Monday, December 7, 2009

Communication in an Alzheimer's World

Let's face it, dealing with Alzheimer's is not easy. Understanding Alzheimer's disease is not easy. Some people can't do it...ever...
Bob DeMarco
Alzheimer's Reading Room

It takes a lot of energy, learning, and patience to deal with the Alzheimer's disease.

In order to begin the process of dealing with communication in a world fill with Alzheimer's you first need to make a simple important decision -- you want to decrease both your stress as caregiver, and the stress of the person suffering from Alzheimer's.

Read that carefully, you want to reduce stress. You want to change the dynamic. You want to change for the better -- you want and need to change the way things are.

You might be wondering why I just repeated myself. Why? Because I believe it is necessary to get focused on what you want to accomplish, if you ever expect to accomplish it. It must become a deep and strong desire within you.

A goal.

To continue reading go here.

Also see:

The Metamorphosis of This Alzheimer's Caregiver -- I Wish

The Metamorphosis of This Alzheimer's Caregiver (Part One)

The Metamorphosis of This Alzheimer's Caregiver (Part Two)

Popular articles on the Alzheimer's Reading Room

Monday, July 23, 2007

The first signs of Dementia (Alzheimer's)

Looking back, there is little doubt in my mind that if I had had the proper education or information I would have realized my mother was suffering from dementia sooner. Most people like me tend to ignore the symptoms at first believing they are simply signs of "old age". Anyone who ends up in my shoes knows and understands that a person in the early stages of dementia or Alzheimer’s can function with some normality--even drive a car. It is not until they deteriorate or until some "event" takes place that we wake up to reality.

The article on the next page is one of the best I have read. The basic underlying premise is that behavior changes slowly in the elderly and if they begin to suffer cognitive impairment it will be evidenced in behavioral changes. Sometimes these changes can be quite subtle but if detected could raise a “red flag”.

If my mother had been enrolled in any of these studies I feel certain she would have been diagnosed with dementia sooner. This would have allowed me to get her in an exercise program, get her proper nutrition, and insure that she was taking her medicines as prescribed. I leaned in the last three years how important these three factors are in the quality of her life.

My mother turned 91 years old in June and she suffers from Alzheimer’s disease. I am her CarGiver.

Sensors could help catch first signs of dementia
Monitors and online tests track subtle changes in daily mobility, behavior

Source Associated Press and

WASHINGTON - Tiny motion sensors are attached to the walls, doorways and even the refrigerator of Elaine Bloomquist’s home, tracking the seemingly healthy 86-year-old’s daily activity.

It’s like spying in the name of science — with her permission — to see if round-the-clock tracking of elderly people’s movements can provide early clues of impending Alzheimer’s disease.

“Now it takes years to determine if someone’s developing dementia,” laments Dr. Jeffrey Kaye of Oregon Health & Science University, which is placing the monitors in 300 homes of Portland-area octogenarians as part of a $7 million federally funded project.

The goal: Shave off that time by spotting subtle changes in mobility and behavior that Alzheimer’s specialists are convinced precede the disease’s telltale memory loss.

Simple early signs

Early predictors may be as simple as variations in speed while people walk their hallways, or getting slower at dressing or typing. Also under study are in-home interactive “kiosks” that administer monthly memory and cognition tests, computer keyboards bugged to track typing speed, and pill boxes that record when seniors forget to take their medicines.

More than 5 million Americans, and 26 million people worldwide, have Alzheimer’s, and cases are projected to skyrocket as the population ages. Today’s medications only temporarily alleviate symptoms. Researchers are desperately hunting new ones that might at least slow the relentless brain decay if taken very early in the disease, before serious memory problems become obvious.

So dozens of early diagnosis methods also are under study, from tests of blood and spinal fluid to MRI scans of people’s brains. Even if some pan out, they’re expensive tests that would require lots of doctor intervention, when getting someone to visit a physician for suspicion of dementia is a huge hurdle. And during routine checkups, even doctors easily can miss the signs.

Bloomquist, of Milwaukie, Ore., knows the conundrum all too well. She volunteered for Kaye’s research because her husband died of Alzheimer’s, as did his parents and her own mother.

“It’s hard to know when people begin Alzheimer’s,” she reflects. “Alzheimer people do very well socially for short periods of time. If it’s just a casual conversation, they rise to the occasion.”

‘Typical’ days monitored

Measuring how people fare at home — on bad days as well as good ones, not just when they’re doing their best for the doctor — may spot changes that signal someone’s at high risk long before they’re actually demented, Kaye told the Alzheimer’s Association’s international dementia-prevention meeting last week.

“If you only assess them every once-in-a-blue-moon, you really are at a loss to know what they are like on a typical day,” Kaye explains.

High-tech monitors under study:

Researchers at New York’s Mount Sinai School of Medicine are heading a study that ultimately plans to recruit 600 people over age 75 to help test in-home “kiosks” that turn on automatically to administer monthly cognitive exams. A video of a smiling scientist appears on-screen to talk participants through such classic tests as reading a string of words and then, minutes later, repeating how many they recall, or seeing how quickly they complete connect-the-dot patterns.
An Oregon pilot study of the motion sensors tracked 14 participants in their upper 80s for almost a year. Half had “mild cognitive impairment,” an Alzheimer’s precursor, and half were healthy. Impaired participants showed much greater variation in such day-to-day activities as walking speed, especially in the afternoons.

Why? The theory is that as Alzheimer’s begins destroying brain cells, signals to nerves may become inconsistent — like static on a radio — well before memories become irretrievable. One day, signals to walk fire fine. The next, those signals are fuzzy and people hesitate, creating wildly varying activity patterns.

Study receives unique grant

The pilot study prompted a first-of-its-kind grant from the National Institutes of Health to extend the monitoring study to 300 homes; 112 are being monitored already, mostly in retirement communities like Bloomquist’s. They’re given weekly health questionnaires to make sure an injury or other illness that affects activity doesn’t skew the results.

In addition, participants receive computer training so they can play brain-targeted computer games and take online memory and cognition tests. The keyboards are rigged to let researchers track changes in typing speed and Internet use that could indicate confusion.

Finally, a souped-up pill dispenser called the MedTracker is added to some of the studies, wirelessly recording when drugs are forgotten or taken late.
Electronics giants already sell various medical warning technologies for the elderly, including dementia patients, such as pill boxes that sound reminder alarms at dose time. And the Alzheimer’s Association and Intel Corp. are jointly funding research into how to use television, cell phones and other everyday technology to do such things as guide dementia patients through daily activities.

The next step of companies selling early symptom monitoring isn’t far off, and unbiased data on what really helps will be crucial, Kaye warns.

Wednesday, July 4, 2007

Alzheimer's, Validation Therapy and the CareGiver

I ran across this article while "fishing" on the Internet. This tried-and-true technique can be used when you are at "wits" end when dealing with difficult behavior. The article contains examples that should help you develop your own frame of reference, techniques when dealing with difficutl situations on a daily basis. It should be particularly useful in helping you understand that the often bizarre behaviors evidenced by your Alzheimer's loved one are not uncommon and can be dealt with effectively. This article is worthwhile reading and is worth "salting away" for future reference.

Nursing Homes, June, 2000 by Mark Warner

DESIGNS for Validation Therapy

Mark Warner

This tried-and-true technique can be supported in the Alzheimer's environment

As each member of the group sat in the circle hoping the balloon would gently drift their way, Roxanne burst from her chair in a fit of rage, shouting "There'll be no ball-playing in my house!" Furious at the insolence of the players who ignored her commands, Roxanne forcefully attacked a staff member, who tried to comfort her by explaining that she was not in her house, but merely with her friends playing a game. Roxanne didn't buy that and swung wildly, hitting the staff member squarely in the chest.

Fearing that I, too, might fall victim to the same fate, I cautiously approached Roxanne.

I put my arm around her shoulder and supported her in her cause that there should be no ball-playing in her house. "This is terrible," I said. "You're right, they should not be throwing that ball in your house, should they?"

"No, they shouldn't," bellowed Roxanne, showing only the slightest relief that someone saw her point of view.

"But you know, Roxanne, the only way they will stop throwing that ball is if we write down the rules for them. I think it's the only way they'll listen." Roxanne was buying this approach, so I suggested, "Let's go into that room over there and write down all the rules for them, okay?" Much to my relief, Roxanne agreed, and hand-in-hand we went into the room to write down the "rules."

"Okay," I began, "Rule Number One is 'No ball-playing in the house,' right?"

"That's right," agreed Roxanne.

"So what will Rule Number Two be," I asked, and then offered, "How about, 'No running in the house'?"

"That's right," said Roxanne, "my grandchildren are not allowed to run in my house."

"Roxanne, you've got grandchildren," I said, raising the tone of my voice with delight.

"Oh, yes, my little gran'boy is six years old, and he is as smart as they come." Roxanne was on a roll now, and the upset caused earlier by the balloon toss in the next room might as well have been miles away. Fifteen minutes later, when the game was over, Roxanne and I emerged from the room, both of us just as happy as we could be, the "rules" left on the table and the incident long forgotten.

The technique used here is called Validation Therapy. It assumes that no matter what illusion the person with Alzheimer's disease (AD) is living, she is right, and nothing you can say or do will convince her otherwise. Naomi Feil is the acknowledged expert on validation therapy and wrote the book The Validation Breakthrough. The basic concept is that you have to buy into the resident's illusion and convincingly play along with it, there by validating it. Eventually you'll see opportunities to mold the tale--and the resident's behavior--into something that is acceptable and no longer upsetting.

"What has this got to do with design," you ask? Everything, in fact. Understanding Alzheimer's disease and the many creative ways to deal with it are as much a challenge of designing an environment as of caregiving within it.

Angie is always complaining about the stranger in the bathroom. She won't use the toilet while "the other lady" is in there. She says that the bathroom is occupied, not realizing it is her own reflection that she sees. Do you explain that she is seeing herself in a mirror?

No. You go along with her. How about, "I'm sorry, Angie, let me see what's taking that lady so long." You go into the bathroom and somehow cover the mirror. One family confronted by this situation told their mother that the mirror was dirty and needed to be cleaned. They sprayed it with a powdered deodorant, creating a haze that obscured any reflection. "Mom, she's out of there now," her daughter said. "I wonder what took her so long. Let me know if you need anything. I'll be right here waiting for you."

Caregiver 1: "Deborah won't eat anything. She just sits at the table and stares at the food. She loves gardening, though; we spend hours every day weeding and pruning the vegetables in our garden."

A golden opportunity awaits us here. Figure it out. Deborah loves gardening, but won't eat.

"So we tried something a little different. Though the tomatoes were days from ripening, I went to the grocery store and picked out some beautiful red ones. Instead of putting them on the table in front of her, I pretended to come in from the garden, tomatoes in hand. As Deborah Looked at the tomatoes, I told her, 'They came from our garden and don't they Look delicious?"'

Granted, such ploys are not always so successful, but many are. Sharing the bounty of the garden, enjoying the fruits of your labor that you grew together, can somehow trigger pleasant, guiding thoughts and behaviors when all else fails. Perhaps it stirs up memories from long ago, or maybe it's just the thrill of eating your own garden vegetables. Regardless, it adds a new dimension to life that might very well conquer the ravages of the disease and perhaps bring new purpose to those waist-high gardens many facilities are installing these days.

Taking validation to the next step often involves anticipating the problem and creating the illusion. Validation, also referred to as deceptive therapy, white lies and fiblets, means creating a story--in the best interest of the person who is "confused."

"Dad, who's president? Do you remember his name?"

"Of course l do, it's Roosevelt!"

If your family member believes it is the 1930s, so be it. As he regresses in time, so do his memories of values, experiences and people. What was important then becomes important now!

Given residents' belief that they are living when Roosevelt was president, what would the world have been like back then? What would the good experiences and environmental features have been? How can we recreate the familiar feelings of that period in a convincing and subtle way?

For example, those were the days when they hung the clothes on a line in the back yard. Isn't that the kind of good and secure feeling we would want to recreate--possibly by merely providing a clothesline? Others might be enjoying the time when they were raising their families. What better way to indulge them than by allowing them to once again care for their spouse or children by hanging "their" clothes out to dry?

Or, perhaps they have less comforting memories.

Caregiver 2: "Mom collects everything--rubber bands, paper clips paper...everything! And she stores them everywhere. You can hardly walk in her room, there is so much stuff in there!"

Perhaps Mom is reliving times when the country was at war, when every little scrap was valuable in the war effort, or the Great Depression, when times were so tough that you had to keep everything, when nothing that might be useful was thrown out. Environmental validation then might mean providing easy-to-see drawers, trunks or cabinets to store these important items.

How were evenings spent in the good ol' days (before TV, let's say)? Many families spent hours sitting on the porch, watching people go by, talking to neighbors, etc. Why not create a porch, complete with rockers and swing gliders? Locate it carefully and safely, but within view of interesting activities (maybe a playground where children play). Make sure it is secure for those who might try to leave or climb over the railing; it should also be far enough from strangers outside who might be perceived as intruding into their space. Perhaps a screened porch would do the trick.

One should also beware of environmental miscues.

"Bruce, why aren't you eating?"

"I didn't bring my wallet and can't pay for the meal."

Although Bruce is living in an assisted living facility and doesn't have to pay for his meal, he doesn't realize that. As far as he is concerned, this large, beautiful dining room is a restaurant, and the more he eats, the bigger the bill. Perhaps if we had divided the room into smaller, more homelike dining rooms and spared the expense of the huge chandelier, Bruce would feel more comfortable with his home-cooked meal.

Don't forget that little environmental touches can mean a lot.

Caregiver 3: "My mother refused to take a bath. For years, soaking in a warm tub of water had been the highlight of her day. But now, for some reason, she feared the tub and everything it represented. Eventually she confided in me, relating a childhood story about a little girl who got sucked down the bathtub drain. She recalled that tale and, like that little girl, she was afraid that she too might fall victim to that terrible fate. The solution: We put a mat over the drain. Her fear suddenly disappeared."

In a daycare center, angry and impatient residents wait for their rides to take them home. Each time the door opens, one, two or even three of them race to it and powerfully attempt to get into the van, which has actually arrived to transport someone else. Staff members intervene, often unsuccessfully, overcome by the strength and determination of people with a very important cause (the van is there for them). If we, as facility planners and designers, can anticipate this kind of behavior, we can plan door placement to eliminate visibility of the van outside, thus avoiding this upsetting and potentially volatile situation. There are design solutions for problems like these, if problems are simply acknowledged and thought about ahead of time.

Although the stories I've recounted are all too familiar to healthcare professionals, they are often "Greek" to design professionals. Nevertheless, it is a design credo: To design for any client, you have to understand the client. Why should those who have Alzheimer's disease be treated any differently?

We are only in the earliest days of learning how to design for dementia. Hopefully, there will soon be a cure for these devastating diseases, making an article such as this a moot exercise. But until then, we must continue to delve into our creative minds, take chances and discover what works and what doesn't for this population. Nursing home/assisted living managers should help designers understand how people with dementia perceive and interpret their worlds. Only when equipped with this knowledge can we designers begin to address these problems with the tools that we have available to us.

Mark Warner, AIA, is the author of The Complete Guide to Alzheimer's Proofing Your Home, the first book in the Homes That Care series on age related conditions and creating homes for those suffering from them. His firm, Ageless Design, Inc., offers consultation and assistance in the design of environments for seniors. For more information, call (561) 745-0210, visit the Web site at or e-mail

The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent

alzheimer's, assisted living, behavior, caregiver, loved one, nursing home, validation, Validation Therapy

Tuesday, June 26, 2007

Clinical Trial: Omega 3 Fatty Acid, Slowing the Progression of Alzheimer's Disease

Preliminary studies have shown a reduced risk of Alzheimer's disease (AD) in people consuming increased amounts of fish in their diets. Many of the health benefits of fish are attributed to the abundance of omega 3 fatty acids. Docosahexaenoic Acid (DHA) is the most abundant omega 3 fatty acid in the brain. Data from several animal models supports the hypothesis that DHA may be an effective treatment for AD by means of anti-amyloid, antioxidant, and neuroprotectant mechanisms.

This study is currently recruiting patients.

Personal Note: I have been feeding my mother fish and giving her Omega 3 Oil daily for a couple of years. I believe it is beneficial.

For a complete description of the trial including eligibility requirements go to the Clinical Trials Page

Official Title: A Randomized Double-Blind Placebo-Controlled Trial Of The Effects Of Docosahexaenoic Acid (DHA) In Slowing The Progression Of Alzheimer’s Disease

Study Type: Interventional

Study Design: Treatment, Randomized, Double-Blind, Placebo Control, Parallel Assignment, Efficacy Study

Further study details as provided by National Institute on Aging (NIA)

Primary Outcome Measures:
Changes in rate of cognitive and functional decline measured by ADAS-Cog and CDR-SOB

Preliminary studies have shown a reduced risk of Alzheimer's disease (AD) in people consuming increased amounts of fish in their diets. Many of the health benefits of fish are attributed to the abundance of omega 3 fatty acids. Docosahexaenoic Acid (DHA) is the most abundant omega 3 fatty acid in the brain. Data from several animal models supports the hypothesis that DHA may be an effective treatment for AD by means of anti-amyloid, antioxidant, and neuroprotectant mechanisms.

In this study, 400 individuals with mild to moderate AD will participate at approximately 53 study sites throughout the US for 18 months. Participants will be randomized so that 60% will receive approximately 2 grams of DHA, divided into 4 capsules, 2 capsules taken twice a day, while 40% receive an identical placebo.

Potential participants will go to their study site for a screening visit, where eligibility is determined, and if accepted, for a baseline visit where cognitive status, behavioral status, functional status, and global severity of dementia will be assessed. Vital signs and biomarker labs will also be obtained. Subsequent visits will occur every three months for medication checks and, every 6 months, further assessments, physical exams, and labs.

Some participants will also take part in MRI (magnetic resonance imaging) and/or CSF (cerebrospinal fluid) sub-studies. For the MRI sub-study, scans will be done prior to beginning the study medication, and again after 18 months. Likewise, for the CSF sub-study, a lumbar puncture will be done prior to beginning the study medication, and again after 18 months.

Enrollment is restricted to individuals who consume no more than 200 mg of DHA per day, which is almost 300% of the average daily intake in an American diet. Individuals who take fish oil or omega 3 fatty acid supplements are also not eligible. Each visit will include completion of a very brief food frequency questionnaire to monitor dietary DHA levels.

Sunday, March 11, 2007

What Happened to the Italian Bread?

My mother can no longer cook an egg, but one thing she can still do is cook delicious spaghetti sauce. Go figure huh?

So today was the day to go to Mario’s in Delray Beach and pick up all the material for spaghetti sauce and meatballs. I may as well digress right here and mention the key to really delicious meatballs is a combination of hamburger, veal and pork all in the just right amounts. The good news, you can buy it already mixed at Mario’s.

They make fresh baked bread at Mario’s, so I went over to the bakery section to get an Italian Bread. The women told me they would be out in about five minutes. This caused an immediate Pavlovian response in my mouth. We waited and ended up with a nice hot, fresh, Italian bread in a paper bag. Yummy.

When we arrived home I divided up the giant Italian bread into three parts. One part was for tonight when we eat the ravioli with the sauce and meatballs.

As I was cooking the ravioli I looked for the Italian bread so that I could warm it up. I looked here and looked there and I finally even looked in the refrigerator. No Italian bread. Hmm. At this point my brain goes “boing” and I wonder to myself, did mom eat the Italian bread? So, I look in the garbage can and sure enough there is the empty wrapper I had placed it in.

Yes, she ate the whole thing. Fortunately, we also purchased a nice new rye bread and in this instance I can assure you something is better than nothing.