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ARTICLES RELATED TO ALZHEIMER’S DISEASE

Important Disclaimer: The opinions expressed in these articles are those of the author.

I do NOT necessarily endorse their opinions. They are listed because I think they may be of interest to some of you.

ARTICLE CATEGORIES - Links to articles are at the end of the list. If you find that one of these links is broken, please report it to joan@thealzheimerspouse.com Thank you.

News Videos

News from The International Conference on Alzheimer's Disease - Chicago - 2008

Love and Marriage

General Articles of Interest

Alzheimer Drugs and Treatments

The Alzheimer Patients Speak for Themselves

EOPAD( Early Onset Alzheimer's Disease - before age 65)

Helping Children and Teens Understand Alzheimer's Disease

Alzheimer's Disease and Driving

Alzheimer Care Resources

The Politics of Alzheimer's Disease

NEWS VIDEOS

http://donate.alz.org/site/R?i=9aWiXjDhlVhp_poyNOZPQA..CLICK HERE to view Senate Hearing with Justice Sandra Day O'Connor

NEWS FROM THE INTERNATIONAL CONFERENCE ON ALZHEIMER'S DISEASE - CHICAGO - 2008

CLICK HERE TO READ ARTICLE - New Alzheimer's drug - REMBER - shows early promise -The article discusses both Rember and the Phase II trial of bapineuzumab.

CLICK THIS LINK to the Website's Complete Update on all the news from the International Conference on Alzheimer's Disease 2008.

 

LOVE AND MARRIAGE

Coping With Disinhibited and Innapropriate Sexual Behavior- Christine Kennard

Emotional Bonds Crucial for Alzheimer's Patients - Health Talk

Alzheimer's Study: Grief Is Heaviest Burden for Caregivers by Jacquelyn Frank, Ph.D

Alzheimer Patients and Intimacy Outside of Marriage -John's Hopkins Newsletter

Intimacy, Marriage and Alzheimer's Disease by Rich O' Boyle

A New Page in O'Connor's Love Story - Justice Sandra Day O'Connor's AD husband finds a new love in his nursing home

For Alzheimer's, a New Bond isn't 'about passion' - USA Today

Is it Still Adultry if it's Alzheimer's? -by Richard Address

A Love Affair to Remember - Patricia OOsterbaan cared for her husband, Eric,for a year too long -Shelley Page - Ottawa Citizen

The Emotional Divorce by Dr. Marvin Fredman

GENERAL ARTICLES OF INTEREST

Margaret Thatcher Has Dementia - Daughter criticized for making it public

MIT Zeroes in on Alzheimer's Structures.

Chocolate is Good for Brain Health

Short Term Respite Care - A chance for caregivers to get away and relax

Signs of Alzheimer's Disease May Be Present Decades Before Diagnosis

Cognitive Problems Associated With Diabetes Duration and Severity- Newswise

Tau Is Not Cause Of Alzheimer's, It Is Effect' Note Experts At Anavex

THE FORGETTING: A Portrait of Alzheimer's-CLICK THIS LINK FOR STORY .

CLICK HERE for a series of stories on Alzheimer's Disease.

Alzheimer's Strains Home and Family -Baltimore Sun

A Lazy Brain is a Shrinking Brain

Biomarkers Identify Early Onset of Alzheimer's Disease Before Symptoms Appear

Scientists Find Key Brain Circuits for Attention -Reuters

The 10 Warning Signs of Alzheimer's Disease

New Imaging Technique May Spot Alzheimer's Disease Earlier

When Music Works Magic - Excellent in-depth article on music's benefit to Alzheimer patients.

New Screening Tool for Dementia- ASK THE FAMILY -WebMD

The Link Between HDL Cholesterol and Dementia - Alzheimer's Society

Laser Headband Can Detect Alzheimer's Plaques and Tangles- New ScientistTech-Ewen Calloway

Brain Scans Detect Alzheimer's Disease Quickly -could speed the diagnosis -US News and World Report

New Clue to Alzheimer's Found - Not all beta-amyloid causes Alzheimer's Disease

Molecular imaging sheds new light on progression of Alzheimer's disease

New Website to Educate the Public About Neurodegenerative Diseases

Alzheimer's Association Disaster Tips - important information on how to prepare for floods, tornadoes, hurricanes- Quad City Times

World's Oldest Woman - 115 years old - found to have normal brain with little or no evidence of Alzheimer's Disease. - Science Daily

Free Long Term Care Insurance for America's Veterans - Kevin Wedmore

Social Interaction Remains a Priority for People With Alzheimer's Disease

Memories, Not Alone in the Moonlight - Rebecca Hyman

Study Outlines Misconception About Alzheimer's Disease -Queensland University of Technology

Lack of Transition Training Confronts Family Caregivers -USA Today -Kim Painter

Reaching Out - Richard Taylor wants people to know there is still life left in Alzheimer patients -chron.com

Interacting with Those Affected by Dementia - Senior News

Short Arms and Legs Linked to Risk of Dementia -American Academy of Neurology

New Alzheimer's Foundation for Caregiving in Canada is Established

Memory and Aging Clinic Opens at University of Arizona by Rebecca Ruiz-Mcgill

Dual Treatment of Incontinence and Dementia Associated with Functional Decline - Wake Forest University Baptist Medical Center

Music Targets Alzheimer's - Melissa Katz

Bill to create Silver Alert Program introduced to lawmakers - ABC Action News.com

Chemotherapy's Damage to the Brain - University of Rochester Medical Center

Choosing an Adult Day Center - Health News Digest.com

Alzheimer's Disease - Managing Difficult Behaviors- Ageless Design

Men More Likely to Have MCI (Mild Cognitive Impairment) -American Academy of Neurology.

Midlife Diabetes Linked to Alzheimer's Disease- American Academy of Neurology.

Structured Activities Important to Living With Alzheimer's Disease -Baylor College of Medicine

New Compound Identifies Alzheimer's Disease Brain Toxins (in Live Patients), Study Shows - Science Daily

New Alzheimer's Study Underscores Importance Of Sustaining Viable Medicaid System - Medical News Today

A Billion for Brains -Representative Kennedy of RI introduces bill to increase funding for brain research -"plans for a new National Neurotechnology Initiative that would spend $1 billion over five years to boost brain research, regulation, and drug development." - David Ewing Duncan.

First Ever Alzheimer's Rally Organizing in California -Alzheimer's Weekly

Duke University Study - Most will have cognitive impairment by age 70- US News and World Report

Alzheimer's To Hit 1-In-8 Boomers- CBS News

Short-term stress can affect learning and memory - Today @UCI

Health Tip: Early-Stage Alzheimer's - How to Maintain Independence Longer - Forbes.com

Pratchett Announces Alzheimer's Donation after Diagnosis- British author Terry Pratchett announced that he was donating nearly £500,000 ($1 million) for research into Alzheimer's disease, three months after he was diagnosed with the condition.

Mild Cognitive Impairment (MCI) causes more problems in relationships and daily living than previously realized

Early-Alzheimer's patients flunk financial study - USA Today

Assisted Living Costs for Alzheimer Patients are Tax Deductible - USA Today

Dementia Diagnosis Brings Relief, Not Depression - Science Daily

Wandering Presents a Serious Risk for Alzheimer's Patients -Tips for Prevention- Health Talk

Alzheimer's Presents Ideal Prey for Scammers - Helen Dennis, Successful Aging

Laws Protect Medicaid Patients in Nursing Homes

'Ugly Betty' dad Plana faces ugly reality of his mom's disease-USA TODAY

Smart Ways to Keep Your Brain Sharp and Dementia at Bay By LESLIE GARCIA / The Dallas Morning News

Holiday Stress and Caregiving by Michael Plontz

Tackling Alzheimers, Depression - Counseling and support may reduce the risk of depression in spouses of Alzheimer patients by Kathleen Fackelmann

Alzheimer Guide Dogs - dogs trained to return AD patients safely home

Alzheimer's Disease Could Be A Third Form Of Diabetes - Science Daily

You Can Alleviate Boredom in Alzheimer's Patient by Dotty St. Amand

ALZHEIMER DRUGS AND TREATMENTS

Elan-Wyeth Alzheimer Drug Data Unclear

Marijuana May Block Alzheimer's Disease

Dimebon May Keep Brain Cells from Dying.

Alzheimer's Clinical Trials - One Disappointment after Another -Richard Taylor, Ph.D

Alzheimer's Association statement on a newly published study of Etanercept (Enbrel) for Alzheimer's

Russian Anti-Histamine Drug Does Well in Alzheimer Trials.

Alzheimer's Association Statement on Flurizan failure

Flurizan Fails Study - Reuters

Alzheimer Drug Shows Promise - Health Day

Nerve Cells Derived From Stem Cells And Transplanted Into Mice May Lead To Improved Brain Treatments- Science Daily

Elan Vaccine Trial Restarted - Reuters

NIA Seeking Participants for Alzheimer's Disease Genetics Study

Flurizan to be Marketed in Europe -Associated Press

Vaccine Triggers Immune Response, Prevents Alzheimer's - University of Rochester Medical Center

Landmark Alzheimer's Report Urges Radical Changes to Paradigm of Therapy development for Alzheimer's Disese and Dementias to Focus on Prevention - PRNewswire

Disease-Modifying Drug May Slow Alzheimer's Disease - Anthony J. Brown, M.D.

Medivation's Dimebon(TM) Significantly Improved Daily Function in Alzheimer's Disease Patients- Medivation

Breakthrough or False Hope?- Etanercept Case Report Draws Scrutiny

UNFORGETTABLE, a story about memory - The Man Who Remembers Everything - Scientists hope by studying him, they can unlock the mystery to memory disorders - NBC News

Alzheimer's -What if the Dreaded Disease Isn't Really a Disease - Karen Long

IVIG Treatment Shows Promise - Suveillance Data Inc.

Exercise May Help Alzheimer's Patients -Brooke Adams, Salt Lake Tribune

Pet Therapy Trial for Alzheimer's Patients a Success - Katie Wylie

Going Forward With the Helmet Cure -Audrey Barton

Debate over Electronically Tracking Alzheimer Patients - Safety or an Invasion of Privacy?

Obesity Treatment to possibly lead to Alzheimer Treatment

New Treatments for Dementia Expected in a Couple of Years- Elliot Lake Standard, Ontario, CA

The Helmet That Could Turn Back the Symptoms of Alzheimer's - David Derbyshire

Latest Study Says Statins Don't Slow Alzheimer's -Health Day

Alzheimer's Association statement on a newly published case study of Etanercept (Enbrel) for Alzheimer's

Reversal Of Alzheimer's Symptoms Within Minutes In Human Study - Science Daily - January 9, 2008

New Drug Shows Promise in Halting Progress of Alzheimer's Disease

 

THE ALZHEIMER PATIENTS SPEAK FOR THEMSELVES

Stigma cited as main concern by those living with Alzheimer's Disease - From the Alzheimer's Association Website

What About the Living? -An Article by Richard Taylor

Earlier Diagnosis Giving Alzheimer's a New Voice by Lauran Neergaard

Life With Dementia - A Personal Take on Dementia by Diane Thornton

A View of Early Stage Alzheimer's Disease by someone who is living it - by Richard Bozanich

Two With Alzheimer's Disease Speak for Themselves By Mary Engel, Los Angeles Times Staff Writer
September 30, 2007

People With Alzheimer's Disease Speak Out In First Ever Global Survey

 

EARLY ONSET ALZHEIMER'S DISEASE (EOAD) -before age 65

Membrane Model May Unlock Secrets of Early-Stage Alzheimer’s

Biomarkers Identify Early Onset of Alzheimer's Disease Before Symptoms Appear

Calcium Abnormalities Linked to Familial Early Onset Alzheimer's Disease - Science Daily

Gene Variation Linked to Earlier Onset of Alzheimer's Symptoms

Our reader- Tony Pesare - his story -Orange City Man's Story Puts Face on Early-Onset Alzheimer's

Living with EOAD - the story of the Rodriguez family by WPTV news anchor Jim Sackett

Sufferers of Early Onset Alzheimer's Describe Life with the Disease - Jim Lerher - PBS

Too Young for Alzheimer's - by Joe Wolfcale

 

HELPING CHILDREN AND TEENS UNDERSTAND ALZHEIMER'S DISEASE

Alzheimer's - Helping Children Understand the Disease - Mayo Clinic

Alzheimer's Foundation of America Kicks off Teen's Initiative - Finally a website for teens of AD parents

Help Teens and Children Cope with Alzheimer's Disease - Barbara Mandell Pache

 

ALZHEIMER'S DISEASE AND DRIVING

Alzheimer’s on the road: When to take the car keys -by Kaycee Sink, M.D. M.A.S.

Alzheimer's, Dementia, and Driving - The Hartford Group

 

ALZHEIMER CARE RESOURCES- FROM ALZHEIMER DAILY NEWS:

Senior Housing Finder

Care Finder

Lotsa Helping Hands

 

THE POLITICS OF ALZHEIMER'S DISEASE

Most Voters See Alzheimer's as Key Issue - Barbara Basler

 

 

I was not able to find the link to Robert B. Schaefer's article, "Confessions of a Caregiver - What should I do about these dark, scary, intrusive thoughts?", so I have reprinted it below:

It is difficult to think of a more devastating diagnosis than that of the “probable early onset of Alzheimer’s disease” or for that matter any diagnosis of “dementia”.  From the moment that you hear those words spoken, you visualize your life and the life of your loved one literally shattered. Nothing for either of you will ever be the same again.

Fortunately, your defense mechanisms kick into action in an effort to protect you both from this horrible disease. Your lives first become filled with denial, which lasts from weeks to sometimes even years depending upon your individual makeup. Almost simultaneously, you begin to feel a terrible embarrassment at the diagnosis on both a conscious and subconscious level while making every effort to hide or mask the outward symptoms for as long as you both possibly can.  Eventually, and this too may take months or even years, you both come to the realization that you can no longer hide this disease from your family and friends. Exhaustion and frustration begin to surface and take over as you both attempt to adapt to this new way of life that you begin to hate.  You make every attempt to rationalize the devastation caused by this disease but nothing seems to work any longer.

It goes without saying that it is a difficult path that the victim of Alzheimer’s must follow, especially in the early stages of the disease, but as the disease progresses and the long and short-term memories disappear, I believe that the loss of awareness brings about a certain serenity and peace.  The second victim of this disease, the caregiver, is not as fortunate and that is what we need to identify and discuss further. 

The time will come that you as a caregiver will think that you are losing your mind, as strange, bizarre and evil thoughts seem to take control of your days and nights.   At the same time, you might feel constantly fatigued and agitated; suffer from a loss of/or too much appetite, too little or too much sleep and even difficulty staying asleep. You will notice increased feelings of isolation and loneliness, as friends and family seem to avoid you in your role as the caregiver. It might become more and more difficult to rid yourself of these “dark thoughts” and you feel so alone because you have no one to share them with.  Some nights you’ll find yourself lying awake in bed while these “dark thoughts” seem to start to make sense to you as your world crumbles before you.   Let me give you some examples of these “dark thoughts”:

  • I need to divorce my wife/husband as soon as I can to avoid financial ruin in 

the future.  We can still live together, but she/he must be on their own financially.

  • I need to liquidate what I can and take flight as I change my identity.
  • I need to kill her/him and then myself and we will both be at peace.
  • Will she/he die before me so that I can start having fun again and enjoy my retirement?
  • Sometimes as a spouse, I get so tired of caregiving, I want to forget the wedding vows and find a part-time partner or lover.
  • I do it all the cooking, cleaning, laundry, grocery shopping and anything else that needs to be done.  How long can I go on?  I’m about to go off the deep end – I want something to happen and end this all.
  • How can anyone be so stupid?  She/he cannot do a thing. I hate her/him and the fact that I’ve been placed in this horrible situation.
  • I am so tired of giving, giving, and giving.  Why me?  I know what thewedding vows say, but why isn’t this happening to everyone else?  It is not fair and I don’t think that I can go on any longer! I want out!
  • I can’t stand the repetition, pacing, rocking back and forth, following andhovering over me.  Every time I turn around she/he is behind me.  I want to shake her/him silly till they stop.
  • Sometimes I feel like I just want to die – I don’t have the strength to continue.
  • Why do I have to take care of my parent(s).  Where is the rest of my family?Damn my parent(s) for not being prepared for this.  Why are they making me suffer like this?             
  • I need to get her/his attention  - “Hello, is anyone in there?”  I get so frustrated and angry that I can barely stop myself from slapping, hitting, pushing, or shoving her/him.  Who would know if I did?  She/he would never remember it.
  • Everyone thinks that I am a loving and wonderful caregiver.  How would theyreact if they knew about these thoughts that I have been having?

The above list could continue for pages and pages, but I’m sure that I have hit home with the majority of you having experienced at least some of these thoughts.  When we do, something is missing.  The disease has robbed us of the ability to share these “dark thoughts” with our loved one, especially if the affected person is your spouse.  That is the point at which your isolation, loneliness and paranoia is exacerbated.  We have shared our deepest and most sensitive thoughts and feelings with our spouses and in some case our parents over the years and now that outlet is no longer available to us.  How can we rid ourselves of these evil thoughts without carrying them out?

This is an important moment for caregivers.  These “dark thoughts” represent a normal reaction to an abnormal situation.  It is ok and perfectly normal to experience such thoughts so long as you avoid acting them out.  Recognize that your mind needs to process these thoughts and you need to talk to someone about them.  This can often be best accomplished in a support group setting or perhaps with a close friend who has been exposed to a similar situation.  Some might choose to consult with a member of the clergy or even a mental health professional.  The important thing is that you verbalize your thoughts to someone and validate your emotions within a non-threatening environment regardless of the source and remove your mind of this emotional baggage.  If you do not take the time to debrief yourself then you will likely continually fight or repress these thoughts, which could lead to health or psychological breakdowns making you unable or unfit to continue your important responsibilities as a caregiver.

I have painted a very negative picture of your role as a caregiver.  WELL, CAREGIVERS LISTEN CLOSELY.  You are probably feeling very negative about your situation at this very moment. You are letting the negativism take over because that is the easier route.  Yes, the role of a full-time caregiver is not a glamorous, exciting and rewarding experience, but you and only you can remove some of the stress from your daily activities in order to at least make life a slight more bearable again. It is your decision, “Do you want to get better or become bitter?”  When there seems to be no light at the end of the tunnel, and this might occur daily for you, sit back, take a deep, deep breath and exhale as you repeat to yourself the ten most important two letter words that you will ever learn in your life: “ IF IT IS TO BE IT IS UP TO ME”.  The ball is in your court.  You can survive as a caregiver with a minimal amount of scar tissue, but it will take a great deal of work on your part. You have to want to be positive in order to achieve that milestone.   Concentrate always on the two most power-filled words, “I can”.                                                                                                                                                                                                                                                          

There is no doubt that the stress of caregiving will at times become unbearable.   Caregivers must constantly be on guard and attuned to protecting themselves against burnout.  It is so so important that you as a caregiver continually monitor your stress level, but the reality is that we as caregivers are often the last to know when we are stressed out.  Prior to her diagnosis of Alzheimer’s, my wife acted as my “stress barometer”.   I, as many of you, need to shift gears and to make sure that a new “stress barometer” is in place to monitor us daily.  Be it a family member or a close friend, someone needs to monitor your behavior for the telltale signs of overload, such as sleep disturbances, changes in personality, continued somatic or physical symptoms, excess use of self-medication in the form of alcohol and/or drugs and a general feeling that nothing is pleasurable any longer. 

Review the following list of ways to keep your stress within tolerable limits and prevent an overload.  Debrief yourself daily, monitor your “stress barometer” and utilize some or all of the following suggestions to live a more meaningful and satisfying life.  Hopefully you won’t have the time to dwell on “the dark, scary or any other negative thoughts.”  All of your available energy should be channeled into controlling your emotions while striving to make something positive out of a very negative passage of your life.  Stay clear of the most worthless emotion, which is self-pity.

  • Realize your limitations as a caregiver.  Acknowledge early on that in order to survive in the role of caregiver you will constantly need to ask for help.
  • Attend and get involved in the church of your choice
  • Remember that you still have your own life to live.
  • Seek some type of daily respite in the form of an Adult Day Center or a friend

or hiring someone privately or through an agency.

  • Eat a well-balanced diet, get adequate sleep and monitor your health with annual physical examinations.
  • Exercise regularly.
  • Utilize relaxation exercises daily.
  • Keep a sense of humor.
  • Volunteer your time at organizations such as the Alzheimer’s Association.
  • Work part-time to keep yourself actively involved outside of your caregiver role.
  • Socialize with friends and family.
  • Find time for a hobby that is pleasurable.
  • Educate yourself about Alzheimer’s disease.
  • Prepare yourself in advance to develop the mindset over time that assisted living or a nursing home setting will be appropriate and even necessary in future years.
  • And last but not least, if you feel that you are losing control in spite of your efforts, for heaven’s sake, seek professional help.  There is no stigma attached to helping yourself when your role as full-time caregiver begins to destroy your very being.       

STAYED TUNED - MORE TO COME.

Feedback to joan@thealzheimerspouse.com