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

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


Pig-Latin, Esperanto and Bilingualism

I’ve replied to several of the comments from my earlier blog today. Check them out if you have a chance. After re-reading the post on “Comments Policy,” I was concerned that I was coming across as an angry school teacher. Not at all. I was trying to help those who emailed me questions about commenting. So, now, I hope I cleared that one up.

My prayer is that the Lord would use the difficulties in my life to help encourage others who may be going through hard times.Today is one of those good days again.

2 good articles for Caregivers:

25 Bad Habits Every Caregiver Should Avoid

30 Signs Your Loved One May Need a Caregiver

This link makes me want to renew my skills and to become fluent again in Spanish. I’ve forgotten many vocabulary words and idioms. Constructed languages for prevention of Alzheimers and Dementia I guess Pig-Latin wasn’t so bad after all! We used to get a good laugh out of doing it.

I’ve added some links on the right side of the page for those who want to subscribe to feeds of this blog. Do you want to learn Esperanto? Click here. And for Pig-Latin, click here. They are definitely worth checking out!

Want to leave a comment? Click here.

Have a good Sunday………….David Thomas

Chickens Lay Eggs in Bright Light

There are 12+ inches of snow in the front yard with 2-4 more coming! Erie’s Mayor declared an emergency for the city. Can you tell I have very fond memories of deep snow and powerful snow storms from childhood?

Last night I continued to feel sleep deprived which didn’t help the brain synapses. My step-father’s sister lived on a farm. I thought my Aunt Lu told me that the chickens would lay eggs better with more light since it’s so dark in the winter, so I turned on all the lights in the house. Pam had stepped out for a few minutes. Pam returned shortly and reminded me that Aunt Lu had died when I was in high school. I had some trouble finding where the kitchen was too. Today is better after some good sleep! Thank the Lord………one day at a time.

Amy and Gerald Throop were gracious enough to send me a complementary copy of their book, “Living with Lewy’s.” I’ll be posting a review of it on the blog. I still need to post the reviews for two other books. Just need to get around to it.

Living With Lewy’s

Empowering Today’s Dementia Caregiver

A Revolutionary New Survival Guide For All Caregivers
Especially for Caregivers of Patients with Dementia With Lewy Bodies, Alzheimer’s and Other Dementias

Foreword by

Dr. Carol F. Lippa, M.D., Professor of Neurology,

Drexel University College of Medicine,

Chair, Medical advisory Committee of the

Lewy Body Dementia Association

Written By Family Caregivers, For Family Caregivers

Amy J. Throop and Gerald S. Throop

If You’re One Of America’s 52 Million Caregivers, This Book Is For You!
Living With Lewy’s Answers A Thousand Questions For Caregivers. This book is easy to understand and organized so you can find answers quickly, day or night. It’s the companion book that you will refer to time and time again. This Is A Must Have Book For All Caregivers!

This book contains vital information about Dementia With Lewy Bodies, Alzheimer’s and other dementias.

ALL Caregivers Will Benefit From Information About:

*Support systems *Your personal health *Simple-safe care methods *Sleep improvement for caregiver and patient *Stress relieving techniques *Safe bath time *Continence management *Reducing falls *Diet, exercise and more

America’s 9 million dementia caregivers will discover:

•Life saving information about medications. •Up to date information from leading dementia specialists. •How to better understand each specific type of dementia. •How to seek professional help or a second diagnosis. •Care methods to cope with specific disabilities. •How to manage dangerous behaviors and much more.

Complete Financial Information About:

*Low or no cost respite *Tax breaks for caregivers
*Medicare Parts A, B and D – Prescription Drug Coverage
*Social Security Disability Insurance *Sick leave *Asset protection *Early retirement and much, much more.

Here is Hope’s response to the great folks who commented to her.

Warmly……….David Thomas

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