An Interview with a Reporter From People Magazine

By Max Wallack
Alzheimer's Reading Room

A few days ago I was contacted by a reporter from People Magazine.  We spent almost an hour talking on the phone.

He was very interested in PuzzlesToRemember and how it developed from my caring for my Great Grams, who had dementia.  He loved hearing about my mission to become a Geriatric Psychiatrist, working with patients and their caregivers, but also conducting research in the field.

He asked deep and thoughtful questions.  It was not a superficial interview.  He was obviously an expert at his job.  He even warned me that if the article did appear in People, I would probably receive thousands of emails a day, and he wanted to make sure I would not be overwhelmed.

Saturday Alzheimer's Review 101

A review of articles previously presented on the Alzheimer's Reading Room.

Alzheimer's Reading Room

Alzheimer's Caregiver Just Let Them Do it

Several months after my great Alzheimer's caregiver idea, I received one of the biggest shocks of my Alzheimer's caregiver life. A shock that sent me into a tailspin like I had never experienced previously in my life -- it sent me to the edge of total despair.

Read More

Happy Birthday Dotty, We're Going Out Tonight

Today would have been Dotty's birthday. I have been thinking about this all week.

By Bob DeMarco
Alzheimer's Reading Room

Dotty
Would have been 96 today

I know its going to be tough tonight. It was tough going out last Friday night. I though about Dotty constantly.

I am now getting a clearer idea of how Alzheimer's caregivers feel when a deeply forgetful person dies.

I have been reading about how much they miss their loved ones in the comments section and via email for years.

I understood their words. Now I understand their feelings.

When Dotty Went to Heaven She Had Learned Her Final Life Lesson

Dotty was always convinced she could take "care" of herself, and then something changed.

By +Bob DeMarco
+Alzheimer's Reading Room 

Dorothy DeMarco
95 Years Old

Dorothy Olive DeMarco was born on June 29, 1916. She went to Heaven on May 25, 2012. Today is Dotty's birthday, she would have been 96 years old.

I was convinced for thirty years that Dotty would live to be more than one hundred years old. I did waver on this a bit when Alzheimer's disease came into our lives.

Around 2004, I came to a very different conclusion. I started to believe that Dotty would go to Heaven if and only if she learned the most important lesson of her life.

I can say that with the exception of her brain, Dotty was a "healthy old broad". She told this to everyone that would listen right up until very close to the end.

Exercise is Key in the Fight Against Alzheimer's Disease

For those of you that are newer readers, I took my mother, Dotty, into the gym for the first time in her life when she was 88 years old.

By Bob DeMarco
Alzheimer's Reading Room

Dotty
91 years old

I have written extensively on this site about my belief that exercise might be an effective way to delay, or even prevent, Alzheimer's disease.

I also believe that exercise is one of the most important components of an effective Alzheimer's caregiving effort.

For those of you that are newer readers, I took my mother, Dotty, into the gym for the first time in her life when she was 88 years old.

I did that after reading at least 18 studies that indicated that older people that did "real" exercise performed better cognitively than those persons that did not.

When I started Dotty in the gym she attended a low impact exercise class. After a few months I had her walking on a treadmill for 22 minutes, five times a week. I also had her doing exercises on the exercise machines you see in any good gym. This included shoulder pulls, chest pulls and chest presses, and a stand up sit down exercise that dramatically improved her balance.

Taking Dotty in the gym did improve her behavior. It was also the first in a long series of decision I made that proved to me that Alzheimer's patients are capable of "more than most people can imagine".

If you enter the word exercise into the search box on the right hand side of this page you will find a long list of articles on exercise, Dotty and exercise, and the positive cognitive effects exercise has on older people.

They Say I'm Going To Heaven, Why Doesn't Everyone Go With Me?

One thing I am hearing over and over now is, "you are going to Heaven". I hope everyone is right.

By Bob DeMarco
Alzheimer's Reading Room

Right now, I am sitting here thinking to myself, if the act of Alzheimer's caring is a sure fire ticket to Heaven, why don't more people start caring?

Doesn't everyone want to go to Heaven?

Just think, if everyone that told me I am going to Heaven in the last 8 years donated 4 hours a Year of their time helping me care for Dotty, I would not have had a single 24 hour day.

I wonder how many hours of caring it takes to get a free pass to Heaven? I think 4 hours a week might be enough.

During the season there are about 60,000 people here in Delray Beach. If I could get ten percent (6,000) of them to donate four hours a week that would amount to 1,248,000 hours of respite care for caregivers.

Let me write that out, one million, two hundred forty eight thousands hours of respite care. We are only talking Delray Beach, Florida here.

Nestlé New Product to Help Alzheimer’s Patients

This new product from Nestlé reduces the risk of aspiration when compared to thin liquids.

By Max Wallack
Alzheimer's Reading Room

Resource ThickenUp Clear

During my recent trip to Los Angeles, I had the opportunity to visit Nestlé USA and speak to many of their executives about my research work on the enzymes involved in Alzheimer’s disease. Everyone at Nestlé was intensely interested in my work.

Nestlé has a new product which can benefit Alzheimer’s patients that have trouble swallowing.

Nestlés' new product is Resource® ThickenUp® Clear. Resource ThickenUp Clear is superior to other products because it mixes and dissolves easily, and it is tasteless and odorless. The product reduces the risk of aspiration when compared to thin liquids. It remains clear when mixed with water, and does not change the color of beverages. You can also change the consistency of any food or beverage.

Another advantage is that it is available in single serve packets that can be carried along to restaurants. This can be a huge convenience since restaurant liquids can easily and quickly be thickened. It can also be bought more cheaply by the case.

Sick Neurons Infect Neighbor Neurons in Alzheimer's Disease

The inexorable spread of Alzheimer’s disease through the brain leaves dead neurons and forgotten thoughts in its wake.

Alzheimer's Reading Room

Researchers at Linköping University in Sweden are the first to show how toxic proteins are transferred from neuron to neuron.

“The spread of Alzheimer’s, which can be studied in the brains of diseased patients, always follows the same pattern.

But until now how and why this happens has not been understood,” says Martin Hallbeck.

I Have Not a Single Lament or Regret

They Love You More

By Bob DeMarco 
Alzheimer's Reading Room

After wracking my brain for years, and after thousands of stomach aches and heart aches, I finally made it into Dorothy's world -- now called Alzheimer's World.

Once I made it to Alzheimer's World I then asked myself, why didn't I make it here sooner?

Why?

Dementia and Sex In Nursing Homes

The authors argue that, while every effort should be made to ensure that no resident comes to harm, aging care facilities must respect the rights of residents with dementia to make decisions about their sexuality, intimacy and physical relationships.

Alzheimer's Reading Room

Abstract -- Dementia, sexuality and consent in residential aged care facilities

Sexual self-determination is considered a fundamental human right by most of us living in Western societies.

While we must abide by laws regarding consent and coercion, in general we expect to be able to engage in sexual behaviour whenever, and with whomever, we choose.

For older people with dementia living in residential aged care facilities (RACFs), however, the issue becomes more complex. Staff often struggle to balance residents' rights with their duty of care, and negative attitudes towards older people's sexuality can lead to residents' sexual expression being overlooked, ignored, or even discouraged.

Does Stress Cause Alzhemer's?

So far their has been little research done in people with mild cognitive impairment, Alzheimer's disease, and chronic stress.

Alzheimer's Reading Room

Clive Holmes

A UK research team funded by the Alzheimer's Society is set investigate chronic stress as a risk factor for developing dementia.

The study is scheduled to start next week and will continue for 18 months. One hundred and forty participants over the age of 50 will be studied, along with a control group.

Clive Holmes, Professor of Biological Psychiatry at the University of Southampton, is the lead investigator and said,

“All of us go through stressful events. We are looking to understand how these may become a risk factor for the development of Alzheimer's".

A Little Potpourri of My Thoughts on Alzheimer's Caregiving

Alzheimer's World is the place you go to when you want to communicate effectively with someone suffering from Alzheimer's disease.

By Bob DeMarco
Alzheimer's Reading Room

There are more than 3,700 articles on this website. My personal writing accounts for more than 2,000,000 words. The article, Communicating in Alzheimer's World, has over 2,000 words all by itself.

I am starting to review what I have written with the intention of writing 3 books.

Here are a few of the wild and crazy things I wrote over the years. Little snippets from some of the articles.

The Hunter Family, a Story of Inspiration

Chris Hunter was diagnosed with younger-onset Alzheimer's four years ago at age 46. His wife Debbie shares her family's story of hope, strength, faith and courage.

Alzheimer's Reading Room

Max Wallack -- 16 Kids Who are Saving the World

I first learned about Max Wallack from a Google alert I received.

Bob DeMarco
Alzheimer's Reading Room

Max Wallack, Age 16

At age 12, Max received a 2009 Huggable Heroes Award. Max donated his $2500 award to the Boston University School of Medicine’s Alzheimer's Disease Center. That caught my attention.

Subsequently, I wrote an article entitled, Who is Max Wallack?

I learned that Max also won a $10,000 award from the Intel Foundation for his invention called the Home Dome. This was one of many awards that Max won by the age of 12.

Max has added a long list of awards to his resume over the last 3 years including a Nestlé Very Best in Youth Award. He is also a Davidson Young Scholar.

At the end of 2009, I asked Max to write for the Alzheimer's Reading Room. He agreed. Among a long list of articles Max wrote: An Escape from Alzheimer's, Great Grams, and "I Remember Better When I Paint".

If you want to read more about Max, and more of his articles enter Max Wallack into the search box on the right hand side of this webpage.

Today Max is being featured in MSN Causes, 16 Kids Who are Saving the World.

General McArthur’s Credo

Sadly, it became very apparent that the hospital professionals did not seem to believe our story. We overheard them chatting about our family being, ‘in denial’.

By Ellen Belk
Alzheimer's Reading Room

Douglas McArthur

I received the call on a Sunday afternoon in March. The call that no adult child wants to get from a parent. As a long distance care provider to aging parents, my role had intensified as new issues continued to present themselves. Daily check-ins and follow ups became imperative.

On that Sunday in March, the call was urgent.

Dad had fallen around noon and mom was calling me from the Emergency Room. She assured me that Dad was okay, however she believed that he’d be kept overnight for observation.

My heart began to race.

An overnight stay in the hospital for an elder? Even if you aren’t currently a caregiver to an elder – you should know that Hospital stays typically don’t present a pleasant experience for Senior citizens.

How Did You Know It Was Time for Hospice?

I want to say to you. There is no downside to requesting Hospice. None.

By Bob DeMarco
Alzheimer's Reading Room

Reader Donna asked under the article, How Alzheimer's Patients Experience Cognitive Decline.

Bob, I have wondered what was different about Dotty on the day after the Philly sandwich, or on the Monday when you went to the doc, that made you say yes to hospice? 

Every time my mom has a bad episode of not being able to eat, barely talking, sleeping close to 20 hours, I will think she is about to leave and then she will be back to her conversing and eating self. Her illness is complicated by presence of cancer. 

But still, how did you know it was time for hospice? 

I know each person is different, but hearing how others arrived at a decision is helpful, if it is something you are ready to write about.

This is one very good question.

The Level Below How Empathy Applies in the Caregiving Model

What is your opinion?

By Carole B. Larkin
Alzheimer's Reading Room

Bob wrote a thought provoking article this morning on empathy and compassion, and how they are key components of a more positive caregiving experience. I agree 100% with Bob’s thoughts and conclusions, but would like to start a discussion about a question that needs to be asked before a person becomes a caregiver.

The question is, am I the right person to be the “One”?

If you think about empathy and compassion as if they were the foundation of a building, and desire for knowledge about the disease and how to best caregive the person with the disease as the structure of the building (columns and beams) and the persistence, patience and love of the caregivers as the walls and ceilings of the building, would not the entire building fall if the foundation was not deep enough to carry the weight of the building?

Empathy Leads to Compassion Then Joy for the Alzheimer's Caregiver

By Bob DeMarco
Alzheimer's Reading Room

I am sitting here thinking about the role of empathy in Alzheimer's caregiving.

How does empathy apply in the carer - caree model?

Empathy I believe starts with understanding. Learning to understand how a person who is deeply forgetful might be feeling at any given point in time.

This includes being sensitive to the actions that might be taken, and the cause effect of these actions.

The caregiver begins to acquire empathy by asking how, why, what. How is the person who is deeply forgetful feeling? Why is the person who is deeply forgetful acting this way? What do they need?

Ninety Percent of Older Adults are Willing to be Screened for Dementia

“Unlike past studies which asked about theoretical willingness to be screened for dementia and found less interest, we looked at actual willingness of primary care patients to be screened.”

By Bob DeMarco
Alzheimer's Reading Room

I think most people in the Alzheimer's community will find the results of this study hard to believe. I did at first.

However, after reading the results more carefully it does make sense.

For example, lets assume that I recommended that a person I know or met consider taking a memory screening test. My experience tells me they won't do it.

However, lets say the same persons' personal care physician suggested a memory screening. I think the vast majority of patients would be willing. This would be especially effective if the PCP set up an appointment for the screening, or better yet administered the screening test on the spot.

The problem right now is that PCPs are not recommending memory screening often enough. The simple facts are that one in eight persons age 65 or older will suffer from dementia. Obviously, the odds go up as we age.

Report Woman and Alzheimer's Disease, the Caregiver Crisis

A major new report on the dramatic toll Alzheimer's disease is taking on women in the U.S., who are shown to be the primary caregivers for loved ones, reveals an increasing cost to their personal and professional lives as well as their pocketbooks.

The study entitled Women and Alzheimer's Disease: The Caregiver's Crisis, surveyed 1,204 current and former caregivers who provide unpaid care for loved ones suffering from Alzheimer's disease and was commissioned by the Working Mother Research Institute and featured in the June/July issue of Working Mother magazine and online.

Caregiving: the odyssey of becoming more human

Caregiving is one of those relationships and practices of self-cultivation that make us, even as we experience our limits and failures, more human.....
Alzheimer's Reading Room
November, 2010

Winslow Homer

The following is an excerpt from a well written, thought provoking article by Arthur Kleinman that appeared in Harvard Magazine.

Donations for Bullied Bus Monitor Karen Klein Soar Past $530,000

I know this story of a an older woman being bullied by a group of mean spirited teenagers is off track, but think about it.

Alzheimer's Reading Room

This is really remarkable when you think about it.

Karen Klein, 68 years old, earns about $15,000 a year as a bus monitor. She was subjected to a series of mean spirited, thoughtless, and hurtful comments bystudents while she was doing her job on the bus.

It is hard to imagine that a group of teenagers could be so mean. The "madness of the crowd".

The reaction of people all over the world is even more remarkable. So far, more than 25,115 people, who never met Karen, have donated more than $530,000 to send her on vacation.

It just shows what people can and will do when they are moved.

I couldn't help but wonder what could be accomplished if people really got motivated about Alzheimer's disease.

Dotty Went to Heaven Four Weeks Ago

I did not mentioned this before. I have Dotty right here with me. Of course I mean her ashes. I must tell you, after I brought Dotty back home I felt very happy. It was comforting to have Dotty back home.

By Bob DeMarco
Alzheimer's Reading Room

Dotty went to Heaven 4 weeks ago. I can't decide if it feels like a long time ago, or if it seems like it just happened yesterday. Time does seem a bit elusive to me right now.

Many of you continue to ask, how am I doing? I'm fine. The only major thing that I notice is that I tend to get sleepy late in the afternoon. Not tired, sleepy. For sure, I am operating at less than 100 percent.

I am getting out and about but in no real organized pattern.

Last Sunday I took off for the beach and spent an hour walking on the beach. When I got out of the car I decided to go "bare feet." Yikes. I had forgotten how hot the sand is in Delray Beach at this time of year. I had to go back to the shower, we have a shower at every entrance to the beach in Delray, and wet my feet. Then I planted them in the sand. This coated the bottom of my feet and allowed me to make it across the hot sand and down to the ocean. Woh.

My Best Day as an Alzheimer's Caregiver

My mother, Dotty, didn't laugh or smile for two years. It was killing me. I couldn't get away from it. Just one look at her staring into space and it all came raining down on me.

By Bob DeMarco
Alzheimer's Reading Room

I'm fortunate. I received a great education, learned how to do research, and I like to gobble up information.

So when it came time to figure out Alzheimer's, what it is, and what I could do to best care for my mother, I was ready to go.

I am referring here mostly to science and scientific research. I made a very good decision early on. I put together a sophisticated alert system using Google, and then almost everything that had to do with Alzheimer's and dementia came pouring into my email box. Over time, I continue to improve my systems.

Many times, you get an article or research report and it leads you to investigate additional information. This is what happened to me and lead to what is really my best ever caregiver moment.

Alzheimer's World -- The New Reality

Once you accept Alzheimer's World and learn how to operate in Alzheimer's World you'll learn that opposites can indeed attract. And stick together like glue.

By Bob DeMarco
Alzheimer's Reading Room

To understand Alzheimer's

You must redefine reality

This new reality is called

Alzheimer's World

Woman outraged after police use taser on husband with Alzheimer's

Wife says she feels guilty about what happened.

Alzheimer's Reading Room

Several Peru, Inidana Police Department Officers are under investigation about why they fired a taser multiple times on an advanced stage Alzheimer's patient early Sunday morning.

Dotty was Remarkable in Many Ways

It never stops fascinating me how people know, remember, and just rave about Dotty. Dotty had a way of making people feel happy, and oh boy, could she make them laugh.

By Bob DeMarco
Alzheimer's Reading Room

Teddy Ruxpin

Yesterday, I was going out and drove past the pool. I had been looking for a woman named Joanie so I could tell her about Dotty. Joanie knew Dotty for 20 years.

I parked and went into the pool area. As soon as Joanie saw me she jumped up, gave me a hug, and asked me how I was doing.

Then it started. A group of women, including Joanie, were sitting together and Joanie started talking about Dotty. Joanie became all animated, she was laughing and smiling telling her Dotty stories. Everyone was smiling and laughing right along with her. Of course, this included me.

Mount Sinai Performs First Imaging Test to Detect Alzheimer's Disease

Until now, physicians have been limited in their ability to diagnose Alzheimer's disease, guided almost exclusively by a patient's mental and behavioral symptoms and family history.

Alzheimer's Reading Room

Right now, the only way a diagnosis of Alzheimer's disease can be confirmed is with an autopsy.

Because the diagnosis is not currently definitive many Alzheimer's caregivers and their families are left wondering if it really is Alzheimer's, some other type of dementia, or something else. Something else? Is the cause of the memory problems or cognitive deficiencies being caused by something that is treatable?

I'll admit, in the beginning with Dotty I was always hoping that we would find some other cause of her dementia like symptoms, and that an already available treatment would cure her. Essentially wake her up, bring her back. I'm sure many caregivers have similar thoughts.

I know the importance of early detection is often misunderstood. Most assume that if their is no viable treatment, why bother? However, it is imperative to get an early diagnosis because there is a growing body of evidence indicating that early detection leads to better outcomes. A higher quality of life is one important reason.

These tests, if successful, will make a difference.

Untangling Tau, Free Webinar, Cure Alzheimer's Fund

How does Abeta, which appears first in the Alzheimer’s process and exists outside neurons, trigger the initial misfolding of tau proteins? Once the first batch of aberrant tau is created, how does it spread from neuron to neuron?

Alzheimer's Reading Room

Join special guest, Cure Alzheimer’s Fund Researcher Dominic Walsh, Ph.D., and David Shenk, author of the national bestseller, The Forgetting, for a free webinar about the role of tau in Alzheimer’s on Thurday, June 21, 2012 at 2:30 p.m. EST.

Alzheimer’s research for many years has been dominated by a focus on Abeta “plaques,” a focus that largely has overlooked the other infamous hallmark of the disease — the tau-based neurofibrillary “tangles.”

The research world recently has broadened its scope to include significant research into tau.

Cure Alzheimer’s Fund is actively supporting this diversification by funding two tau-based projects.

Click on the image above to register for the this upcoming webinar on the Internet. The webinar is free, all you need to do is register, and attend.

Hospital Observational Status versus Inpatient Status

The difference between observation status and inpatient status at the hospital can hit you where it hurts, in the wallet!

By Carole B. Larkin
Alzheimer's Reading Room

This article is not only for families with a member who has a dementia, but also for all families who have an elderly or disabled family member who is on Medicare.

When one goes to the hospital, there are two admitting statuses, a fact that is not widely known.

A person can be admitted under what we think of as normal “inpatient” status, or they could be admitted under what is known as “code 23” or “observational” status.

When admitted as an inpatient, Medicare uses Part A pays 80% (after the deductible) of all costs, including hospital charges, doctors’ bills, and drug costs.

When admitted on an  “observational status" Medicare uses Part B and does NOT pay 80% for all costs.

It may pay 80% (after the deductible) of bills, but does not pay for things like x-rays, drugs, lab tests, or room and board. Also, the ambulance bill will not be paid, and if the person is ordered to go to rehab, that bill won’t be paid, nor will ordered home health be paid for.

Dotty's Path To Heaven

What was the change that Dotty needed to make before she went to Heaven?

By Bob DeMarco
Alzheimer's Reading Room

For years Dotty would tell me she was going to die.

Sometimes she said soon, sometimes next year, sometimes she would tell me she was going to live to be a hundred years old. Sometimes she said she wished she would die. She sometimes said, I would be better off dead.

Before January 2012, I either said out loud or thought to myself, not yet, when Dotty said she wanted to die.

I usually said to her, not yet, your not ready. I meant that when I said it. I actually think I started saying that to her about 20 years ago whenever she referred to death or dying.

Hospitalization of Alzheimer's Patients Can Lead to Cognitive Decline and Death

A new study confirms that for patients with Alzheimer's disease, hospitalization and delirium pose a particular risk and can lead hastened cognitive decline, institutionalization and death.

Alzheimer's Reading Room

One of my greatest fears was that Dotty would get sick and end up in the hospital. Or worse, that she would end up in the Hospital and die there.

On two different occasions the doctor suggested that we put Dotty in the hospital for a few days for tests and observation. I said "NO" both times.

I was already well aware of research indicating the possible debilitating effects that a hospital stay could have on a person suffering from Alzheimer's or any other type of dementia.

I felt enormous relief when Dotty was approved for Hospice care on May 9.

Dotty died and Went to Heaven in her own bedroom on May 25th.

Please read the research summary presented below carefully. And, please make sure you have all the necessary legal paperwork for end of life situations in place now.

Thinking About Dotty These Days

I can tell you this for certain. Alzheimer's didn't get me down, and it didn't change the way I think about Dotty.

Alzheimer's Reading Room

I'm missing Dotty in a very different way these days. I am missing talking to her about politics, life, and current events.

I now realize I couldn't talk about issues and news in detail with Dotty for many years before Dotty Went to Heaven.

I suppose I simply accepted this. Instead I focused on saying and doing thing that would make Dotty smile. That was the goal.

Woman and Alzheimer's Disease, the Caregiver Crisis

The research uncovered in this report will be instrumental in understanding the burden that caregivers face when managing Alzheimer's disease. 

Alzheimer's Reading Room

Highlights of the study include:

• 82% of current caregivers report keeping loved ones in their home or the patient's home. Of those women, 39% feel they have no other choice; only 16% of care is provided in a nursing facility.
• Although three quarters of the current caregivers feel capable of providing care, 49% feel overwhelmed, 36% report depression, and 65% have not had a vacation in the past year.
• The number of caregivers who live with their patients has doubled to 40% of current caregivers from 15% of former. Both nursing home and assistant living use has declined.
• A whopping 84% say they themselves would want to be diagnosed early, and 51% wish their loved ones had been diagnosed sooner. Only a third of patients were diagnosed at the disease's early stage.

How would you compare these findings to your experience? 

Please use the comments box below this article.

The Long and Winding Road -- Alzheimer's Disease

The Long and Winding Road or the highway? You get to choose.

Jungfrau

By Bob DeMarco
Alzheimer's Reading Room

Life is a long and winding road. Most of us can remember coming to a crossroad in life -- which way to go? Fork in the road -- which way?


Along the road of life some of us become Alzheimer's caregivers. None of us chooses to take this road. It is thrust on us.

Once confronted with the situation we do get to make choices -- which way to go?

104 Year Old Cares for Daughter with Dementia

This story about a mother caring for her daughter with dementia brought a tremendous amount of emotion out of me. Many of you will understand why.

Alzheimer's Reading Room

"We help each other."

"Schielzeth reads the paper each morning and keeps her daughter updated on current events. She tries to keep her mind churning.
She is there to remind her daughter where Frankie is at, what day it is, if she ate."

"She lovingly reminds her, which is a difficult thing, I would imagine, at 104 to have the patience over and over again," said Festari, one of two 24-hour caregivers who split time at the Sarasota house. "My mom passed away when I was 17 so I think this is amazing. It's an honor. It really is."

The moral of this story? Use the comments box below the this article.

The Alzheimer's Hamster Within YOU

One of the most difficult tasks an Alzheimer's caregiver faces is the development of a new set of communications skills. Sooner or later the caregiver needs to come to an understanding that the way they have communicated in the past, before Alzheimer's, won't work in a world filled with Alzheimer's disease.

By Bob DeMarco
Alzheimer's Reading Room

Change is difficult under any circumstance. It is even harder when you need to change something that you have been doing all day long throughout your life.

Every Alzheimer's caregiver I ever met has talked about their need to vent. Venting is a good thing. You get the monkey off your back. However, at some point you need to make a decision to put that monkey in the closet and get off the hamster wheel.

If you have gone years complaining about the same behavior over and over you must ask yourself, how do I change this dynamic?

Purple Scarf

Alzheimer's Reading Room

The Memory Problems animations have been developed to highlight common symptoms of early Alzheimers disease, to educate and help families recognise the early signs of the disease and take action.

An early sign of dementia?




Source: Streaming Well -- Pinterest

When Alzheimer's Patients Say Mean Things, Make an Inventory

The question, how can you get a person living with dementia to stop saying mean and hurtful things to you?

Alzheimer's Reading Room

As the number of new readers grows, or when new caregivers discover the Alzheimer's Reading Room, the number of emails I receive tends to go up fast.

Lately, I have been receiving a lot of emails (and comments here on the blog) asking about how to deal with Alzheimer's patients who say "mean things".

I understand how much this can hurt. It happened to me for many years. It kept happening even though I was trying as hard as I could to reverse it.

The question, how can you get a person living with dementia to stop saying mean and hurtful things to you?

Did Alzheimer's Rob the Person You Know, Living with Dementia, of their Ability to say YES to Activities?

A resounding 73 percent of Alzheimer's caregivers answered yes to this question.

By Bob DeMarco
Alzheimer's Reading Room

I recently conducted a poll and asked this question,

Did (Does) Alzheimer's rob the person you know, living with dementia, of their ability to say YES to activities?

There were three choices: Yes, NO, and Not applicable to me. Here are the results of the poll..

YES --- 73 percent

NO --- 25 Percent

Not applicable to me --- 2 percent

Two Months Before Dotty Went to Heaven, A Wonderful Surprise

Two months before Dotty went to Heaven she delivered a wonderful surprise.

By Bob DeMarco
Alzheimer's Reading Room

This is the coloring pad

The background. Our friend Jeannemarie came to visit. She bought Dotty a coloring pad and some colored pencils. She took Dotty outside with the intention of working with her. After she laid out all the material, she left to take a phone call.

The next thing I knew, Jeannemarie ran in the door and told me to grab the video camera.

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

I believe most people in the Alzheimer's community will agree that Alzheimer's prevention is a good idea.

By Bob DeMarco
Alzheimer's Reading Room

I believe most people in the Alzheimer's community will agree that Alzheimer's prevention is a good idea.

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. And, the brain.

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

When Dotty went to Heaven she was almost 96 years old. This leads me to believe I will live to be 120 years old.. 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?

Imagine the knowledge base of the Alzheimer's Reading Room will have over 50,000 articles by the time I reach 100 years old. I will have read every one of them. I hope this makes me smarter and not confused.

Here are some good off the run eating ideas that might help prevent or delay the onset of Alzheimer's.

Are Diabetes and Alzheimer's Linked?

People with type 2 diabetes have an increased risk of dementia. The insulin pathways are involved in many metabolic processes, including helping to keep the nervous system healthy.

Alzheimer's Reading Room

A C. elegans worm with green
fluorescent protein (GFP) highlighting the
APL-1 Alzheimer-related protein in its body.
(Credit: Collin Ewald.)

Yesterday I published the details about a Phase 2 clinical trial for Alzheimer's and insulin -- Study of Nasal Insulin to Fight Forgetfulness.

If you go to the search box on the right hand side of this page and enter the word insulin, you will a long list of articles about Alzheimer's, diabetes, and insulin.

There are more than 3,676 articles in our Alzheimer's Reading Room knowledge base.

If you are looking for information, use the search box on the right. If you have not done so before try entering the word communication, or Alzheimer's World, you might be surprised to find how much information, useful information, we have here.

Today I was reading this new research summary from The City College of New York. I thought you might find it of interest. You might want to share this also.

Before Dotty Went to Heaven She Changed Her Mind

Alzheimer's caregiving can be burdensome, brutal sometimes.

By Bob DeMarco
Alzheimer's Reading Room

I lost track of how many times Dotty said, "get out, I don't need you here, I can take care of myself".

This was particularly hurtful because I had dropped out of the world to take care of Dotty full time. Twenty four hours a day, seven days a week.

She had never said anything like this to me before, so I knew it was the Alzheimer's speaking.

It did not matter. It hurt every single time.

An Escape from Alzheimer's, Great Grams

Great Grams ran in terror, and she usually ran toward what she feared most. She was an escapist.

By Max Wallack
Alzheimer's Reading Room

Max and Great Grams

My Great Grams, who passed away from dementia in 2007, knew she was “in trouble” (her words), and always felt she needed to escape. She just didn’t understand that the fearful thing that she needed to escape was within her own brain.

Great Grams made many escapes. What she feared most was not having a home.

What she feared was being put into a nursing institution or hospital. She would escape when she was fearful that we, her family, would put her into such a facility.

The sad part of this was that her escapes would often make her greatest fears a reality.

The Caregiver and Perspectives, Two Great Resources for the Alzheimer's Community

Here are two really great resources for the entire Alzheimer's community -- The Caregiver, and Perspectives.

Alzheimer's Reading Room

I wanted to bring two really high quality newsletters into your awareness.

The Caregiver is the newsletter of The Duke Family Support Program. Don't let that throw you off. It is always full of interesting information that is useful to the entire Alzheimer's community.

The current Spring issue features a boatload of information on older drivers, and includes lots of links to good information.

The article entitled "The Meaning of Independence" is interesting. The "Have You Heard" section is very informative. They even have an article by Margaret Toman, and more.

Study of Nasal Insulin to Fight Forgetfulness (Clinical Trial)

The study will examine the effects of intranasally administered long-acting insulin detemir on cognition in persons with Alzheimer's disease (AD) or amnestic mild cognitive impairment (aMCI).

By Bob DeMarco
Alzheimer's Reading Room

I know many of you are interested in insulin and its possible effect on Alzheimer's.

Currently, there is an ongoing Phase 2 clinical trial to study the effects of intranasally administered long-acting insulin detemir on cognition in persons with Alzheimer's disease.

Phase 2 clinical trials are small, and generally they take place in a limited number of locations. In this case in Seattle and Tacoma, Washington.

It is often difficult to find qualified candidates for clinical trials into Alzheimer's disease. As a result, I would encourage anyone located in the Seattle or Tacoma areas to consider this trial. We do have a large number of readers in Washington state.

Taking Trips

Question: should we stop taking trips because my wife has Alzheimer disease?

By Mal Ernst

One thing that I have been told (by doctors, and many times in the Alzheimer’s Reading Room) is that the patient should continue doing what he or she has always done, to the extent possible.

This means chores (the caregiver should not do whatever the patient can still do), exercising, socializing, playing physical and mental games, eating out, etc.

The reasoning is that, whenever the caretaker intervenes (“helps”, or “protects” the patient excessively) too much, the patient soon “forgets” how to do the task; and it would be very difficult to get the patient to remember again.

As long as patients can reasonably do something, then let them do it; even if they happen to make a few mistakes, unless of course it could be detrimental to their health and safety.

Genetic Risk Factor for Alzheimer's Disrupts Brain in Older Women But Not Men

A team led by investigators at the Stanford University School of Medicine has found that the most common genetic risk factor for Alzheimer’s disease disrupts brain function in healthy, older women but has little impact on brain function in healthy, older men.

Alzheimer's Reading Room

Michael Greicius

Women harboring the gene variant, known to be a potent risk factor for Alzheimer’s disease, show brain changes characteristic of the neurodegenerative disorder that can be observed before any outward symptoms manifest.

Both men and women who inherit two copies (one from each parent) of this gene variant, known as ApoE4, are at extremely high risk for Alzheimer’s. But the double-barreled ApoE4 combination is uncommon, affecting only about 2 percent of the population, whereas about 15 percent of people carry a single copy of this version of the gene.

The Stanford researchers demonstrated for the first time the existence of a gender distinction among outwardly healthy, older people who carry the ApoE4 variant. In this group, women but not men exhibit two telltale characteristics that have been linked to Alzheimer’s disease: a signature change in their brain activity, and elevated levels of a protein called tau in their cerebrospinal fluid.

I can remember things that occur in my heart much better than things that occur in my head

Robert Patterson, who has Alzheimer's disease, speaks with his wife, Karen.

Alzheimer's Reading Room

I can remember things that occur in my heart much better than things that occur in my head. ~ Robert Patterson

Walking Speed in the Elderly May be an Early Sign of Alzheimer's Dementia

If we can detect dementia at its earliest phases, then we can work to maintain people's independence.

Alzheimer's Reading Room

The research study described below really struck home with me. For more than two years my mother's ability to walk was deteriorating. Not only was she walking slower, she was scrapping her feet on the ground.

Every time I mentioned this people would say, "she is just getting old". Even her doctor of six years said, "she is just getting old". I had a more succinct response, "You're fired".

Why is this research important? Because the sooner mild cognitive impairment or dementia are diagnosed, the better the likely long term outcome.

I have absolutely no doubt, if someone had said to me, get her tested for Alzheimer's or dementia rather than, she is just getting old, Dotty and I would have made it on to the path of joy sooner. And, the long period of burden would have been greatly reduced.

As I meet more and more persons who are deeply forgetful I continue to learn that those who are diagnosed earlier have a better chance to say what they want to say, and to get into a better routine that helps them function and deal with their own brain disease. I said better chance. I wish I had that chance.

In this research study infrared sensors were installed in the ceiling of home to detect movements in hallways. Wow.

Now all we need to do is take this information into personal care doctors so they can be alert and start testing to rule in, or rule out, dementia when problems with walking and balance first happen.

First Ever Memory Arts Café In New York, Wednesday June 13

Memory Arts Café is a new series of free art events for people living with Alzheimer’s disease, their caregivers and the general public, and is co-produced by New York Memory Center and the Alzheimer’s Poetry Project.

Alzheimer's Reading Room

The series takes place on the 2nd Wednesday of each month and includes light refreshments and the opportunity to chat with the guest artists.

This Memory Arts Café event will feature jazz singer Louise Rogers and pianist Mark Kross as they perform well-known jazz standards and lead the audience in the creation of a new song.

Poet Gary Glazner will host the event.

Untangling Tau, Webinar, First Notice

Many in the Alzheimer's community are interested in Tau tangles. Here is an opportunity to learn more about Tau and the mystery surrounding Tau tangles.

Alzheimer's Reading Room

Join special guest, Cure Alzheimer’s Fund Researcher Dominic Walsh, Ph.D., and David Shenk, author of the national bestseller, The Forgetting, for a free webinar about the role of tau in Alzheimer’s on Thurday, June 21, 2012 at 2:30 p.m. EST.

Alzheimer’s research for many years has been dominated by a focus on Abeta “plaques,” a focus that largely has overlooked the other infamous hallmark of the disease — the tau-based neurofibrillary “tangles.”

The research world recently has broadened its scope to include significant research into tau.

Cure Alzheimer’s Fund is actively supporting this diversification by funding two tau-based projects.

Click on the image above to register for the this upcoming webinar on the Internet. The webinar is free, all you need to do is register, and attend.

Alzheimer's and Anesthesia

Alzheimer's and anesthesia don't mix well. Some physicians are advising their patients that are already diagnosed with Alzheimer’s to avoid surgery unless absolutely necessary.

By Sydney S. Farrier, LCSW

Sydney S. Farrier

How often have you heard the comment about an older person who recently underwent a major surgery, "She was fine until she had that (hip surgery, knee replacement, cardiac surgery, etc) but now she seems confused."

This week I was visiting with an attractive woman in her 80's who had a knee surgery under a general anesthesia a couple of years ago. About six months after the first surgery, another surgery with general anesthesia had to be done due to some problems with the knee. She stated she has never recovered.

Her knee is fine, but the cognitive problems she experienced following these surgeries has resulted in her having to give up her home and the gardening she loved, move to a retirement community near her daughter, forgo driving, and lose the sense of independence she so valued.

Both she and her daughter believe the two general anesthesia significantly contributed to her cognitive changes. She is angry that the possibility for cognitive changes was never discussed with her.

How to Get an Alzheimer's Disease Patient To Take Their Medication

The problem, how to get a person suffering from Alzheimer's disease to take their medication?

By Bob DeMarco
Alzheimer's Reading Room

This is often difficult to do, and is a common problem that is faced by Alzheimer's caregivers.

Like many, I faced this problem with my mother, Dotty, who lived with Alzheimer's disease.

Over time, through trial and error, I finally learned an effective way to deal with this problem.

Memories and Music

Emotional memories are very well preserved in Alzheimer’s Disease – love, affection, etc., so songs that carry those emotional memories are best retained.

By Max Wallack
Alzheimer's Reading Room


Here is an amazing video of Henry. In this video, watch as Henry opens his eyes, and we can see that there is definitely “more there”. NO WONDER over 850,000 people have marveled at this video! As you watch this video, keep in mind that Henry had been almost mute.

Alzheimer's Reading Room Writers and Contributors

Bob DeMarco, Founder

Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room, and an Alzheimer's caregiver. His mother Dorothy lived with Alzheimer's disease. Bob is a recognized Alzheimer's expert on Sharecare, an Alzheimer's Influencer, speaker, and writer. The Alzheimer's Reading Room has more than 4,000 articles in its knowledge base

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Tom and Karen Brenner, Montessori Gerontologists

Tom and Karen Brenner are Montessori Gerontologists, researchers, consultants, trainers and writers dedicated to working for culture change in the field of aging. They are the authors of  You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. Learn more about Tom and Karen at Brenner Pathways

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Marie Marley

Marie Marley, PhD, was a caregiver for Dr. Edward Theodoru, her delightfully colorful, wickedly eccentric Romanian soul mate, for seven years. After he passed away in 2007, she wrote an award-winning book about their relationship, Come Back Early Today: A Story of Love, Alzheimer’s and Joy. In the course of narrating their 30-year love story, Marie illustrates the solutions she found to 14 different issues that typically arise when loving and caring for someone with dementia. You can visit Marie’s website which contains a wealth of information about caregiving at ComeBackEarlyToday.

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Rudy Tanzi, Neuroscientist, Harvard, Mass General

Dr. Rudolph Tanzi is Director of the Genetics and Aging Research Unit at Massachusetts General Hospital and the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School. Dr. Tanzi co-discovered three of the four known Alzheimer’s disease genes and directs the Alzheimer’s Genome Project. Dr. Tanzi has published over 400 papers and has received several awards, including the Metropolitan Life Foundation Award and Potamkin Prize.

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Test Your Memory for Dementia in 15 Minutes (SAGE)

The research from this Alzheimer's memory test, Self-Administered Geocognitive Examination (SAGE), shows that four out of five people (80 percent) with memory issues will be detected by this test. 

Ninety-five percent (95) of people who are normal thinking (memory) will have normal SAGE scores.

By Bob DeMarco
Alzheimer's Reading Room

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Please note.

If you decide to self administer, or administer this test for someone you know, you should understand this is an assessment tool and that you are not receiving an official diagnosis of mild cognitive impairment, Alzheimer's, or any one of the eight types of dementia -- Dementia and the Eight Types of Dementia.

If you find the test results suspicious, you should contact your doctor immediately, and ask for a neurological or geriatric consult. These specialist can determine, through a series of tests, whether or not you are suffering from or headed for Alzheimer's disease.