Sunday, November 8, 2009

WEEK 10 Isearch ‘Answer‘ (11-6-2009) Homework Assignment

Monday, October 19, 2009
WHY I’M WRITING

My Father has been diagnosed with Alzheimer’s Disease. My purpose here is to clarify my understanding of what I’m dealing with, in caring for him, and inspire others with similarly stricken family members.
This topic intrigues me because:
The disease seems to be affecting so many aging adults.
I have professionally provided care for Alzheimer’s afflicted residents in an assisted living environment.
I too, as an adult, want to know the warning signs that indicate onset of the disease.
Regarding my Father’s situation:
Is Alzheimer’s a normal aging process?
Is the disease gender driven?
Is the onset manageable, or even curable?
Is Alzheimer’s the same as dementia?
Am I predisposed as a family member?
Answering my questions can enhance:
My capabilities of caring for him when he visits?
What modifications of my home can better assist him?
What special needs he now has that I must be aware of?



Write a brief paragraph which overviews your answer. Then: One way to do this is to list your original questions and then list what you found as answers.

What is Alzheimer’s disease? Is Alzheimer’s the same as dementia?

Alzheimer’s is a form of dementia. It accounts for 60-70% of dementia. Alzheimer’s is a chronic, terminal disease that affects how the brain functions and processes information. It is a disorder that results in the loss of brain cells in humans. It is more than everyday forgetfulness, which is common as people age.

Since the brain is responsible for judgment, communication, behavior, thinking, reasoning, memory, and all bodily functions including, but not limited to: breathing, movement, walking, the 5 senses (touch, smell, hearing, sight, and taste) etc., all these areas will ultimately be affected as the disease progresses.

There are seven detailed stages of the disease as described by Barry Reisberg, M.D, clinical director of New York University School of Medicine’s Silberstein Aging and Dementia Research Center.

Fifteen years ago, I thought it only affected one’s memory. I have learned, it begins in the brain areas involved in memory. From there, it is a slow, steady decline to other areas of the brain as the disease progresses.


Who, when and how was Alzheimer’s disease discovered?

Dr. Alois Alzheimer discovered the disease in 1907 after performing an autopsy on a woman. He monitored and tracked her declining health for five years until her death. An
autopsy revealed dramatic shrinkage of her cortex, dead brain cells, and abnormal fatty deposits around the brain cells.

Back then, the average age expectancy in the United States was 50 years old. Today, Alzheimer’s affects most people in their 70’s and 80’s so, in 1907 it was considered a rare disease and dismissed. With people living longer, it is getting more attention. Today, according to the U.S. Department of Health and Human Services Today, the estimated average life expectancy for an average American is 79.6 years.


How many people have Alzheimer’s Disease?

Today, it is estimated between 2.4 to 4.5 million Americans have been diagnosed with having Alzheimer’s. An estimate of 50% being 85 years old and older, and 10% of these being over 65 years old. Every 70 seconds, someone is diagnosed with the disease. By 2050, 16 million Americans may in fact have this disease.


What are the warning signs of early onset?

Although we do not know what actually initiates the disease process, the damage to the brain begins 10 to 20 years before any problems are evident. Most symptoms begin after age 60.

There is no clearly defined line that separates the warning signs of Alzheimer’s from the normal aging process. However, when a person is no longer able to perform their normal, daily routine, that is the first sign something is wrong. The following check list is a guide. A doctor would need to evaluate an individual to determine if a person met the criteria for Alzheimer‘s:

10 Warning Signs of Alzheimer’s Disease

Memory loss
Difficulty performing familiar tasks
Problems with language
Disorientation to time and place
Poor or decreased judgment
Problems with abstract thinking
Misplacing things
Changes in mood or behavior
Changes in personality
Loss of initiative


Is Alzheimer’s Disease part of the normal aging process?

No, it is not a normal part of the aging process. While some symptoms of aging, side effects to medication, etc. may show some similarities, the extent of the debilitation having Alzheimer’s is significant.

Research has shown evidence that brain health is linked to heart health. Conditions that cause damage to the heart and blood vessels (diabetes, stroke, high blood pressure, or high cholesterol) seem to increase the risk of developing Alzheimer’s.

According to the U.S. National Institutes of Health National Institute on Aging, clinical trials are currently being done to evaluate interventions such as cardiovascular treatments, antioxidants, immunization therapy, cognitive training, and physical activity in retarding, postponing, or preventing Alzheimer‘s.

This makes me wonder. My Dad was diagnosed three months after his stroke.


Is the disease gender driven?

Studies show more women than men are likely to get Alzheimer’s. Further study is needed to confirm if that is so because women typically live longer than men. My research to date suggests age; genetics, lifestyle factors, and head injury are significant factors to consider. My search continues for more data.

I did learn race is now a factor to be considered. African-Americans and Latinos in the United States have higher rates of vascular disease than Caucasians. They may be at a higher risk of developing Alzheimer’s.


Is the onset manageable, or even curable?

I learned there are two types of onset. “Early-onset”, which affects people in their 30’s, 40’s, and 50’s. Most people have “late-onset” and develop the disease after 60 years of age. Drugs and managing behavioral symptoms are used to manage the disease. The drugs do not reverse or change the disease process. They may only help maintain cognitive skills and treat behavioral problems for a few months to a few years. At this time, no cure is available.

My Dad was diagnosed “late-onset” in December 1999. He will be 91, November 19, 2009.

Researchers believe a healthy diet, family history, and exercise and keeping the mind active (such as crossword puzzles and games like Bingo), may help delay the onset of Alzheimer’s Disease.


Is there a cure?

There is currently no cure. Specific drugs are prescribed depending on the stage of the disease: mild to moderate Alzheimer’s and moderate to severe Alzheimer’s. Both cognitive and behavioral symptoms may be helped with both drug and non-drug treatments. The U.S. Food and Drug Administration (FDA) have approved several types of drugs to treat cognitive symptoms of Alzheimer’s Disease: three cholinesterase inhibitors and Memantine (Namenda). The antioxidant, Vitamin E has also been shown to delay symptoms in Alzheimer‘s . Non-drug treatments include changes in environment to eliminate obstacles and challenges.

My Dad is slipping into this second stage.


Am I predisposed as a family member?

First, I want to state there are two types of onset to Alzheimer’s. I feel it important to explain both in order to fully understand each one specifically. Early-onset” and “late-onset” are the two forms.

Most cases of “early-onset” Alzheimer’s disease are caused by gene mutations. A parent may transfer these gene mutations to his/her child. Mutations in 3 genes have been identified as causing this form of Alzheimer‘s. Researchers have identified these mutations being in the APP, PSEN1, and PSEN2 genes.

This “early-onset” form of Alzheimer’s disease is inherited in an autonomic dominant pattern; meaning one copy of the altered gene in each cell is sufficient to cause the malady. A child only needs one affected parent to inherit the disease.

My Dad was diagnosed with “late-onset” Alzheimer’s. The causes of the “late-onset” form are still vague. This form does not clearly run in families, although some exceptions have been documented. It has been suggested; this form is probably related to variations in one or more genes in conjunction with life style and environmental factors.

Researchers have studied the APOE gene as a risk factor for this “late-onset” form. The presence of e4 allele, which is a variant of this gene, has been linked to increasing one’s risk of developing “late-onset” Alzheimer’s. The inheritance pattern of “late-onset” Alzheimer’s is questionable. If an individual inherits one copy of the APOE e4 allele, they will have an increased chance of developing the disease. They will be at an even greater risk if they inherit two copies. Again, I state, I am talking about the risk of inheriting the disease, not the disease itself. It is also important to note, not all people with Alzheimer’s Disease have the e4 allele risk factor, and not all people with the e4 allele risk factor will develop the disease. However, about 40% of all people who develop “late-onset” Alzheimer’s carry this gene.

In 2007, scientists discovered another possible risk factor gene, SORL1. Genetic research studies are being conducted to look for more.

Until I test out for the disease, I must conclude, my answer to this question to be “possibly”.


How can I be better prepared for my Dad when he visits?

Specific areas I will be addressing include: focusing on dignity, privacy, and respect, setting up a daily schedule/routine, setting realistic expectations for both myself and my Dad so his visit will be enjoyable, planning nutritious meals that are easy for him to eat and digest, bathing/toileting accommodations as my Dad can no longer climb stairs (balance and muscle tone), environment, entertainment, exercise, safety, adequate rest, comfort, and meeting his over all needs emotionally and physically. There will be modifications to our home especially to his room and the stairs to prevent falls. I will be making adjustments to some of his clothing as buttoning, zippers, etc. are becoming more difficult to do. Specifics will be detailed in the Isearch paper.

Since this time last year, my Dad has lost total sight in one eye so depth perception is a concern now. His hearing is now marginal at best. Seating arrangements in the living room and dining areas will be rearranged to provide a more intimate setting and less straining to hear what is being said.

I will continue to update his “Book of Knowledge”. I started this many years ago when he had difficulty remembering the names of my children, their spouse, grand children etc. I began including photos of his trips to Maine to visit me as a reminder of where I lived now. They include his journey from Newton to Brewer, Maine, and all the stops and stories in between. It has become a document of our family tree as the family has grown to include his great-great grandchildren too.

This is a handwritten, daily entry logbook of every thing he does while visiting. Photographs taken during his trip are also included. I keep a copy for myself so we can discuss the details of his “Book” by phone when he returns to his home. I add photos by mail periodically as our family expands. It gives him mail to look forward to receiving when he is back at his home in Massachusetts.

Larger size items will replace smaller incidentals. Bathroom sink handles have been replaced to a right/left lever style (no turning knobs). A temperature gauge will be set into the sink and tub (sensation for temperature: hot/cold is now lost).

As I normally do, I will consult with my Mom as to any changes in medications (amounts/dispersements), food preferences, sleep patterns, likes/dislikes, clothing etc.


What will I do with the new information I learned?

Since life style factors may contribute to an increased risk in developing the disease, I will definitely take the advice given in much of the literature I read. Staying healthy includes: eating a nutritious diet, exercise, social interaction, and mental stimulation.
Since, it has been suggested heart disease, high blood pressure, diabetes, and obesity (all of which run in my family) may also contribute as risk factors, I will gladly take that advice too.

I would consider participation in clinical studies for the purpose of furthering research that may lead to the cure of Alzheimer’s disease.

Ten years has made a huge difference in the information now available and the research that has been done.


What are the risk factors?

Risk factors include: age, family history (including heart disease, high blood pressure, and diabetes), genetics (the APOE 4 gene and the SORL 1 gene just discovered in 2007), head injury, poor health habits (high fat content diets), obesity, and certain life styles, inadequate exercise, smoking, drinking, lack of social interaction, and lack of mental stimulation. At this point in my Isearch, gender has not been discussed in depth nor noted as a significant risk factor. Time and more research will tell. Isearch paper will expand in this area.


************************************************************************
John,

This may not be as brief as I (or you) had hoped it to be, but I learned too much to keep it to myself.

8 comments:

  1. Carolyn--haven't read this yet--just the last comment and a quick glance, but I will have comments in a day or two.

    I'm not worried about brevity or prolixity; I am anxious about eventual citations. You do have source documentation, right?

    ReplyDelete
  2. John, do you mean the annotated bibliography or footnotes?

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  3. John, sending an email now regarding documentation.

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  4. Can I see you sometime this week to get the footnotes in order?

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  5. I will drop by at noon tomorrow to hand you a copy of my annotated bibliography. I also sent them in an attachment by email. Hope nine titles wasn't too much to send at once?

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  6. Early in this material, you're giving information without doing enough to relate it to your concerns and father.

    And by the end, as I think we discussed yesterday, you're working into the Future section.

    But everything you have here is useful and will find its logical place in the overall isearch.

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  7. Glad to have the opportunity to meet with you on Monday,John. Appreciate your feedback.

    ReplyDelete