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.
To see a short video from WCVB Ch. 5 "BOSTON STRONG" about Max's efforts on behalf of Alzheimer's patients, click here.
Thursday, December 27, 2012
By Max Wallack
Posted by Max Wallack at 7:22 PM
Wednesday, December 26, 2012
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.
- Better Memory and Neural Efficiency in Young Apolipoprotein E ε4 Carriers
- Better Episodic Memory in Young E4s
- 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
Posted by Max Wallack at 1:09 PM
Saturday, December 8, 2012
By Max Wallack
“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:
PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.
- What is the Difference Between Alzheimer’s and Dementia
- Test Your Memory for Alzheimer's (5 Best Tests)
- What is Dementia?
- Learning How to Communicate with Someone with Alzheimer's Disease
- Alzheimer's, Your Brain, and Adaptability
- Life After Dotty - Five Months Later
- Problems with Balance, Walking, Falling Can Be an Early Sign of Dementia
- >Alzheimer's Quotes
Original content the Alzheimer's Reading Room
Posted by Max Wallack at 6:37 PM