Why Do Alzheimer's Patients Wander?

By Max Wallack
Puzzles to Remember 
Previously, I had heard about Alzheimer’s patients wandering as a non-goal directed behavior. People with Alzheimer’s disease frequently pace and are restless. It is reasonable that they might wander to an area which is now unfamiliar to them and become disoriented and lost.

The goal-oriented wandering is usually understood as searching for a place and time that the Alzheimer’s patients remembers that gave them peace and comfort.

The type of wandering that my family dealt with was escapist wandering. 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 worst of Great Grams’ escapes came early one morning. Grandma and Grandpa were home with Great Grams. Grandma was still sleeping. Often Great Grams would plan her escape. One way we had a heads up was that we would notice that she would put on her nightgown on top of all her other day clothes, so she would be ready for her escape.

On this particular morning, Great Grams quietly snuck out of the house. The house is on top of a steep hill. Once you walk down the long street, you reach a major street. Keep in mind, Great Grams was about 92, and she had Paget’s disease of the bone, which, in her case, produced leg pain and a weak bowed left leg. Well, somehow Great Grams managed to run down that entire hill to the main street. Grandpa noticed she was gone, and ran after her. He didn’t even have time to put shoes on.

Now, Great Grams was a very fearful woman. She had been a fearful person her whole life. She was afraid of traffic, afraid of strangers, etc. Well, this fearful woman started flagging down trucks out on the major road to beg for help because we were “going to kill her”.

Let’s picture that scene. A tiny woman in her 90’s is standing on a major street corner with a man around 60. This man, wearing no shoes, is arguing with the woman.(He was trying to convince her to come home.) It didn’t take long for a truck to stop and offer help.

Then, the unbelievable happened. Great Grams, this tiny fearful woman with the bad leg, climbed up into the truck with this strange man. Her fears had driven her to do what she feared.

Fortunately, we learned later that the truck driver lived nearby, and he had accurately assessed the situation. He said he felt sorry for Grandpa.

He drove Great Grams to the police station, where she continued her accusations. The police sent her to the hospital by ambulance. She was then transferred to a psychiatric facility for several weeks, before she came home once again.

What Great Grams did, could not be considered wandering, in my mind, until I read the article explaining escapists. Great Grams ran in terror, and she usually ran toward what she feared most. She was an escapist.
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Max Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Alzheimer's: Good Genes Gone Bad

By Max Wallack

Puzzles to Remember

Many diseases are caused, at least in part, by bad genes, including phenylketonuria, alkaptonuria, Tay-Sachs disease, porphyria, and early-onset Alzheimer's.

Other conditions, like late-onset Alzheimer's, have complex causes, but certain genes are known to increase the risks.

Biologists have long wondered, if conditions like these are harmful, why hasn't natural selection eliminated them from our populations?

In case after case, it turns out that the allele, or gene variation, responsible for a disease sometimes confers a benefit that may explain why natural selection has not weeded it out of the population.

The best-studied example of this phenomenon is sickle-cell anemia, a disease caused by a mutation, HbS, in the gene for hemoglobin. Red blood cells in people who have two copies of the HbS allele have a greatly reduced oxygen-carrying ability, and under certain conditions they assume deformed, sickle-like shapes that clog the body's capillaries and produce painfully swollen joints, deformed skull bones, and an enlarged spleen. Without the proper drugs, people with sickle-cell anemia usually die before adulthood.

The HbS allele, however, is relatively frequent in many parts of Africa (and also in Laos and Cambodia). It turns out that a single copy of the HbS allele greatly reduces the chances of being bitten by malaria-carrying mosquitoes, or of actually getting malaria even if bitten. In swampy places where malaria mosquitoes abound, natural selection favors the HbS/HbA (heterozygous) condition, explaining the high prevalence of the HbS allele in many parts of the world. Other disease-causing genes that confer resistance to malaria include those causing thalassemia and G6PD deficiency.

Other possible examples are numerous. The gene that causes Tay-Sachs disease is thought to confer a degree of resistance to tuberculosis, a disease that once ravaged many European populations and that still persists in several of the poorest parts of the world. The gene causing cystic fibrosis is thought to have protected Medieval populations against the bubonic plague, and possibly also against tuberculosis

Huntington's disease is a genetic disorder that kills its victims after age 40, but the gene persists in many human populations because the people who eventually die from Huntington's may have a reproductive advantage and often have a greater-than-average number of children before they get the disease.

The Rh factor is a blood cell antigen that causes many infant deaths each year if an rh-negative mother makes antibodies against her Rh-positive baby. As in Huntington’s disease, the condition persists in the population because rh-negative mothers seem, on average, to have more children than other women.

One of the genes commonly associated with late-onset Alzheimer's disease is called ApoE4. Recent discoveries have shown that the ε4 allele of this gene, even when present in just a single copy, enhances memory performance in healthy teenagers, compared to the more common ε2 and ε3 alleles (see references at the end of this article).

In other words, the allele has cognitive benefits in terms of efficient memory earlier in life, but increases the risk of Alzheimer's disease much later in life. The same allele also reduces the chances of certain infections, including Chlamidia.(the most common sexually transmitted infection) and Giardia (a parasitic disease).

People who could avoid these infections and could learn better and remember more efficiently in their teens or young adult years might leave more children, even if they were destined to have Alzheimer's disease in old age. Natural selection would favor such an allele, especially in times past, when average longevity was well below 60 years and few people lived old enough to develop Alzheimer's.

Another, much rarer gene, TREM2, has recently come to light in Europe. Certain people in Iceland, Norway, and several other countries suffer from a condition, sclerosing leucoencephalopathy, in which the bones break down internally and an unusual dementia begins around 40-45 years of age. The dementia begins very slowly, but worsens dramatically after a few years and usually causes death before age 50.

Researchers studying the families of people with this disease found that carriers of the allele responsible for the disease were likely to develop Alzheimer's disease. Researchers also found that the normal allele of this gene helps maintain certain types of cells, including white blood cells, bone-eating osteoclasts, and microglial cells in the brain. The microglia patrol brain tissue and scavenge away the amyloid beta whose buildup forms the plaques that causes Alzheimer's disease. The mutated version of the TREM2 gene interferes with this scavenging activity, allowing the amyloid beta to accumulate and cause Alzheimer's.

Researchers who study the immune system are hopeful that studies of this scavenging activity in the brain can lead to a treatment for late-onset Alzheimer's.

REFERENCES

• Better Memory and Neural Efficiency in Young Apolipoprotein E ε4 Carriers
• Better Episodic Memory in Young E4s
• APOE
• The Biology of Human Longevity:: Inflammation, Nutrition, and Aging in the Evolution of Lifespans
• Systemic inflammation, infection, ApoE alleles, and Alzheimer disease: a position paper
• Brain gene APOE e4 linked to dementia
• Mutation Raises Alzheimer's Risk
• Alzheimer’s Tied to Mutation Harming Immune Response
• New gene holds promise for understanding Alzheimer's
• Variant of TREM2 Associated with the Risk of Alzheimer's Disease
• Antagonistic pleiotropy as a widespread mechanism for the maintenance of polymorphic disease alleles
• Gene mutation identified as new risk factor for Alzheimer's
• TREM2 Variants in Alzheimer's Disease

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Max Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at

Boston University School of Medicine.  His great grandmother, Gertrude, suffered from

Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Memory Cafes are Truly a Wonderful Thing for Alzheimer's Patients and Their Caregivers

 Memory Cafes began in the Netherlands in 1997. The idea was the brainstorm of Bere Miesen, a Dutch psychiatrist.

By Max Wallack
PuzzlesToRemember

Miesen wrote:

“The Alzheimer’s café is an informal way to make contact with each other, to receive a consultation and feel at home. In the Netherlands, patients feel they have a place to just be. This way the patient and their family don’t have to deny or avoid the illness.”

By the year 2000, Dr. Miesen’s original café was attended by between 100 and 150 people each month. By that time, there were already 10 Memory Cafes in Holland. One caregiver at these early cafes commented,

“It is very difficult for carers to get time for themselves, recharge their batteries or receive respite support. The isolation they experience is sometimes unbearable.”

In November 2000, the first Memory Café opened in the United Kingdom. Today, most communities in Great Britain have one or two Memory Café meetings every month.

John and Susan McFadden from Wisconsin became involved in early Memory Cafes in the United States.  They describe them as a

“place where persons with early-stage dementia and their “carers” can come together to share social time unhampered by stigma, awkwardness or discomfort. One of the goals is to make certain no distinction is made between those who are living with memory loss and those who are not—all participants are simply enjoying time with one another. . . . Often, important ongoing friendships are formed.”

The McFaddens also offer these quotes from participants in the Memory Cafes:

“This time here when I come to the Memory Café, is the only time I feel like I am me again.’”

“I come in with a stranger and go home with my husband.”

The first Memory Cafes in the U.S. appear to have originated around 2008. Today, on the ThirdAge Services website, Carole Larkin provides a list of where they currently are, as well as a detailed pamphlet about how to begin a Memory Café in a new area. Click on Memory Cafe when you get to ThirdAge Services to find this information.

On my site, PuzzlesToRemember. I have included many photos of Alzheimer’s patients and their caregivers enjoying Springbok’s PuzzlesToRemember at Memory Cafes.


One thing is clear, we need MANY MANY more Memory Cafes in the United States. Just watch this video to see how thankful the members of one U.S. Memory Café are to the UK Memory Cafes that they used as a model:

Max Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine. His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Original content the Alzheimer's Reading Room

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Please Nominate Bob DeMarco at the AlzheimersReadingRoom for a WEGO Health Activist Award

There is currently an award program for “Health Activists”

http://info.wegohealth.com/health-activist-awards-2012/

The program is described this way:

“Health Activists inspire us every day with their commitment to online health communities. Let’s celebrate their accomplishments and recognize their contributions. The Health Activist Awards honor the leaders who made a real difference in how we think about healthcare and living well in 2012.”

The “Best in Show Awards: Blog” category is

“Awarded to someone who exemplifies the use of one particular social platform to raise awareness and make connections. Nominate your favorite blogger, community leader, facebooker, tweeter, or vlogger.”

I have nominated Bob DeMarco, founder of the AlzheimersReadingRoom for the blogging category. I’m sure the more nominations Bob receives, the better the chance he will receive this well-deserved honor.

Let’s all thank Bob, today, for everything he is doing on behalf of Alzheimers patient and their caregivers by nominating him for this award!

Thanks,
Max

Max Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Memory Cafes are the Wave of the Future for Alzheimer's Care

By Max Wallack

Puzzles to Remember

 Memory Cafes have been very popular for some time in Great Britain, and now they are becoming much more popular in the United States.  They are friendly gatherings of Alzheimer's patients and their caregivers.

In many ways, they are not unlike Adult Day Care, except there is one important difference.  The person with Alzheimer's attends TOGETHER with their caregiver.

Many Alzheimer's patient balk at the idea of attending Adult Day Care.  They may feel frightened, or they may resent being "sent away".  However, these same individuals usually love to attend the Memory Cafes because they view them as inclusive social outings.

Once at these cafes, the Alzheimer's patients quickly make friends and engage in simple activities, games, or puzzles with their peers.  Meanwhile, caregivers have the wonderful opportunity to talk to other caregivers, receiving much needed advise and emotional support.

Many facilities like libraries are more than willing to "loan" the use of their facilities for this purpose.

My friend, Carole Larkin, who is a Geriatric Care Manager in Dallas Texas, has authored a "How To" manual for those interested in beginning a Memory Cafe in their area.  Carole has posted this manual on her site:  www.ThirdAgeServices.com.  She has also compiled a list of current Memory Cafes in the United States.

In Carole's words,

" in my opinion Adult Day Cares and Memory Café’s are vastly different. Here’s how:

At day cares, the person with a cognitive illness is dropped of at the day care for a day or maybe a half a day, then the caregiver leaves. At a Memory Café, the caregiver and the person with dementia are together the whole time. And the whole time is an hour and a half, maybe 2 hours but that’s pushing it. I have never seen a Memory Café where the caregiver and the person with dementia split up."

Here is a link to her booklet "Want to Start a Memory Cafe  in Your Neighborhood?"

Here is a link to the current memory cafes in this country:  Memory Cafes

You may also contact Carole Larkin at thirdageservices@gmail.com.  She is available for individual consultations.  Her experience is vast, and  her advice is invaluable.

Max Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Special Holiday Offer on Springbok PuzzlesToRemember

By Max Wallack

Puzzles to Remember

Beginning today through Nov 27, customers can order Springbok PuzzlesToRemember for Alzheimer’s patients, use the code “holiday10” at checkout, and receive an additional 10 percent discount.  There will also be free ground shipping for all orders over $50 and a $5 flat rate for orders under $50.

Here are some of the puzzles currently available:

Everyone who places an order from now until Nov 27 will also receive this high quality calendar absolutely FREE:

Max Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Recently, I learned that I will be the recipient of the Gloria Barron Prize for Young Heroes.

by Max Wallack
PuzzlesToRemember

This award comes with a $2500 prize that I may use either for my education or for my cause. I will be donating this prize to the Pharmacology and Experimental TherapeuticsLaboratory at Boston University’s Alzheimer’s Disease Center.


I work in this laboratory 3 to 5 days a week, as a Research Intern. I am fortunate to be surrounded by some of the best and brightest Alzheimer’s researchers anywhere. Not only are these scientists brilliant, but they are hard working, kind, and compassionate. These are things I value greatly; I don’t believe brilliance alone can accomplish much.

Because funding is hard to find in these days of economic stagnancy, I have been trying very hard to apply for various awards and research funding. I have found a great deal of help on the Alzheimer’s Reading Room. Carole Larkin was one of the people that wrote my letter of recommendation for the Gloria Barron Prize, Emma Richman wrote another, and Marie Marley has been working with me to apply for various grants. I am so thankful to these trusted friends I have found on the ARR!

I believe that Alzheimer’s Disease must be fought on multiple fronts. Research is imperative, but even research must be diverse and range from Dr. Tanzi’s innovative genetic research, to Dr. Qiu’s and Dr. Zhu’s  important research on the AD/diabetes connection and various enzyme interactions, to John Ziesel’s important art programs and their effects on Alzheimer’s patients and caregivers. Equally important is the kind of empathetic physician interaction exemplified by Dr. Forester, at McLean Hospital and many other wonderful Geriatric Psychiatrists that I have had the opportunity to meet.


Since I first learned about Memory Café’s, I have felt that these are the wave of the future for Alzheimer’s caregiving. AD patients often resent being sent to Adult Day Care, but, somehow, they never resent participating in social events TOGETHER with their caregivers. Once there, they meet others like themselves, and they quickly become involved in activities, giving caregivers an opportunity to interact, learn, or just relax.

Perhaps, some of these cafes might become a source for the type of Cooperative Caregiving that Bob envisions, with two or three of the caregivers being given the opportunity to take a few respite hours.

This week, Carole sent me a newsletter, Memory Memos, from the Upper Valley Alzheimer’s
Community, which is in the Lebanon NH area. They are obviously running some great programs! Here are some photos of their participants doing Springbok PuzzlesToRemember at their Memory Café, being facilitated by Dr. Santulli from the Dartmouth Institute.

I know Carole is becoming very involved in setting up numerous Memory Cafes. These patients and their caregivers will be very fortunate.






Max Wallack is a student at Boston University and a Research Intern in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine. His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder ofPUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Efforts on Behalf of Alzheimer’s Patients

By Max Wallack

Puzzles to Remember

PuzzlesToRemember has, by now, distributed puzzles to over 1500 facilities.  These facilities include locations in every state, Canada, Mexico, Colombia, England, and Aruba.

 

Over 15,600 puzzles have been supplied.  More than half of these are new puzzles, while the remaining puzzles are gently used puzzles. The value of these puzzles is estimated at about $140,000.

Puzzles of over 500 pieces are sent to assisted living facilities.  Puzzles of 100-500 pieces are sent to Adult Day Care centers and nursing facilities housing patients with Mild Cognitive Impairment.

Puzzles with fewer than 100 pieces are supplied to Alzheimer’s and dementia units.  These puzzles are especially helpful because they allow a feeling of accomplishment to patients experiencing few successes.  These puzzles have bright, colorful images that appeal to the portion of the brain which is most intact in Alzheimer’s patients.

Here are some of the specialized Springbok PuzzlesToRemember puzzles:

Below are images of Alzheimer’s patients experiencing joy while working on these puzzles. Those who work with Alzheimer’s patients realize that joy is not an emotion experienced frequently enough by this population!

I am contacted by email (PuzzlesToRemember@gmail.com) daily by people around the globe that have puzzles they would like to donate to nursing facilities.  I research the facilities in their area and I supply the names and addresses of facilities who house patients with abilities appropriate to the complexity of the puzzles being donated.  Many facilities have benefitted from these donations, while the people supplying the puzzles are able to take a tax donation.

My work with and on behalf of Alzheimer’s patients has led to my decision to become a Geriatric Psychiatrist, working with Alzheimer’s patients and their caregivers.  These caregivers are often under a great deal of stress, and often succumb to illness and fatigue.  For this reason, I often write for the AlzheimersReadingRoom.com, which is a leading internet site for advice and support for Alzheimer’s caregivers.

I have also been invited to become a member of the American Association for Geriatric Psychiatry, and I attended their conference last spring, where I learned a great deal.  I am happy to be able to say that there are some wonderful, compassionate, geriatric physicians, and many more in the pipeline.  That is very important for our aging population and impending Alzheimer’s epidemic.

I believe that any approach to treating Alzheimer’s disease must be multi-faceted, and research must be a critical part.  Toward this end, I am spending 12-20 hours per week doing research at Boston University School of Medicine’s Pharmacology and Experimental Therapeutics Laboratory.

 

One of my projects concerns the use of various enzymes as biomarkers for Alzheimer’s disease, while another project measures the effects of stress on the timing of the onset of symptoms in transgenic mice, bred to have Alzheimer’s disease.  

 I value every minute of my research work, and I am very fortunate to have some wonderful mentors.

I hope to present my research at Boston University this Fall and at a major conference in the Spring.  It is my passion to be able to make a difference in this disease.

Max Wallack is a student at Boston University and a Research Intern in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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A Note of Thanks for the Springbok PuzzlesToRemember

By Max Wallack

Puzzles to Remember

Today, I received this note of thanks from Patricia in San Angelo, Texas:

Dear Max,

Because of your website, Puzzles to Remember, I found the link to Springbok Puzzles and was so very glad to find the perfect puzzle for my mother … Chocolate Sweetheart.  With only 12 pieces and a theme that she loves, we will have a grand time putting it together and without frustration.

I hope to build a collection of puzzles for all the residents at Sagecrest Alzheimer’s Care Center in San Angelo, Texas to share and enjoy.  The bright colors and themes of the Springbok puzzles are inspired, and I thank you for introducing me to them.

Sincerely,

Patricia

I hope the residents at the SAgecrest Alzheimer's Care Center have a wonderful time with these puzzles!

Max Wallack is a student at Boston University and a Research Intern in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Aruba: Where 70 is "old enough" for Alzheimer’s Patients and the Elderly

"Max, it's a shame for me to tell the world, that the government of Aruba is not treating their elderly and the person with Alzheimer's or MCI fairly, whilst the government will continuously boast to the world that Aruba is "One Big Happy Island" and one of the most visited islands in the Caribbean."

By Max Wallack
PuzzlesToRemember

Recently, I wrote an article about age discrimination, mentioning that working at the Memory Clinic at the VA hospital was the saddest part of my week. I was unprepared for the comments that appeared when Fundacion Alzheimer Aruba posted the link to my article on Facebook.

Within minutes, there were 36 comments. Unfortunately, they were not in English. I decided to message Fundacion Alzheimer Aruba and request a translation, if possible.

The translation I received was shocking.

Here is some of the information that the President of their organization provided:

“Here in Aruba the National Health Insurance has decided now since 3 years ago that the elderly older than 70 years will not receive all adequate services they deserve (e.g. thorough diagnosis and cognitive assessment) "because of their age"!

You would have noticed that your wonderful article caused a great consternation in Aruba and our friends on the Facebook (FB), and I am pretty sure the days to come! The messages and comments are all indicative that the Aruba Government and the National Health Insurance, (where every Aruban citizen is insured), is committing a discriminatory act against the elderly and the person with possible neuro-cognitive dysfunctions and/or neuro-degenerative conditions. 

There was a comment on FB that nothing can be done but wait on the law (as in the Netherlands) for euthanasia  and even mentioned Adolf H. Others will come forward with their experience of their caretakers in the elderly homes where several elderly were fixated (mentally with drugs, and/or physically in a chair/bed and without any daycare program in this home). Regarding the medication: the elderly with Alzheimer's receive medications, which are not being properly (on a regular base) monitored, even in the case of contra-indications (secondary effects) these has on the elderly.”

The president of the Aruba Alzheimer's Foundation continues, saying:

“Max, it's a shame for me to tell the world, that the government of Aruba is not treating their elderly and the person with Alzheimer's or MCI right, whilst the government will continuously boast to the world that Aruba is "One Big Happy Island" (happy for who?) and one of the most visited islands in the Caribbean. 

The Inspection of Health is not functioning properly (if not at all). The caregivers and patients with AD are afraid to stand up for their rights, since they are afraid for the consequences, repercussions these comments might have for their families and or caregivers.“

“There are more or less 3 daycare centers in Aruba not all are in place or adequately prepared or have trained professionals to care for the person with Alzheimer's, and there for business/ financial sake. There are also workers ( mostly volunteers) in the daycare centers that are doing a good job too.”

It took a while for that information to sink in!

People who worked and paid into their system in ARUBA, are not receiving an adequate health insurance after the age of 70!  To answer Bob’s recent question about age, I guess the island of Aruba, one of the most prosperous islands in the Caribbean, has decided that 70 is old enough!

The families of these patients sit and wait for euthanasia to be approved as the best means of attaining relief for their loved ones!  “Elderly homes” regularly “fixate” their patients with drugs, not always monitored, and “fixate” their patients to chairs or beds. There is no adequate daycare program.

Dr. Melva Croes has been volunteering as President of the Fundacion Alzheimers now for 10 years. She says she often feels frustrated as a caregiver and advocate of her community, but she greatly values her work and her advocacy on behalf of Alzheimer’s patients.

To the Alzheimer’s Reading Room, Dr. Croes says,

“thank you for your wonderful and interesting articles.. . They really contribute to our knowledge of what is happening in your country and the world. I read them as soon as they reach our mailbox. We always do read everything usable to help us in bringing the awareness here in Aruba. Sadly to say that the contribution in this field on the part of the government will not always being honored: Last week I overheard that our proposal to start a research in Aruba together with the CBS on the prevalence of AD in Aruba, has been scrapped of the list of priority by the Aruba Government.”

The citizens of Aruba are dependent on sites like the Alzheimers Reading Room as the source of information about new developments, caregiving, and Alzheimer’s awareness!

With a donation of Alzheimer’s puzzles from Springbok Puzzles, I will be sending puzzles to Aruba over the next week or two. I know that is way too little in the way of help, but I keep trying to imagine a smile on the face of one of these patients who, perhaps, hasn’t smiled in months.

Soon, Alzheimer’s Aruba will be publishing a program of the activities of their tenth anniversary of the "Aruba Alzheimer's Teal Ribbon Week" and a upcoming workshop.

 I hope we will all encourage them in their efforts.

The following comments are Dr. Croes’s translation of some of the facebook comments:

"Some comments fall into the category of people not believing that they are paying into the system and not being able to enjoy all available benefits after the age of 70. The neuro-psychological diagnosis for AD and even dental hygiene is a good example of essential treatments not given to the people of 70+ anymore.

Another valid point made in the discussion is the fact that even a decent form of care is not available for those that have not (have) had a high income. This meaning that several adequate basic care becomes and elitist affair. After all, who can maintain themselves with the little bit of money the normal pension gives? ( more or less US dollars 500) per month. 

Another man in this polemic mentions that he would rather undergo euthanasia to be sure he will not have to suffer from the inadequacies in care for those 70 or over. He even goes to suggest that certain mass murder practices such as that from the A. Hitler days could be used to relieve many of their miserable existence in one shot. The conclusion being that many people just cannot undergo euthanasia because there is no law for it yet in Aruba. To the euthanasia argument Fundacion Alzheimer Aruba replied by stating the ethical boundaries of letting a person with AD undergo euthanasia. The Dutch law prescribes the person to be legally sane to be able to make the decision him/herself, something that is not the case with AD. 

Yet another lady goes on about the loose immigration policy for certain foreigners that immediately go into welfare and therefore not contribute to the national healthcare system.
For mismanaging this situation she also calls for the resignation of all national healthcare management and affiliated politicians, since the elderly are only beneficial for their votes and the financial contribution they have paid in the past (and deducted from their pensions now they are no more contributing to the Aruba workforce). 

Another gentleman claims that after the age of 45 many people are subjectively degraded in various sectors in Aruba. He cites examples such as trying to get a job after 45 and being told that one is over-experienced. He also mentions that there was a system before the national healthcare system (ppk card) that covered many medical services such as dental work and glasses. With the introduction of this system this has disappeared.

Another person laments the fact that she nor the family was able to take care of the grandmother at home. She claims to be lucky to have found a "more or less" adequate elderly home for her, however; this does not always seem to be the case. Many elders are being fixated (mentally with drugs/ physically in a chair or bed), do not get enough exercise, only get to watch TV all day or watching in the space and sleep in rooms in which the air-conditioning is set too cold causing the rheumatoid arthritis to act up.
She goes on saying that when she goes visiting her mother she will set the air higher, but the next day when she arrives on her daily visit, the air is set very cold again! Before coming into that elderly home lots of questions is being asked: on e.g. what food does the mom like and what are her hobbies. 

Unfortunately she does not get the appropriate food, and her hobbies are discarded, and she is left to sit all day doing nothing. Unfortunately the inspectors don’t function on Aruba. The rules are in much so in place for adequate care but these only seem to be there as decoration to a failing system of care. 

The question of medication was also brought up. It would seem that the explanations of medicine given to the elders are not translated or communicated to the family. When the elderly starts complaining about side-effects due to interaction with previously taken medicine these complaints are discarded by the doctors / nurses or "professional" caregivers in the home. It would seem that a policy on what to do on medication that creates side-effects is absent. The elderly are usually shoved to the side ( saying because of the high age) nothing can be done, whilst on the other side prescribing lots of (sometimes even outdated) medication. 

The family are not being informed on the medicines or change in medicines given to the elderly. And when the family member ask for this information, this would NOT be honored or discarded as impolite. Even though a black box warning of the FDA on the medication Risperdal is not taken seriously, nor it's side effects. 

Another set of comments boils down to the crude, cold and economic thinking that seems to dominate the management of the national health care system and the elderly homes. Many do not find it to be fair that after working so many years and raising your children to become contributing citizens to society get degraded by the politicians and management of the national healthcare system."

Max Wallack is a student at Boston University and a Research Intern in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Puzzles Helping Alzheimer’s Patients

By Max Wallack Puzzles to Remember

It’s been a great week for PuzzlesToRemember.  This past week, I was instrumental in placing puzzles in over 40 nursing facilities.  I was able to provide puzzles to 20 specialized Alzheimer’s Disease units, with the help of Springbok Puzzles, who provided their Springbok PuzzlesToRemember for these facilities.  These are great 36 large-sized piece puzzles, with bright colors and memory provoking themes.  They can be viewed here.

I provided an additional 13 facilities with puzzles that I personally collected from bins I have placed in various locations in Massachusetts.

 

Approximately 10 facilities were supplied with puzzles as a result of people around the country, who contacted me at PuzzlesToRemember@gmail.com.  I was able to locate a facility in their area to which they could bring their puzzles.  The facilities were very grateful, and I was able to provide a tax donation letter to the owners of the donated puzzles.

I was very pleased to receive this letter of appreciation from The Springs at Missoula in Missoula, Montana:

“Max - Thank you for your generous gift of puzzles.  The residents in our memory care will thoroughly enjoy them!  You are doing an amazing and very thoughtful thing, in honor of your great grandmother!  What a commitment, but rewarding project, knowing you are making a difference in so many lives!  Thank you, again, for your gift of puzzles!”

Thank you for your wonderful note!  You encourage me to keep providing puzzles to help those afflicted with this disease, while also pursuing my research in the hopes of attacking this disease from many fronts. 

Max Wallack is a student at Boston University. His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Puzzle Club Donates to PuzzlesToRemember

By Max Wallack

Puzzles to Remember

I was recently contacted by Becki, who lives near Jackson, Tennessee.  Becki is part of a group called the New Jacksonian Jigsaw Junkies.  Over the past 20 years, this group has amassed over 500 jigsaw puzzles.  Storage space is getting tight, and they would now like to donate their puzzles to PuzzlesToRemember.

I have located about a dozen facilities in the Jackson area to which they will bring puzzles.  Becki told me one of the members had gone to the Veteran’s Home in Humboldt and noticed that there were jigsaw puzzles set up on the tables in their activity room.  I was happy to hear this since I had sent puzzles to that facility about a year ago.  It’s good to know they are being used to help our veterans!

I will be supplying the members of the puzzle club with donation letters so that each member can receive a tax donation for the puzzles they donate.

 

If there are other puzzle groups out there who would like to donate their puzzles, please contact me at the email on the bottom of this page.

Max Wallack is a student at Boston University.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Encouraging Philanthropy

By Max Wallack

Puzzles to Remember

Helping Alzheimer’s patients and their caregivers is my passion. By the age of six, I was integrally involved in the care of my great grandmother, who had dementia. I made a number of inventions to help her, ranging from a special step to get into our minivan to a seat attached to her cane for shopping.

Near the end of her life, Great Grams was admitted briefly to several hospital geriatric psychiatry wards, and she spent the last 10 weeks of her life in a dementia ward at a nursing facility. Upon visiting these facilities I saw the beneficial effect that working on jigsaw puzzles had on these patients. Somehow, they were calmer and more alert, overall “more there” mentally.

After Great Grams’ death, I decided to collect jigsaw puzzles and distribute them to facilities caring for Alzheimer’s patients. I began by delivering puzzles to each facility that Great Grams had been in, as well as each veteran’s facility that I could travel to. That is how PuzzlesToRemember was born.

Since that time, I have also spent thousands of hours volunteering, including doing research on the enzymes that may have the possibility of helping us identify Alzheimer’s disease in its earliest stages, when it is most treatable. I plan to become a Geriatric Psychiatrist, spending my life helping Alzheimer’s patients and their caregivers, both clinically and through research.

In addition to pursuing my own passions, I feel it is important to encourage other young people to become involved in philanthropy and give back to society. No one is too young to make a difference. The effects of microphilanthropy can be huge. Many people doing a little can be more powerful than a few people doing a lot.


I have given many addresses to schools, religious groups, etc. about my views on philanthropy. Recently, I was called upon to give a keynote address to over 600 people on this topic. The group consisted of gifted students and their parents. I felt it was important to spur this group of students on to become involved in giving back to society. 


Below, is a link to my presentation.

Max Wallack is a student at Boston University.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Alzheimer’s Puzzles Delivered in Reno and Sparks, Nevada

By Max Wallack
Puzzles to Remember

Earlier this week, I had the privilege of presenting a keynote address at a conference in Reno, Nevada. There were over 600 people present.

My address focused on two areas. First, it was my goal to inspire many young people to become involved in philanthropy. I believe a person is never too young to be able to make a positive difference in the world. Second, I talked about my own activities, including my current research work with enzymes related to Alzheimer’s Disease.

Springbok Puzzles had donated over 50 Springbok PuzzlesToRemember for the purposes of displaying them at this conference. On Monday, before returning home to the East Coast, I visited 9 nursing facilities in the Reno and Sparks area, and I donated these puzzles to those facilities.

It was a privilege to be able to visit these facilities and meet some of the patients there. I saw the eyes of one patient light up when I gave her the Coral Carnival puzzle. She loved the picture on the box, and she pointed to the picture of the fish and said she had one like that!

In another facility, there was a group of residents working on puzzles when I arrived. The activity director said she had to help them because they really were not capable of doing such complicated puzzles. It seemed like I had arrived at exactly the right moment to be able to turn things around. Clearly, the residents became much more engaged when I gave them the 36 piece puzzles.

It was a wonderful visit to Reno for many reasons. On Sunday, I spoke to many people about how wonderful philanthropy can make a person feel. On Monday, delivering puzzles, I got to experience that feeling myself.

Max Wallack is a student at Boston University.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Springbok Puzzles Donates $500 to Honor the Passing of Dorothy DeMarco

By Max Wallack

Puzzles to Remember

Springbok Puzzles has donated $500 toward providing Springbok’s PuzzlesToRemember to Alzheimer’s facilities.  These puzzles are beautiful, artistic images, provided in 36 large-sized pieces in order to meet the needs of Alzheimer’s patients. 

These funds will allow PuzzlesToRemember to supply puzzles to an additional 30 Alzheimer’s facilities.  I receive consistent feedback about how beneficial these puzzles are to the patients.  They are very calming and put a smile on the faces of these patients.

 

Research is showing that working on puzzles may significantly extend the time during which an Alzheimer’s patient is able to remain cognitively functional in society. 

 

Thank you, Springbok, for developing this line of puzzles.  Thank you, also, for honoring Dorothy DeMarco in this wonderful way.  We all miss her very much.

Below are some images of the puzzles for Alzheimer’s patients, created by Springbok.  They can be ordered here.

 

Max Wallack is a student at Boston University.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Philips Healthcare Donate Puzzles

By Max Wallack

Puzzles to Remember

Once again, the Philips Healthcare, Ultrasound Division has donated puzzles to PuzzlesToRemember.  They are collecting puzzles as an ongoing project to help PuzzlesToRemember provide puzzles for additional nursing facilities.  Here is a photo of the puzzles they donated yesterday:

I thank Philips Healthcare and its employees for making the lives of these patients just a little better.

Max Wallack is a student at Boston University Academy.  His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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