AboutAlz.com Ends Regular Run

It’s been three years since I began this blog. I started it as a way to seek answers for myself. The number of people with Alzheimer’s disease (AD) and other forms of dementia is staggering and the projected numbers are mind-boggling. Each year we are hopeful for the one miracle drug that will cure AD, but we have not reached our goal.

The untold number of hours that caregivers spend caring for their loved ones cannot be measured. It indeed takes a huge toll on their physical and mental health as well as their financial burden.

When I look at the visitor statistics for this blog, I know that other people are looking for answers as well. Although I am encouraged by the numbers to continue this blog, my situation has changed and I have accepted another challenge which requires that I devote some time to achieve success. I may return to writing this blog in the future, but I hope that it will not be necessary as we will have solved the problem and eliminated Alzheimer’s disease.

If I can summarize what we can all do at this point, it’s everything you would do to keep your immune system healthy such as:

  • Get adequate sleep every night.
  • Take enough Omega 3 and other necessary supplements. (Check with your health care provider).
  • Exercise as vigorously as you can.
  • Find enjoyment in life. Do things that you really love to do. Just because it’s been said that crossword puzzles are good for the brain, if you don’t enjoy it, why are you engaging in it?
  • Be grateful no matter what situation you are in. There’s a lesson to be learned in everything.

The Alzheimer’s organization is one source that has been very helpful in keeping us posted with the latest news and there are other sources that I’ve mention in this blog as well. Do check its Web site periodically. As I say good-bye for now, I thank you for your support.

The last two months I’ve talked about a lecture that I attended, “Understanding the Person with Dementia: How to Communicate Effectively.” It was presented by Susan Stone who is with the Alzheimer’s Family Day Center (AFDC) in Fairfax, Virginia and does outreach and education. Communicating with a person with Alzheimer’s disease (AD) is a challenge which takes patience and understanding. This is a continuation of her lecture and the final in the series of three articles.

To communicate with a person with Alzheimer’s disease (AD), we need to understand their world. There is no point in arguing or correcting. The patient’s reality is not your reality so join the individual where he is. Simply acknowledge the statement and emotion behind it even though you know that it’s incorrect. Avoid asking questions that they cannot answer. Allow them to reminisce.

Make positive statements. Try going through the day without saying “no.” Difficult? Avoid pronouns like it, he, she. And use very simple explanations. Details often overwhelm them and can cause increased anxiety.

Here are some strategies to consider.

  • Offer guided choices. They are losing their right to make choices so say something like “chocolate or vanilla” and they will likely remember the last word.  The speaker humorously added that if there are only two choices and you want the chocolate one, offer the chocolate one first followed by vanilla since they will probably choose vanilla.
  • Write it down and use labels. During the late stages, labels won’t help, but during earlier stages of AD, they will help.
  • Validate emotions rather than facts.
  • Avoid overstimulation.
  • Model appropriate behavior.
  • Fill in lost words, although this depends on the person.
  • Turn your questions into answers.
  • Use events to measure time.

Listening is extremely important. Learn to read body language to figure out what the person is trying to communicate. Is it pain, frustration, fear, pleasure, boredom? Survey the environment as well to see what’s going on. Focus on the person and listen. One AD patient said,

I have taken time to put words together and I may be unable to repeat it.

Another AD patient said, I’m doing the best I can. They may overhear you talking about them so be careful. The ability to understand what is being said outlasts the ability to speak effectively.

The understanding the person has might come from body language and tone of voice more than from the words that you use. Use humor gently and never at the expense of the individual. But humor is everywhere; just keep looking for it.

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A couple of years ago, I wrote about a wonderful Alzheimer’s disease (AD) resource in Fairfax County, Virginia located about 15 miles south of Washington, DC, the Alzheimer’s Family Day Center (AFDC). Not only are they a day care center for AD patients, but they have excellent programs for caregivers. I recently attended one such program on communicating with Alzheimer’s patients.

Titled “Understanding the Person with Dementia: How to Communicate Effectively,” it was presented by Susan Stone who is with AFDC and does outreach and education. Susan is an excellent communicator herself and interacts with the audience extremely well. I want to share some of her thoughts in this article and I will continue next month.

Because communication is only 7% verbal and the rest nonverbal, it is important to not limit your communication to just words. People with Alzheimer’s prefer not to talk on the phone and initiating phone calls is difficult. They have difficulty keeping up with conversation and may not understand your words. Their attention span is limited and they may have trouble finding the correct word. Furthermore, they may pick up only every three to four words.

For example, the conversation may sound like this:

___ WANT ___  ___  ___ GET ___  ___  ___ TAKE ___  ___  ___ . WE ___  ___  ___ APPOINTMENT ___  ___  ___  ___ WE ___  ___  ___ BEFORE ___  ___  ___ HOME.

NOW ___  ___ HURRY.

Here is the entire message:

I WANT you to GET up now and TAKE a good shower. WE have a doctor’s APPOINTMENT at 11:00 and WE can have LUNCH before we go HOME.

NOW please just HURRY!

Getting angry and adding a sharp tone of voice is not going to make this message any easier for the AD person to decipher. Here are some suggestions Susan offered:

  • Restating key words will help.
  • Give one direction at a time.
  • No rushing – time does not mean anything to an AD person.

Here are further suggestions repeating just the key words.

  • Get up. (Offer your hand).
  • Shower.

This is all the person needs to know at this point. They don’t really need to know about the appointment and having lunch is too far in the future to mention it now. You want them to take a shower and all they might remember is having lunch.

More suggestions will be coming next month. I hope this gives some understanding as to why communication is so challenging for those with dementia.

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Alzheimer’s Action Day

Today is Alzheimer’s Action Day and September is World Alzheimer’s Month. Let’s all wear purple and show our support.

You’ve seen the staggering figures. There are already more than 5 million Americans diagnosed with Alzheimer’s disease and by 2050 as many as 16 million Americans will have the disease. Will you be counted in that figure? Let’s do all we can to take care of ourselves and to support the Alzheimer’s Association to eliminate this awful disease.


 

Last week the Alzheimer’s Association released its new 2011 Alzheimer’s Disease Facts and Figures report. The statistics are grim. It is the sixth leading cause of death and of the top 10, it’s the only one where we do not know exactly how it can be prevented, cured, or slowed. Yes, we do have many research studies going on, but there has not been anything definitive. Most of the studies are just the tip of the iceberg and require further research. Some have produced disappointments. Highlights from the report include the following:

  • An estimated 5.4 million American’s have Alzheimer’s disease. Another American develops Alzheimer’s disease every 69 seconds.
  • In 2010, 14.9 million family and friends provided 17 billion hours of unpaid care to those with Alzheimer’s and other dementias.
  • The cost of caring for those with Alzheimer’s to American society will total $183 billion in 2011.
  • Deaths from Alzheimer’s increased 66 percent between 2000 and 2008, and Alzheimer’s is the only cause of death among the top 10 in America without a way to prevent, cure, or even slow its progression.

The complete 2011 Alzheimer’s Disease Facts and Figures report allows you to get information specific to your state. Let’s hope we will have a major breakthrough this year and the 2012 report will be a lot more promising.

The Alzheimer’s Association produced a video capturing these statistics.

Hope for Alzheimer’s Disease

I know it’s difficult for families with an Alzheimer’s disease patient. What looks like so much promise for those of us who are candidates down the road, will not be a solution for those currently experiencing this dreadful disease. What’s available today are only five medications discussed previously here. These may slow down the progression of the disease, but they also have side effects (like most prescription medications) and are not permanent solutions. There are also many clinical trials going on. The Alzheimer’s Association is an excellent place to start your research.

This year there has also been a greater focus on caregivers because of organizations like the Alzheimer’s Foundation of America and celebrity involvement. Earlier this month, Al Roker of the Today show, hosted the first telethon, Together for Care, for the foundation. See video below.

Occasionally, we hear good news such as “New Piece of Alzheimer’s Puzzle Identified” which is very encouraging. Sometimes encouraging news turns out to be disappointing, but there’s always hope. In this new study, researchers from the Mayo Clinic in Rochester, Minnesota found that endothelial dysfunction increases production of proteins that provide the raw material for the amyloid plaques seen in the brains of people with Alzheimer’s disease. Simply put, endothelial dysfunction is a problem with the lining of the blood vessels. Read the full news release here.

So, as we turn the page to a new calendar year, let us keep the hope in our hearts. I wish all of you and your families a heart-warming new year.

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Now that the holiday season is in full swing, what should be a joyous time for all can be an especially challenging for a person with Alzheimer’s disease (AD) and their families. According to Dr. Stephen Moelter, associate professor of psychology at University of the Sciences, family members may not know how to react to a person who often repeats the same thing, is confused, or does not recognize the family member.

In order to engage a person with Alzheimer’s disease, he makes the following suggestions:

  1. Family members need to educate themselves about AD and the importance of supporting their loved ones and keeping them safe. There are many resources at the Alzheimer’s Association’s Web site, www.alz.org.
  2. Engaging the person in conversation and keeping them involved in activities is paramount to their health. It should be at their level and it is preferable to let them lead. Keep your tone positive and it is preferable not to challenge a person with AD. That my lead to increased anxiety and confusion. A memory test will not help the situation.
  3. Ask questions about the distant past such as how they spent their holidays as a child  rather than how they spent their holidays as an adult. Encourage reminiscing.
  4. Parents can help their children by giving suggestions to their children of topics to talk about such as hobbies, jobs, or family events. Younger children should be given permission to keep the conversations brief. It is very difficult for children to comprehend Alzheimer’s disease.

You can read the entire article at Medical News Today. Click here. Here’s wishing you and your loved ones a memorable holiday season.

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Last week Heather Stephenson of Edelman, the public relations firm for the Pharmaceutical Research and Manufacturers of America (PhRMA), sent me links for a report (2010 Report: Medicines in Development for Alzheimer’s Disease) and video from PhRMA. In my next post I will talk about the report. In the meantime, the video below reminds us of the staggering numbers.

As we get ready to celebrate Thanksgiving 2010 in the United States, I am thankful that the pharmaceutical companies are in communication with each other as well as joint venturing with many research institutions to find a cure for this devastating disease. The video below reminds us of the staggering numbers of people affected by the disease itself, not to mention the effects on all of the caregivers. Our thoughts and prayers go out to all affected by Alzheimer’s and related diseases and wishing everyone a very Happy Thanksgiving!

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Alzheimer’s Disease Vaccine

One thing that I’m hoping for more than anything else is that a vaccine be developed for Alzheimer’s disease (AD). Wouldn’t it be great if we could stop our brains developing anything worse than an occasional senior moment? A couple of weeks ago, it was reported that researchers at  UT Southwestern Medical Center, after seven years, have created an experimental vaccine against beta-amyloid, the small protein that forms plaques in the brain and is believed to contribute to the development of Alzheimer’s.

This new experimental vaccine stimulated more than 10 times as many antibodies that bind to and eliminate beta-amyloid as compared to similar so-called DNA vaccines that the UT Southwestern researchers tested in an animal study. There are several studies that have to be done including:

  • safety of the vaccine and
  • whether it protects the mental function in animals.

According to Dr. Roger Rosenberg, director of the Alzheimer’s Disease Center at UT Southwestern and senior author of the study,
“The antibody is specific; it binds to plaque in the brain. It doesn’t bind to brain tissue that does not contain plaque. “This approach shows promise in generating enough antibodies to be useful clinically in treating patients.”

There was another vaccine tested a couple of years ago from the University of Southampton where British researchers gave 64 patients with moderate Alzheimer’s disease an experimental vaccine designed to eliminate plaque from their brains. Some patients were followed for up to six years.

Autopsies on seven patients who died of Alzheimer’s during the study showed that nearly all of the sticky beta-amyloid protein thought to be dangerous had been removed. But all patients still had severe dementia. So that was a disappointment. It will take a long time just to figure out what they need to target.

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Last week Reuters reported that international experts on Alzheimer’s disease (AD) are recommending that a new criteria for diagnosing Alzheimer’s should be used considering the recent scientific discoveries which includes the use of biomarkers (biological signals) which can determine if a person is at risk for developing the disease well before there are any symptoms. Hence, even as many as 10 years before any symptoms begin to show, it would be best to intervene. Recent studies have shown that brain scans, spinal fluid analyses, and other tests can possibly predict who will develop AD. With this knowledge, researchers and pharmaceutical companies can develop new drugs.

According to caring.com, the new criteria for diagnosing Alzheimer’s is much more accurate. It requires:

  • An early and significant episodic memory impairment
  • Gradual and progressive change of memory for more than 6 months
  • Objective evidence of recall memory that does not improve or does not normalize with adequate cueing or recognition testing

PLUS one or more of the following supportive features (the new early markers for increasing the specificity of a patient having AD):

  • Medial temporal atrophy on MRI
  • Abnormal spinal fluid concentrations of (1) amyloid, (2) total tau or (3) phospho-tau
  • Specific patterns of PET scanning producing hypometabolism of bitemporal parietal regions or Pittsburgh compound B
  • Proven AD autosomal dominant mutation within the immediate family

The criteria currently being used was adopted in 1984. In light of what the current research is showing, we are headed in the right direction to try to intervene as early as possible.