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ATLANTA, GEORGIA, USA, July 12, 2010 – Nearly 80% of people with Lewy body dementias (LBD) received a diagnosis for a different cognitive, movement or psychiatric disorder before ultimately learning they had LBD, according to the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias, released today.

This new report reveals people with LBD and their caregivers face barriers to obtaining an early LBD diagnosis. Caregivers rate specialists and general practitioners as inadequate in discussing disease progression. Additionally, caregivers experience moderate to severe emotional burden, and most experience a sense of isolation because so few people know about LBD.

LBD is the second-most common form of degenerative dementia in the elderly, affecting an estimated 1.3 million people in the United States. Symptoms include dementia, unpredictable variations in cognition, attention or alertness; hallucinations, Parkinson’s-like symptoms, a sleep disorder characterized by physically acting out vivid nightmares and dreams, and a potentially life-threatening sensitivity to certain medications.

“LBD is a family disease, affecting not just the person with LBD but also the caregiver,” said Angela Herron, President of LBDA’s Board of Directors. “This report underscores the challenges presented by a disease that affects cognition, movement, behavior, sleep and mood. Despite the fact that LBD is a common form of dementia many doctors and other medical professionals are unfamiliar with LBD, compounding the burden even further.”

Importance of Early Diagnosis and Physician Awareness of LBD

Half of people seeking a diagnosis saw 3 or more doctors for 10 visits over the course of a year before they were diagnosed with LBD, and diagnosis required more than two years from the onset of symptoms for 31% of cases.

Although prognosis varies among individuals, LBD is often a more rapidly progressive disease than Alzheimer’s disease, and early diagnosis provides families an opportunity to plan for expected decline in cognition, function and behavior. Given the evidence that suggests treatment with cholinesterase inhibitors may benefit patients with LBD more than those with Alzheimer’s disease, barriers to diagnosis have a negative impact on both the patients’ and caregivers’ quality of life. Especially important, early diagnosis of LBD provides physicians with an opportunity to minimize exposure to medications that may aggravate symptoms, such as antipsychotic medications. Nearly 60% of people with LBD may experience severe, potentially irreversible reactions to antipsychotic medications, and in rare cases, a life threatening condition called neuroleptic malignant syndrome may also occur.

LBD Progression Not Adequately Addressed

While neurologists made most LBD diagnoses, caregivers most often relied on primary care physicians for ongoing follow-up care and reported difficulties coordinating treatment of LBD symptoms between primary care physicians and specialists, as medication for one LBD symptom may worsen another being treated by a different physician. Caregivers rated over 40% of both generalists and specialists as inadequate in telling families what to expect in the future, and more than half of physicians as inadequate in suggesting telling the family where to find more information on LBD or community-based resources.

“The lack of information on disease progression is a serious challenge to LBD families,” stated Herron. “It’s essential that families plan in advance for the relentless progression of LBD, and not having answers on what that decline will look like or how fast it may occur, adds significant stress to an already difficult situation.”

Caregiver Burden is Physical and Emotional

Caregivers reported moderate to severe levels of disability in the person with LBD and over 90% had taken over instrumental activities of daily living, like preparing meals, managing medications, transportation, finances and appointments. Over 60% of caregivers indicated the person with LBD could not perform basic activities of daily living, such as dressing or bathing.

People with LBD had high rates of behavioral problems and mood changes and two-thirds of caregivers reported a crisis in the past year that required a hospital emergency room, emergency medical services, psychiatric care, or law enforcement.
LBD caregivers face a number of challenges: social, medical, functional and financial. LBD caregivers feel isolated and often have to respond to crises, but may not be receiving adequate support from family, friends or healthcare providers. These features have the potential to lead to adverse outcomes for the caregiver “burnout” including stress, depression and poor health.

“Poorer caregiver outcomes directly lead to increases in patient institutionalization and declines in quality of life, stated Dr. James E. Galvin, a member of LBDA’s Scientific Advisory Council and Professor of Neurology and Psychiatry at New York University. “This may be particularly important in LBD where patients are at an increased risk of institutionalization and mortality.”

The findings are based on data collected by the Lewy Body Dementia Association (LBDA) in an online survey of 962 LBD caregivers. Designed by Steven H. Zarit, PhD, an expert on caregiver burden in dementia and Professor of Human Development at Penn State University, the survey was conducted over a 6-month period. Dr. Galvin analyzed the survey data, which was published in the July, 2010 issue of Parkinsonism & Related Disorders and the April-June, 2010 issue of Alzheimer Disease & Associated Disorders.

The full text of the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias can be viewed by visiting http://www.lbda.org.

The Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA’s Scientific Advisory Council is comprised of leading experts from the United States, Canada, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit

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Today is World Alzheimer’s Day- a day when the Alzheimer’s Association and other organizations around the globe unite efforts to raise awareness about the disease and its impact on families, communities and nations.

Here are some facts to consider:

  • According to the 2009 World Alzheimer’s Report, newly released today from Alzheimer’s Disease International (ADI), there are 35 million people with Alzheimer’s or another dementia.
  • There are 5.3 million Americans with Alzheimer’s.
  • There are 10 million Alzheimer caregivers.
  • Every 70 seconds, someone in the US develops Alzheimer’s.
  • There are 78 million US baby boomers who will be impacted by Alzheimer’s disease.
  • The annual societal cost to our nation is $148 billion.
  • Worldwide, the economic cost of dementia has been estimated as $315 billion annually.
  • The US government only invests a meager $428 million dollars in Alzheimer research as compared to $6 billion for cancer, $4 billion for heart disease and $3 billion HIV/AIDS that has resulted in great advances.

Here are some ways you can help:

  • Consider making a donation to the Alzheimer’s Association today. You can donate by clicking here. Your gift will help the Alzheimer’s Association fulfill its mission against Alzheimer’s disease through the advancement of research, the promotion of brain health and providing care and support services to the estimated 5 million people in America living with Alzheimer’s disease.
  • You can also write Congress now and urge them to support the Alzheimer’s Breakthrough Act of 2009. It takes just a minute to help. Click here to take action.
  • September and October is also prime time for the Alzheimer’s Association Memory Walk. The Memory Walk is the nation’s largest event to raise awareness and funds for Alzheimer care, support and research – and it calls on people of all ages to take action in the fight. Year-round, participants are involved in efforts to help defeat this devastating disease. To find a walk near you, click here and find out more information, sign up, donate or volunteer. Get out there and walk!
  • To read more about the report released today, click here.

*Content for this entry taken from the Alzheimer’s Association website.

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I received the following information in an email from the LBDA about the upcoming Alzheimer Research Forum‘s webinar, Betwixt and Intermixed-Dementia With Lewy Bodies:

The Alzheimer Research Forum, is the web’s most dynamic scientific community dedicated to understanding Alzheimer’s disease and related disorders like Lewy body dementias.

Their upcoming event, Betwixt and Intermixed-Dementia With Lewy Bodies has generated a tremendous response from the caregiver community, including some 90 questions on LBD diagnosis and treatment submitted from caregivers.

With this event, the Alzheimer’s Research Forum aims to increase awareness of dementia with Lewy bodies (DLB) among scientists and physicians, their primary audience. As such, the panel of LBD experts will focus largely on scientific research topics.

While the live event may address some clinical issues at a high level, at only one hour long it will be impossible to address the many caregiver questions that have been submitted. To ensure your questions receive the attention they deserve, the AlzForum editors have assembled them in a caregiver comment page and will be asking the panelists and the Lewy Body Dementia Association to respond offline to these questions after the event.

Some of this information can be found on the LBDA website now. Visit http://www.lbda.org/category/4115/publications.htm to read our many publications or watch caregiver educational videos on LBD at http://www.lbda.org/category/4116/multimedia-resources.htm.

For those who are registered for this event, only questions on the scientific topics should be submitted DURING the actual event. If you are a patient or caregiver and have questions in addition to those already posted, you are invited to submit them ahead of time via the AlzForum website at http://www.alzforum.org/contact.asp.

LBDA will work with the AlzForum editors to provide the fastest response to the most frequently asked questions so that LBD families now and in the future can all benefit from the answers. Due to the volume of questions, the reality of limited resources, and the availability of our LBD experts, there will be a modest delay before the answers are posted online.

We appreciate your patience while AlzForum and LBDA work together to develop the answers you need.

Sincerely,
The LBDA Team

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Alzheimer’s Research Forum will be hosting a scientific webinar titled “Dementia with Lewy Bodies – Dreadful, Common, Understudied?” on Monday June 15, 2009 at 12 noon Eastern Time for one hour.

Click here to learn more and to register. The LBDA also lists info about the webinar which can be found here.

After you register, you will get an e-mail confirmation with the dial-in telephone number and a “Join Now” box in the e-mail, that when you click on it, will take you to the webinar via your computer. Therefore, save this e-mail registration confirmation for Monday June 15, 2009 and use it to join the webinar a few minutes before 12 noon Eastern Time on Monday June 15, 2009.

**Please note: This will be a scientific webinar, therefore, it will be heavy on the science.**

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I came across this on the Yahoo LBD Caregiver’s site and is also found on the LBDA forums.

The Alzheimer’s Research Forum is running a nine part series on an international Alzheimer’s Disease/Parkinson’s Disease conference held in March of ’09 in Prague and on an international Dementia with Lewy Bodies/Parkinson’s Disease Dementia conference held a few days earlier in Prague.

Here’s a brief run-down I got from the above-mentioned sites:

  • Part 1 is about overlaps between neurodegenerative diseases, proteins, genetics, and biomarkers.
  • Part 2 is about a genome study of PD and MSA.
  • Part 3 is about diagnosing and researching DLB.
  • Part 4 is about the interplay between two proteins in DLB.
  • Part 5 is about imaging biomarkers.

Click below to read the difference parts of interest:
Part 1.
Part 2.
Part 3.
Part 4.
Part 5.

If you would like to join the Yahoo LBD Caregivers Yahoo group, click here. I also have a “join now” button on the bottom right of my home page. The LBDA forums can be found here.

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This is from an email I received from the Alzheimer’s Association:

The Alzheimer’s Public Policy Forum on March 23-25, in Washington D.C., includes a pair of media events and a moving and meaningful Candlelight Vigil on the steps of the Lincoln Memorial.

Your support as a caring and compassionate American is critical to the success of the Forum. Below, you’ll find several meaningful ways you can be part of the activities:

Help us get the word out to America by voicing your support during the following media appearances by Association leaders:

  • Alzheimer’s Association President and CEO Harry Johns will appear on C-Span Tuesday, March 24; 8:30 – 9:00 AM, (EST) to introduce the latest frightening statistics from the new Alzheimer’s Association 2009 Alzheimer’s Disease Facts and Figures Report.

  • Alzheimer’s Study Group members Newt Gingrich, Sandra Day O’Connor, and David Satcher will appear on National Public Radio’s Talk of the Nation on Wednesday, March 25; 2-3 PM (EST) to discuss the Alzheimer crisis.

Please check your local listings for station information.
Ask family, friends and colleagues to tune in.

 
Can’t attend our Washington, D.C. Candlelight Vigil in person? Then light a virtual candle — create a moving and lasting online tribute page!
Tonight, Alzheimer advocates will gather to share their stories and light candles in honor of their loved ones impacted with Alzheimer’s disease.  If you haven’t already, please take this opportunity to light a virtual candle to honor caregivers, those who are living with Alzheimer’s, those who we love who have been lost to the disease, or simply as a way to show your support in our fight against Alzheimer’s.

Thank you for taking part in these Public Policy Forum events and activities. Your involvement will make a significant difference in our goal to rid the world of the tragedy of Alzheimer’s disease!

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I received the following in an email from the LBDA. Please take a moment to help them out.

The Lewy Body Dementia Association’s newest publication, An Introduction to Lewy Body Dementia, is already in high demand by LBD families, physicians and aging resources.

If you’ve already read this booklet, the LBDA would appreciate your participation in a short online survey at http://www.lbda.org/go/bookletsurvey. Your feedback will help LBDA better understand and meet the needs of LBD families.

For those of you who are not familiar with it yet, An Introduction to Lewy Body Dementia is written especially for those newly diagnosed with Lewy Body Dementia and others still seeking answers. The booklet also includes a detachable medical alert card which refers to a companion webpage for ER physicians. You can view the booklet online in English and Spanish by clicking here.

If you would like to receive a hardcopy of the booklet, please visit your local Area Agency on Aging or click here to learn how to request your copy of the booklet or wallet card by mail.

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