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Posts Tagged ‘Lewy Body Dementia Association’

Mark your calendars for the second annual Allan D. Morrison 5K Run/Walk. The event, benefiting the Lewy Body Dementia Association (LBDA), will take place in Melrose, Massachusetts on Saturday, October 16, 2010 at 10:00am.


Help raise awareness and much needed research dollars for Lewy Body Dementia. For more information, to register for the race or to make a donation, check out the website by clicking here.

image taken from race website.

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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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I received this email from the LBDA:

A Week to Remember

Dear Friend,
Awareness is our beacon. It’s how Lewy Body Dementia will come out of the shadows and into the public eye.

  • Awareness for the spouse whose “happily ever after” has been stolen away by LBD.
  • Awareness for the primary care doctor whose patient would benefit from referral to a specialist for a specific diagnosis.
  • Awareness for the caregiver that she is not alone.

Although we remain committed to increasing awareness about LBD 365 days a year, October 10-16 will truly be A Week To Remember, as the LBDA Family comes together to raise awareness and support across the country.
We invite you to join us and countless others who will be participating in grassroots efforts like these, to name just a few:

Watch for more information on our website, and in e-mails like this one, in the weeks and months to come. To learn more about how you can stand strong with the 1.3 million families affected by Lewy body dementia, please contact us at awareness@lbda.org. We hope you will join us in making this A Week To Remember.

Remember, it all begins with Awareness.

Sincerely,
Angela Herron
President, LBDA Board of Directors
Together, we are Increasing Knowledge, Sharing Experience, Building Hope.

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The Lewy Body Dementia Association has made available on their website a Caregiver FAQ in response to caregiver demand from a recent LBD webinar hosted by the Alzheimer Research Forum. To listen to the webinar, click here.

To read the first installment of answers to some of the most frequently asked caregiver questions, click here.

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If you missed the Lewy Body Dementia Association commercial which aired over the weekend, you can see it below:

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I received the following email from the Lewy Body Dementia Association:

Hut, Hut, Hike!

Join with us this month to watch a special message from the Lewy
Body Dementia Association during the television broadcast of the
Pro Football Hall of Fame Enshrinement Festival’s Timken Grand
Parade Aug. 8 in Canton, Ohio.

This special 30-second commercial on Lewy body dementia is the
first of its kind to be shown nationally. The parade will be
available in more than 81 million households throughout the
month of August – click here for information on your local
station’s airdates and times.

Thank you to the Bankert family and all who have helped make
this incredible opportunity possible, and to you for joining with us
as we Increase Knowledge, Share Experience and Build Hope for
all those affected by LBD in more ways than ever before!

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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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