Tuesday's Sciene Times July 31, 2012

Two articles in Sunday’s NY Times are of interest to us as caregivers of all ages; they each discuss the reality of growing older and of dying, albeit from differing perspectives. One is part of an ongoing series in which responses to a selected letter to the editor are published along with a response from the writer and inserted weekly into the Review section of the paper. The other is a regular column in the Styles section by Bruce Feiler. Sunday’s column was titled The Father is Child of the Man, with the subtitle “Parallels between caring upward and caring downward on the family tree,” which more accurately summarizes the article.

Mr. Feiler’s mother has a few adult children who all live in different states from her. She had been caring for her husband who has Parkinson’s disease for quite a while, including through  back surgery, without, it seems, assistance from her children, until she fell and dislocated her shoulder. The children “huddled” on the telephone and Mr. Feiler was chosen to travel to Georgia where their parents live. Feiler found that his parents benefitted from his help in reviewing their expenditures as well as in finding activities that were entertaining, especially computer or reading to help keep his father’s mind active. He also learned that the person needing care often lashes out at the caregiver and that when the loved one has a distorted view of the world it is better not to confront, but rather to agree without causing more discontent.

The letter to the editor written by Dr. Janis Abrahms Spring concerns both the medical profession and adult children’s unwillingness to discuss end-of-life issues, using the example of asking a dying man if he would like a feeding tube, without adding the sentence “Without the tube, you will die.” Dr. Spring suggests many valuable reasons for this end-of-life discussion including forgiveness and reconciliation between the generations, citing that many adult children end up caring for parents for whom they have ambivalent or negative feelings.

Both articles reveal the need for continued conversations throughout life between the life partners and between generations, switching when the children become adults to sharing concerns the parents have about their own lives instead of only listening and offering advice when their children phone to ask for help. Did Mr. Feiler’s mother need help with caring for her husband before she fell and dislocated her shoulder? Do initial discussions about feeding tubes belong at the bedside of someone who is terminally ill?

Adult children need to be aware of the parents’ needs as they age, parents need to share their concerns with their children. What keeps us from sharing? Where do we lose that trust, that intimacy that prevents these important discussions?

100 Words for Sunday, July 29, 2012

As a child, when my mother was called to school for a conference, we both waited with trepidation for the outcome. What did I do wrong? we wondered. As a parent, I was pleased the teachers always began with positive statements. Now once again I am called, this time to the memory care center. Bob is eating less, he paces and he has become more agitated. Because he is using foul language and he will not cooperate with the nurse who tries to measure his blood pressure, his medications are increased. They want me to understand that he is “failing.”

I see that the blond nurse, the one who Bob was willing to trade me in for, merely a few weeks ago, is not smiling and not greeting me with hugs; she has serious information to impart and I feel protective, just as I did at those parent-teacher conferences, ready to make excuses in my head for my children's shortcomings. Bob may be agitated because some residents are coming into his room uninvited. He may not like the food he is served as he eats when we take him to The Village Inn.
But really, he eats less when we are out also; he doesn't eat or ask for snacks as often as he did. Am I deluding myself that he is "holding his own," that he is "doing as well as can be expected" as I say to friends who ask? Does my husband "put on" good behavior when Steve or I visit, because he knows we will take him out for a while?How do I know? Does it matter? We provide pleaseant moments for Bob in an otherwise blank existence. Tomorrow is is 83rd birthday. Today we will go to an Italian restaurant and see if he'll eat pastafagioli or spaghetti marinara which he always like "before."

Wednesday, July 25, 2012 A new food product

Do you know someone with very mild or mild Alzheimer's disease symptoms? Here's a food product that that has worked to improve memory in this group. Offer this message to anyone you know in this category. The  problem is, of course, that most family members are so in denial of this dreaded disease that they don't or won't recognize mild symptoms as a disease and by the time they do, the food product made by Dannon which is owned by Nestle, will no longer be effective. That's what this blog is for. Be prepared better than I was when Alzheimer's disease descended upon my husband.
July 23, 2012 (Vancouver, British Columbia) — Administration of a medical food designed to improve synaptic dysfunction is associated with continuous memory improvement in patients with mild Alzheimer's disease (AD), new research shows.
Presented here at the Alzheimer's Association International Conference (AAIC) 2012, results from an open-label extension (OLE) trial of a medical nutrition product (Souvenaid, Nutricia/Danone) showed that memory performance continued to improve in drug-naïve patients with mild AD for up to 48 weeks.
These latest OLE results immediately follow those of the double-blind, randomized controlled Souvenir II study, published in the July issue of the Journal of Alzheimer's Disease, which showed significant improvement in memory performance compared with placebo over 24 weeks.
As presented by Philip Scheltens, MD, PhD, professor of cognitive neurology and director of the Alzheimer Center at the VU University Medical Center in Amsterdam, the Netherlands, the results from the 24-week OLE study "were exactly what we hoped for."

Dr. Philip Scheltens

At 48 weeks, memory of participants in the group randomly assigned to receive active treatment and who continued to receive Souvenaid in the OLE part of the study improved even further.
"There was no ceiling effect," he said.
Furthermore, study participants who were in the placebo group in the randomized controlled period of the trial and who were switched to the active treatment in the OLE study also experienced significant memory improvement.
"The bottom line is that we have now conducted 2 large studies with this medical food that aims to restore the function of synapses in mild to very mild Alzheimer's disease and have proven that it improves memory," Dr. Scheltens told Medscape Medical News.
He added that the findings also show that Souvenaid is "very safe and well tolerated" and confirm the results of the Souvenir I trial, the very first proof of concept study, which was published in the journal Alzheimer's & Dementia and reported byMedscape Medical News at that time

Science news Tuesday, July 24,2012

This is scary news. How many caregivers have planned for their own long term care?

Los Angeles, CA, July 21, 2012 --(PR.com)-- Slightly over one in four nursing home claims paid for by long term care insurance are the result of Alzheimer’s disease according to a report issued today.

According to the Alzheimer’s Association some 5.4 million Americans are living with the disease and one in eight older Americans has the disease. "Americans will pay an estimated $200 billion for care received by individuals with Alzheimer’s," explains Jesse Slome, executive director of the American Association for Long-Term Care Insurance. “Insurance is increasingly being used to pay for care and Alzheimer’s is the top cause of claims for those in nursing homes. Last year long term care insurers paid out $6.6 billion in claims to over 200,000 Americans.”

Data from the Alzheimer’s Association notes that Medicare and Medicaid pay for about $140 billion of the costs and project that costs are expected to grow to a projected $1.1 trillion in today’s dollars by 2050. Their website notes the dramatic rise includes a 500 percent increase in combined Medicare and Medicaid spending.

“The rate of spending is unsustainable,” declares Slome. “We explain to individuals that if they are concerned about the future ability of federal and state government programs to pay for costs, that they need to do some personal planning, including look at long term care insurance as a way to avoid dependence on whatever meager programs will exist at the point in time they need care.”

Alzheimer’s ranks as the sixth-leading cause of death in the United States. It is the only condition among the top-10 killers that can not be prevented, cured or even slowed.

“Frankly, I believe the future is scary in terms of how a nation will deal with the tens of millions of aging Baby Boomers who will live into their 80s and 90s the age when Alzheimer’s is most likely to occur,” Slome adds. “Most individuals have not given this any thought let alone done any preparation. It is the equivalent of failing to arrive at retirement age without a plan in place, you place your future into the hands of others.”

According to the Association’s national cost of care study, one year in a nursing home costs $85,045 for a private room and $76,285 for a semi-private room. “That’s the cost today but it’s only going to grow each year,” Slome concludes. “A failure to plan is definitely a plan for failure.”

For additional information on long term care insurance consult with your local long term care insurance specialist or to find one serving your state call the Association at (818) 597-3227 or visit their website www.aaltci.org for access to a variety of free online consumer information guides

100 Words for Sunday, July 22, 2012 -My Rights

The Caregiver’s Rights from the American Heart Association have circulated for some time, but they bear repeating as it is so hard to remember oneself as we struggle to care for others, whether ill spouses or aging parents or adult children who are okay on their own without parental advice or consent. When do our rights interfere with the rights of others to make their own choices where they can? When can asserting our rights protect us from well-meaning others who seek to control us? Where is the line between caring and apathy, between love and obligation? I struggle daily.

I have the right to take care of myself. This is not an act of selfishness. It will enable me to take better care of others.
I have the right to seek help from others even if my loved one may object.
I have the right to maintain facets of my own life that do not include the person that I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person and I have the right to do some things for myself.
I have the right to feel angry, be depressed and express other difficult emotions, occasionally.
I have the right to reject any attempt by my loved one (either consciously or unconsciously) to manipulate me through guilt, anger or depression.
I have the right to receive consideration, affection, forgiveness and acceptance from my loved one as long as I offer these qualities in return.
I have the right to take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one.
I have the right to protect my individuality and make a life for myself that will sustain me when my loved one no longer needs my full-time help.
I have the right to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

Science News Friday, July 20, 2012

We are always interested in ascertaining what stage of the disease our loved ones are currently in, how long they have been living with the disease and how fast it will progress. Here's some news reported by   Bob DeMarco in the Alzheimer's Reading room.

Timeline of Alzheimer's Disease

The timeline, developed through research led by scientists at Washington University School of Medicine in St. Louis, appears July 11 in The New England Journal of Medicine
The findings taken from studies with people who have a family history of dementia reveal the dramatic timeline of Alzheimer's disease:

• 25 years before severe dementia, beta-amyloid protein levels in the spinal fluid begin to drop, suggesting that amyloid has begun to accumulate in the brain.
• 15 years before severe dementia, beta-amyloid can be detected in the brain. As this does not seem to occur in people without Alzheimer's, it may be the earliest sure sign of the disease.
• 15 years before severe dementia, tau protein begins to accumulate in the spinal fluid. Many researchers believe that tau is more important than amyloid in Alzheimer's disease.
• 15 years before severe dementia, the brain begins to shrink.
• 10 years before severe dementia, brain metabolism slows down.
• 10 years before severe dementia, episodic memory is impaired. Episodic memories are like snapshots or video footage of a person's experience.
• 5 years before severe dementia, cognitive impairment sets in.

Science News Tuesday July 17, 2012

There's a conference being held this week in Vancouver of the International Alzheimer's Association . One paper has focused on sleep and suggests we get no more or less than seven hours of sleep during any 24, whether long stretches at night or by napping if we want to keep our minds from declining. So wake up, couch potatoes and do something active, like answering emails, reading my blog or figuring out a puzzle.
In the beginning stage of my husband's illness he slept 14-16 hours each day which made me believe he was depressed, but then he was awake more and his anxiety increased. Now six years later, my husband takes only one short nap in the afternoon and he sleeps 6-7 hours each night. Perfect, with very reduced anxiety, but unfortunately his disease progresses anyway.
He still remembers to ask me to take him to the store so he can see tools; he even bought a set of chisels on Sunday, but he placed them in the back of the car and then totally forgot they were there.

100 Words for Sunday, July 15, 2012

I understand; my life is surrounded by Alzheimer’s disease, from the memory care center to the groups I lead and attend, to the stories that inevitably come my way. But I also meet the disease in films I attend unknowingly like Separation and today in a book chosen at random from the literary fiction section at the Half-Price Book Store. Beginning with ‘A’, I find a missed Allende novel and a trilogy by Marge Anton, based on the lives of each of Rashi’s daughters. Why does the author describe the grandmother in the eleventh century with symptoms of Alzheimer’s disease?

There is much excitement in the scientific community this week due to the discovery that there is a gene that causes Alzheimer's disease by building up a protein that forms beta amyloid in the brain. They also found a protective gene mutation, which in some people protects them from ever getting the disease.The discovery of the protective gene mutation, a product of the revolution that has taken place in genetics, arose when researchers scanned the entire DNA of 1,795 people who live in Iceland.

. .  About 1 in 100 had a mutation in the gene for a large protein that is sliced to form beta amyloid. Then the investigators studied Icelanders who had been given an Alzheimer’s diagnosis, and compared their DNA with a control group of people 85 and older. Those with the mutation appeared to be protected from Alzheimer’s disease.
Many questions remain, of course.Most people do not have the protective gene mutation, but as common as Alzheimer’s is, most people do not get it. It is not clear why. And most who develop Alzheimer’s do not have one of the rare gene mutations that cause it. The reasons for their disease are unclear.

The investigators, led by Dr. Kari Stefansson, chief executive at DeCode Genetics, an Icelandic company, looked at genomes of North Americans and found the gene mutation in only about 1 in 10,000 people. That indicates, Dr. Stefansson said, that the mutation arose relatively recently in Scandinavia. "Recently" in genetic mutation time is still a long, long time ago.
And the scientists have a long, long way to go too, but it is good to see they are working on it and are not concentrating on one idea only, but testing several hypotheses. Most middle aged people are concerned about developing Alzheimer's themselves, but  the research is also showing that preventive measures may have to be taken in youth.

Tuesday's Science Times July 10, 2012

A clinical trial conducted in Europe has found that a nutrient mixture developed at the Massachusetts Institute of Technology (MIT) has the potential to improve memory in early-stage Alzheimer’s patients.
Alzheimer’s patients generally lose the synapses, or connections, between neurons in their brains. The supplement mixture seems to promote the growth of new ones.

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Developed by Richard Wurtman, professor emeritus of brain and cognitive sciences at MIT, the mixture is made up of three naturally occurring compounds: choline, uridine, and DHA, an omega-3 fatty acid. Choline is found in meats, nuts, and eggs; uridine is produced by the liver and kidney, and can be obtained from foods through RNA; and omega-3 fatty acids are located in a variety of foods including fish, eggs, and flaxseed. In order to be effective at promoting new synapses, all three nutrients need to be taken together.
The current study's findings confirm and expand on a previous study conducted on the matter.
The study included 259 people with early Alzheimer’s disease, with participants taking either the nutrient mixture or a control drink. It was the second study conducted on the mixture; the first took place in 2008, and studied 225 participants with mild Alzheimer’s over the course of three months. Both were led by Philip Scheltens, director of the Alzheimer Center at VU University Medical Center in Amsterdam. That 2008 study found that 40 percent of patients who took the nutrient mixture improved in a test of verbal memory; 24 percent of patients who received the control drink improved.

First the first three months of the latest study, both participants with the mixture and with the placebo showed improvement. But after three months, the patients who were receiving the placebo deteriorated, while participants who received the nutrient mixture continued to improve.
The trial is exciting because few studies have produced consistent improvement with Alzheimer’s disease. With memory loss being the most obvious and known symptom of Alzheimer’s, it makes sense that it has been the focus for many scientists.
It remains unclear as to when the drug, called Souvenaid, will be released, but by all indications, it will appear on shelves in Europe first. It is being produced by Danone, known in the United States as Dannon.
The results of the trial have been published in the Journal of Alzheimer’s Disease.

Published by Medicaldaily.com

(2) 100 word stories for Sunday, July 8, 2012

I feel so differently this birthday; many folks I hear about or have met are dying and most are younger than I. The feeling is similar to how I felt after my mother died and I became the oldest member of my family. The feeling is internal; this pedestal holds no monument as elder and exerts little influence over anyone. It hides a deep loneliness in not having an older relative to look up to, to ask for an opinion, even if it were to see what the older person thought so I felt justified in choosing my own way.

 I feel grateful to be alive and healthy at seventy-four, having climbed a mountain that many do not reach whole. The feeling is one of pride and humility mixed, as not only genetics, but conscious effort on my mother’s part to nurture me well and my own lifestyle choices, plus a dose of random chance have brought me here. The older generation’s superstitions leave me a bit fearful writing these words. What if I don’t fear the evil eye? (tuy, tuy) When I tore the red ribbon from my hair, said my mother, I caught the measles and became amblyopic.

Happy Fourth of July

It is 6:15 a.m. on the Fourth of July in Mesa, AZ where my smartphone tells me also that it is 80 degrees outside with light rain. I see no sign of precipitation as I head out for my walk, protected by a light layer of grey cloud. By 7 I turn to head back home as a jack rabbit scurries across my path. A neighbor has warned me of rattlesnake sightings so I am watchful. What I feel instead is a drop of water on my arm. I check my water bottle for a leak. But no, another drop falls and another. I stretch my arms out to capture as many drops as I can. As I cross the street the three drivers of the cars that pass have not turned on their windshield wipers; not even that much energy needs to be expended, but the drivers know that later, each drop will leave its mark with a small circle of dust on the surface of the car.

The trip to the dentist went well yesterday, with Bob cooperating with the hygienist who provided a letter to remind the staff at the memory care center to brush Bob's teeth as his gums are tender and bleed easily, but he has no visible cavities. Immediately as we left the office, Bob decided he wanted to see some tools, so this time we went to a Sears store in the mall, entering directly by the huge ride-on lawn mowers and all of the bright red Craftsman tool displays. "I am overwhelmed," Bob exclaimed.
Steve steered Bob to the large wrenches and long screw drivers where there were several new non-electric handtools which had a "try me" tag. They explored happily for more than 30 minutes before Bob said he needed a restroom.
After spending another hour walking in the mall for exercise and sitting in the food court people watching, Bob had enough. Walking to the car was tiring and confusing as there are so many sources of stimulation and For Sale signs for Bob to ponder. He noted that the clothing "was all for children." When we returned to Sears to leave by the same entrance through which we arrived, we spent another 15 minutes in the tool aisle as Bob did not remember having been there before.

Science news July 2, 2012

Folks often ask me why we take my husband Bob out of his memory care center on trips to Wal-Mart or Home Depot or to the Airplane Museum since he doesn't remember going there and it is sometimes a hassle. This article quoted from the New York Times Well section today demonstrates my point.

"The prevailing view of people with Alzheimer’s is often a depressing one: the patient slumped in a chair or parked in front of a television set. But a new book and photo exhibition this month in New York show another side of the disease, one in which people with dementia can still be engaged, lead active lives and experience love and joy.
The book, “Love, Loss and Laughter: Seeing Alzheimer’s Differently,” was written by Cathy Greenblat, a professor emerita of sociology at Rutgers University who found a second career as a photographer. The exhibition has toured the world and is currently on display at the Michael Schimmel Center for the Arts at Pace University in Manhattan.
“I wanted to show what many people don’t know about Alzheimer’s,” Ms. Greenblat said, “that there are ways we can take care of people that build on their remaining capacities instead of just protecting them from danger.”

“These photos are meant to challenge the way we think about Alzheimer’s,” said Ms. Greenblat, whose project was inspired in part by personal experience. Both of her maternal grandparents developed Alzheimer’s in their later years, as did her mother. “People look at some of these photos and say, ‘Oh, this person can’t have Alzheimer’s.’ But they don’t realize that they have a range of emotions. People don’t imagine that someone with Alzheimer’s can be smiling or happy and having a good time.”
In Wal-Mart last week Bob enjoyed looking in the different mirrors with me; he smiled, recognizing us both together. Yesterday we colored, built with blocks and went out for ice cream sodas. Today we are going to the dentist. I have to think up something to do afterward.

 

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100 words for Sunday, July 1, 2012

The color of the desert in early summer ranges from pink to purple as the various agaves send out their tall stems and blossoms to capture the attention of the birds, the jacaranda trees bloom and the prickly pear cactus fruit ripens. A cloudy morning permitted me, the jack rabbits, bunnies and geckos to come out from our shelters for a long walk or a scamper. It is surprisingly quiet in Mesa as not only the winter visitors, but many neighbors as well, flee to the cooler climates of Prescott, Payson or Flagstaff,  Arizona where they own homes or cabins.

Five members of the Arbor Rose Caregiver Support Group attended a memorial service yesterday for another member's husband who passed away on June 5th. The service, led lovingly by the chaplain of the East Valley Hospice was a celebration of Larry's life, shared by his mother, his siblings, his children and six grandchildren who travelled from Idaho, Iowa and North Carolina. Tears were shed, mostly by the children who miss their grandpa, but his wife shared  that she had been losing her husband of 46 years to Alzheimer's disease for the past few years and has been mourning his loss each time his illness progressed. Now the end is more of a blessing, a relief from the worries and the pain of this devastating illness.
Another member of our support group who is a pastry chef baked a tableful of delicious chocolate confections for the event, as Pat revealed how much her husband Larry loved chocolate. John could not be present himself as he cares for his mother full-time and she can only attend the Arbor Rose Day Club on weekdays.