IB Middle Years Programme- Personal Project- Alzheimer’s Disease

Personal Project

“I too like others think about the future. It’s hard (Sobbing)… It really is hard.”

Michael Ward

-Interview with Cris Strat-

Table of Contents

1.0 Personal Statement 3

2.0 Introduction to Alzheimer’s 4

3.0 History 5

4.0 Important Facts

and Figures 7

5.0 Characteristics of

Different Stages 8

6.0 Disease Mechanism 12

7.0 CAUSES FOR ALZHEIMER’S 13

8.0 CAREGIVING 14

9.0 Research Directions

9.1 Notable Cases 16

9.2 Interview and Conclusion

Living with

Alzheimer’s 17

Interview and

Review

1.0 Personal Statement

A personal project, allows us students to focus, discuss and research a subject of our choice.

Even though there are many subjects, which both interest us and compel us to deepen our

knowledge on their particular subject matter, only one can be chosen. After, much thought and deliberations with teachers, family and friends, I have chosen to dedicate my entire personal project to my great grandmother, an outstanding woman, which died 8 years after being given the diagnosis that she was suffering with Alzheimer’s disease. In these 8 years, she endured a great amount of pain and suffering, and spent a great deal of time fighting with this devastating and terrible disease, for which there has been no cure or efficient treatment to hinder its progression.

As Alzheimer’s disease has not only affected my own family, but continues to afflict one person every 70 seconds somewhere in the world, I am certain that the subject I chose is one of absolute interest to anyone. Unlike many other diseases, Alzheimer’s disease is one of which we do not know a lot about and one which questions the laws of life and of medicine through the changes it produces and the effects it has on those suffering with the disease. In this personal project, dedicated to all sufferers and all those who have died because of this disease, I will highlight the principle points in this condition’s causes, treatment possibilities, and effects it has on sufferers.

Through hours of in-depth literature searches, review of highly specific and detailed

medical and scientific information, and by interviewing an Alzheimer’s patient, I will

be able to conclusively write and complete a personal project, which will open your eyes to the

disease itself, will enlighten us on aspects of the disease we did not think about before, and

will answer the questions we have always had about Alzheimer’s disease. I am able to say without a doubt that after watching tens, if not hundreds, of videos and movies which feature real-life sufferers at different stages of their disease, telling their own life-stories and portraying their true suffering in an unbelievably powerful and intensely emotional way, it is impossible for viewers not be affected and compelled to help and to learn more about this practically almost “unknown” disease.

I was almost brought to tears knowing that the sufferers in these videos were to lose their

present short-term and possibly long-term memories completely and would soon only be able to remember some unclear aspects of their childhood and other small aspects of their earlier lives. In my personal opinion, the question of whether or not Alzheimer’s disease should be researched is practically pointless, as Alzheimer’s disease affects our friends, our family, and the people we love most, and for this very reason we must stand up and do what is right. Imagine waking up one day and not being able to remember anything that has happened to you in the past 5 to 10 years and being completely lost, having no place whatsoever to call home. Imagine having your friends turn into enemies, your family, your children and all those around you, being more distant then strangers. Imagine losing your coordination, your abilities and strength,… imagine losing yourself. This is what living with Alzheimer’s disease means.

2.0 Introduction to Alzheimer’s

Dementia is the progressive mental deterioration that can occur in middle or old

age persons, due to generalized degeneration of the brain. It is the most common cause of premature senility.

Oxford English Dictionary

Alzheimer’s disease (AD) is the most common form of dementia known today.

AD is considered a progressive and degenerative form of dementia, developing in the brain, destroying the mind, the body and all principal mental and bodily functions overtime. This disease leads to irreversible impairment in memory, language, decision making, time and place orientation, and judgment. Alzheimer’s is one of the worst and fastest growing diseases in the world, expected to affect 1 in 85 people by 2050. However, unlike other neuropsychiatric illnesses, Alzheimer’s is incurable and is not expected to have a cure discovered in the near future. Alzheimer’s currently accounts for two-thirds of all dementia cases and is estimated to increase significantly in the coming years. This personal project will cover the most important sections and points on the disease, it will include information on the characteristics, causes and remedies for the disease. It will also take a closer look at the different stages of the disease, the history behind it, and its prevention and management. Towards the end, readers will be able to understand symptoms that can be found in pre-dementia cases, how it can be diagnosed, and any important or notable cases of Alzheimer’s disease that have occurred over the past century.

3.0 History

The principle ideas and characteristics behind dementia, in general, and Alzheimer’s disease, in particular, have been known for over one thousand years. Ancient Greek and Roman philosophers and physicians have linked old age with the concept of senility and dementia a long time before dementia was medically diagnosed. However, it was not until the 20th century when Alzheimer’s disease was researched, medically labeled and officially classified as being a neurodegenerative disease. The discovery and the name “Alzheimer’s disease” is directly attributed to Alois Alzheimer, the medical professional who diagnosed the first case. Alois Alzheimer’s was able to successfully diagnose a 50 year-old woman, who he called August D, as her maiden name was unknown to him. August D was the short form to Auguste Deter, who was born in May 1850 in Kassel, Germany.

When psychiatrist and neuropathologist Dr. Alois Alzheimer met Auguste, she was already exhibiting symptoms known today as being typical to Alzheimer’s disease. Auguste was suffering from loss of memory, delusions, and even temporary vegetative states. Auguste is known today as being one of the most intense and serious cases of dementia and Alzheimer’s disease. Auguste’s sleeping and eating patterns were also affected – she was usually unable to sleep, she would roam the house, dragging her sheets around with her and just screaming for hours in the middle of the night.

Her husband of ten years, Karl, was over his head with stress and troubles because of Auguste’s case. A railway worker for the German Railway Service, Karl

was forced to return to work after a few years of tending to his beloved yet deranged wife. Due to the need for his wife to be cared for and taken care of, on the 25th of November 1901, Karl took her to the Institution for the Mentally Ill and Epileptics, in Frankfurt, Germany. It was there that Auguste met Dr. Alois Alzheimer. Alzheimer followed her case until her death in 1906, this being approximately five years after meeting her. After Dr. Alzheimer released the case to the public, other suspected sufferers were tested. Eleven similar cases were reported in medical journals, already using the medical term Alzheimer’s disease over a time frame of five years after Auguste’s death. For most of the 20th century, Alzheimer’s disease was the diagnosis considered for patients and individuals between the age of 45 and 65 who developed symptoms of dementia. It was not until recent years, when the term senile dementia of Alzheimer’s type was released to describe cases over the age of 65, whereas younger or middle aged patients were classified as having the typical “Alzheimer’s disease”. This change was put into place after it was discovered that both younger and older patients are subjected to a risk of acquiring this devastating disease, regardless their age or geographical location.

4.0 Important Facts and Figures

Although the majority of Alzheimer’s patients are individuals over the age of

65, in 2006 there were 26.6 million sufferers worldwide.

As mentioned in the introduction, Alzheimer’s disease is one of the fastest spreading and growing disease in the world, predicted to affect 1 in 85 people globally in 2050. This means that, if the population of the world were to reach the forecasted number of 10 billion, in 2050 there would be approximately 117.6 million sufferers – a four-fold increase in 44 years. Life expectancy in AD sufferers is greatly reduced, the mean life expectancy after the patient has been diagnosed being around 7-8 years, this depending on medication and the stage it was detected at. The more shocking amount is a single digit percentage of patients surviving with Alzheimer’s disease over the fourteen year mark – 3 %.

Alzheimer’s disease is the fundamental cause of death in only 70% of cases, the rest having heart problems, diabetes, pneumonia, dehydration, repeated falls, and decreased functional levels as causes of death. The most reported cases world-wide are in Australia, Western Europe, South America and North America, these areas having more than 250 cases per one hundred thousand inhabitants. The least cases are found in Asia, Africa and parts of Eastern Europe.

5.0 Characteristics of Different Stages

Alzheimer’s disease is sub-categorized into four principle stages: pre-dementia, early, moderate and, respectively, advanced dementia. In this section, the specific characteristics, the changes that appear, the mechanism of the disease, its progression, and the path taken by the disease will be highlighted in detail.

The first stage that will be discussed is Pre-dementia: the first symptoms of

dementia and Alzheimer’s disease are usually mistaken by patients and physicians,

for signs of progressive aging, and family or work related stress. This is, however,

not always the case, and more than 50% of all suspected patients must be tested through the use of detailed neuropsychological tests in order to determine if they are dealing with dementia or stress related symptoms. Neuropsychological tests may reveal or predict AD within eight years of the illness beginning its path of neurological destruction. The earliest symptoms of dementia are noticeable memory loss (i.e. the patient is unable to remember recently learned information or figures), and the sufferer noticing a change in ability to complete the most complex daily living activities. Other symptoms may include problems with executive functions, the ability to function normally, think abstractly, and plan efficiently. Apathy is ,however, the most persistent neuropsychiatric symptom to appear at this stage of the disease and run well throughout the next phases of the illness. Pre-dementia has also been named and medically termed as “mild cognitive impairment”.

The second stage of the disease is Early Dementia. As the disease progresses,

the increasing memory loss and reduced ability to learn and memorize new information leads to a certain and definite diagnosis. Some early dementia sufferers may experience loss of perception and movement capabilities. One interesting fact about Alzheimer’s disease is that older memories and facts that were learned during the years of childhood or adolescence are remembered more vividly and with greater detail than ever before. Language problems consist in patient’s inability to speak fluently and difficulties in clearly communicating basic ideas and thoughts. Difficulties in fine motor tasks, such as writing and drawing, or in coordinating movements may occur and be present. However, they are rarely noticed by medical specialists and patients alike, as in the early stage of Alzheimer’s, patients are able to perform and carry out tasks independently, without need for assistance.

The third stage of the disease is Moderate Dementia. The patient is, at this

point in their disease, unable to carry out daily living tasks without the help of a

medical professional, family member, or guide. The sufferer begins to have worsened and more serious problems with memory, especially with short-term memory and recalling information that was learned within a short time interval. Problems with coordination, meaning the ability to get dressed, use both hands at the same time, or multi tasking, are significantly affected. Some patients must be put in wheel chairs at this stage, as caretakers are worried for their safety and the wellbeing. Two or three of the five senses may have deteriorated greatly, by the time the patient enters the third stage of dementia.

The patients may have intensified problems and slurred speech, may have newly discovered problems with sight, and may require some kind of visual aid device,

such as glasses or contact lenses. Another characteristic of this third stage is the deterioration of organ functions. As the organs continue to deteriorate, patients may experience, for example, urinary incontinence (i.e. they are no longer able to withhold the urine in their bladder). Alzheimer’s patients are at this point transferred to a full-time treatment facility or nursing home, or a family member or full-time nurse is brought into the home of the AD sufferers to help them with personal and hygienic tasks that must be carried out daily. At this stage in dementia, the long-term memory is also heavily impaired, and patients begin to

forget faces, names and information about friends, family and acquaintances.

The last and final stage of Alzheimer’s disease is Advanced Dementia: the patient is no longer able to function alone, sufferers must be taken care of around the clock by a health care professional. Language, reading and writing have been reduced to minimal amounts, and the patient is unable to form long or sophisticated questions, answers or even sentences. Towards the end of their journey, dementia or Alzheimer’s patients completely lose their ability to speak completely. However, interestingly enough, patients may be able to understand and return emotional signals and gestures. To compensate their loss of speech and verbal capabilities, patients may either draw, mouth words or indicate through gesture the things they want to say or the points they want to get across.

Just like throughout the past stages of their disease, some patients remain very aggressive, they may present a heightened and possibly even extreme amount of apathy and exhaustion. In the final stages, patients will be unable to feed themselves, will ultimately not be able to perform even the most simple tasks without assistance and, as mobility and muscle mass deteriorates, patients will be bedridden or wheelchair-bound as they are not able to move around safely. The death of advanced AD patients, in general, never occurs because of the disease itself but, as mentioned above, because of the reduced organ functions, deterioration of the immune system, pneumonia or infection of the pressure ulcers (bedsores), or even suicide caused by maximal depression.

6.0 Disease Mechanism

The exact mechanism of Alzheimer’s disease are still not completely known. However, medical reports from recent decades have suggested that the production and aggregation of beta amyloid peptide may be the reason. The accumulation of aggregated amyloid fibrils and the buildup of beta amyloid peptides have been proven to trigger the degeneration of neurons, as the former is considered to be very toxic for the cell’s calcium ion homeostasis, thus leading to induced programmed cell death (apoptosis).The fibrils have also been linked to inhibiting certain enzyme functions, to selectively building up in the mitochondria, and also stopping or greatly affecting the efficient use of glucose by neurons. Other suspected mechanisms for the occurrence of Alzheimer’s disease would be the inflammation of the brain tissue and release of certain cytokines, which are small cell-signaling protein molecules that are secreted by the glial cells of the nervous systems.

7.0 Causes for Alzheimer’s Disease

The causes of Alzheimer’s disease have been medically questioned and researched for decades, since its discovery. The first suspected cause was indicated in 1991, when the amyloid hypothesis suggested that, like mentioned above, the amyloid beta deposits must be the principle reason for the illness. This theory was, however, proven to be false after an experimental vaccine, meant to clear the amyloid plaques that formed in the cells, was unable of helping patients and did not have a significant effect on the symptoms exhibited by dementia patients. This then lead researchers to believe that the plaque was not the reason for Alzheimer’s disease. The theory was heavily discussed in international Alzheimer’s and dementia seminars, and meetings around the world. Almost all medical reports and researches have proven that the amyloid plaque itself might not be the cause for Alzheimer’s disease. Instead, a close relative of the beta-amyloid protein may be the cause for the onset of disease in middle age and older men and women around the world. Today, the degeneration of the locus coeruleus, which is a nucleus in the brain stem involved with physiological responses to stress and panic, may be the cause of disease or may be the principal factor for a predisposition to be affected by Alzheimer’s disease or dementia.

8.0 Caregiving

Currently, diabetes, cancer, and Alzheimer’s disease are the main research topics in universities and medical labs around the world. As these three conditions have no available cures, doctors, chemists, researchers and scientists are working around the clock to find the solution to these pandemic-level diseases and illnesses. Alzheimer’s sufferers require treatment facilities where presence of on-site staff is a must for their safe survival. In the first stages, safety locks, memory tests and the labeling of household items and places is required for patients to stay safe and happy in their own environments. As the disease deepens into its path of destruction, patients have increasing problems with swallowing and chewing, and may have to be put on liquid diets through the use of feeding tubes. Then finally, in the last stage of the disease, patients will require 24/7 supervision by staff watching over their every action and move. At this stage in the disease, patients would require to be placed in a full-time treatment and nursing facility. Along with aging and the progression of the disease, many other diseases, problems or complications may arise in dementia patients, such as oral and dental problems, pressure ulcers, malnutrition, respiratory, skin, or eye infections, most of them due to hygiene problems.

All of these challenges, are both practical and financial problems, as treatment and specialized care are very expensive and, in some cases difficult, to attain. In families with a reduced income, the role of the main caregiver is taken by a spouse or very close relative. The greatest burdens for caregivers are the social, physical, economical and, most importantly, psychological ones. Caregivers of dementia-stricken patients are subjected to a 66% greater chance of also being afflicted with some sort of physical or mental disorder later in life. Caregivers have been reported to experience behavioral changes, depression, hallucinations, sleeping disruptions and, in worst cases, social isolation. Studies have shown that dementia costs for treatment and general care of Alzheimer’s and dementia-stricken patients is around 160 billion USD per year world-wide. The United States alone accounts for more than 100 billion USD per year of the total global costs in treating dementia patients, with an estimated cost of 18, 000 USD to 77, 500 USD per dementia patient, per year, this including both medical and personal costs.

9.0 Research Directions

In 2010, all the pharmaceuticals directed towards helping, ameliorating or curing Alzheimer’s completely, were counted and filed into different categories. It was found that there have been over 400 different pharmaceutical treatments taking part in 858 clinical trials worldwide. Most of the 400 pharmaceuticals are now nearing their final stages, before being given to regulatory authorities for further testing and review.

9.1 Notable Cases

Since its discovery by Dr. Alois Alzheimer in 1901, there have been many cases of Alzheimer’s reported around the world. However, the most notable cases were seen in the former United States President Ronald Reagan, the Irish writer, Iris Murdoch, and the former United Kingdom prime minister, Harold Wilson.

9.2 Conclusion and Interview

This personal project has been, without a doubt, one of the greatest projects I have ever done. I had the rare opportunity to meet an Alzheimer’s patient, I have been able to discover most if not all the aspects of a disease I had known very little about, and I was able to indulge in tens of movies and videos surrounding the concept of Alzheimer’s disease. As I said in my personal statement, … I dedicated this entire project to someone very close to my heart, my great grandmother. In her beloved memory I would like to end my personal project with a quote “Great Grandmothers are angels on Earth”. With love, care and compassion for those closest and most important to us, we are able to learn to cherish everything that is given to us and the marvelous world we live in.

Living with Alzheimer’s Interview

Cris Strat: Good afternoon, Michael. It is a pleasure to talk to you here today. Thank you for taking the time to have this interview with me today.

Michael Ward: Thank you for your warm welcome. I am here today to share my personal knowledge and

experiences with others. I want to educate others about this terrible disease and the ways in which they can

treat it and live with it.

Cris Strat: Michael, my first question is, since you learned that you are suffering with Alzheimer’s disease, what has your outlook on life been?

Michael Ward: I take each day as I best can and I go on with it. I still make plans, go on with my life, and I try to forget about the disease that I have. I live everyday as if it were my last.

Cris Strat: Michael, how long ago was it that you found out you were suffering from Alzheimer’s Disease? And was there any clear indication for yourself or for family members that you may be affected by this disease?

Michael Ward: Well, Cris, I did realize that things were a bit wrong and that things were just not right, but I mean, in the beginning I had no idea what was happening with me. I think the first time I heard

the term dementia or cognitive impairment said to me was when I first went to see the doctor.

Cris Strat: What are some of the effects, short term or long term, that you have witnessed, noticed or felt all this time. This referring to both mobility and short or long term memory issues, which have occurred since you were first diagnosed with Alzheimer’s Disease.

Michael Ward: Well, firstly, I can tell you that I think my memory is still quite good. Well, at least I think it is still good. Others have told me it is not great, but I don’t take that to heart. I mean… I know telephone numbers, and my car’s license plate number,… but sometimes things get pretty blurry. There are some things that I am sometimes unable to remember. I mean, I know this is one of the main effects this disease has on patients. If I knew and remembered everything, I would be at a college… I would be normal.

Cris Strat: Michael, are you having any difficulties to recognize family members and friends? Has Alzheimer’s Disease impaired your ability to recognize and identify who they are and

what relationship they have to you?

Michael Ward: Well, let’s see here. Ahh… I have my two sons. Yeah. I have two sons. The family is great, my wife and I, we have two kids — Two boys. The first boy has a PhD and the other… I can’t remember the other one. My parents on the other hand, yeah I see them all the time. My father — he used to own a butcher-shop and he also delivered beer and soda around to the people living in our city. My mother she… ahh… I can’t remember what she did. It’s pretty funny, I am 82 and they are still around. It is so great to know that someone who truly loves you is around no matter what.

(Note: This, however, is not the case. Michael’s mother and father died well over 10 years before

my interview with Michael.)

Cris Strat: Michael, I heard that you were very excited to come here today and take part in this interview, which will help me greatly in the completion of my personal project. However, I would like to ask you… are you aware of where you are right now?

Michael Ward: Ahh… Haha… Well, when you said that, I have just drawn a blank. I have absolutely no clue. Hmm… you know I just totally forgot where I am. I have no clue —

Cris Strat: Please do not worry, there is no problem. Michael, to help you out a little, we are in Konstanz, in south-western Germany. Michael, has there been any moment in your struggle with this disease, where you felt overwhelmed or scared?

Michael Ward: When I was first diagnosed , I didn’t know what was happening to me… I felt like I was on my own. There is one thing that I really hated and I still hate about this disease, which is… ahh…is that I

am unable to do the things that I used to do before on my own, using my own two hands and my own two

feet. I have always been someone that likes to do things… that likes to move, and now I can’t be that person

anymore. I am not the person I used to be.

Cris Strat: Another very important question from my part is whether you noticed that the

way you are seen or perceived by others, including your family members, has changed?

Michael Ward: People are always around me and are always there to help. They make sure that I am

healthy, that I am happy, that I have everything I want and need. They want me to join in with them, they want to help me and they want to know that I am content with the life I am now living. People have been really supportive. I am so lucky to get help from my family members and the Alzheimer’s Association. I can’t thank my doctors and those around me enough for what they have done for me. They have treated me with the same care and love as they used to before I was diagnosed. I think, in this perspective, things have remained the same – I am cared for and loved just like I used to be before any of this happened.

Cris Strat: Michael, it has been an absolute pleasure to meet you today. You are truly an inspiration and a wonderful ray of light and a breath of fresh air for those having the same disease as yourself. I hope that you are able to remain strong and motivated well into the future. I thank you Michael, for coming here today and taking this interview with me, you have been a great deal of help for me.

Michael Ward: Cris… You have been more that I could have ever expected. You have been so nice and kind to me. I have to thank you. It has been a delight to meet you. I too like others think about the future.

It’s hard (Sobbing)… It really is hard.

Michael Ward,

Boston, Massachusetts

Age: 82 years old

Diagnosed: 4 years ago

Interview taken: February 19th 2010

The Interview

Through choosing Alzheimer’s disease as my topic for the personal project, I was given the once-in-a-life-time opportunity to meet and sit

down with an Alzheimer’s patient in the moderate stage of his disease, and discuss about life. Life meaning one thing for me and something completely different for him. The interview above was conducted, as mentioned, on the 29th of February 2010, as Michael was on a trip together with many others from a seniors’ care home from Boston, Massachusetts. It was only out of chance that I was able to get in contact with the American Alzheimer’s Association and request a possible interview with a suffering American patient coming or living in Europe. Even though there were many German speaking patients, I wanted to feel every single drop of emotion and sadness in their voices, and to obtain as much information and facts I could get, which might have not been possible through communicating in German. I feel today, that Michael was truthfully the best candidate and patient to interview, he was emotional, used powerful words, and proved to still be a smart, intellectual person. From the second I sat down to the minute I got up, tears have been in my eyes, and the palms of my hands were all wet. Just listening to Michael’s stories makes you want to cry and just give him a hug. As you will read my interview with him, you will be able to realize what an amazing human being he actually is. The meeting with Michael was a real ray of light into my heart and an eye-opener for me. He allowed me to see how beautiful life truthfully is, and how we are sometimes unhappy even though we have everything we ever wanted or needed. Michael is definitely a fighter and one of the most determined human beings I have ever met. I must thank him and all those who allowed me to meet this extraordinary man.

Bibliography

Title Page

http://blog.healia.com/files/images/Old%20Hands.jpg

http://www.niceamazingpictures.com/data/media/1/Old_People_15.jpg

http://upload.wikimedia.org/wikipedia/commons/7/7d/Elderly_Woman_,_B%26W_image_by_Chalmers_Butterfield.jpg

http://todaysseniorsnetwork.com/man,%20older%20men,%20senior%20men,%20elderly%20,%20B&W.jpg

http://media3.washingtonpost.com/wp-srv/photo/gallery/101101/GAL-10Nov01-6277/media/PHO-10Nov01-264910.jpg

http://www.harrybyford.co.uk/wp-content/uploads/2009/10/sir-michael-parkinson.jpg

http://3.bp.blogspot.com/_qQzQEKOmjzU/TNyRuUUPndI/AAAAAAAAADc/0UiStgThw7E/s1600/JUNE.jpg

Main Body

http://oxforddictionaries.com/?attempted=true

http://en.wikipedia.org/wiki/Alzheimer’s_disease

http://www.medterms.com/script/main/art.asp?articlekey=2213

http://www.alz.org/national/documents/report_alzfactsfigures2009.pdf

http://en.wikipedia.org/wiki/Auguste_D

http://www.alz.org/alzheimers_disease_facts_and_figures.asp

http://en.wikipedia.org/wiki/Alois_Alzheimer

http://en.wikipedia.org/wiki/Kassel

http://www.deutsche-alzheimer.de/index.php?id=187

http://www.whonamedit.com/doctor.cfm/177.html