known that Alzheimer’s changes the way a nerve works. One of the effects is changes in the NMDA receptors. Those changes lead to excessive use of glumatate (another neurotransmitter) that leads to cell death. Memantine prevents the over-stimulation of the glutamate system, preventing the neurotransmitter from causing toxicity.
Namenda has no generic, yet, and comes as a tablet, a solution, and a controlled release capsule. It can be used alone or in combination with other AD drugs. The tablet and capsule should not be crushed or chewed. The side effects are intermittent and mild and include nausea, confusion, dizziness, headache, diarrhea or constipation, sedation and agitation.
The Adult Foster Care point of view.
As the disease progresses the dosage of medication will probably be increased, making it more likely that side effects will occur and become a problem. If you manage the side effects, you will be able to use the drugs for much longer. It will be your job to keep track of their severity and help the Doctor determine when the side effects outweigh the benefits of the drug.
Prognosis (Progression of Alzheimer’s)
The most common measurement of the progression of AD is described in three stages: mild, moderate and severe. Those afflicted go through the stages at different rates. Medications can slow down the progression, but only temporarily. The average effective lengths for the medications are 2-4 years. Once the medications are discontinued, expect a very rapid decline.
In Mild Stage AD the patient lives a more or less normal life, with just a few adjustments. In Moderate Stage AD the patient is significantly affected by the disease. This is the stage where caregiving help will be sought. In Late Stage AD the needs of the patient are very great and specialized institutions should be contacted.
The Adult Foster Care point of view.
No one wants to lose a client. Sometimes you can get very attached to a resident. You will put a lot of effort into retaining every customer you can. Eventually, though, every effort will fail and death will ensue. You can’t do anything about that. You can only do the best you can with what you have. When that’s not enough, let go, and move them into more specialized facilities.
AD is a lethal disease. It is the 6th leading cause of death in America. It is the only leading cause of death that is not in decline, as it continues to grow in occurrence. The average duration from recognizable onset to death is 3-9 years. Some cases can last up to 20 years. On average, a person with Alzheimer’s will spend more years (40% of the total number of years with Alzheimer’s) in the most severe stage of the disease. Most AD sufferers don’t die from a lack of brain functioning. Death is usually from secondary disease or causes that have resulted due to the presence of AD. In later stages the afflicted patient becomes immobile, has difficulty swallowing and becomes malnourished. As a result, it is not uncommon to see in the Severe Stage of AD pneumonia, sepsis, urinary tract infections and fractures.
Myths about Alzheimer’s Disease.
Whenever there is a lack of official information, myths often arise. These can lead to inappropriate concerns or, worse, no concern. In these cases knowing what is wrong is just as important as knowing what is right.
Myth- Memory loss is a part of growing older. Truth- Memory loss that interferes with activities of daily living is a sign of AD.
Myth- Only old people get AD. Truth- 200,000 people younger than 65 have the disease.
Myth- Using aluminum products can cause AD. Truth- Studies have failed to show any such connection.
Myth- Aspartame (the artificial sweetener found in products like NutraSweet and Equal) causes memory loss. Truth- After 100 studies, the FDA says, “No, it doesn’t.”
Myth- Vitamins, supplements, NSAIDs, and memory boosters can prevent AD. Truth- There is no scientific evidence that this is the case.
Myth- All people with AD become violent and abusive. Truth- AD can be frustrating and frightening for the patient and they can act out, but with proper caregiving those events can be minimized.
Caregiving and Alzheimer’s
Besides medication administration and side effect control, AD caregiving boils down to proper management of the patient and their environment. Care for the AD patient is essentially the same care you would give any Dementia patient. Because of this, the section on caregiving will be presented after the review of the other Dementia-causing conditions.
Vascular Dementia (VD)
Vascular Dementia is a general term relating to cognitive impairment caused by cell death due to impaired blood flow to the brain. It is usually stroke-related, but could be caused by other events like a botched surgery or any significant loss of oxygen supply to the brain. VD can occur suddenly, as with a major stroke, or gradually over time as a result of multiple “silent strokes” (small strokes that have no outward symptoms). VD can also occur alongside Alzheimer’s disease, in which case the condition is referred to as Mixed Dementia.
Vascular Dementia is the second most common form of Dementia. The prevalence of VD increases with age, occurring in 1.2 % to 4.2% of people over the age of 65. People who have had a stroke are 9 times more likely to develop VD than those without a stroke. Unlike Alzheimer’s, VD is more common in men than women. People with atherosclerosis (hardening of the arteries) are at greater risk for VD.
Vascular Dementia is not a disease. It is a condition that is the result of any vascular problem that deprives the brain of the supplies it needs, mainly oxygen. Post Stroke Dementia may occur in several different ways. Single-infarct Dementia is the result of one massive stroke in a critical part of the brain dealing with cognition. Multi-infarct Dementia is due to strokes in several different parts of the brain leading to the same result. It could be a few larger strokes or several smaller stokes, including TIAs (Transient Ischemic Attacks). A less common stroke dementia is due to hemorrhagic (bleeding) stroke, caused by blood vessels bursting in the brain.
What Exactly Is A Stroke?
To better understand the symptoms and treatment of VD, a brief review of what a stroke is would be helpful. Strokes are due to a blood clot or the bursting of a blood vessel. Strokes are more likely to happen if the blood vessels are damaged or they are narrowed due to lesions or the buildup of plaque.
A TIA is an episode where the patient has stroke-like symptoms that clear up after 1 or 2 hours. It is due to a temporary restriction of blood flow within or leading to the brain.
Some strokes are called “silent strokes” because the area affected is so small they do not lead to any outward signs or symptoms.
Common signs of a stroke are a sudden occurrence of one or more of the following: numbness or weakness of the face, arm or leg – especially on one side of the body; confusion; trouble speaking or understanding; trouble seeing in one or both eyes; inappropriate dilation of the pupils for the surrounding light – especially if one eye is different than the other; trouble walking; dizziness; loss of balance or coordination and severe headache with no known cause.
Time is of the essence in a stroke case. Every second more brain cells are dying, never to be replaced. To save as much brain function as possible, prompt action is required.
Diagnosis (The Signs and Symptoms of Vascular Dementia)
In VD dementia symptoms may occur abruptly, over weeks or months in a stepwise manner, or may appear gradually over years. Dementia problems usually start to appear within 3 months of a stroke. Unlike the gradual, generalized decline as seen in Alzheimer’s memory loss, VD happens as fixed events in any part of the brain. As a result, the signs and symptoms are more variable than for AD. In addition to the signs previously listed for AD, common signs of Vascular Dementia are paralysis, wandering and getting lost in familiar surroundings, psychosis (hallucination and delusions), sudden depression, laughing or crying inappropriately, sudden bouts of aggression and sudden loss of bowel control.
The Adult Foster Care point of view.
It is very hard to tell the difference between the onset of AD versus VD. In the end, it doesn’t really matter. If you suspect any form of dementia, send the patient to the Doctor. In the end you will take the same actions, except after the Doctor diagnoses VD you will pay more attention to cardiovascular health.
Using the right tests, a Doctor can determine if the Dementia is from stroke events or not. He will then prescribe the appropriate therapies. He won’t be able to do anything about the loss of cognitive function, but he can prevent further deterioration by preventing future strokes.
The first goal of therapy in VD is to limit the damage caused by a stroke. In strokes, some of the damage to the brain is the result of cell impairment, not cell death. If treatment actions are prompt enough, some of the stroke effects can be reversed. After 1 to 2 hours the damage more or less becomes permanent.
The Adult Foster Care point of view
If one of your residents is suspected of having a stroke, call 911, lie the patient down with the head slightly elevated (on their side if you suspect they’ll vomit). Lie them down in an area where the paramedics can get to faster. Get the medical records ready for review and make a copy for the paramedics. At one time, first aid in strokes was to have the patient chew on an aspirin. Because of possible choking problems caused by neck paralysis, this treatment has fallen out of favor. Because this treatment has saved lives in the past, I would recommend that you discuss the use of aspirin during strokes with every patient’s doctor and put the doctor’s response into their chart as a standing doctor’s order.
The second goal of therapy is to minimize the chances for further strokes. This can be done through anti-platelet meds (blood thinners) and good cardiovascular system health techniques.
The third goal is to recover what functioning was lost through retraining and occupational therapy. AD medications can enhance these efforts. It is important to note that it has been shown that Donepezil (Aricept) has caused an increase of death in VD patients. An increase of confusion at night appears to be more prominent in VD, so sleep therapy interventions may be required. SSRI (selective serotonin reuptake inhibitors) antidepressants can be helpful with depression and emotional incontinences associated with VD.
If the strokes are controlled, the outcomes are quite good for Vascular Dementia. The VD patient may actually improve over time, given proper therapy. Unfortunately, preventing future strokes is difficult and may be unavoidable. If strokes persist mental decline will continue. 50% of people with VD die within 5 years due to the increased risk of further strokes. If dementia symptoms continue to increase, there is a good chance that silent strokes are occurring. TIAs are also major indicators of further serious strokes. The Doctor should be informed in either case.
Dementia with Lewy Bodies (LBD)
Lewy Body Dementia is the second most common form of progressive disease dementia. It is caused by abnormal deposits of a protein called alpha-synuclein inside the brains neurons. These deposits are referred to as Lewy Bodies, named after their discoverer, Fredrich Lewy. Over 1.3 million Americans have LBD, constituting about 10-15 % of all Dementia cases.
Diagnosis Specific to Lewy Bodies
Lewey bodies can be present in other kinds of Dementias and may be a secondary cause of mental decline. When Lewy Bodies are the primary cause of Dementia, the following symptoms become more pronounced: fluctuating levels of attention, drowsiness, lethargy or staring off into space (attention levels may change throughout the day or change daily), visual hallucinations or delusions, movement disorders (rigidity, shuffling walk, lack of facial expressions, balance and falling issues), and sleep difficulties (including daytime drowsiness). 50% of LBD cases have REM (Rapid Eye Movement) sleep disorder. While sleeping, patients’ movements are not blocked and they act out their dreams. Some people exhibit the above symptoms, yet show no mental impairment when given cognitive assessment tests.
LBD patients respond very well to ChEIs Alzheimer’s drugs. Movement disorders can be resolved by the use of Parkinson Disease medications. Sleep meds work very well in REM sleep disorders (avoid OTC sleep aids like diphenhydramine, as they can interfere with ChEIs).
Antipsychotic medication used for hallucinations must be used with extreme caution. Up to 50% of LBD patients who are treated with antipsychotics may experience severe symptoms of worsening cognition, heavy sedation, irreversible Parkinsonism, neuroleptic malignant syndrome (NMS, which is characterized by severe fever, muscle rigidity and breakdown that leads to kidney failure). NMS can be fatal. Typical antipsychotics are Haloperidol (Haldol), and Risperidone (Risperdal ).
The Adult Foster Care point of view
Hallucinations and delusions are some of the most troubling Dementia symptoms for caregivers. They can really wear you down in the long run. If you become desperate you might ask the Doctor to try Quetiapine (Abilify) or Clozapine (Clozaril). Some experts prefer them over other hallucination medications, though Clozapine requires weekly blood tests.
Like other progressive dementias, there is no cure and symptoms will get worse until death ensues. The disease can last from 2-20 years, with the average being around 5-7 years.
Parkinson’s Disease Dementia (PDD)
Parkinson’s is a brain disease that affects a person’s movement. In later stages many patients develop dementia. Lewy Bodies appear to be a major factor. Some experts differentiate the two by when the dementia occurs. Patients whose dementia occurs before or within 1 year of Parkinson's symptoms are diagnosed with LBD. People who have an existing diagnosis of Parkinson's for more than a year and later develop dementia are diagnosed with PDD.
Treatments are the same as in LBD, with the exception of paying more attention to movement disorder side effects.
Caregiver Considerations In Dementia
There have been whole books written on the subject of Dementia caregiving. A full discussion on the subject is well beyond the scope of this article. I will, however, pass on some keys points, overviews, and a summary of Adult Foster Care issues I feel are important.
The Family of the Patient
The Dementia patient’s family should be an integral part of their life. They can provide emotional and social support for the patient and for you, the caregiver. They can also supply extra resources that you may need. They are another tool in your caregiver tool box. But, like all tools, they need to be sharpened and utilized with skill.
Educate the family with what is going on and what they can expect out of their relative as the disease progresses. If they know what to expect, visits will be longer and more enjoyable. Remember that they know less about Dementia than you do and need your help to effectively relate to the patient. Teach them how to communicate differently, about the limitations you see in the patient and how to enjoy the relative, despite the handicaps.
Monitor the family’s actions to avoid financial and emotional abuse.
Involve the family with suggested activities, such as recording memories, scrapbooking (making a memory book), supplying family photographs and other memorabilia, greeting card signing and mailing, and car rides. These times will supply enrichment and mental stimulation for the patient and give you a break from the client. Give the family assignments that will motivate them to return and add meaning to their visits.
The patient may look normal on the outside, but is handicapped mentally on the inside. As such, they cannot interact in a normal fashion with their surroundings. The caregiver must adjust the caregiving to accommodate this need. Caregiving is best when it is structured, respectful, and friendly.
Some suggestions are:
Establish routines - Doing things the same way each day reduces the complexity in their life that they are no longer able to deal with. It reinforces habits that ensure a greater cooperation from them. It provides a redirection point for agitation moments. You can say, “But this is the way you’ve always done things. You didn’t want to change did you?”
Surround with the familiar - Place in their room, where they sit and where they eat, familiar items from their life. Make sure to provide night lights to avoid night time disorientation.
Reduce complexity - Limit the choices they have to make. Provide clothes that are easier to put on and take off. Break tasks down to one item at a time. Provide finger food and bowls instead of plates. Use straws and serve food a few items at a time.
Communicate differently - Talk slowly, using short, simple words and phrases. Focus on one item at a time. If they become aggressive, acknowledge their feelings. Address them by their name and identify yourself often. If the patient becomes delusional, NEVER confront the delusion directly. Handle the situation by redirection or distraction. For example, if they say the sky is red, respond by saying, “What a lovely shade!” and move the subject to something else. Avoid baby talk and try not to interrupt.
Control the patient by controlling the environment - Use a gentle, calm approach. Reduce distractions. Provide a soothing environment (calm music, fish tanks aromas, etc.). Establish toilet schedules. Provide magazines with pictures instead of words. Don’t expect too much from the patient. Kick start the patient by initiating the task for the patient then letting them finish. Watch for repeating patterns of agitation and rearrange things to disrupt the pattern. Use signs and pictures, clocks and calendars, family photos, and a list of daily activities to reorient the person when he or she gets confused. Monitor TV programs and avoid shows that could lead to paranoia or agitation.
Control wandering - Put alarms or bells on doors. Place child safety covers on door knobs. Make exiting complicated. Inform neighbors about the potential of wandering so they can help you keep watch. Place an identification card on the patient at all times, including at night. Provide a routine of walks. Be ready with plenty of distractions.
Control sleeping - Physical activities will help the person feel more tired at bedtime. Walk with the person during the day. If the person seems very fatigued during the day, give them a short rest in the afternoon to regain their composure. This can lead to a better night’s sleep. But don’t let them sleep too long – too much daytime napping can increase nighttime wakefulness. Also, limit the patient’s caffeine intake. Ask the person if they would like a small snack before bed. Use sleeping medication with caution, because some interfere with their dementia medications and other may cause Parkinson’s disease-like symptoms.
The Adult Foster Care point of view.
As cognition declines, inhibitions will also be reduced. The patient may become aggressive, abusive or swear more. Other abnormal behaviors may arise that normally would be inhibited, like wandering, taking things apart, getting into other people’s property and undressing in public. Do not take things at face value. Don’t be shocked, or take things personally. Have a plan before these things arise. Train your staff and the family as well. Remember that you cannot use physical or chemical restraints until you get a doctor’s order.
You are a major part of the Dementia equation. You must manage yourself just as well as you manage the patient and your home. Here are a few thought and tools that you can use.
Stress - A major source of stress comes from what we expect from the patient’s behavior. If you realign those expectations, stress will be reduced. Stress also comes when you push yourself too hard. Take care of yourself. Get plenty of rest, pace your duties, and eat properly. Recognize the warning signs in yourself and head things off before they become a problem. Taking walks with the patient or doing yard work are good stress relievers. Get plenty of help from outside sources. Utilize the family to help relieve the burdens. Talking with caregivers helps. Join a caregiver forum on the internet.
The Adult Foster Care point of view.
Since you live with the patients, getting time away is very important. Hire part-time help and get away for a few hours (and not just to go grocery shopping). Make it a part of your budget as an operating expense. That way, going to the movies becomes a tax deduction.
Observation/ Assessment Tools
Observing and describing behaviors is very subjective. It is also hard to track the changes in a slowly progressive disease. Here are a few tools to help.
A Mini-Cog is a test that you give the patient. It helps to quantify behaviors and tracks changes over time.
1. Ask the patient to listen carefully to and remember a list of three words.
Example: Fish, House, Truck
2. Instruct the patient to draw a simple clock or put in the numbers on an already drawn circle. Ask the patient to draw in the hands of the clock to read a specific time, such as 9:10. Allow 3 minutes for the task. If they can’t complete the task, move on to step 3.
3. Ask the patient to recall the list of words from step one.
Give 1 point for each word remembered. Give 2 points for a normally drawn clock. No points for an incorrect clock.
Keep scores in the patients chart and track them over time. Use the test and it’s scores when communicating with the Doctor. Be sure to give the doctors a full copy of your test so they can understand your scoring method. Give the test to all your patients on a regular basis to help in earlier detection of dementia-related diseases.
Sudden dementia might actually be a stroke. Prompt recognition is vitally important.
Look at the pupils to see if they are dilated correctly for the light or if one is big than the other.
F.A.S.T. test (recognizing stroke symptoms)
F = FACE Ask the person to smile. Does one side of the face droop?
A = ARMS Ask the person to raise both arms. Does one arm drift downward?
S = SPEECH Ask the person to repeat a simple sentence. Does the speech sound slurred or strange?
T = TIME If you observe any of these signs, it’s time to call 9-1-1
Book: The 36-Hour Day A Family Guide to Caring for People With Alzheimer’s by Nancy L. Mace M. A. and Peter V. Rabins. M.D. John Hopkins University Press
Alzheimer’s Association. http://www.alz.org/index.asp
NIH Senior Health. http://nihseniorhealth.gov/alzheimerscare/homecare/01.html
National Stroke Association http:www.stroke.org
Dementia is an inevitable part of elderly care today. All indicators points to its prevalence becoming greater as the population continues to age. Maybe in the future there will be a cure, but for now Care Providers and their skills are the best chance Dementia patients have in living out their lives with as much peace and dignity as they can. Caregivers must become familiar with the different causes of Dementia and their associated therapies to ensure the best possible quality-of-life outcomes. Be patient with their oddities, be firm with their routines, and be flexible in your attitudes and diligent in your watchfulness.
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11. Multi-infarct Dementia. Wikipedia The Free Encyclopedia.
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23.Dementia and Alzheimer’s Care, Preparing and Planning for the Road Ahead. HelpGuide.Org http://www.helpguide.org/elder/alzheimers_disease_dementias_caring_caregivers.htm
24.Edward M. DeSimone II RPh, PhD, FAPhA, Laura Viereck PharmD. Alzheimer’s Disease Increasing Numbers, But No Cure. US Pharmacist. Jan 2011.
25.Kristin S. Meyer PharmD, CGP, CACP, FASCP, The Pharmacist’s role in recognition and management of Alzheimer’s. Drug Store News Pharmacy Practice. March/April 2010
26. Greg Pelegrin, PharmD, Understanding Alzheimer’s. Pharmacy Times, Central Nervous System Issue. March 2010.
27. Nancy l Mace MA, Peter V. Rabins MD MPH, The 36 hour Day a Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementia Illness, and Memory Loss in Later Life. John Hopkins University Press Third Edition ISBN 0-8018-6148-9
Dementia: Patients Don’t Act The Way They’re Suppose To
An AFC Overview of Alzheimer’s and other Dementias
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