Alzheimer’s Association — Memory Walk

Memory Walk began in 1989 and in 1993, it became a a nationwide event for the Alzheimer’s Association. Memory Walk is our country’s largest event to raise awareness and funds for Alzheimer care, support and research. Since its inception it has raised well over $200 million nationally. For every dollar raised at Memory Walk, only 7% will go towards administrative expenses.

Not only does the Memory Walk raise funds, it raises awareness of this awful disease. According to the 2010 Alzheimer’s Disease Facts and Figures report, Alzheimer’s disease (AD) is the foremost public health threat of the 21st century. Here is the grim data:

  • An estimated 5.3 million Americans have Alzheimer’s disease (AD); approximately 200,000 persons under age 65 with AD comprise the younger-onset AD population.
  • Every 70 seconds, someone in America develops AD; by 2050 it is expected to decrease to every 33 seconds. Over the coming decades, the baby boom population is projected to add 10 million people to these numbers.
  • In 2050, the incidence of AD is expected to approach nearly a million people per year, with a total estimated prevalence of 11–16 million people. Dramatic increases in the numbers of “oldest old” (aged 85 years and older) across all racial and ethnic groups will also significantly affect the numbers of people living with AD.

You can do your share to help stop Alzheimer’s disease. Consider joining a Memory Walk team. Click here to find a team or start one on your own. My sister is representing our family. Please help support her team. Click here.

AD does not occur overnight. In some cases, it can start many years before you are even aware of it. Could you be one diagnosed with AD down the road? We have to fund the research to stop this. We have to help support the millions caregivers. We just might need the support of one in the years to come. Let’s help support them now!

Check out this video from the Alzheimer’s Association that tells you more about the Memory Walk.

In three days, it will be 15 years since my father passed away. September also marks one year since I started this blog. It has opened my eyes (and my brain) to so many things. I’ve written about a variety of subjects, a number of them focused on research. Most recently, I got involved in a study at George Mason University (GMU). As a part of this study, I consented for them to do an MRI of my brain which they did last week. The anticipation of it all was more nerve-wracking than the procedure itself. The MRI machine at GMU is just for brain research and is smaller than the typical machine that is used for diagnosing other diseases and problems in hospitals and imaging centers.

Also last week, I went to a near-by assisted living facility where a nurse practitioner from Georgetown University Medical Center spoke on Research in Alzheimer’s Disease: Hope for the Future. Her talk will be the topic of another blog post, but one of the main difficulties that research studies are facing is the lack of participants. There are many research studies going on across the country. In a previous post on research, I mentioned a government Web site where you can look at some clinical studies recruiting for volunteers. Even the study that I’m in at George Mason University is looking for more subjects. Send me an e-mail for more information — info@aboutalz.com.

So if you’ve ever wondered if Alzheimer’s disease research needs volunteers, the answer is a resounding yes! It will not cost you anything except your time. You will be contributing toward understanding the staggering fact that every 70 seconds, a person is diagnosed with Alzheimer’s and with our aging population, the numbers will continue to rise. We must do all that we can to stop this and help find a cure!

Alzheimer’s Disease — Research

Research is one of the areas of Alzheimer’s disease (AD) of great interest to me. One of the best Web sites for this information is http://www.nia.nih.gov/alzheimers. This Web site is part of the Alzheimer’s Disease Education and Referral Center (ADEAR). Although the National Institutes of Health (NIH) is located in Bethesda, Maryland in the Washington, DC Metropolitan Area, there are studies going on across the country. In addition, there are research studies at all stages of Alzheimer’s. The NIH, known as The Nation’s Medical Research Agency, includes 27 institutes and centers and is a component of the U. S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research.

Through research, diagnoses of AD is becoming increasingly accurate. However, absolute certainly still requires an autopsy to define the plaques in the brain. Participation in these studies may require an autopsy where there is no charge to the family. However, if an autopsy is not acceptable to you or your loved one, then participating in research may not be something you should consider.

Participating in a research study could be very time consuming as well. It could involve commuting to the study site as well as filling out mounds of paper work. The specific drug in the drug trial may or may not work or it may work for awhile and then stop working so it’s better to keep your expectations low. Just remember to consider all aspects of  your life as a caregiver before signing up your loved one.

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We have reached the final stage of Alzheimer’s disease (AD) as defined by the Alzheimer’s Association: Stage 7 Very Severe Cognitive Decline — Severe or late-stage Alzheimer’s disease. There are many places on the Internet where you can get information about Alzheimer’s disease and when one is diagnosed with Alzheimer’s or has a family member diagnosed with the dreaded disease, one cannot get enough information.

One outstanding source of information is the Fischer Center for Alzheimer’s Research Foundation. They have an excellent Web site discussing the seven clinical stages of Alzheimer’s disease, but they break it down further into sub-stages. Below is the Alzheimer’s Association summary of “Stage 7 Very Severe Cognitive Decline.” It will be followed by a description of the Fischer Center’s sub-stages of stage 7.

This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement.

  • Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered.

  • Individuals need help with eating and toileting and there is general incontinence of urine.

  • Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.

According to the Fischer Center for Alzheimer’s Research Foundation, there are 6 consecutive functional sub-stages for stage 7. In brief, they are:

  1. Speech is limited to approximately a half dozen intelligible words or fewer in the course of an intensive contact and attempt at an interview with numerous queries. (approximately 1 year)
  2. Speech becomes even more limited — a single intelligible word. (approx. 1.5 years)
  3. Patients lose the ability to ambulate independently. (approx. 1 year)
  4. Patients lose the ability to sit up independently. Patients will fall over when seated unless there are arm rests to hold the patient up in the chair. (approx. 1 year)
  5. Patients will lose the ability to smile. Only grimacing facial movements are observed in place of smiles. (approx. 1.5 years)
  6. AD patients lose the ability to hold up their head independently. (approx. 1.5 years)

Keep in mind that these are not independent sub-stages. They can overlap. I never saw my father to this last stage, although I recall having to sit him up because he was always tilting to one side. It is really important even in earlier stages to have a chair with a side because they fall asleep easily.

Of the 35 million people in the world living with AD or a related dementia, those that receive the best care have the best chance of living the longest. Many pass away due to other illnesses. In the case of my dad, the official cause was pneumonia contracted after surgery for a broken hip from a fall in a nursing home. Although sometimes I wonder — did he have osteoporosis and did the broken hip cause the fall and not vice versa? Men don’t often get screened for osteoporosis and if that’s the case, the hip breaks first followed by the fall.

In just 20 years, the number of Alzheimer’s cases is expected to double. The longer you live, chances are you’ll find yourself in this unfortunate situation. Are you doing anything to prevent or slow down dementia?

Research shows that we forget 30% of what we’ve heard after 20 minutes, and 50% within a half-hour.

Alzheimer’s Association

Alzheimer's Association's E-News

The Alzheimer’s Association has a wonderful Web site packed with a wealth of information. I came across the video below because I signed up to get their weekly E-News and you can click here to sign up as well. It is a one-page update on advances in Alzheimer’s disease care, research, events and a brain-builder puzzle. Although the information is invaluable, it can be overwhelming to those not familiar with navigating Web sites. Additionally, symptoms may be similar, but no two people will experience Alzheimer’s disease in exactly the same way.

The video below reminds us that no one is immune to Alzheimer’s disease and Alzheimer’s is a family disease. The statistics are staggering — every 70 seconds in the United States, someone is diagnosed with Alzheimer’s.  Wow! Imagine being diagnosed with Alzheimer’s disease. The Alzheimer’s diagnosis may not surprise you because you may have suspected cognitive decline, but nevertheless, it is a shock to you and your family to receive the news. This can lead to many problems including depression in older adults, anxiety disorder, personality changes, bipolar disorder, and mental health problems, to name a few. Along the journey, although there is no known cure, I will certainly be looking for tips for getting better.

In future posts, I will be writing about stages of Alzheimer’s disease and the problems each stage brings. In this way, we can prepare for coping with the disease.

Check out this video from the Alzheimer’s Association.

Alzheimer’s Research Part 1

Although there is still no conclusive test for the determination of Alzheimer’s disease (AD), there is hope and occasionally, new information. Last month, Science Daily reported that:

Elderly people exhibiting memory disturbances that do not affect their normal, daily life suffer from a condition called “mild cognitive impairment” (MCI). Some MCI patients go on to develop Alzheimer’s disease within a few years, whereas other cases remain stable, exhibiting only benign senile forgetfulness. It is crucial to develop simple, blood-based tests enabling early identification of these patients that will progress in order to begin therapy as soon as possible, potentially delaying the onset of dementia.

A group of investigators, led by Professor Massimo Tabaton of the University of Genoa, Italy, have data that sheds light on this issue. The results of their research are published in the October issue of the Journal of Alzheimer’s Disease.

The investigators report that the concentration in blood of amyloid beta “42,” the toxic molecule that is believed to be the main cause of Alzheimer’s disease, is, on average, higher in MCI cases that went on to develop Alzheimer’s disease approximately three years later. The values of amyloid beta in blood vary considerably among the patient groups examined (MCI that develop Alzheimer’s disease; MCI stable; normal subjects). “This variability is likely very important,” Dr. Tabaton noted and went on to add, “but means that this needs further work before we can use this test for a definitive diagnosis.” For example, the scientists are going to set up a test that picks up a variant of amyloid beta potentially more specific of the disease.

There’s progress, but we still have a long ways to go to find an effective test. A conclusive blood test would certainly be ideal. But even if we were to have a conclusive test, doctors still have very few effective treatments for Alzheimer’s disease. And still, as it has been for a long time, only an autopsy will reveal definitively whether or not a person truly had Alzheimer’s.

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