We are what we write

Researchers at the University of Toronto have been analyzing the works of prolific authors (PD James, Agatha Chrisite and Iris Murdoch ) over their years of writing.

Neuro-cognitive literary theory, a part of computational linguistics seeks to discover and analyize the changing language of these authors over their life time body of work. Scanning in the first 50,000 words of each book and graphing the amount of vocabulary decline, the increase of repetition and the increased occurance of vague terms.

Murdock had been diagnosed with Alzheimers at 74.  With Chrisite the professors found that Elephants Can Remember "represents a staggering 31 per cent drop in vocabulary compared to Destination Unknown, written 18 years earlier, when Christie was 63. Repetitions also increased, and the use of "thing" words was four times as frequent in her final book as in her first". She was never diagnosed.

P.D. James, is still writing at the age of 89. "James's linguistic prowess turns out to be undiminished, providing a sort of one-woman control group of the healthy aged. Her vocabulary also turns out to be much more extensive than either of the two other writers'."

Writing samples kept over 10 years or more may offer a glimpse into our mental processes.  So keep those memos, e-mails, blogs and letters.

http://www.thestar.com/news/insight/article/754723--an-agatha-christie-mystery-is-alzheimer-s-on-the-page

Alzheimer’s in Haiti

from  http://www.thelastofhismind.com/wordpress/?p=679   by John Thorndike 

on January 19th, 2010 

The Last of His Mind: A Year in The Shadow of Alzheimer’s

With this disaster in Haiti there must be elderly Alzheimer’s patients in Port-au-Prince and other towns who somehow survived the earthquake that killed their caregivers. If they haven’t died already, they could be wandering around not knowing who they are, not remembering where they live, or how to eat, or where to lie down at night to sleep. Some would be as helpless as infants—only they don’t look like infants. In a country where the most able-bodied are having a hard time getting food and water and medical care, those with dementia must be at extreme risk.


We don’t hear much about dementia in third-world countries. The U.S. has about five million Alzheimer’s patients now, with 30 million in the rest of the world. We have more than our share percentage-wise, in part because we have better reporting of medical statistics, and in part because we live longer. Long life is now that double-edged sword: the longer we live, the more likely our brains are apt to go before our bodies.
Our education about Alzheimer’s is better. We don’t call it “senility,” as we once did, and we don’t call it “tired brain,” as they do in India. There’s a near-constant outcry about the need for better medications in the U.S., for better patient care, for more help for caregivers as they look after the afflicted at home. But what did Alzheimer’s care look like in Haiti a month ago? There couldn’t have been much help from the state—and today there must be none.
Caring for my father as Alzheimer’s took him down has set up a kind of filter for me—rather like the years I spent raising my son. I became a father, I joined the vast community of parents, and now I have joined the community of those who have looked after the elderly and those with dementia. In the case of Haiti, my mind jumps to those who are lost in the midst of chaos, who could make little sense of anything even if they were still ambulatory. Infants and those in the deep reaches of Alzheimer’s are especially vulnerable populations—and on the streets of Port-au-Prince, the latter must be almost invisible.

Help for Haiti

If you're looking for a great organization to donate to, please consider 
Paul Farmer's organization, Partners in Health (PIH).
http://www.standwithhaiti.org/haiti  -or- www.pih.org/

I donated personally {after doing my due diligence}.

The PIH Vision: Whatever it takes At its root, our mission is both medical and moral.  It is based on solidarity, rather than charity alone.  When a person in Peru, or Siberia, or rural Haiti falls ill,  PIH uses all of the means at our disposal to make them well —from pressuring drug manufacturers, to lobbying policy makers, to providing medical care  and social services.  Whatever it takes.  Just as we would do if a member of our own family —or we ourselves—were ill.

Talking About Alzheimer's

Many physicians fear that revealing a diagnosis of dementia would only further upset an already troubled patient, but a study from Washington University in St. Louis found quite the opposite. When it comes to a diagnosis of Alzheimer's disease, knowing the truth as soon as possible appears to be the better approach, potentially improving the emotional wellbeing of both patients and their caregivers, the researchers report.

Medical advances have made it possible to diagnose Alzheimer's at very early stages, but a study published in the Journal of the American Geriatrics Society found that about half of all physicians were reluctant to inform patients of an Alzheimer's diagnosis.

The study followed 90 individuals and their caregivers as they came to the Alzheimer's Disease Research Center at Washington University's School of Medicine for an evaluation. Sixty nine percent eventually got a diagnosis of Alzheimer's disease, but no significant changes in depression were noted and anxiety decreased substantially.

"The major finding is that both patients and their families feel relief, not increased anxiety, upon learning the diagnosis," says study co-author John C. Morris, M.D., Director of the Alzheimer's Disease Research Center. This was true regardless of the degree of impairment.

"Nobody wants to hear the diagnosis of Alzheimer's disease, but even that is preferable to recognizing there's a problem and not knowing what it is. At least having the diagnosis allows people to make plans for the future, including treatment as appropriate." One reason an Alzheimer's diagnosis can be comforting to both family members and patients, suggests Carpenter, is that it provides an explanation for what's been going on with the patient. Caregivers, he says, are often quick to attribute symptoms of dementia to the person, rather than the disease, and patients wonder if they are going "crazy."

Bottom line: Knowledge is power, and earlier diagnoses allow for earlier interventions to delay the effects of Alzheimer's and dementia. Medications currently on the market can slightly delay symptoms in some patients and may delay institutionalization. Perhaps more importantly, providing a diagnosis as early as possible gives people a chance to prepare for what is coming. "They know that things are going to get worse rather than better, and they know that there's going to come a time when they're not going to be able to do the things they can do now," says Carpenter. "They can get ready for what's coming, and we can connect them to support services. We can get their family ready, so they'll be better prepared."

http://www.johnshopkinshealthalerts.com/alerts/memory/JohnsHopkinsMemoryHealthAlert_3285-1.html?ET=johnshopkins_blog:e33849:701560a:&st=email&st=email&s=EMH_091123_005

November is NATIONAL FAMILY CAREGIVER'S MONTH

NATIONAL FAMILY CAREGIVER'S MONTH  is designated as a time every year to thank, support, educate and empower family caregivers. "This year we are encouraging people to speak up during National Family Caregivers Month." said Suzanne Mintz, NFCA president and CEO. "One of the most important attributes on being an advocate for your loved one is the willingness and the ability to speak up and keep your eye on the ultimate goal, protecting not only the health and safety of your loved ones but for yourself as well."

More than 50 million people, provide care for a chronically ill, disabled or aged family member or friend during any given year.

Informal caregiving is the foundation of America’s long-term care system. Each day, in every State and community, family members, friends and neighbors provide extraordinary levels of assistance to persons of all ages with chronic illnesses and disabilities. Caregivers manage tasks ranging from assisting with basic personal care and homemaking to carrying out more complex health-related interventions.

Unpaid caregivers may be found in every community. They come from every walk of life. They contribute an  estimated economic value of about $350 billion each year.

They are male and female, young and old, and may or may not possess adequate financial resources to meet their own daily needs or the needs of those for whom they care.

Through the Looking Glass with Alzheimer's

Life goes on for the caregiver and sufferer through the looking glass.

The dread diagnosis of Alzheimer’s does not mean your life is over. You can still live a happy life, but you will need to make  changes and accept that  some things will be more difficult and very different.

• Try to live a healthy lifestyle with a balanced diet, excersize, and getting enough sleep. This will help your brains to function at their best.

• Look after your emotional well-being by seeing friends and family, a counselor, joining a support group, or starting a journal or blog.

• Both of you will experience a range of  thoughts and emotions as you come to terms with the diagnosis - denial, anger, frustration, depression. It's  important to acknowledge and deal with these emotions.
  

• Speak with your friends and family and neighbors and let them know how they can help. Keep them informed as things progress.  Set up some form of respite.
  

• Try to keep doing activities that you enjoy and make adjustments to changing abilities.  It can help to stick to a predictable routine. Create easy to follow systems.

• Hold on to some sense of humor.
  

Maine's Dirigo Choice Experimental Health Insurance Plan

Maine requires community rating ( all the insured pay the same premium for the same insurance coverage under each policy choice ) and no discimination due to pre existing conditions.  This has driven insurance companies out of the Maine market and increased premiums by those few insurer's willing to cover Maine citizens.

In an attempt to improve the situation the legislature enacted Dirigo Choice which was designed to provide access and subsidies, particularly for small business, the self employed and individuals without any coverage. Due to the instability of the funding mechanism the program has been closed for two years to new subscribers. It is currently managed by Harvard-Pilgrim (a non-profit). The rising costs of medical care have driven up the monthly premiums and increased the amounts to be paid out of pocket.
As members drop out due to age, attrition, inability to pay premiums or return to covered employment, the number of covered members is declining. For those without other healthcare insurance options Dirigo has been a lifesaver.  In the early days of Dirigo Health many potential members were not able to pay the full upfront premium and then wait to be reimbursed for their subsidy amount later.  That system has since been corrected.

As we look at expanding health insurance coverage to more Americans much can be learned by looking at the states that have tried to do just that.
We know that Senators Collins and Snowe will give thoughtful consideration to the plans being formulated in Washington and will throw a life ring to those who need the help of a public option.
Harvard Pilgrim                         Dirigo Health - Maine People's Alliance

Keeping Current with the Science of the Brain and Dementia

~ Alzheimer's Disease Cooperative Study  ~  
From the National Institute on Aging (NIA)
and the University of California at San Diego (UCSD)

This study addresses treatments for both cognitive and behavioral symptoms.  The information can be a bit technical but keeps us informed about recent research into Alzheimer's. You can join the Information Network by going to  http://www.adcs.org/Research/registry.aspx and sign up for their monthly newsletter.

Another useful site is The Alzheimer's Disease Education and Referral (ADEAR) Center Web site will help you find current, comprehensive Alzheimer's disease (AD) information and resources from the National Institute on Aging (NIA).
http://www.nia.nih.gov/Alzheimers/

An Informal Mental State Exam can help record strengths and areas of concern in Alzheimer's

In your role as a caregiver, companion and observer you may want to utilize from time to time a standardized method of evaluation. Although the Mini Mental State Exam and its scoring guidelines are useful, the MMSE shouldn't be used independently to make a diagnosis. Only trained clinicians -- such as physicians, nurses, and psychologists -- should give and score the MMSE.  A diagnosis of Alzheimer's can only be made after a complete diagnostic workup rules out any other possible cause for the person's symptoms.

Caregivers may find it useful to observe the progression of Alzheimer's and to flag areas of concern to address with the physician.  Another older useful test is the Blessed Test.

MMSE - Mini Mental State Exam
The clinician asks the person the following questions:
Orientation
What is the year?                 What is the season?
What is the date?                  What is the day?
What is the month?              What state are we in?
What county are we in?        What town are we in?
What room are we in?           What floor are we on?

Short-Term Memory (Retention)
The clinician names three objects (for example, apple, table, and hat) and asks the person to repeat the three words all at once. If the person can't do this correctly, the clinician can repeat the words until the person learns them (a maximum of six tries is permitted).

Attention
The person is asked to count backwards from 100 by 7s, or to spell the word “world” backwards.

Short-Term Memory (Recall)
The person is asked to repeat the three objects named earlier (apple, table, and hat).
Language

The assessment of language
First, the clinician holds up a pencil and a watch (separately) and asks the person to name the objects.
Second, the person is asked to repeat the phrase, "No ifs, ands, or buts."
Third, the person is asked to follow a three-stage command (Take this paper in your right hand, fold it in half, and hand it back to me.).
Fourth, the person is given a piece of paper with the command "Close your eyes" written on it and is asked to do what the paper says.
Fifth, the person is asked to write a spontaneous sentence.
Sixth, the person is asked to copy a simple design.

Scoring
24 – 30: "normal" range
20 – 23: mild cognitive impairment or possible early-stage/mild Alzheimer's disease
10 – 19: middle-stage/moderate Alzheimer's disease
0 – 9: late-stage/severe Alzheimer's disease

Dealing with Medications - oh those blister packs

For some reason one of Gordon's medications arrived in blister packs instead of the usual Rx bottle.  After first checking that it was the correct pharmaceutical and dosage the next task was to get the packs open.  Not so easy !  After trying various implements I made the discovery that if you separate the units down the middle along the dotted line you can fairly easily peel off the paper label and get the pills out.  I put them in the old bottle relabeled with the new Rx information.

You also have the right to request non childproof snap caps on your medication vials.  Of course all meds must be secured from unauthorized fingers, be they young or old.

Cleaning out our meds is one of the tasks we do at the seasonal time change.  Old, out of date bottles should be discarded or recycled and any left over drugs disposed of safely. Maine offers a safe disposal program with cooperating pharmacies that provide stamped envelopes so customers can send in unused, unwanted prescriptions to be destroyed. It's part of a first-of-its-kind program to keep drugs from being tossed out or flushed down the toilet and getting into the environment.    www.safemeddisposal.com

Save Your Brain - Eat Those Yellow Curries

Curcumin     {Botanical name: Curcuma longa; Family: Zingiberaceae, the ginger family} 

is the source of the spice Turmeric and is used in curries and other spicy dishes from India, Asia and the Middle East. Similar to many other herbal remedies, people first used curcumin as a food and later discovered that it also had impressive medicinal qualities.
Turmeric has been used historically as a component of Indian Ayurvedic medicine. It is an anti-oxidant and anti-inflammatory. The rhizome  is cooked and ground to produce the spice.

Researchers at the Jackson Lab in Bar Harbor observed that systemic treatment of mice with curcumin significantly reduces amyloid-ß plaques and actually reversed structural changes within the brain. Curcumin offers a promising new approach for clinical research into treating and perhaps ultimately preventing Alzheimer’s disease in humans.

Alzheimer’s disease is one of many diseases that are called neurodegenerative diseases—they involve dysfunction or death of brain tissue.  A diet rich in turmeric may help prevent or reverse brain damage in Alzheimer's.  Seems worth a try.
More recent studies showed that combining curcumin with vitamin D3 enhaces it's efficacy.

Citation :

Mishra S, Palanivelu K. The effect of curcumin (turmeric) on Alzheimer's disease: An overview. Annals Indian Academy Neurology .   Read more - - -

America’s Healthy Future Act of 2009

In the current version of the Finance Committee's Chairman's Mark there is no mention of Alzheimer's and only two of dementia. 

1. It would establish within the Centers for Medicaid and Medicare Services (CMS) a program to test and evaluate patient-centered delivery and payment models. The Center would consider models that target beneficiaries with multiple chronic conditions and at least one of the following: (1) an inability to perform 2 or more activities of daily living; and (2) a cognitive impairment, including dementia.

2. Dementia and Abuse Prevention Training. The Chairman‘s Mark would add staff training requirements for nursing homes. The Secretary would revise initial nurse aide training, competency, and evaluation program requirements to include dementia management training and patient abuse prevention.

The Finance committee will vote on the bill this coming week. The draft will have to be merged with other committee's efforts before going to a full Senate vote later this month. Later it would be off to conference with the House version.

Full text of the bill >>>


http://finance.senate.gov/sitepages/leg/LEG%202009/091609%20Americas_Healthy_Future_Act.pdf

Caps and Belts and Bolo Ties

Every morning as we go through the lengthy ritual of dressing for the day Gordon always seeks out his Greek Fisherman's cap, his belt and wallet, and bolo tie.  He's not able to thread his belt through the belt loops of his pants and so wears it outside around his waist.  His cap stays on all day (except for the dinner table). The bolo tie goes on under or over his shirt and his wallet must go in his pocket.  These are comforting supports - almost talismans - to help his feeling of security and proper place in the world.  It's very unsettling to him if any of these articles are forgotten.  Dressing etiquette has been condiderably relaxed in the interest of  pride and confidence.

Alzheimer's and the Great Outdoors

We've been watching Ken Burn's PBS series on America's National Parks and are lucky enough to often visit the nearby Schoodic Section of Acadia National Park.  As the haze of dementia progresses we find that the lessening of outdoor activities decreases our quality of life and wonderment.

On the occassions that get us moving outdoors we realize how beneficial a natural outdoor session can be in promoting positive changes to our physical and emotional well-being.  Exercise, fresh air and the opportunity for informal encounters with the flora and fauna, and other people promote self-esteem and trigger memories.

Whether it's hiking in the Park or working in the garden, the feeling of sun and wind - even fog and rain- is enlivening.

Things to plan for on your outing >>>

• safe walking - paths that are wide, flat, even and slip resisitant
• walking sticks
• choices of sun or shade
• choices of wind or in the lee
• places to sit and rest
• familiar, reassuring companion
• sunscreen
• drinks and snacks
• flexible time frames

So let's get out there and help maintain residual skills.

The Question of Universal Coverage

Here we are now, with Alzheimer's, Medicare and no insurance coverage for needed services - aides and attendants, case managers and social workers , physical therapists and community centers and nursing homes.

To be effective insurance has to include a very large group. Health insurance doesn't work the way other types of insurance do. We know in advance which members are more likely to need care . The young ones and the old ones and those with existing conditions. These groups are often the least able to pay and so an imbalance between needs and resources is created . Since insurance companies know this they tend to exclude or over price their policies in an attempt to cover only that population with a low risk of filing claims. That is their business model.

As Congress wrestles with the appropriate role of government in the protection of it's citizens we hope they will consider home and long term care coverage. With an aging population and increases in dementia and Alzheimer's cases this is a growing problem for sufferers and caregivers who right now have to muddle through on their own.

With thanks to > > > http://www.metaphorcountry.com/dementia_nights/2009/03/healthcare-reform-notes-i-alzheimers-universal-coverage-longterm-care-1.html

World Alzheimer's Day is Today and Everyday

Monday September 21st, 2009 is WORLD ALZHEIMER'S DAY designed to raise awareness of the 35 million ( and growing) people who live within the shadow of this dread disease.

As citizens and caregivers of the world let us strive to provide each day .....

Adequate nutrition
Engagement in activities based on individual ability
Good hygienic practices
Free expression of thoughts and beliefs
Social interaction with family members, peers and others

Read further at > > >
http://www.actionalz.org/about_wad.asp

http://www.alz.org/national/documents/report_summary_2009worldalzheimerreport.pdf

Laundry Day is Every Day

Everyday is laundry day here. We find it easier to manage small daily loads of wash and there is always soiled clothing. You may have to help sort the dirty clothing from the clean as they sometimes get mixed up. The goal is to ensure clean comfortable clothing is worn every day.

• Check all those pockets
• Fasten zippers - you can make them easier to zip with a zipper lubricant or soap
  
• Use your favorite stain remover
• Sew on missing buttons
• If you are washing a small load, use the appropriate water-level setting.
• Don't over-dry your clothes. If your machine has a moisture sensor, use it.
• Clean the lint filter in the dryer after every load to improve air circulation.
• Use the cool-down cycle to allow the clothes to finish drying with the residual heat in the dryer.
• Put tennis balls or dryer balls in the dryer - they help separate clothes and dry them faster.
• Replace clean clothing in the same locations as before. You may want to reduce the number of choices.
  

Today's helpful site >>>
http://www.alzheimersathome.com/support_dressing.html

NEW Television Show on Alzheimer Caregivers

Thursday, September 24 at 8:30 and 10:30 p.m. and Sunday, September 27 at 4:30 p.m.

A new program from MPBN, Caring for the Caregiver focuses on issues facing families caring for loved ones with Alzheimer’s disease and dementia. The scourge of these illnesses is an acute source of concern not just for patients, but also those suddenly thrust into the role of primary caregiver for an aging spouse, parent or grandparent. The program, which was developed in partnership with the Maine Alzheimer’s Association, is hosted by MPBN radio’s Suzanne Nance. Weaving interviews with health experts caring for Alzheimer’s patients with the personal experiences of Mainers who have suddenly found themselves dealing with the gradual, painful loss of a loved one, the program is designed for anyone who is now or who may one day need to confront this difficult reality. It airs Thursday, September 24 at 8:30 and 10:30 p.m. and Sunday, September 27 at 4:30 p.m. and will have components on the Web at www.mpbn.net.

Also, please visit MPBN's new web page for Alzheimer caregivers at: http://www.mpbn.net/Television/LocalTelevisionPrograms/CaringfortheCaregiverDementiaandAlzheimers/tabid/1065/Default.aspx

Good Planning ... I. C. E.

Place On Your Refrigerator > > >

In case of emergency

Save time and eliminate confusion in an emergency situation -

direct paramedics to critical information.

• List of all medications, dosages and allergies
• Doctors phone numbers
• Emergency contact numbers
• Notation that there is a person with Alzheimer's in the household who should not be left alone ....and whom to call for their assistance
• Number of pets and whom to call for their care
• Attach your red envelope with a magnet and mark it

IN CASE OF EMERGENCY

Red, White or Blue Tableware???

Studies have shown that Alzheimer patients increase food intake by 24% and liquid by 84% due to good color contrasts between their foods and tableware. Red or dark blue seem to work the best. The ability to distinguish contrast between colors is sometimes lessened in people with AD. Using tableware that offers a high contrast to the food and drink will make mealtimes go more smoothly and increase food and liquid intake. Visual impairment certainly plays a role in nutrition. Colorful table settings will make for an easier mealtime.

• set just one utensil, one plate and one cup
• avoid white place settings
  
• limit the number of foods served
  
• try a place mat or tray to define space
  
• cut up foods into bite size pieces - finger foods are good
• keep your dining table well lit
• reduce noise in the room
  
• limit conversation
• avoid extreme food temperatures - very hot or very cold
• allow plenty of uninterrupted time
• give limited verbal instructions and use physical cues
• eat together and enjoy each others company ~~~ Bon Appetit !
  

Visual contrast enhances food and liquid intake in advanced Alzheimer"s disease
Clinical Nutrition, Volume 23, Issue 4, Pages 533-538
T.Dunne, S.Neargarder, P.Cipolloni, A.Cronin-Golomb