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.
  

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 - - -

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.

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

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

Alzheimer's Shopping Tips

Shopping can be tiresome or fun for most people, but for those with AD it can become a worrisome situation full of fear and confusion.
Stores can be noisy, crowded and filled with audio and visual over stimulation. Tiredness can develop and have a negative impact on memory.

Schedule wisely. Determine the time of day when your loved one is most calm and agreeable. Established routines help make the day more predictable and less confusing.
Take more time. Expect things to take longer than they used to. Schedule more time to complete even simple tasks so that you don't need to hurry your loved one. Provide instructions one step at a time.

• Shop on off times days and hours when stores are not so busy

• Have your companion push the shopping cart - gives him something to hold on to and reduces separation anxiety.

• Wear bright, distinctive clothing to help track both your movements.

• Find a visible bench for him to rest on while you wait in the check out line.

• Involve him in decision making - "would you like apples or bananas".

• Try to make shopping trips something to look forward too - perhaps include a "lunch date"?

• The smaller the store, the better !

• Plan the trip to include stops at a very limited number of shops.

• Stay together - no more "I'll meet you in Aisle 4 near the coffee grinder".

• Do not leave your companion alone in the car to wait for you.

"Often I ask myself, What's the better of two evils? To stay at home alone and suffer the worry as to why my wife is so long shopping or to go with her and suffer all the added confusion and anxiety of the day?'
My family think they are being kind because they always get my shopping for me, but I would love to go out sometimes. I get very lonely at home on my own."

Today's web tip > > >
http://www.alzheimersforum.org/site/index.php

Brain Fitness Ideas for Caregivers

Dr. Howard's Day-by-Day Brain Workout
from Pierce J. Howard, PhD at the Center for Applied Cognitive Studies

Try this brain-fitness regimen...

• Sunday: Create something in an artistic medium that you’ve never tried (such as painting with watercolors or sculpting clay)... repair or clean something that you have neglected (such as reorganizing messy files).
• Monday: Switch left-pocket contents to the right pocket... contact a high school or college friend with whom you haven’t communicated since then (or for years).
• Tuesday: Write a love poem or note to your partner, child or friend... plant something (such as orchids) that you’ve never tried to grow before.
• Wednesday: Tackle a word or number game that you do not usually do... write a thank-you note to someone who has meant a great deal to you.
• Thursday: Listen closely to music by a composer whose work you’ve never listened to and identify what you like and don’t like about the piece... or begin learning a new language.
• Friday: Write a letter to an editor or blogger about an issue that you feel strongly about... begin constructing a model of an airplane, a house or another object that you’ve never built.
• Saturday: Learn the words to a poem or song and recite and/or perform the piece at least three times for yourself and/or others... learn to do something new in a computer software program you use regularly (such as organizing messages into folders in your e-mail program).