Alzheimer's Reading Room

The Cost of Healthcare Worldwide

2010-03-21T08:43:00.001-04:00

I am wondering if people understand what they are paying for healthcare now, and what they are receiving in return?....

By Bob DeMarco
Alzheimer's Reading Room

We spend twice as much on healthcare as most industrialized countries. At the same time, our world ranking in healthcare delivery is poor.

The infograph includes life expectancy in years, statistic on infant mortality rates, cardiovascular deaths, and the cost of healthcare by country. See the Zoomable version of this graph to get a better look at the comparisons.

Source: Good
Zoomable version

More About the Alzheimer's Reading Room
Advice and Insight -- Alzheimer's Caregiving

What is Alzheimer's Disease ?

Dementia and the Eight Types of Dementia

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Communicating in Alzheimer's World

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Dr Oz Alzheimer's Memory Quiz (Test)

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

Is it Really Alzheimer's or Something Else?

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

What to do when Alzheimer's Strikes -- Carole Larkin

2010-03-20T14:18:00.002-04:00

When Alzheimer's strikes most families don't know where to look for help, or what to do.....

Yesterday I posted How Would You Answer This Question?

Following a thorough physical and neurological examination, our mother was diagnosed as being in the early stages of Alzheimer's disease. My siblings and I are starting to talk about future care and what actions we should be taking to keep her safe. Unfortunately we are clueless and don't even know where to start. Our father died very suddenly years ago, so we never dealt with any care plan issues with him. Can you give us some direction?

By Carole B. Larkin
Alzheimer's Reading Room

The answer -- GET EDUCATED -- the sooner the better. There are two ways to get educated:

Teach Yourself

Call the local Alzheimer’s Association – they will send you information and direct you to support groups. FREE.
Call the Area Agency on Aging for the names of other eldercare agencies that will give you information. FREE
Buy Books. Type in Alzheimer’s at Amazon.com or go to a bookstore. Not FREE but CHEAP.
Talk with your friends, fellow church members, anyone you see at the Neurologist’s office to see what their experiences are.
Go online – Start here and read articles from here and other Alzheimer’s sources. Google Alzheimer’s. FREE.
Visit Nursing homes, assisted living, and/or home care companies to speak to people who can teach you about Alzheimer’s.

Have a Professional Teach and Assist You

Geriatric Care Managers are professionals with expertise in Aging and the dementia. They are certified by the National Association of Geriatric Care Managers, and they are required to meet the criteria of ethics and expertise of the national association. They are usually Social workers, Nurses or Gerontologists.
A Geriatric Care Manager will come to the residence of the person with the dementia and complete an extensive assessment of that persons circumstances, including but not limited to -- the personality of the person, family dynamics involved with that person’s family, funds available for care, a safety check of the residence, medical issues, and provide a list of other professionals that might be needed to be brought on a consult (such as Eldercare Attorneys, Home Care companies, Senior Real Estate Experts, remodeling companies, and nursing homes, etc…)
At the assessment and in meetings subsequent, the care Manager personally conducts educational sessions with the family on Alzheimer’s and related dementia to increase the family’s knowledge of the behaviors and how to address them.
From that assessment a Care Plan will be made up expressly for that person and their family, outlining steps to be taken immediately as well as steps to be taken in the intermediate and long term future.
The Care Manager may offer to monitor the person periodically to assure things are going as planned.
Care Managers are Private Pay. Medicare does not pay for this service, but some long term care insurance does. Care managers may work by the hour or charge a flat fee for the assessment and an hourly rate after that. Most are independent companies, a few work for home care companies or other senior businesses. Rates vary widely. Costs are usually in a range of $75-$150 an hour.
Most clients say going this route saves time, money and reduces anxiety and stress.
Care Managers can be found at this website: http://www.caremanager.org/

More About the Alzheimer's Reading Room
Advice and Insight -- Alzheimer's Caregiving

What is Alzheimer's Disease ?

Dementia and the Eight Types of Dementia

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Communicating in Alzheimer's World

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Dr Oz Alzheimer's Memory Quiz (Test)

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

Is it Really Alzheimer's or Something Else?

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

Carole Larkin MAG, CMC, DCP, EICS is a geriatric care manager who specializes in helping families with Alzheimer’s and related dementias issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers. Her company, ThirdAge Services LLC, is located in Dallas, TX.

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Original content Carol Larkin, the Alzheimer's Reading Room

You Comment Me

2010-03-20T09:22:00.001-04:00

The Alzheimer's Reading Room is undergoing the metamorphosis and transition that I hoped it would.....

By Bob DeMarco
Alzheimer's Reading Room

At the beginning of the year, I said one of the major goals of the this blog was to unleash the Collective Brain of the Alzheimer's Reading Room. One part of that goal was to create more interaction and to increase the number of reader comments.

So far so good. So very very good.

In the last two weeks, we had many high quality comments. These comments fall into the category of insight and advice. This sharing helps accomplish the goal of making the ARR more support group oriented.

From my seat, I believe comments improve the quality of the content on this blog. It is my belief that the comments are often better than the article. At the minimum, the comments enhance the topic and the quality of the information being presented.

One thing to consider. Every article on this blog gets archived. This means it is available forever. As we know, a new Alzheimer's caregiver is born every 70 seconds. The information, the articles, and the comments are available to new born via search engines like Google. I believe you will agree that new born caregivers are going to need lots of advice and insight. In this sense, we are there for them.

It is not unusual to receive an email of thanks from someone that read an article that was published in the past. They searched for information and found the Alzheimer's Reading Room. We helped them.

One of the most frequent emails I receive includes these words -- thanks to the Alzheimer's Reading Room I no longer feel alone. It seems that we are doing a very good job of helping Alzheimer's caregiver understand they are not alone. I believe this is one of the most important, if not the most important, hurdles a caregiver must accomplish to be effective in their new found role as a caregiver. Lets face it, it gets lonely out there.

Five times this week, I answered an email by recommending to a new caregiver that they look at a list of articles. I now find myself including these words -- be sure to look at the comments below the article for additional advice and insight. I enjoy typing those words.

The amount of emails I receive is sometimes overwhelming. I am now learning how to point readers to articles and comments. I know this is effective. I know this is needed. I believe like me you understand the importance of the information. At the minimum new caregivers will jump up the learning curve sooner.

I am also learning how to bring comments back up as new articles to be rediscussed. I am learning that this really adds depth to an article, topic, or issue. When I read some of these articles with new comments in the last few weeks I really felt encouraged. I thought, I wish I had this information back at the beginning. I also thought, I hope new caregivers find this information or that someone tells them it is available.

The Alzheimer's Reading Room is undergoing the metamorphosis and transition that I hoped it would. There are other subtle little changes I am making to improve the blog that you might be noticing.

I know this might sound trite but I am going to say this anyway,

You Complete the Alzheimer's Reading Room.

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

How Would You Answer This Question?

2010-03-19T20:02:00.002-04:00

By Bob DeMarco
Alzheimer's Reading Room

Following a thorough physical and neurological examination, our mother was diagnosed as being in the early stages of Alzheimer's disease. My siblings and I are starting to talk about future care and what actions we should be taking to keep her safe. Unfortunately we are clueless and don't even know where to start. Our father died very suddenly years ago, so we never dealt with any care plan issues with him. Can you give us some direction?

If you are interested in writing an article on this topic send me an email.

More About the Alzheimer's Reading Room

Advice and Insight -- Alzheimer's Caregiving

What is Alzheimer's Disease ?

Dementia and the Eight Types of Dementia

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Communicating in Alzheimer's World

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Dr Oz Alzheimer's Memory Quiz (Test)

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

Is it Really Alzheimer's or Something Else?

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Art on Cape Cod and the Day I Delivered Puzzles

2010-03-19T13:27:00.000-04:00

Instead of feeling like I was delivering something helpful, I was beginning to feel like I was the agent of doom wherever I went.....

By Max Wallack
Alzheimer's Reading Room

I was very happy to read today’s article in the Cape Cod Times, Art Stimulates Conversation With Alzheimer’s Patients.

Last year, the Alzheimer’s Services of Cape Cod and the Islands began a program using art to trigger memories. Suzanne Faith, the director of client services at the organization said,

“Often we store information in our brains as pictures. So when somebody sees a visual image, the image can stimulate the mind to open the door to memory rather than words.”

Ms. Faith was inspired to start this program after reading about Dr. Zeisel, the president of Heathstone Alzheimer’s Family Foundation. Dr. Zeisel had collaborated with the Museum of Modern Art in New York City, and he had begun a program there for people with dementia. This program was so well received that MetLife Foundation awarded it a grant of $450,000 to expand nationwide.

(I heard Dr. Zeisel speak. He is committed to helping Alzheimer’s patients. His passion is contagious to his audience.)

Ms. Faith goes on to say that there are 8,500 diagnosed dementia patients in her area. Fortunately, there are also many artists in that area.

Twelve different museums and art galleries are participating in the new art program. Groups are limited to 10 individuals, and they ask “sensory-stimulating questions” like asking people what they like about a particular painting.

One museum has an exhibit of a photographer’s photos from the 50’s and 60’s. Another will have hands-on displays of shells.

Ms. Faith is looking for additional museums and art galleries who wish to participate, and she is also offering a training session in May.
_____________________________________
One day last summer, I spent the entire day delivering puzzles to that area. In fact, I delivered to six facilities in Plymouth. I found the abundance of Alzheimer’s patients in that not-so-heavily-populated area, a bit strange. My entire experience there was strange. Here is the summary I wrote, that day in July, 2009, about my experience:

Today, we went south to Plymouth. I saw Plymouth Rock. Then, I began delivering puzzles. It was a strange day.

First location: We pulled up and there was a fire engine and an ambulance there. As I walked in, they were carrying someone out. No one was available at the front desk. I left my puzzles with a note.

Second location: We pulled up and we heard sirens. As I walked in, the ambulance arrived. Everyone inside was running around busy and some people were screaming. I left my puzzles with a nurse.

Third location: We pulled up and as we pulled in, we saw an ambulance pull out. I delivered my puzzles to a secretary.

Fourth location: We pulled up and a fire engine rushed in in the opposite direction on the turn around. We had to back out the whole way and pull around the back. I left my puzzles at the reception desk.

Fifth location: We didn't see any emergency vehicles, but when I went inside I could hear an alarm ringing. As we left, an ambulance was pulling around back.

Sixth location: All looked calm. We parked in front. A woman came running out and said we have to move quickly because they just called 911. Then a fire engine and the fire chief and an ambulance arrived. By then, I was actually beginning to recognize some of the firemen. I wondered if they noticed me and wondered why they kept being called wherever I went! I actually never delivered to that place.

Seventh location: right next to location six. It was a building specifically for Alzheimer's patients, so I delivered all the puzzles for buildings 6 and 7 to them!

Instead of feeling like I was delivering something helpful, I was beginning to feel like I was the agent of doom wherever I went. It was a strange day!

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude Finkelstein, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER , a 501(c.)3 charitable organization. PUZZLES TO REMEMBER is a project that provides puzzles to nursing homes and other institutions that care for Alzheimer's and dementia patients.

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Original content Max Wallack, the Alzheimer's Reading Room

Alzheimer's Disease: Do Not Resuscitate, Power of Attorney, Advance Directive

2010-03-19T00:16:00.002-04:00

By Carole B. Larkin
Alzheimer's Reading Room

With these legal documents in hand -- Do Not Resuscitate (DNR), Medical Power of Attorney (POA) and Advance Directive (AD) you have one thing -- Legal Control.

Without these properly executed documents you have no control over medical decisions and treatments. With them you have a fighting chance of having a say over medical treatment -- and life/death decisions.

With Alzheimer’s or another cognitive illness, you need to understand that eventually your loved one won’t have the ability to make the reasoned decision needed for their best interest. And, it is likely the day will come sooner than you think. You need to get these legal matters taken care of today! Sound urgent? It is! Here’s why.

If you wait, and cousin Freddy, or the hospital administrator, or a doctor, can show that your loved one, Mary, wasn’t “competent” (in a legal sense) to understand the papers she signed -- your control is out the window.

Say cousin Freddy’s spiritual beliefs mandate that he make every effort to save a life -- no matter how ‘terminal' Mary is. All he has to do is show that Mary wasn’t competent to sign the papers that say that Mary doesn't want extraordinary procedures to extend her life.

Disputing Mary’s competency is a mechanism that accomplishes the goal of extending Mary’s life as long as possible and subverting Mary’s wishes and your goal of carrying out Mary’s wishes on her behalf. Often the hospital is inclined to support this legal mechanism. Why? Both for financial reasons and because extending life is what they do.

So you need to get all the legal papers signed early on in the disease, or as early as you can (and hope cousin Freddy doesn’t read this).

Every state has a version of all of these documents. They may be called different things in each state, but the intent is the same. These documents give you the right to act on your loved ones behalf and they (EMTs, doctors, hospitals, nursing homes, whomever) have to follow your wishes.

Lawyers can draw the papers up for a fee, but you can also get them free from the state (in most states). They are fill-in-the-blank type forms. Sometimes they have to be notarized. Call your Area Agency on Aging. There is an Area Agency on Aging for every county in the United States. Ask “What State Agency has the forms for Do Not Resuscitate (DNR), Medical Power of Attorney (POA) and Advance Directive (AD).” With that information you can then go to the state agency's website and download them. Cumbersome, but FREE. Here is another way to find the information, dial 2-1-1 on your telephone and ask where you can obtain the documents.

Let’s take them in the order of use.

DNR is short for Out of Hospital Do Not Resuscitate. This is for the 911 guys (EMTs). Their job is to try to bring people back to life. They will do their job unless told not to. It may be great for someone who has been without breath or heartbeat for five minutes, but what about twenty-five minutes? Without a DNR to waive in the EMTs face, off they go to the hospital trying to revive all the way. What if a well meaning neighbor called 911 and you weren’t home? You loved one is revived and on the way to the emergency room. Your next opportunity to assert your control over the situation is at the hospital. To do that you must present the hospital with a valid Medical Power of Attorney (POA). Keep one in your car.

The hospitals have you sign one if you don’t have your own, but the one they give you may be contestable if your loved one is unconscious or too cognitively impaired. If you don’t have a POA signed prior to the admission/treatment and give a copy of it to the hospital as soon as possible you stand the risk of the hospital doing what is medically necessary even if it is against your loved one's wishes. If that happens there is generally only one thing you can do and that is going to court to get guardianship. That takes time and money.

It is far better is to present a executed POA before the need arises.

Finally, the AD, or more properly the Advance Directive to Physicians sometimes called a Living Will. This is where you can and should get specific. Like, no feeding tubes, no artificial respiration and whatever else you care to list. I suggest that you include a statement, something like, "If not listed here, I want to be consulted before any action is taken or service given". If you want no extraordinary measure of any kind, use the words “palliative care” or "Hospice".

I understand how serious these decisions are. I’m not advocating for any specific choices, just that the choices need to be considered and decisions made. I know that it is a horrible burden to have to make these sorts of decisions, but the bottom line is-- do you want a stranger doing it for you? I don’t.

Carole Larkin MAG, CMC, DCP, EICS is a geriatric care manager who specializes in helping families with Alzheimer’s and related dementias issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers. Her company, ThirdAge Services LLC, is located in Dallas, TX.

More About the Alzheimer's Reading Room

Advice and Insight -- Alzheimer's Caregiving

What is Alzheimer's Disease ?

Dementia and the Eight Types of Dementia

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Communicating in Alzheimer's World

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Dr Oz Alzheimer's Memory Quiz (Test)

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

Is it Really Alzheimer's or Something Else?

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Original content Carol Larkin, the Alzheimer's Reading Room

Alzheimer's Communication -- Go Where the Action is

2010-03-18T13:28:00.005-04:00

No, I am not telling you what that means, you go where the action is and then you tell me....

By Bob DeMarco
Alzheimer's Reading Room

That's Dotty in the sunglasses, at the Banana Boat.

Yesterday, I wrote about how Dotty remembered after a week that she won $50 at bingo. This made me think about communication with Dotty.

I am now remembering that when Dotty was first diagnosed, I thought I better get all the information about the past that I could out of Dotty.

At that time, it was particularly interesting talking to Dotty. She couldn't remember what she ate that day, but she could remember what she was doing in 1922. You have to remember, I was new to the Alzheimer's game at the time. So I was both curious about the disease and starting up the Alzheimer's learning curve. In some ways, you could say I was fascinated.

One night I am talking to Dotty and asking her about her father William Watts. Next thing I know we are discussing what he did for work.

Dotty then tells me how she remembers going to work with her father. He delivered products to corner grocery stores. Might not sound like much until we get to part where Dotty is riding with him on the horse drawn truck while at work with him. This was something I never knew or ever heard about.

Next Dotty tells me about how the store owners use to give her things, like candy. I try to imagine Dotty climbing out of the truck to go into the store. Dotty is a shrimp to start out with -- five fee tall. Six years old? I see Dotty as 3 feet, two inches. That is one tiny Dotty.

Dotty has pictures of herself in the 1940s. She weighed 97 pounds. I believe it. She must have had an 18 inch waist. Imagine that ladies. I would tell you Dotty's current waist size but I don't want to get sued by Dotty.

This story is reminding me of another story that is a bit off track. I remember back in 2001 when Dotty announced to the world at a big family party that she was English. Everybody looked at me with a look of shock on their face. I told them, she has been saying this for a few years. They couldn't believe it. Dotty's mother was full blood Italian, and her father was full blood English. Well I am not sure about her father. I better ask my cousin Carol.

Mild cognitive impairment?

OK, lets get back on track. At one point, it was like Dotty and I were living in a cave. Her friends were not calling her much and only Josie was coming by to see us. We could go days, just me and Dotty. Then we started going to the gym. But, we could still goes days with out seeing anyone other then at the gym.

I did make a few observations. Dotty could walk better then it appeared. While on a treadmill she can hold on to the bar(s). Dotty seemed to be responding very well to the exercise, bright light, and limited social activity. Another benefit --her legs got stronger, her balance improved, and she stopping falling.

Soon the light bulb went on in my head.

This is when Dotty and I started going to the Banana Boat restaurant. They have a big outdoor bar that sits out on the water. You can eat, drink and listen to live music. Pretty soon people start talking to Dotty. Dotty started talking right back. Some of the stories were excellent. A figment of her imagination but still wonderful to hear. Well after I finally got over my own hang-up. I got hung-up because Dotty was telling lies. Imagine that. What I knucklehead I was.

It took a while but finally I came to a simple realization. It really didn't matter what Dotty said, it did matter that Dotty was talking. Talking to complete strangers at times. Its the socialization stupid (I'm talking to myself here).

This is when I was discovering the importance of bright light and socialization on Dotty. This lead me to one of my most important conclusions.

Dotty and I would begin living our life as we always had and damn the torpedoes.

You need to remember there are two parts to this equation -- Dotty and me. Soon I learned another important lesson. The better Dotty's day, the better Bobby's day.

By the way, a trip to the Banana Boat is like a vacation for Dotty and me. It is going to get warm soon and Dotty and I will reappear at the the Banana Boat for the first time in a long time. Last year, after the season ended we started going downtown to Vic and Angelo's. Dotty and I decided we were burned out on the BB after three years. So we moved our act to Vic and Angelo's.

Vic and Angelo's has great chicken wings. We might also venture across the street to the new outdoor place that opened up --burgers, ribs, wings and live music. They also have a brand new place that serves Maine Lobster rolls -- we are there.

I should interject. Dotty is going to be 94 soon. I finally got her use to being 93. I don't think she is going to like hearing me telling people she is 94. Its fun telling people Dotty is 93. Usually their eyes pop out of their head. They can't believe Dotty is out in the world at her age. Dotty is a good role model.

Communication with someone suffering from Alzheimer's is important. It is obvious that someone suffering from Alzheimer's can't tell you what day it is. On the other hand, they love to talk about the past. Go where the action is.

People suffering from Alzheimer's love to go out. Start living your life -- damn the torpedo's, go where the action is.

I'll let you in on a little secret. You go where the action is and your are going to find out some things you never knew about yourself.

No, I am not telling you what that means, you go where the action is and then you tell me.

A lack of social stimulation is harmful for people with dementia. It exaggerates the impact of the condition. It can lead to depression and it encourages people to withdraw into themselves.....

More About the Alzheimer's Reading Room
Advice and Insight -- Alzheimer's Caregiving

Dementia and the Eight Types of Dementia

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Communicating in Alzheimer's World

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Dr Oz Alzheimer's Memory Quiz (Test)

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

Is it Really Alzheimer's or Something Else?

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Johnson & Johnson (JNJ) Bapineuzumab More Disappointment

2010-03-18T09:54:00.003-04:00

By Bob DeMarco
Alzheimer's Reading Room

Johnson & Johnson took over development of bapineuzumab, when it bought Elan's Alzheimer’s program last year. Study results for bapineuzumab were originally forecast for release in 2010. It now appears that study results for this Alzheimer’s disease drug may not yield results until 2012.

This is clearly another setback for the Alzheimer's community.

Elan (ELN) previously announced that recruitment for the first 18-month study of the drug was completed at the end of 2008. It appeared at that time that study results where forth coming. The cause of the current delay is Johnson and Johnson's decision to continue adding patients to the study.

“We are conducting some of the largest-scale trials ever in Alzheimer’s disease,” When they are complete, we expect to have a very comprehensive understanding of the clinical impact of bapineuzumab.” -- Eric Yuen of Johnson & Johnson’s Janssen Alzheimer Immunotherapy unit

It is easy to understand why the Alzheimer's community is disappointed, the last "new" drug approval for Alzheimer’s was Namenda, from Forest Laboratories (FRX) in 2003.

By my count, about 10 experimental drugs for Alzheimer's disease have failed in clinical trials since 2003.

Investors have been reacting wildly to news on Bapineuzumab and other experimental drugs. Take a look at this chart from Elan (ELN) dating back to March, 2001.

You'll notice that Elan' stock traded at a high around 60 in 2001. In the next year and a half it plunged to below $2 a share.

Back up to near $30 a share in 2005. Another fast hard plunge to $3 a share. Then all the way back up to $37 on the Bapineuzumab news. The stocks is now trading in the $7 area.

This comment by Ian Hunter, an analyst at Goodbody Stockbrokers in Dublin sums up the current situation, “It’s unfortunate for patients and physicians who are looking for some progress in Alzheimer’s disease, but that’s the nature of things.”

More About the Alzheimer's Reading Room
Advice and Insight -- Alzheimer's Caregiving

Dementia and the Eight Types of Dementia

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Communicating in Alzheimer's World

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Dr Oz Alzheimer's Memory Quiz (Test)

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

Is it Really Alzheimer's or Something Else?

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

A Moment in Time -- Dotty Remembers Last Week.

2010-03-17T20:45:00.001-04:00

Maybe Dotty will win again. If she does I'll say -- Chicken Wings......

By Bob DeMarco
Alzheimer's Reading Room

Those of you that are following along know that Dotty is in the moderate to severe stage of Alzheimer's disease. She was officially diagnosed with dementia more than five years.

Its not unusual for Dotty to say, I'm hungry, I'm starving within ten to fifteen minutes of eating. It is not unusual for Dotty to ask right around 3:30 in the afternoon, did we eat today?

When I say yes we ate, she sometimes asks what did we eat? When I tell her she usually gets this bewildered look on her face. Like she can't believe it.

Sometimes she challenges me and says she didn't eat. Not anything. She honestly believes she has not had a thing to eat all day.

Many of you know the drill. Dotty really doesn't remember much of anything.

Sometimes we spend two or three hours in an outdoor restaurant. When we drive back by the restaurant on the way home Dotty will say, wow, look at that place we should go there some time.

I asked Dotty right after her 4 hour birthday party last year how she liked the birthday cake. She answered, what birthday cake?

I am use to this by now. In fact this is what I expect.

Tonight is bingo night. So I ask Dotty, how did you do last week?

She looks me right in the eye and says, I won fifty dollars. My eyes pop wide open. Dotty did win 50 bucks a week ago.

I then ask her how did you win. She tells me, they gave her the money. I say didn't you get bingo? She tells me No. I then ask, why did they give you 50 dollars? She says, I don't know they just gave it to me.

Dotty won at Bingo several times in the past years. She did not remember winning the next morning. Not once.

This is one thing that is fascinating about dementia. You get the occasional lucid moment. In this case really a half lucid moment.

This also reminded me of the when my father was dying from cancer. He would have an occasional great day. Those great days some how fill you with a false sense of hope. You try not to think it but you can't help it -- miracle about to happen?

What I can say is, Dotty telling me she won 50 dollars last week made me feel really happy. In the moment, it was like the good old days. It reminded me how much fun Dotty was/could be. We were actually having a conversation about something that happened in the not too distant past.

You might think I am sad. I'm not. I'm mystified.
_______________________________________
On a separate note. Tonight is the last night of bingo for this Florida season. This means no more three hour vacations for me, and no more bingo for Dotty.

Last year Dotty said every week that she didn't want to go to bingo. This year she said every week she did want to go. Interesting for sure.

I guess you could say Dotty and I have come a long way together.

In an hour and a half, I'll go pick up Dotty and her friends. Maybe Dotty will win again. If she does I'll say -- Chicken Wings.

I'll update this story one way or the other late tonight if you want to check back in.

Why did Dotty remember the 50 Bucks?

Max?

Late Note: Dotty didn't win at bingo. Her friend Josie told me she didn't have much to say this week. Mom did seem a little bit out of it when I went in to pick her up from bingo. Not bad.

No doubt bingo is one of the ways to go with someone suffering from Alzheimer's dementia. At bingo you get three good things in my opinion: use of the brain as an exercise, bright light, and a good amount of socialization. Being in a large room with lots of people is also a positive.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Five Foods That Might Help Prevent Dementia, Cancer and Heart Disease

2010-03-17T14:14:00.004-04:00

Mangiare! Mangiare! Sei quello che mangi......

By Bob DeMarco
Alzheimer's Reading Room

I advocate Alzheimer's prevention. For me, this means eating things that lower cholesterol, keep my heart healthy, and in general help my body ward off heart disease, cancer and dementia. I now realize you need to have a good awareness of all body parts, especially your vital organs.

The interesting thing to me is that eating healthy is easy once you start focusing on the long term benefits.

Mom is almost 94. Maybe I will live to be 120. So my life is not even half over. If I make it to 100, I assure you my blogging will be packed with humor. When your are 100 you can say anything you want and never get in trouble -- right?

1. Cinnamon: May help control blood sugar and cholesterol.
How to eat: Sprinkle on coffee or oatmeal. We do both. Cinnamon is my personal favorite. I start the day off with cinnamon in my coffee. Then I start blogging if mom doesn't wake up. Lots of clinical trials ongoing at all times.

2. Sardines: They are high in omega-3’s, contain virtually no mercury and are loaded with calcium. They also contain iron, magnesium, phosphorus, potassium, zinc, copper and manganese as well as a full complement of B vitamins.
How to eat: Choose sardines packed in olive or sardine oil. Eat plain, in a salad, or on toast. The big bang. Dorothy and I just shoot em in.

3. Curcumin: A yellow substance found in the spice Turmeric, has antioxidant, non-steroidal anti-inflammatory (NSAID), and cholesterol-lowering properties, all of which make it a good candidate in the prevention and treatment of Alzheiemr's disease. Dr. Oz suggests two servings a week.
How to eat: Mix with scrambled eggs or in any vegetable dish. Mellow yellow? This is new to us, even though I had read the research I jumped on board after Dr Oz recommended it. I dig Dr. Oz. On going clinical trials on curcumin out the yin yang.

4. Canned pumpkin: A low-calorie vegetable that is high in fiber and immune-stimulating vitamin A. Canned pumpkin fills you up on very few calories.
How to eat: Mix with a little butter, cinnamon and nutmeg. Kinda like a non pie pumpkin pie. Have to laugh at myself here. For some reason I am unable to perfect the making of a pumpkin pie.

5. Beets: Think of beets as red spinach because they are a rich source of folate as well as natural red pigments that may be cancer fighters.
How to eat: Fresh, raw and grated to make a salad. Heating decreases the antioxidant power. I put this one last for a reason, I don't eat beets period. Mom digs them. Spinach? Can't get enough of it. Lightly cooked, raw, yeah man.

Feel free to use the comments box below to add your two cents. This was not intended to be a comprehensive list.

I do recommended that you eat all of these a couple of times a week. Can't hurt and might just help your brain.

Do they help? I believe they do. They also give me a nice positive attitude while I am eating them. Positive attitude is also a good thing and just might help ward off Alzheimer's disease. They also make me feel healthier. Mind over matter?

Also read
Eat a Mediterranean Style Diet to Ward Off Alzheimer's

Olive Oil

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Advice and Insight -- Alzheimer's Caregiving

2010-03-17T01:25:00.011-04:00

"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest." -- Thomas Moore....

By Bob DeMarco
Alzheimer's Reading Room

The Metamorphosis of This Alzheimer's Caregiver
The more I learned the more I wanted to know. I learned a great deal about Alzheimer's disease and dementia--including the science. It helped me understand a very mystifying disease. It helped me to put a frame around something that is difficult if not impossible to describe.

Communication in Alzheimer's World
Let's face it, dealing with dementia is not easy. Understanding Alzheimer's disease is not easy...

Alzheimer's World -- Two Circles Trying to Intersect
When Alzheimer's strikes communication and behavior change abruptly -- overnight. It is up to the caregiver to adjust since the person suffering from dementia is incapable of the adjustment. Understanding this need is the first big step.

The Metamorphosis of This Alzheimer's Caregiver (Part Two)
It is difficult to describe the range of emotions a caregiver might feel or experience in a single day. Imagine being happy and then sad, caring then angry, focused then frustrated -- an almost endless stream of feelings and emotions that conflict.....

The Metamorphosis of This Alzheimer's Caregiver -- I Wish
Once I entered Alzheimer's world I did learn something fascinating -- my mother is full of feelings and emotion. I learned that I could connect with her....

The Alzheimer's Hamster Within YOU
I believe changing behavior, understanding what is happening, and a willingness to change the communication dynamic are the first steps to Alzheimer's caregiver happiness.

Subscribe to the Alzheimer's Reading Room
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How We Beat Alzheimer's Incontinence -- A Solution
We are on a three day roll. No pee pee. No pee pee pajamas. No pee pee underwear. No pee pee pants...

How do Alzheimer's Caregivers Think and Feel?
Which of he following apply to you as an Alzheimer's caregiver? Which of these constantly bother you?.....

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's
I often get asked question about how I deal with my mother when she evidences erratic behavior.

Alzheimer's and the Dreaded Bowel Movement
I knew the solution to the dreaded bowel movement problem for years. I couldn't get my mother to cooperate. When she wouldn't cooperate, I would give up. At least three or four times over a two year period. I was finally able to implement my solution for one simple reason -- I was learning new and better techniques as an Alzheimer's caregiver over time.

Alzheimer's Caregiver Lament -- This is Not the Person I Knew
In order to communicate effectively with a person suffering from Alzheimer's disease you need to come to an understanding that they are now living in a new world -- I often refer to this as Alzheimer's world...

Alzheimer's Caregiver Lament -- I can't take her out because she eats with her hands
The positive effects of socialization, initiative, and motivation on the part of Alzheimer's sufferers and their caregiver should not be overlooked. I believe these are as important as the medication......

I promised not to put my parents in a nursing home
The decision to keep a parent home or place them in a facility is never an easy choice, and is usually contemplated for a long time. The horror stories we’ve all heard about nursing homes can make anyone cringe.

Twinkle Twinkle Little Star
Sometimes while looking at all those stars I begin to look at the space between the stars -- I call this the Blue Nowhere...When I look at the Blue Nowhere, I begin to imagine all the persons suffering from Alzheimer's disease. The Blue Nowhere is very vast.

Alzheimer's Caregiver Love
"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest." -- Thomas Moore.....

Random Thought at the End of 2009
Alzheimer's will try to rob the Alzheimer's caregiver of their spirit. It will try and send them into the black hole of depression. Every day Alzheimer's whispers in the ear of the caregiver -- give up.

Alzheimer's and the Thyroid Revisited
People who are hypothyroid feel as though they have mild Alzheimer's and depression all mixed into one bad day. Get your thyroid tested. Nearly one in five people over the age of sixty has some degree of hypothyroidism, meaning a sluggish thyroid. The sympotms include forgetfulness, weight gain, depression, dry skin, intolerance to cold, muscle aches, and fatigue.

Which Drugs Increase the Risk of Falling for the Elderly
Falls are the leading cause of both fatal and nonfatal injuries for adults sixty-five and older...

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

New Approach Yields Exciting Results on Origins of Alzheimer’s Disease

2010-03-16T17:01:00.002-04:00

“It’s an important step in understanding and ultimately slowing, stopping or even reversing the effects of Alzheimer’s disease.”.....

Alzheimer's Reading Room

A new approach developed for studying brain synapses has yielded valuable information about the production of Amyloid-Beta oligomers (clumps of the Abeta peptide) known to play a key role in the onset of Alzheimer’s disease.

Testing of New Drug to Block Alzheimer’s Causing Abeta42 Aggregation Underway

Published in the March 17 issue of the Journal of Neuroscience and funded by Cure Alzheimer’s Fund (CAF), the research of Dr. Sam Gandy, Professor in Alzheimer’s disease Research at the Mount Sinai School of Medicine and a member of the CAF research consortium, and his colleagues, could uncover a new lead in the fight for prevention of this devastating disease.

“It is crucial that we understand how Abeta clumping is regulated, especially at the synapse, if we are to learn how to prevent, stop or slow Alzheimer’s pathology. Abeta42 is believed to be the first subtype of the Abeta peptide to oligomerize (clump together), and therefore most harmful to the brain,” Gandy said. “Now that the neurotransmitter receptor, ‘Group II mGluR’, has been identified as a source of Abeta42, we can find ways to reduce Abeta42 generation at the synapse. Lowering levels of Abeta42 would be predicted to hinder formation of poisonous clumps (oligomers).”

Gandy’s new approach is based on the use of isolated intact nerve terminals (synapses) from mice bred specially using human AD genes. Soong Ho Kim, a postdoctoral fellow in Gandy’s lab, has pioneered this approach. The new system aided in isolating a particular receptor at the synapse, known as “Group II Metabotropic Glutamate Receptor” (or mGluR). Group II mGluR selectively controls the formation Abeta42 at the synapse.

Studies have shown Abeta and its variant Abeta42 play a critical role in Alzheimer’s pathology. Previous research backed by CAF has shown that Abeta42 oligomers are formed at the neuronal synapse, a specialized way station where messages pass from one nerve cell to the next cell in the circuit. Disruption of synapses by Abeta42 oligomers is believed to underlie the loss of brain function in AD.

In unrelated work, a neuroscience bio-tech company, in the process of researching anti-depressants, has developed a safe and orally active drug that blocks ‘Group II mGluR’. In light of Gandy’s new discoveries, he and his colleagues are using the new synaptic terminal system to test the drug before moving on to test mice to determine if the drug can block Abeta from aggregating, which could be a leap forward in the search for preventative therapies.

“The development of this innovative approach by Dr. Gandy and his team could open up new doors of research on this devastating disease,” said Tim Armour, President and CEO of Cure Alzheimer’s Fund. “It’s an important step in understanding and ultimately slowing, stopping or even reversing the effects of Alzheimer’s disease.”

About Cure Alzheimer's Fund

Cure Alzheimer's Fund™ is a 501c3 public charity whose mission is to fund research with the highest probability of slowing, stopping or reversing Alzheimer's disease. Cure Alzheimer’s Fund is characterized by a venture approach to philanthropy, which targets funding to specific research objectives. All expenses and overhead is paid for by its founders and all contributions go directly to research. The Foundation has no financial or intellectual property interest in the research funded, and will make known the results of all funded research as soon as possible. Cure Alzheimer’s Fund is a national organization with offices in Boston and Pittsburgh.
For more information, visit www.curealzfund.org.

Media Contact: Contact: David Roscow, 703-276-2772 x21

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Original content Bob DeMarco, the Alzheimer's Reading Room

Judy Berry on Challenging Dementia Behavior

2010-03-16T15:58:00.003-04:00

The ONLY Way to Deal with Challenging Behavior in Persons with Dementia IS "To PREVENT IT in the First Place".....

By Bob DeMarco
Alzheimer's Reading Room

Editor Note: This is not a full blown article by Judy Berry. Instead it is her comment to comments under the original article -- Joleen's Dad Out in the Cold -- What Should She Do?.

This issue: challenging and violent behavior of Alzheimer's patients is important to all Alzheimer's caregivers. This thread was initiated by the this article -- Nobody Wants Our Dad

By Judy Berry
I have been working with this very vulnerable population, those with dementia and challenging/aggressive behavior, for the last 12 years.

After developing a model of specialized dementia care that has been successful in preventing the aggessive behavior in those that have had repeated discharges from other facilities and hospitalizations for behavior I have learned a few critical things I would like to share.

I'll start by saying I believe "NO One", the resident with the behavior, other residents, or staff should have to be subjected to violent behavior. We have learned that 90% of behavior can be contolled and/or eliminated by "pro-actively" Recognizing and Meeting the underlying need of the person displaying the behavior whether it be physical OR emotional.

There is a critical need for appropriate ratios of highly trained staff (and you are right when you say not everyone should work with people with dementia related behavior), but another huge piece often neglected in understaffed places is the ONGOING mentoring and support necessary to keep even the best trained staff on track and focusing on the emotional needs of the individual resident, and controlling their own non-verbal communication and reactions to that persons needs.

We learned that both professional and informal caregiver "perception" of what is actually going on in the minds of a person with advancing dementia has a direct correlation to how they treat the individual.

For instance, if they believe some of the readily available information that the "person" is no longer in there, or the "person" they knew is slowly disappearing before their eyes because of the effects on the brain, they are giving themselves permission to treat that person differently.

Talking about patients in front of them like they are not there, not paying attention to their personal dignity emotions and feelings, ignoring their behaviors; like calling out, crying, or just withdrawing etc, and not giving them choices are just a few of the things that frequently will happen if the caregiver has a misguided perception.

All these behaviors on the part of the caregivers will produce challenging behavior, but often well meaning caregivers are not even aware they are doing them.

I can truly empathize with Joleen and others when they talk about their pain and frustration when told "No place wants to take their loved one!" and the intense fear of what will become of them. I lived with that pain and uncertainty for 7 years with my own mom, just to see her succumb to the system that uses overmedication to make our loved ones compliant in their environment.

There are some medications that can be appropriate at times, in limited amounts to avert some of the anxiety our loved ones are experiencing with their disease. The problem has always been and still is, in my opinion, that we need to be asking ourselves and the prescribing physicians WHY are we using them, to reduce anxiety in the resident; or, to make life bearable for an understaffed facility that offers little in the way of training and "ONGOING staff support".

In the words of Jan Garard RN, Quality Improvement Coordinator and Trainer for MN Dept of Human Services,

The ONLY Way to Deal with Challenging Behavior in Persons with Dementia IS "To PREVENT IT in the First Place"

http://www.dementiacarefoundation.org/

Judy Berry is the founder and CEO of Lakeview Ranch. Lakeview Ranch provides a unique model of specialized dementia care for those with aggressive behavior. The model focuses on prevention, rather than treatment to manage behavior. Judy is also the Executive Director and founder of the Dementia Care Foundation.

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National Alzheimer's Project Act - S.3036

2010-03-16T09:30:00.004-04:00

The National Alzheimer's Project Act would create the country’s first national office responsible for leading government efforts to treat and prevent Alzheimer’s disease.....

By Bob DeMarco
Alzheimer's Reading Room

Alzheimer’s is a devastating disease that takes a tremendous emotional and economic toll on individuals and their families. “While there have been promising advances in research and treatment to combat this disease, our nation needs a more effective, coordinated national strategy aimed at preventing, delaying and finding a cure for Alzheimer’s. This legislation, which would coordinate a strong and sustained federal research effort, represents a critical step toward that goal. This is particularly important now, at a time when the baby boom generation is aging and moving into the years of highest risk for the disease. -- Susan Collins (R-ME)

The National Alzheimer's Project Act

Senators Evan Bayh (D-IN) and Susan Collins (R-ME) introduced the bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions.

The Bill

Purpose of the Office -- The Office shall--

accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer's;
be responsible for the creation and maintenance of an integrated national plan to overcome Alzheimer's;
help to coordinate the health care and treatment of citizens with Alzheimer's;
ensure the inclusion of ethnic and racial populations at higher risk for Alzheimer's or least likely to receive care, in clinical, research, and service efforts with the purpose of decreasing health disparities in Alzheimer's;
oordinate with international bodies to integrate and inform the fight against Alzheimer's globally;
and provide information and coordination of Alzheimer's research and services across all Federal agencies.

Director of the Office

APPOINTMENT- The President shall appoint a Director of the Office
DUTIES OF THE DIRECTOR-

IN GENERAL -- The Director of the Office shall --

oversee the creation and updating of the national plan described in subparagraph (B);
use discretionary authority to evaluate all Federal programs around Alzheimer's, including budget requests and approvals; and
prepare and submit to the President the annual budget estimate for the Office.

NATIONAL PLAN -- The Director of the Office shall carry out an annual assessment of the Nation's progress in preparing for the escalating burden of Alzheimer's, including both implementation steps and recommendations for priority actions based on the assessment.

SERVICE BY DIRECTOR -- The Director of the Office shall serve on the advisory board of the Office of Science and Technology to promote research efforts into mechanisms to slow and stop the development of Alzheimer's for those at risk of developing the disease.

Advisory Council --

IN GENERAL- There is established in the Office an Advisory Council on Alzheimer's Research and Treatment (referred to in this Act as the `Advisory Council')

FEDERAL MEMBERS -- The Advisory Council shall be comprised of the following experts:

A designee of the Centers for Disease Control and Prevention.
A designee of the Administration on Aging.
A designee of the Centers for Medicare and Medicaid Services.
A designee of the Indian Health Service.
A designee of the Office of the Director of the National Institutes of Health.
The Surgeon General.
A designee of the National Science Foundation.
A designee of the Department of Veterans Affairs.

NON-FEDERAL MEMBERS -- In addition the Advisory Council shall include 12 expert members from outside the Federal Government, which shall include--

2 Alzheimer patient advocates;
2 Alzheimer caregivers;
2 health care providers;
2 representatives of State health departments;
2 researchers with Alzheimer-related expertise in basic, translational, clinical, or drug development science; and
2 voluntary health association representatives, including a national Alzheimer's disease organization that funds research and has demonstrated experience in care and patient services, and a State-based advocacy organization that provides services to families and professionals, including information and referral, support groups, care consultation, education, and safety services.

Annual Report -- The Director of the Office shall submit to Congress --

an annual report that includes an evaluation of all nationally and federally funded efforts in Alzheimer's research, clinical care, institutional, and home- and community-based programs and their outcomes; and
an annually updated national plan.

Sunset -- The Office shall expire on December 31, 2025.

Bayh, Collins Combat Alzheimer’s Disease
National office would coordinate federal research to improve treatment and prevention; develop a cure

Senators Evan Bayh (D-IN) and Susan Collins (R-ME) today introduced legislation to create the country’s first national office responsible for leading government efforts to treat and prevent Alzheimer’s disease. Located within the Department of Health and Human Services, the National Alzheimer’s Project Office would coordinate and oversee federal research on Alzheimer’s disease to develop a plan to combat the disease and to eventually develop a cure.

“Alzheimer’s disease is a debilitating illness that affects more than 5 million Americans and their families every day,” said Bayh, a member of the Senate Special Committee on Aging. “Creating the National Alzheimer’s Project Office will ensure we get better research, improved patient care and hopefully a cure for this devastating disease. At a time when medical research funds are too scarce, it is critical that every dollar spent on Alzheimer’s disease be used to get the best possible care for patients.”

“Alzheimer’s is a devastating disease that takes a tremendous emotional and economic toll on individuals and their families,” Collins said. “While there have been promising advances in research and treatment to combat this disease, our nation needs a more effective, coordinated national strategy aimed at preventing, delaying and finding a cure for Alzheimer’s. This legislation, which would coordinate a strong and sustained federal research effort, represents a critical step toward that goal. This is particularly important now, at a time when the baby boom generation is aging and moving into the years of highest risk for the disease.”

“On behalf of the millions of people living with Alzheimer’s and the millions more at risk of developing this terminal disease in the future, the Alzheimer’s Association is grateful for the leadership of Senators Bayh and Collins,” said Robert J. Egge, the Alzheimer’s Association’s Vice President of Public Policy and Advocacy. “This legislation, if enacted, would significantly improve the nation’s ability to overcome the rapidly mounting Alzheimer crisis.”

Alzheimer’s disease is a progressive, disabling and terminal disease of the mind and body. All those who have Alzheimer’s disease will eventually require around-the-clock care. Approximately 5.3 million Americans have Alzheimer’s disease, and that number is estimated to reach 7.7 million by 2030. Twenty-three percent of all Americans have had to care for a parent or relative with Alzheimer’s.

The bipartisan National Alzheimer’s Project Act follows through on a key recommendation from the Alzheimer’s Study Group, which issued a report in 2007 calling on Congress to create a national office dedicated to addressing the disease.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Alzheimer’s Disease: How Stem Cell Research Will Make a Difference

2010-03-16T01:15:00.000-04:00

If you are in New York you should consider attending this panel discussion on Alzheimer's and Stem Cell research....

By Bob DeMarco
Alzheimer's Reading Room

On behalf of The New York Stem Cell Foundation (NYSCF) with The Charles Evans Foundation and support from the Geoffrey Beene Gives Back® Initiative, we hope you can join us for Alzheimer’s Disease: How Stem Cell Research Will Make a Difference, a free educational panel for the public. The panel-- comprised of leading stem cell scientists, policymakers and patient advocates—will be moderated by Washington Post health and politics reporter Ceci Connolly and focus on the latest approaches to understand and cure this devastating disease.

The Alzheimer’s panel takes place Thursday, March 25, 2010 6:30 p.m. to 8 p.m., The TimesCenter, 242 West 41st Street at Eighth Avenue, in Manhattan.

Panelists include Kevin Eggan, Ph.D., NYSCF Chief Scientific Officer and Assistant Professor of Molecular and Cellular Biology at Harvard University; Howard Fillit, M.D., Founding Executive Director of the Institute for the Study of Aging (ISOA) and the Alzheimer’s Drug Discovery Foundation (ADDF); Sam Gandy, M.D., Ph.D., Associate Director of the Mount Sinai Alzheimer’s Disease Research Center and Chairman Emeritus of the National Medical and Scientific Advisory Council of the Alzheimer’s Association; William Haseltine, Ph.D., President The Haseltine Foundation for Medical Sciences and the Arts, Chairman, Haseltine Global Health, LLC; Greg Simon, Senior Vice President of Worldwide Policy at Pfizer, Inc.; and Susan L. Solomon, J.D., CEO, NYSCF.
______________________________________
Founded in 2005, NYSCF is dedicated to furthering stem cell research to advance the search for cures of the major diseases of our time. NYSCF opened the first privately funded stem cell laboratory in New York City in March 2006 to serve as a “safe haven” where scientists can conduct advanced stem cell research free of federal restrictions. The organization supports scientists engaged in stem cell research through grants, fellowships and symposia; runs collaborative, state-of-the-art research facilities directly focused on curing disease; and educates the public about the importance and potential benefits of stem cell research.

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Joleen's Dad Out in the Cold -- What Should She Do?

2010-03-15T19:54:00.000-04:00

His assisted living home called 911 after some violence and he is still in the hospital geri-psych ward 5 weeks later drugged out of his mind!....

By Bob DeMarco
Alzheimer's Reading Room

RE: Nobody Wants Our Dad

Joleen commented:

I am in a similar situation with my father currently in Michigan. His assisted living home called 911 after some violence and he is still in the hospital geri-psych ward 5 weeks later drugged out of his mind!

His assisted living home recently called to say they won't be able to take him back because his psychiatrist can't GUARANTEE that he won't have a violent outburst again (of course, he can't guarantee such a thing)... so now he's homeless and we're stressed while trying to figure out this confusing assisted living/nursing home matrix where there seems to be no obvious rules for who WILL and WON'T take him.

It's a ridiculous system! At least geri-psych hasn't released him yet so we still have time... and I believe my mother may have just found a home to take him! She has been working on this day and night...

Comments, Insight and advice wanted on this issue.

More About the Alzheimer's Reading RoomHow do Alzheimer's Caregivers Think and Feel?

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The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Looking for Meaning Behind the Words

2010-03-15T15:47:00.001-04:00

She told us that she used to want to run her head into a brick wall when her mother started repeating the same story over and over.....

By Tom and Karen Brenner

There is wonderful little tea shop that opened near us, and I have been visiting it with friends regularly. A month or so ago, I met an old acquaintance there; she wanted to learn more about the work that Tom and I do using the Montessori Method to help people living with Alzheimer’s. Her mother was recently diagnosed with Alzheimer’s and she wanted to get some tips on how to better help her mom.

As I was paying the owner of the tea shop that day, she looked up at me with tears in her eyes and told me that she had overheard some of our conversation about Alzheimer’s. Her mother, too, was living with Alzheimer’s and the entire family was in great distress and feeling at a loss about how to help her mom. We talked for a few minutes, and I was only able to say a few things to the tea shop owner. I emphasized to her that she should be in the moment with her mom, and learn to go with her mom’s thought processes as they were at that moment.

I also encouraged her to look for the meaning behind the words that her mother might say, especially when her mother repeated the same thought or the same story over and over. I told her that sometimes people living with Alzheimer’s say the same things over and over because they can’t find the words they want to express themselves, but they need very much to share some emotion, or some memory. I told the tea shop owner to listen carefully to what her mom said and validate the emotions or the feelings behind the words.

A couple of weeks later, Tom and I found ourselves with a few minutes to spare before an appointment, so I suggested that we have tea in the new tea shop. Tom had never been there before, and I thought he would like it.

The tea shop owner came over to talk to us about her mother and she then told us that the simple ideas that I had shared with her on my earlier visit had changed her life!

She told us that she used to want to run her head into a brick wall when her mother started repeating the same story over and over, but now she listens carefully, trying to find the meaning behind the repetitive words. She told us that recently her mother was repeating a story about her childhood. The tea shop owner told her mom that she understood that her mother must have had a wonderful childhood, and that she must have been very happy then. The owner told us that her mother got a huge smile on her face, and was so pleased that her daughter understood her.

It is a wonderful thing to go into a tea shop to enjoy a cup of tea and a scone and to come out of the shop knowing that you have changed someone’s life for the better.

By the way, the tea and scones are wonderful, and the owner is thinking of holding teas for caregivers as a way to help other people who are caring for loved ones with Alzheimer’s.

Tom and Karen Brenner are researchers, consultants, trainers and writers dedicated to working for culture change in the field of aging. Tom is a gerontologist and has specialized in creating and researching dementia specific training programs. Tom is a training and research specialist for the Department on Aging for the State of Illinois. Karen Brenner is a Montessori educator and has specialized in working with children who are deaf or communication disordered. Karen is a contributing writer and on-air presenter for National Public Radio and recently won the Professional Journalism Society award for excellence in writing.

More About the Alzheimer's Reading Room
How do Alzheimer's Caregivers Think and Feel?

Advice and Insight -- Alzheimer's Reading Room

The Alzheimer's Hamster Within YOU

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's

Communicating in Alzheimer's World

Dr Oz Alzheimer's Memory Quiz (Test)

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Alzheimer's World -- Two Circles Trying to Intersect

Alzheimer's Disease -- The Front Row

Is it Really Alzheimer's or Something Else?

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Original content Tom & Karen Brenner , the Alzheimer's Reading Room

Alzheimer's Care -- Good Cop, Bad Cop

2010-03-15T09:42:00.003-04:00

If you are a bad cop, you are probably upset all the time by the behavior of your Alzheimer's patient. If you are a good cop, you probably learned that your Alzheimer's patient is not guilty of a crime.....

By Bob DeMarco
Alzheimer's Reading Room

Are you a Good Cop or a Bad Cop? This is a question all Alzheimer's caregivers should ask themselves from time to time.

I'm thinking back to the beginning when my mother would just keep eating and eating. She was always hungry. Once I took her out on Easter Sunday to brunch. It was one of those buffet style affairs. They had everything under the sun to eat. I watched in both amazement and horror as my mother "chowed down".

I couldn't believe that my tiny mother was eating more than me.

We get home and we get changed and I am thinking to myself, I am so stuffed that I don't think I will be able to eat again that day. It was around 2:30 PM in the afternoon.

I'm sitting in the living room and here comes Mom with a bowl of cereal in her hand. I can't remember exactly what I said, but I do know this -- bad cop.

Taking this one step further. I was constantly reminding Mom, you just ate. This was long before good cop came on the scene. It took a while to understand that I could tell Mom she just ate until I turned purple, and it wouldn't make any difference.

Mom didn't remember she ate, and didn't believe me when I told her she ate. She did believe that she was hungry. It didn't matter that I thought that it was impossible that Mom was hungry, it was what she thought that mattered in this situation.

Bad cops wants to explain -- the impossible to understand -- for someone suffering from Alzheimer's disease. Good cop finally comes to the conclusion that what bad cop is doing won't work and bad cop behavior only makes things worse.

Its six years later. Mom is still saying -- I'm hungry, I'm starving. It is not unusual for this to happen 15 minutes after she just ate a big meal. If mom eats then takes a nap there is one thing I know for certain, as soon as she opens her eyes she is going to say one of two things: did we eat?, or I'm hungry.

Bad cop would say in a rather harsh tone of voice -- you can't be hungry you just ate. Good cops says in a nice calm low voice -- we ate a little while ago but we are going to eat again soon. Doesn't work every time, but usually works. The word "we" works better than the word "you".

If you are a bad cop, you are probably upset all the time by the behavior of your Alzheimer's patient. If you are a good cop, you probably learned that your Alzheimer's patient is not guilty of a crime. The bad cop fights the person they are caring for, the good cop fights the disease.

Here is today's message. We are not COPS. We are Alzheimer's caregivers.

Try to learn to use positive reinforcement instead of contradicting your loved one.
Negative statements usually result in negative feelings and behavior.
Positive statements engender feelings of happiness and contentment.
Try to remember you are fighting a disease and not the person.

Make love, not war.

The word care has many meanings in the context of Alzheimer's. Consider:

If you care about someone, you feel they are important to you and are concerned about their well being.
If you care for someone, you feel a lot of affection for them.
If you care for someone, you look after them.
To take care of a problem, task, or situation means to deal with it.
Your cares are your worries, anxieties, or fears.

Take Care.

More About the Alzheimer's Reading Room
How do Alzheimer's Caregivers Think and Feel?

Advice and Insight -- Alzheimer's Reading Room

The Alzheimer's Hamster Within YOU

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's

Communicating in Alzheimer's World

Dr Oz Alzheimer's Memory Quiz (Test)

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Alzheimer's World -- Two Circles Trying to Intersect

Alzheimer's Disease -- The Front Row

Is it Really Alzheimer's or Something Else?

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Nobody Wants Our Dad

2010-03-14T14:41:00.005-04:00

Three Daughters Battle Alzheimer's and the Healthcare System.....

By Bob DeMarco
Alzheimer's Reading Room

Angil Tarach-Ritchey wrote about earlier about Living Alone with Dementia. She wonders who is going to take care of all the people suffering from Alzheimer's and dementia that don't have anyone. Or who have uncaring children.

Jennifer Petersen, joined by other family members, sits with photographs of her parents in happier times. Richard Petersen, her father, has Alzheimer’s and is in detention with pneumonia.

This story is about three daughters who care -- Jennifer and Jodi Petersen, and Kristin Schmidt.

On one hand this story is wonderful, this Dad has three daughters that care. They want to help him. On other hand it is horrific. As Jodi Petersen says,

"Nobody wants our dad"

Richard Petersen, the Dad of these three wonderful women, suffers from Alzheimer's disease. Through no fault of his own, Richard is mean. Because he is hard to deal with, nobody wants him. Only the few understand that dementia is a medical condition, not a psychiatric condition.

When Alzheimer's patients are mean they usually end up locked up in a county psychiatric facility or similar institution.

These patients are consider to be dangerous to themselves and every one around them. Usually they end up on anti-psychotic drugs. It doesn't seem to matter that there is substantial research indicating that these drugs often make matters worse with persons suffering from Alzheimer's disease.

So what happened to Richard? He was thrown out of his care facility -- nobody wants him. He bounced around a couple of times and then the police showed up at his last stop and arrested him.

This story doesn't get any better. Richard Petersen's ended up in the Milwaukee County Behavioral Health Division, where he has been placed under emergency detention by court order.

"It is not unusual and unfortunately people are treating the natural process of aging as if it was a psychiatric disorder, where senior citizens need to be locked up in psychiatric units, where what they really need is a good geriatrician," said Patricia M. Cavey, an attorney who specializes in elder law and who has consulted with the Petersen family.

While locked up Richard contracted pneumonia. It might be too late to do anything.

When I read this story, I wondered to myself if the story might have gone differently if the daughters were subscribers to the Alzheimer's Reading Room? I wondered if they would have reached out here for help, advice, or insight. There are a minimum of ten readers on this website that are familiar with these kinds of situation and know what to do in these situations.

I thought about Judy Berry. Judy went through a difficult situation with her mother. Judy understands how difficult it is to deal with Alzheimer's patients suffering from behavioral problems. This lead her to found the Lakeview Ranch. The Lakeview Ranch is for dementia patients that nobody wants.

Would it have made a difference? It is impossible to know, everything happened so fast to these three women and their dad. I wish we would have had the opportunity to find out.

This story is one of the reasons that I continually ask subscribers to share information, so that other caregivers can find us. Just in case.

To read the detailed, well written story about Richard and his wonderful daughters -- go here.

More About the Alzheimer's Reading Room
How do Alzheimer's Caregivers Think and Feel?

Advice and Insight -- Alzheimer's Reading Room

The Alzheimer's Hamster Within YOU

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's

Communicating in Alzheimer's World

Dr Oz Alzheimer's Memory Quiz (Test)

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Alzheimer's World -- Two Circles Trying to Intersect

Alzheimer's Disease -- The Front Row

Is it Really Alzheimer's or Something Else?

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Living Alone with Dementia

2010-03-14T00:05:00.004-05:00

Yesterday was a difficult day. My agency was called to provide care for an elderly woman living alone with Alzheimer’s....

By Angil Tarach-Ritchey
Alzheimer's Reading Room

Prior to going out to meet her, I was told Adult Protective Services had already been involved, but no one would be there at her home with her when I was scheduled to visit. This is never a good idea. We always want someone in the meeting that can witness what took place. The son who called us said he couldn’t make the meeting. Because I know and trust myself, and already had concern for a lady living alone with dementia, I went to her home.

I expected to find her home alone in a terrible situation, and was fearful of what I might find. I was pleasantly surprised to find her home health nurse there, so at least someone was able to witness my visit, and was involved in her care.

I met a beautiful 88 year old woman who I was happy to see was clean, groomed well, and lived in a clean environment. Not what I expected. We all base expectations on our past experiences, and I have seen some really bad situations. She was very friendly, talkative and from outward appearances appeared healthy, physically and mentally.

The nurse filled me in on her recent hospitalizations, and family situation. This is when the scenario took a turn for the worse. This lady had been driving and caring for herself until her church family noticed something was very wrong. A wonderful woman from the church family took it upon herself to help. Mind you this patient has adult children.

Her recent hospitalizations were a blessing because that is when the home health agency was called to provide medical monitoring in her home.

To make this story much shorter than it was I am just going to say this patient has no one in charge of her medical decisions or finances. She is in dire need of someone to help her. What is most concerning is her inability to obtain groceries, eat appropriate meals, drink enough fluids (she was hospitalized both times for dehydration), obtain and take her medications appropriately and handle her finances. Thank goodness she hasn’t fallen, or left home being too confused to find her way back home. As we all know Alzheimer’s is progressive, and this is an issue in the future.

She has already been taken advantage of financially by one family member, and showed me her feelings about a particular incident that she wrote at the time. Very painful to read I must say.

The other family member has been repeatedly contacted by several parties to get involved but fails to show much concern other than for himself.

This leaves her with no one but agency nurses, a social worker, and her lady friend from church to try and figure out how to protect her and keep her safe. This is just one of many vulnerable elderly patients I have wanted to take home. The nurse from the home health agency feels the same way. We even laughed saying we’d have to fight over her!

As nurses we have very little options other than to get Adult Protective Services (APS) involved. My experience with them hasn’t been the best. In this case I believe they were called, made a visit, contacted the family with options and recommendations before there is more action taken. This is where the problem lies. The family tells APS what they want to hear, APS believes it, case closed.

As I said earlier the family was the one that called us to start care. I called the family after my visit and was saddened and angered by their lack of concern or commitment to help. The conversation did not go well and shortly after I reported to the home health nurse what the outcome of that conversation was; the family called and terminated our involvement.

At this point there will be a meeting, APS will be called again, and the professional staff involved will be recommending the patient be appointed a guardian through the court.

This is not the outcome I wanted to see, and I am really sad that this very wonderful woman will be attended to by a stranger that may or may not care, rather than being loved and cared for by her family. The truth is someone has to be responsible for her health and welfare so she is not out there alone and confused.

There are probably more people out there on their own with dementia than anyone will ever know. We only know when someone accidently comes across their path and realizes the vulnerable situation they’re in and does something, or something tragic happens.

We have been called by neighbors, and concerned individuals in these type of cases. They notice something is very wrong with the person that lives next door, or in this case goes to their church. What happens when the neighbor doesn’t pay attention or the individual doesn’t want to get involved? I hate to even think about all those undiscovered persons living alone with dementia.

I can see how this may happen when there is no family and a person stops socializing, but how tragic and sad is it when the family doesn’t care?

Can’t we do a better job at protecting and caring for our elders? Why doesn’t APS do more? As it stands now, it’s up to us as citizens to look out for the elderly. We need to pay attention and get involved. We need to put pressure on Adult Protective Services to do more, to follow up on complaints, to follow up on promises by family members. To place people immediately when there is no alternative to keep them safe and cared for.

Just imagine for a moment being alone and confused. Wouldn’t you hope someone would help you? Let’s be the someone.

More About the Alzheimer's Reading Room
How do Alzheimer's Caregivers Think and Feel?

Advice and Insight -- Alzheimer's Reading Room

The Alzheimer's Hamster Within YOU

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's

Communicating in Alzheimer's World

Dr Oz Alzheimer's Memory Quiz (Test)

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Alzheimer's World -- Two Circles Trying to Intersect

Alzheimer's Disease -- The Front Row

Is it Really Alzheimer's or Something Else?

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

THe Alzheimer's Action Plan

Angil Tarach-Ritchey(RN GCM) has over 30 years of experience, and is a nationally known expert in senior care and advocacy. Angil is also the owner of Visiting Angels in Ann Arbor, Michigan.

Original content Angil Tarach-Ritchey, the Alzheimer's Reading Room

Alzheimer's and the Thyroid Revisited

2010-03-13T14:22:00.009-05:00

Experiencing forgetfulness, weight gain, depression, dry skin, intolerance to cold, muscle aches, or fatigue? You could be suffering from hypothyroidism.....

By Bob DeMarco
Alzheimer's Reading Room

Kerry Runyeon wrote about how as a part of pre-screening testing for an Alzheimer's clinical trial her mother was diagnosed with hypothyroidism. After the introduction of thyroid medication her score on the MMSE rose from 10 to 12. It would be interesting to know if her scores went up on better, more reliable memory tests.

I first wrote about Alzheimer's and the thyroid in 2008. I was fortunate because I received a pre-publication copy of The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems. This book is my bible when it comes to Alzheimer's disease.

Here is what I read on page 82 -- The Less Than Trusty Thyroid.

"Get your thyroid tested. Nearly one in five people over the age of sixty has some degree of hypothyroidism, meaning a sluggish thyroid. The sympotms include forgetfulness, weight gain, depression, dry skin, intolerance to cold, muscle aches, and fatigue. People who are hypothyroid feel as though they have mild Alzheimer's and depression all mixed into one bad day."

I mentioned this to our doctor and he agreed to test my mother. He described her test as suspicious. Suspicious meant not quite hypothyroidism but close enough to be concerned. He took a very cautious approach. The result? My mother laughed and smiled for the first time in over two years. You can read the most recent version of this story here, or go here to read an older version.

These are the opening words from the original article,

I wish I could shout this from the mountain top: when Alzheimer's or dementia present, get the thyroid checked.

I'll challenge you right here and now. Send this article to everyone you know -- especially woman. All you need to do is click the share button at the top of this article and click email and you will be on your way. You don't need to limit your email to Alzheimer's caregivers. This problem is pervasive in adults over 60. Most of them don't know about hypothyroidism.

As far as I know, doctors do not routinely check the thyroid when they order blood tests. The blood test for hypothyroidism is not part of the standard blood test panel. The doctor needs to check the box for this test. The test is inexpensive and is an add on to the standard blood test.

In the past two years, I wrote about this issue -- hypothyroidism -- over and over. I have received emails from people thanking me. They paid attention, mentioned the article to their doctor, and received the test. The diagnosis and the medication changed their live -- Dramatically.

I wrote about Rose Lamatt and her long trip to a diagnosis of hypothyroidism. I included her description -- Thyroid and Alzheimer's, Rose's Real Life Story. Very informative.

And, an amazing story on hypothyroidism -- Alzheimer's and the Thyroid, He Came Back to Life. This one is about a man that was not communicating in any way. The doctor specialists wanted to shock his brain. Fortunately, our own wonderful doctor, Dr. Carlos Chiriboga, was also his personal care physician. Instead of signing off on the electric shock, he prescribed thyroid medication. The man came back to life.

When hypothyroidism isn't treated, signs and symptoms can gradually become more severe. Constant stimulation of your thyroid to release more hormones may lead to an enlarged thyroid. In addition, you may become more forgetful, your thought processes may slow or you may feel depressed.

Its up to the readers. This is a good opportunity as a reader to make an important difference in someone's life. If enough readers use the share button to email their family and friends, I feel confident in saying sooner or later one of you will be emailing me with a new story on hypothyroidism.

Better story, its not Alzheimer's, it was the thyroid. Now that would be something.

Also see Is it Really Alzheimer's or Something Else?

More About the Alzheimer's Reading RoomHow do Alzheimer's Caregivers Think and Feel?

Advice and Insight -- Alzheimer's Reading Room

The Alzheimer's Hamster Within YOU

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's

Communicating in Alzheimer's World

Dr Oz Alzheimer's Memory Quiz (Test)

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Alzheimer's World -- Two Circles Trying to Intersect

Alzheimer's Disease -- The Front Row

Is it Really Alzheimer's or Something Else?

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

THe Alzheimer's Action Plan

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Driving with Alzheimer's Can Mean Death

2010-03-13T09:36:00.004-05:00

When someone is diagnosed with dementia or Alzheimer's should their license be revoked?

If someone is suffering from Alzheimer's and driving, are they a risk to the general public (other drivers)?

If someone suffering from Alzheimer's causes a fatality while driving should they be exempt from civil lawsuits? Or should they be treated the same way as someone driving under the influence of alcohol?

Should the doctor or family of a person diagnosed with Alzheimer's disease be held legally liable if the person causes a fatality while driving?

By Bob DeMarco
Alzheimer's Reading Room

A new study conducted by Linda Hunt at the School of Occupational Therapy at Pacific University, Oregon indicates that driving when suffering from Alzheimer's can be dangerous.

Of 207 drivers with Alzheimer's who went missing while driving, 32 died and 35 were found injured, the research showed. Another 70 were not found at the time the data was analyzed.

The first thing I thought to myself was, yikes.

The math, 207 cases, 32 died. 15.4 percent. Almost 6.5 out of 100. Six and one half persons. Is it possible that 15 percent of the persons suffering from Alzheimer's disease who go missing while driving end up dead?

The math, 207 cases, 32 died, 35 injured. 32 percent. Not good.

Hunt based her study on those incidents she found reported in the media. So the study does not test the percentage of all persons suffering from Alzheimer's that drive. Only those that were driving and were reported missing.

I decided to too look at some driving statistics. For 2007, there were 20.06 driving fatalities for every 100,000 licensed drivers. .02 percent. .0002.

Here is what Hunt said about the study,

"Alzheimer's disease affects memory and navigational skills. These impairments may lead to getting lost, which is a life-threatening problem," Hunt said. "Family members and friends of individuals with dementia need to recognize these impairments as serious threats to safety for anyone who has dementia."

Here is what Elizabeth Gould, director of quality care programs at the Alzheimer's Association's national office in Chicago, said,

"Our position is that a diagnosis alone is not sufficient to have someone's driving privileges taken away because many people in the early stages can still drive safely," said Gould. "It (driving) needs to be monitored."

From the FAU Driving Study,

"Roughly 60 to 65 percent of the individuals who come in for driving evaluations pass our driving assessment," Owens said. "By the time they come to us, they usually have some form of dementia. Within two years of a diagnosis of Alzheimer's disease, individuals are generally unable to drive."

Only six states -- Oregon, California, Nevada, Delaware, Pennsylvania and New Jersey -- have mandatory reporting laws when a doctor finds a patient is mentally impaired.

So I found myself thinking. It's likely that most of those people driving under the influence of Alzheimer's and then killed in a car while missing were probably doing OK until they finally got lost. How would one go about monitoring someone suffering from Alzheimer's? I mean if we knew what to look for it wouldn't be so hard to stop wandering of all types.

So here are the questions for readers.

When someone is diagnosed with dementia or Alzheimer's should their license be revoked?

If someone is suffering from Alzheimer's and driving, are they a risk to the general public (other drivers)?

If someone suffering from Alzheimer's causes a fatality while driving should they be exempt from civil lawsuits? Or should they be treated the same way as someone driving under the influence of alcohol?

Should the doctor or family of a person diagnosed with Alzheimer's disease be held legally liable if the person causes a fatality while driving?

Are you related to someone that has been diagnosed with Alzheimer's and is still driving?

Also see:

Can you drive with Alzheimer's -- FAU Driving Study

FAU Clinical Trial on Driving Impairment

More About the Alzheimer's Reading Room
How do Alzheimer's Caregivers Think and Feel?

Advice and Insight -- Alzheimer's Reading Room

The Alzheimer's Hamster Within YOU

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's

Communicating in Alzheimer's World

Dr Oz Alzheimer's Memory Quiz (Test)

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Alzheimer's World -- Two Circles Trying to Intersect

Alzheimer's Disease -- The Front Row

Is it Really Alzheimer's or Something Else?

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

A Caregiver's Guide to Alzheimer's Disease: 300 Tips for Making Life Easier

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Excellent Reader Comment Alzheimer's, Dental, Nutrition

2010-03-12T13:25:00.003-05:00

"Ill fitting dentures are the center of our world here, and I have gone bonkers trying to find things Mom would eat".....

By Bob DeMarco
Alzheimer's Reading Room

I continue to believe that one of the most important features on this blog are reader comments. I believe that Alzheimer's caregivers can benefit from the advice, insight, and tips that often appear in the comments below an article.

In addition, readers often talk about their day, experience, or how they are feeling at any point in time. Other readers take the time to respond.

I learned that it is impossible to know how you might be feeling at any given point in time as an Alzheimer's caregiver. Intra-day changes are not unusual. I find that the comments frequently give me a boost, or at the minimum remind me I am not alone.

Under the article -- Reader Seeks Advice -- Nutrition, Dentures, and Dental Care -- there are several reader comments that I believe are both important and helpful.

The one by CJ Wright got me thinking about the right now and the future.

CJ Wright wrote:

"Ill fitting dentures are the center of our world here, and I have gone bonkers trying to find things Mom would eat".

I admit I laughed (not at you CJ) when I read those words. If we had a nickel for every time we all went "bonkers" we could probably sponsor the research for the "big" treatment for Alzheimer's disease.

CJ then went on to share excellent tips on nutrition and protein. Not only did she mention the products she is using, she also described her methods of getting her mom to eat them, and how to prepare them. She mentioned how she divides one drink into 2-3 servings.

It was at this point that the light bulb went on in my head. I wondered if mom would have agree to drink the Citrate of Magnesia if I had broken it up into 3 small glasses rather then one big glass when I was in the dreaded poop-E war?

Something tells me that I will need to divide the food or drink into smaller portions at some point in the future.

Right now, mom eats like a horse. Sometimes I think she might try to eat the rug. I hope not. In the future, I am sure I will use CJ tips.

I see it this way. If and when the time comes I won't need to wrack my brain. CJ's comment puts me ahead of the curve.

I bet some of the readers on this list could benefit right now. You can read her comment under the article -- Reader Seeks Advice -- Nutrition, Dentures, and Dental Care.

Insight, advice, and sharing.

Maybe CJ should be writing a weekly column here on food, nutrition, and how to defeat some of the vegarities that come with Alzheimer's?

You can read more by CJ Wright at When Does the Glad Start: Caring for Alzheimer's.

More About the Alzheimer's Reading Room
How do Alzheimer's Caregivers Think and Feel?

Advice and Insight -- Alzheimer's Reading Room

The Alzheimer's Hamster Within YOU

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's

Communicating in Alzheimer's World

Dr Oz Alzheimer's Memory Quiz (Test)

Test Your Memory (TYM) for Alzheimer's or Dementia in Five Minutes

Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients

Alzheimer's World -- Two Circles Trying to Intersect

Alzheimer's Disease -- The Front Row

Is it Really Alzheimer's or Something Else?

Alzheimer's Clock Draw Test -- Detect the Signs of Alzheimer's Early

60 Good Reasons to Subscribe to the Alzheimer's Reading Room

Just a Word: Friends Encounter Alzheimer's

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Exelon Patch Study and the Thyroid

2010-03-12T08:33:00.002-05:00

So for any of you caregivers out there make sure your loved ones have their thyroid checked once per year.....

By Kerry Runyeon
Alzheimer's Reading Room

Original post from 1/11/10

Today I took mom to her Dr. to be enrolled in a new study for patients with moderate to severe Alzheimer disease. To qualify you basically have to be physically healthy, MMSE score of less than 12 I believe, not live in a nursing home, and have a caregiver willing to help you with the med and get you to the appointments.

Mom's MMSE score today was 10. The last time she was tested (last summer) it was 12. She had lab work drawn, EKG done (normal), and a mini physical. We were there 2 hours. She also has to have a CT scan which needs to be done this week.

I will have to take her off her Razadine 2 weeks before she starts on the patch so I will do that on the 14th and she goes back the 28th and if all the above tests (lab CT scan) are ok she will start the new drug.

All patients in the study will receive the drug however there is a low dose group and a high dose group and we will not know which group she is in. The drug (low dose) is already FDA approved for mild to moderate Alzheimer patients so this study is to see if there is any benefit for the later stage patient. The study lasts for 6 months with mom able to continue the medication (low dose) after 6 months if there is improvement.

I don't know if Lily will benefit from this but the medication she is on is not keeping her from gradually deteriorating so I thought why not? Hopefully we will see some positive indicators and if not at the very least she is helping in the fight against this horrendous disease.

About 2 days after this post I found out Lily's thyroid level was mildly out of range (TSH-6) so she did not qualify for the study. Her mini mental status exam was 10 which had dropped from 12 done sometime last year. I had decided to put her in this study as I had noticed a recent deterioration in her mental facilities verified by her MMSE score. Because of this I felt taking her off her razidine which has to be discontinued for 2 weeks before starting the exelon was not such a big risk since she was no longer doing as well.

Lily's thyroid level is now in normal range and if all other results meet the study's requirements I expect her to have an exelon patch on next week. This will be our second attempt to get her enrolled in this study.

The interesting thing is that after her doctor increased her thyroid medication I started to notice Lily improving--not as confused, remembering more details, just generally more with it. So after several weeks ;her thyroid level was rechecked and the TSH is now around 2 (normal range). So we went back in to redo all the paperwork. They also checked her MMSE (mental status) and she scored 12----up 2 points. Fortunately the study includes those with a MMSE score less or equal to 12. What I want to stress here is that 2 points doesn't seem like much but is really a big deal in the little things of everyday life with Lily. And that is definitely attributable to her thyroid level.

So for any of you caregivers out there make sure your loved ones have their thyroid checked once per year. Ideally the TSH should be less than 3. Even if it is in the high normal range (4-5) I would venture to encourage your doctor to try thyroid replacement medication to see if a difference can be seen.

I have to say I had second thoughts about enrolling her in this study because the only reason I decided to take the risk was because she was deteriorating on the razadine/namenda combination. However, at the time I made this decision I did not realize her thyroid level was out of range which is what was causing the deterioration. I actually almost backed out. I talked to her Doctor who said they had been seeing some good results with the exelon and she thought it was worth the risk so I agreed. However the same day we went back in to redo all the paperwork I came home and had a post from someone who said that her mother did terrible on the exelon which made me again question my decision. However, I know not every individual reacts the same so I am hoping Lily has better results with it.

I will keep you posted.

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Kerry Runyeon, RN, BSN is the primary caregiver for her mother Lily. Kerry chooses to focus on the humorous aspects of her journey with Alzheimer's disease. Her blog Living in the Moment with Lilybird is a reflection of her experience. Kerry resides in Dayton, Ohio

Original content Kerry Runyeon, the Alzheimer's Reading Room

Mom Hands Me 25 Bucks -- Bingo!

2010-03-11T21:45:00.003-05:00

Mom actually divided 50 by two and came up with 25. Then she went into her cash stash and figured out how to come up with a 20 and 5.

By Bob DeMarco
Alzheimer's Reading Room

I wrote before about how mom use to play bingo with the pro's. When you play with the pro's -- no talking. If you talk during the game they will "shush" you.

Now mom is reduced to playing in this little game down the street that goes on for a few months during the Florida season. Small money. They pay about 10 bucks a game with one exception of the last game. The last game is a coverall. You have to get every number on your card to win.

Last night mom won the big game. She managed to cover her card all by herself. However, her friend had to tell her to yell bingo. Mom can plug those numbers, but she is clueless when it comes to what it takes to make a Bingo.

So at 9:30 PM, I drove over to pick up mom and two of her friends --Josie and Olga. Since mom won the last game, she was still all excited when I walked it to pick them up. There she is holding on to a 50 dollar bill. I try to get her to give it to me to hold, no way.

After I get home and get her settled into her pajamas, everything is nice and quite. Then all of a sudden mom is yelling Bobby, Bobby. I think "crap" or something like that, and go blazing down to her bedroom. There is mom. She wants to give me some money. I take it. A twenty and a five.
I think WOW.

Mom actually divided 50 by two and came up with 25. Then she went into her cash stash and figured out how to come up with a 20 and 5. Might not sound like much to the average Joe or Mary Blow but I was surprised. Pleasantly.

I think mom actually remembered winning last night when I asked her this morning. Or did she? Beats me but she acted like she did.

Add Bingo to the list of good things for someone suffering from Alzheimer's to do. Mom looked very aware this morning. She looked like her old herself. You can't beat that in my opinion.

Ok, gotta go, I have to figure out what to do with my 20 and 5. Any suggestions?

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room