The purpose of this course is to educate and instruct the health care worker in the understanding of the Alzheimer’s patient with new advanced modalities. To enhance the knowledge base of the student and help with the care and compassion of the AD patient.
Alzheimer’s Disease (AD) is one of the cruelest diseases known to man. It strips the life right out of many families. Many families are effected by Alzheimer’s disease in one way or another. The longer we keep people alive the more and more Alzheimer’s patients we see. Many times this insidiously disease sneaks up on a person just as they were reaching retirement, it changes their remaining years and all the plans and dreams of the patient and everyone involved in their lives. The Alzheimer’s patient, is unique in their own way their bodies thrive, but their minds become someone we don’t even know. To be married to a person for most of your life then in a very short time; the face is the same, but the person behind the face has become someone you do not even know.
Alzheimer’s Disease (AD) is named after a German neurologist, Alois Alzheimer, he lived from 1864 to 1915. This disease is sometimes called, ”Primary Degenerative Dementia”. The etiology of this disease is unknown, there are many factors that may contribute to the potential (we will research some of these later; for now let us look at the pathophysiology.)
We know there are neuropathology and biochemical changes in the brain of an Alzheimer’s patient. Upon autopsy they have found tangled masses of nonfunctioning neurons, and other neurons with deposits of proteins, or plaque. The changes occur mostly in the cerebral cortex of the brain and result in the decreasing size of the brain. With the decreasing of size and decreased numbers of neurons the over all function of the brain declines and then we see deficits in the areas that control intellectual functions; such as memory, thinking, judgment, and behavior. When they are trying to find a diagnosis of AD they use a criteria consisting of a failure in at least four cognitive areas; memory, use of language, personality, and calculating skills.
Many patients with AD get very frustrated with these tests, many just refuse to participate because they don’t understand the questions that are being asked.
Mood and personality changes become apparent, causing alterations in family and social relationships. The patient begins to have problems with work and the everyday functions of life. There is a gradual onset, the disease progresses over 3 to 20 years. It only gets worse and worse. AD occurs in both men and women.
When we look at the biochemical aspect, we are looking at the neurotransmitter, and acetylcholine. Acetylcholine is specifically involved in the process of memory.
Scientist do not know for sure the exact cause of Alzheimer’s, the belief is still that Alzheimer’s is caused by many factors. Genetic and environmental factors are being associated with the cause. The genetic component of this disease is looking at the heredity factor of transmission, and the illnesses passed on from parent to child. How does heredity work? Every healthy person has 46 chromosomes, they come in 23 pairs. Most of the time you receive one chromosome in each pair from each parent. In each one of these chromosomes, DNA forms two long, intertwined thread like strands that carry inherited information, in the form of a gene. A gene is the basic unit of heredity. There has been some possible connection with the disease of Alzheimer’s disease and three chromosomes, 14, 19 and 21. The 19th chromosomes seems to be the closest link they connect to this disease. The problem with this theory is not every one with this chromosome gets AD and some people with AD do not have a positive 19th chromosome. Persons with downs syndrome have an extra 21st chromosome and many times as they age they develop characteristics of AD. This disease is found more often in the Caucasian population.
Back in the eighties when Alzheimer’s began to take on a whole new meaning to the medical world, we were looking at the possibility of aluminum fibers in the brain. There have been numerous studies since this time and they continue to find higher amounts of aluminum in the autopsy of Alzheimer’s patients, but not in all of them. Aluminum is a common element found in the crust of the earth, it is found in numerous household products and in many foods. As a result it is believed that people who take in high amounts of aluminum in things like antacids and antiperspirants may have a higher risk for developing AD. This is still just a theory. Zinc has also been questioned in its relationship to Alzheimer’s disease. It is looked at in two ways, too much and too little. Too little zinc was found in the biopsies of Alzheimer’s patients in certain regions of the brain. Then in more recent studies it is suggested that too much zinc is causing the beta amyloid from the cerebrospinal fluid, (the fluid that bathes the brain,) to form clumps that are similar to those found in the Alzheimer’s patient. Food born poisons; toxins in foods have been questioned in their possible attributes to the disease of Alzheimer. Two substances found in the seeds of certain legumes in Africa, India, and Guam may cause nervous system damage. Both of these enhance the action of a substance called glutamate, which has also been linked to Alzheimer’s Disease. In Canada, there was an outbreak of a nervous system disease similar to Alzheimer’s that occurred after ingesting mussels contaminated with demoic acid. This chemical like the legume substances enhances production of glutamate. Glutamate attacks the nervous system, hence the neurological damage in the brain of the AD patient. Again this is just a theory.. Viruses have brought some attention to the causative factors related to Alzheimer’s disease. In some nervous system diseases, a virus is the culprit. These virus may be lurking in the body for decades before a combination of factors and circumstances stir them into action. For years, researchers have believed it may be a virus or other infectious agent that is a contributing factor in Alzheimer’s disease.
There are 4 million Americans currently effected with AD, and this is only what we know about. Alzheimer’s accounts for more then 50% of all dementia’s suffered by the elderly. Alzheimer’s is not always a disease that effects only the elderly, 5% of AD patients are touched at a much earlier age; as early as their 40’s and 50’s. It is more common in persons sixty-five and older. The risk rises with age, approximately 1% of the population from the age of 65-74 and 25% for those over 85 will develop Alzheimer’s disease. Without a treatment or a cure over 9 million people will be affected by 2040.
Our prison systems are experiencing the impact on these statistics. With people living longer, life sentences are greatly increasing. With this increase we are seeing a much larger number of prison inmates with Alzheimer’s disease. Many of these inmates don’t have a clue of where they are, or what they did wrong. Some of are prisons have become the equivalent of a long term nursing home. A place where total patient care is needed. Not many personal in the prison system are trained in nursing care and more important, they are not trained in the care of the Alzheimer’s patient. It is not only the prison systems that are feeling the great pressures of increasing life expectancies. It is in all aspects of our society.
The problem only promises to rise as more and more of our baby boomers reach senior citizen age. Medicare and other assistance from the government is already going broke yet the cost right now for AD patients are; 12,000-16,000 per year to care for a patient at home, excluding medical expenses and indirect costs such as caregivers and lost wages. 47,000 per year within indirect costs. Nationally; 20 billion dollars is being spent for nursing home care, 38 billion dollars for home care, 40 billion for caregivers services. Grand total...$98 billion per year is being spent on the disease of Alzheimer’s/Dementia..
Between 1990 and 2010 the amount of AD/dementia cases in the developed countries is projected to be 7.4 million to 10.2 million a 37 % increase. In the less developed countries it is difficult to project but the rough estimate for the year 2010, people 65 or older in these countries may rise to 183 million to 325 million, this is a 78% increase. These numbers could change IF we find a cure or a cause.
Alzheimer’s is classified into stages. These stages are 1, 2,3 , they are related to the progression of the disease. Always remember each patient is totally unique and may not follow all of these stages. These stages still give you a good base line.
In Stage One some of the signs and symptoms you may see are; memory loss, difficulty finding words or finishing thoughts and or sentences, remembering names is a big one. (Using pictures of family members is really helpful with this area.) Poor judgment, bad decisions, (this would cause many of us to be DX with AD), disorientated, less outgoing, blames others for his mistakes (another universal), difficulty completing their own ADL’s.
Stage Two- As the disease progresses you may see; restlessness (this is one of the hardest areas to deal with (offering diversional activities helps, like folding clothes). Some others are sleep disturbances, dull senses, bowel and bladder incontinence, loss of impulse control, many use foul language, (this one is surprising to family members, coming from there sweet mother or wife who never used any bad words), movement and gait changes (walks slower or shuffles), communication problems (can not follow directions, has problem reading and writing and statements, might not make any sense). Agitation; This is a big one, this is where special training in Alzheimer’s comes in. I have been a nurse for over 17 years and attempted to work with a AD patient prior to my AD training and was embarrassed to say I did not do well with the behavior modification.
Stage Three- The last stage, the progression is usually very difficult for all involved: Seizures can occur, the patient usually cannot communicate (I had a patient who forgot how to speak English, she went back to her native language and spoke only French. She also could not remember how to eat, yet she played the piano like a master.) The patient may not recognize themselves or others. I had a patient look in the mirror and have a fight with her reflection for letting people in the room, she was looking directly at her self and had no clue it was her, she had lost her self. Total patient care with all Activities of Daily Living are needed at this point. Swallowing becomes a great problem and many AD patients choke when they are being fed. This is many times one of the causative factors in their decline leading to coma and death.
A few Signs and symptoms that need to be addressed in more detail are to follow:
People with AD are disorientated, to person, place and time. They wander. Many times from home or from the nursing facility they are in. many times the caregiver has no clue where they have gone. There have been cases of AD patients being lost for long periods of time and even worse found dead from the elements. This can happen in the blink of an eye. The Alzheimer’s patient has with a small child has no recognition of danger, The world and its hazards make no sense to them. They may walk right into oncoming traffic, or into a river. AD patients seem to have a need to walk, just walk, many skilled nursing units set up for AD patients have halls that are in a circular fashion, with no corners, this allows the patient to continually walk without running into walls. The AD patient will continue to walk into the wall with no concept to turn, this can become very frustrating for them.
This was one of the most perplexing symptom I saw when I first began my nursing. This occurs in the late afternoon or early evening. As daylight ends and the darkness begins so does confusion, restlessness, and other intensified behaviors. Like clock work. It seems that the full moon makes it even more pronounced.
Sundowning may be related to fatigue & hunger. Inadequate lighting may cause a patient to see things that are not there. Perhaps AD patients are afraid of the dark. There is no real known reason for this phenomena.
Seeing, hearing, or feeling something that is not really there. Senses are dulled. Effected people see animals, insects, or people that are not present, (as we know it) The patient may feel bugs on them, or they feel like someone is touching them. This can cause a lot of fear, and acting out. All of this is very real to the patient. To try and tell someone what they see is not real, only makes it worse. You do not want to feed into the hallucinations but you also do not want to take away what is very real to them, perhaps helping them remove the problem would be more beneficial.
People with AD may think they are God, or the president, some believe they are in jail and people are trying to murder them (perhaps this is truly how they feel). They may think the nurse or caregiver is someone else, some one they once knew. Again do not feed the delusion, but also do not try to change their ideas. The ideas are theirs and are very real to them. Offer a diversion, or just don’t make an issue of it, let them be themselves. If the delusion is causing fear, try and find away to remove the fear from them. Gain trust with them. Take them for a walk outside in a locked gated area, let them feel the freedom of the sun or wind, brighten up their room, give them some sort of job to do allow them to be productive.
These are extreme responses. The person reacts as if a disaster or tragedy occurred. They may scream, cry or become very agitated and combative. These reactions occur many times from too much stimuli at one time. Too many people in one area at one time, television, music, asking to many questions, all this becomes very chaotic for the Alzheimer’s patient. A dining room in an Alzheimer’s unit with the TV going and multi nurses talking can set off the whole room of patients. Be aware. Keep it simple and decrease the potential for over stimulation. 8
Many people with AD are easily agitated and others live in a constant state of agitation. These patients many times become combative. These behaviors may be caused by pain, a feeling the AD patient doesn’t understand any longer, many times they can not verbalize what they are feeling, but their body knows to react to it. Also the fact that the brain of a AD patient seems to be receiving large amounts of stimulus all the time, this may cause some agitation and may be one of the causative factors in the patient getting a lack of sleep. Their brains never stop working.. Many AD patients have a hard time sleeping and eating and this leaves them very irritable. Before this situation accelerates to hitting, grabbing, and biting, you need to remove the patient from a situation that will only enhances the problem. Calmly and quietly take the patient to a safe place, assess the possible reasons for their behavior and avoid it as much as possible.
If a patient does get a hold of your arm, or body part it may be hard to get them to release. Stay calm, have some one else talk to them to take the attention away from you, when their grip relaxes quickly pull away. Do not try to physically restrain a combative patient! Remove them from the area if possible and let them calm down; many times if you remove the causative factor, (such as a particular nurse or object), the behavior may cease and the patient forgets all about the problem.
Many times patients may scream out when they are agitated or afraid. This may be their only means of communication, assess the cause, and offer a calm quite place to let the problem dissipate. Soft music can help, a familiar face, or a favorite nurse can be all that is needed to calm down the patient.
Sexual behaviors are called abnormal when they are inappropriate, to person, place, and time. Remember AD patients are disorientated to person, place and time, so this can become very confusing and hurtful to many. The AD patient may lose the ability to control their sexual behaviors. Normally a person does not undress and expose themselves in front of others, or masturbate freely in front of strangers.
Normally they would know their sexual partners. Many times the AD patient thinks a person is someone else and makes sexual advances to them. This does not mean they are trying to do anything wrong, they simply do not remember what is right or wrong. This can be very upsetting to the spouse of an AD patient. After years of marriage, the healthy spouse doesn’t understand why their partner is acting sexually inappropriate to another man or women. Education is very helpful to family members in these cases..
The nurse needs to remove the patient from the location if the behavior is inappropriate, but never does the nurse scold the patient. This is a completely normal feeling and should never be made fun of, or belittled. It needs to be explained why it is not O.K. at that time, or place, or with that person. The nurse needs to encourage the persons sexual partner to show affection. The couples normal practices are encouraged, (this can be very awkward for both). The AD partner may not have a clue who their spouse is, questioning why are they touching me, and sometimes getting agitated and combative. The healthy partner, may feel very alienated by this stranger in their spouses body, they may be afraid or confused about the whole situation. Be compassionate with both people involved in these issues, it is such a painful journey we must all take a moment for some empathy; that could be you or your spouse someday.
To repeat over and over and over again. This can be with words or with movements. This is where the folding of laundry comes into play, they can fold the same load of laundry over and over again, this will keep them amused, busy and content and they can feel useful. Or the patient may ask the same question repeatedly, this can become very annoying to those around them; in fact many times in an AD unit this behavior can set off the whole unit. The patient should be allowed to continue with harmless behaviors if these behaviors are not becoming an irritation to others. If this is the case they can be encouraged to change locations. Distractions, are the best remedy for most of the AD behaviors.
AD patients have very poor memories, so a distraction or a new location can make most bad situations NEW and BETTER.
An Alzheimer’s patient can be one of the hardest patients you will ever care for. As you can see there is much involved in this disease and it is only going to get worse as the elderly population grows. Everyone will be affected in some way. Education and compassion are VERY important part of the nurses role. This will enhance the lives of their patients as well as their own. Family members need the love and support of the medical team to enable them to get through this very difficult time in their lives. In conclusion I want you to put yourself in the shoes of the Alzheimer’s patient, feel what it feels like to walk their walk, look through their eyes, see what they see.. To lose your self from the inside out, to lose control of your thoughts and actions, living in a world of constant strangers, even you children are unknown faces to you.
So, when that AD patient hits out at you or repeats a question a hundred times, don’t get angry or frustrated with them, breath, then use some of the skills you have learned.
Don’t try and change their minds, let them be, keep it simple, no increased stimuli, offer diversions, keep them busy, let them feel useful, and give them freedom to wander in a safe environment (outside on occasion). Communicate in a manner they can understand, assess their body language and facial expressions for possible causative factors.
Always remember they are your mother, your sister and maybe even yourself. If it gets to much sometimes, and it will, you are human. Take a break, go out side, breath fresh air and then start all over again; brand NEW, because they need you!
Remember to continue to educate yourself on this insidious disease; you can never learn to much. The more knowledge you have on Alzheimer’s Disease the more rewarding your job will be, and he greater quality of life your patient have; in addition their families lives will be too. You can make a difference.
Thank You and God Bless You.