Posts Tagged ‘LBD’

If you are going to do just one thing this year to raise LBD awareness, tell Congress about LBD and about your support for a very important act going to the House floor for a vote as early as next week!

On Friday, the Parkinson’s Action Network announced the following news:
On September 23, the full House Energy & Commerce Committee unanimously passed by voice vote H.R. 1362, the National Neurological Diseases Surveillance System Act. The legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including Parkinson’s and multiple sclerosis.

The surveillance system will be developed and maintained by the Centers for Disease Control and Prevention (CDC). This system will provide researchers and epidemiologists with a coordinated system of health data on neurological diseases and should fuel further research into neurological disorders like LBD. (Visit the Parkinson’s Action Network to learn more about the bill.)

Your Representative needs to hear from you today! Make sure your Member knows that the Lewy body dementia community strongly supports this important legislation. LBDA has developed a custom message about LBD and this act for your use, and the Parkinson’s Action Network’s website does the rest!
Please voice your support by e-mailing your Representative in support of H.R. 1362.



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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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It All Begins with Awareness…

Awareness builds knowledge.
Knowledge builds power.
Power builds research.
Research builds treatment.
Treatment builds hope.

Awareness is our beacon. It’s how Lewy body dementia will come out of the shadows and into the public eye.

The Lewy Body Dementia Association is committed to increasing awareness about LBD 365 days a year. This year, October 10-16 will truly be A Week To Remember as LBD families are Standing Strong with LBDA to raise LBD awareness and support throughout the country.

Participate by selecting at least ONE activity from any of the three links below. Together, we are…

Increasing Knowledge: Help to advance the cause by getting involved in community-based awareness efforts. Let’s make Lewy body dementia a household word!

Sharing Experience: No one should have to face LBD alone. Participate in one of the many ways LBD families connect to share their personal experiences of living with LBD.

Building Hope: Your much-needed support of LBDA’s mission means new hope for the 1.3 million families who are living with this devastating disease.

Join us or learn more about how you can Stand Strong with the 1.3 million families affected by Lewy body dementia.

Click here for LBD Awareness Week Resources you can download, including our LBD Awareness Kit – filled with ideas and tips on how YOU can help make October 10-16, 2010 A Week To Remember.

If you have questions about raising LBD awareness in your community,
contact us at awareness@lbda.org or 404-935-6444, ext. 104

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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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INCREASING KNOWLEDGE: Interviews on Capgras Syndrome sought in Texas and California

LBDA is urgently seeking persons in Texas or California who have Capgras syndrome, along with their caregiver, for possible interview with an international psychology magazine. Capgras syndrome, which can occur in LBD, is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member has been replaced by an identical-looking impostor. Those interested are encouraged to send a brief summary about your personal experience with Capgras syndrome in LBD to Angela Taylor at ataylor@lbda.org.

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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.

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

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Some of you who faithfully read this blog may have noticed over time that my entries have dropped off a bit. The frequency has decreased as things in my life have gotten hectic. So, those who continue to check for updates, I thank you for still following along. It’s time to get back in to blogging and so, I’ll catch you up on what’s been going on… a few entries at a time.

The first big bit of news is that the Husband and I have moved. After 14 months of living with and co-caring for Dad with Mom, the Hubs and I decided it’s time to focus on our future together. When we left Sydney, Australia to return home, we gladly did it knowing it was the right thing to do and that Mom and Dad needed help. Granted, we were newlyweds and never imagined that at 29 and 30 years of age we would be living with the parents but life happens and it was what was needed. Last year was not a good year for Dad and his health. Luckily, things have slowly improved after the New Year and I would say for the most part, Dad is now doing much better. Of course we all know how LBD can fluctuate and you just never know what’s going to happen. Despite the unknown, the Hubs and I made plans to move East and make Boston our home. I wrote about some of this on my personal blog but I’ll re-post some of it here, because really, it’s just easier.

“After much deliberation and taking into account my Dad’s health situation, it just made sense to make Boston our home. In an ideal world, Mom & Dad will sell the California house and return to Boston to be closer to family, friends, good hospitals and doctors. The market being what it is right now, the move for them might have to wait, but hopefully good fortune will be upon them and things will move along sooner rather than later. The hubs and I spent 14 months living with Mom and Dad to help caregive but the time had come for the Hubs and I to get back to us. As hard as it was to say goodbye and the stress and worry if they’re going to be okay can be overwhelming at times, we take comfort in knowing we’ll always be there for my parents- no matter the distance or any obstacles. I thank my lucky stars that I have married a special man that has the patience, respect and good nature to deal with such a difficult situation and all that it entails… but that’s a post for another time.”

Sister has been staying with Mom & Dad for the summer to help out while we’re gone but soon the school year will resume and she’ll be heading back to NYC shortly. I’m sure once she’s gone Mom is going to be in for some tough times ahead without anyone directly around her to help. I imagine she may be lonely, stressed, feel like the weight of the world is upon her and as if she’s going at this all alone. Even though she’s not, I can’t begin to imagine what it’s like for a spouse to see their beloved succumb to this terrible disease and to shoulder the burden of all that comes with it. We’ll all take things one day at a time and hopefully she can develop a routine that works for her and Dad. Sister and I will be calling every day, several times a day and will be there to help in any way possible. It will be a bit of an adjustment for myself in providing long distance caregiving but I know every little bit helps- and just knowing someone is in your corner is a source of comfort. Now that us kids will all be on the East Coast, I’m hoping Mom & Dad will be able to get out to Boston very soon. How soon depends on the finances and either selling the house or renting it, which during these times, is a bit difficult. Mom understandably doesn’t want to sell right now with the market prices being so low. Mom needs to sell at a higher price as she’ll need that money to pay off the house, move to Boston, rent or purchase something in Boston and ultimately, have some money left over to live on and pay for some of Dad’s medical expenses. At this time, it feels like a bit of a pipe dream.

Added to the stress of finances and selling the home is Dad being a bit resistant to leaving California. I think once Dad realizes it’s just him and Mom all alone, he’ll come around a bit as he’ll want to be near his kids. As much as Dad doesn’t want to leave California, it just makes sense- if not for my Mom’s own sanity. Being in Boston, Mom will have her kids close by, as well as, all her siblings and extended family. Having that kind of support so close will prove to be invaluable and allow her the opportunity to take a break, visit with family and so forth. It will also be good for Dad because he so enjoys seeing the family, too. I think being around friendly, familiar faces will help stimulate his daily functioning and give him something to look forward to- family birthdays, BBQs, watching the Red Sox and Patriots games with his brother-in-laws, etc. He’ll also only be a drive away from being able to see his own Sisters and their family and I know he would love that more than anything. However, something at the back of my mind is that a move East could also prove disorienting for Dad and send him downward. Those with cognitive and memory impairment tend not to do well with change. However, hopefully being back in Beantown where he and Mom spent most of their lives together and being surrounded by family and friends will help ease him in to the transition. Obviously, the sooner they move, the better- especially while Dad is still doing relatively well. If only we could win the lottery, right?

So, that’s where things stand for now. At the beginning of this month, the Hubs and I packed up our belongings in California and left the majority of it in storage. We loaded up the car with a few suitcases and drove across country. We are currently renting a furnished unit month-to-month while we search for our first home to purchase- hopefully before the winter sets in. Once we buy and are ready to move in, we’ll head back to California to pick up our belongings and once again, set out across country. It will also give us another opportunity to head back to Mom & Dad’s for a bit.

As you can see there was a lot going on between packing, preparing for the move to Boston, helping out at home and the normal every day things. There’s also more to it… but I’ll save that for another entry to come soon.

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