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Posts Tagged ‘Family’

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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SEEKING NOMINATIONS—FAMILY CAREGIVER OF THE YEAR AWARD

Homewatch CareGivers is seeking community nominations for its annual Family Caregiver of the Year” award program. In addition to dozens of local awards, nominees have the opportunity to win a $5,000 grand prize for the national award.

The National Family Caregiver of the Year Award nomination entries will be judged based on the magnitude of care and support provided to an individual, personal obstacles that were overcome in order to provide this care, health care industry obstacles faced on behalf of the individual receiving care, and the impact this care has ultimately had on the individual.

A third-party must submit each nomination, and it’s recommended that the nominator include a nomination letter of 500 words or less with the application. Homewatch CareGivers must be able to verify the individual for which the nominee provided care, and the nominee’s care must have been provided within the 12 months prior to July 26, 2010.

Nominations will be accepted through July 31 by clicking here. A panel including experts from AARP, the Alzheimer’s Association, and CareScout/Genworth Financial, and more, will judge submissions.

Local winners will be announced September 1, 2010. The national winner will be announced October 25, 2010. All winning nominations should be prepared for possible interviews and media appearances.

To fill out a nomination application for someone in your community click here, or call 800-777-9770 and ask for the Homewatch CareGivers office in your geographic area.

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I realize Easter was about three weeks ago but I still want to post a few pictures from the day. Here’s Grandpa, Grandma and Baby.




We had a lovely day relaxing at home and enjoyed a delicious home cooked family dinner together. I hope everyone’s Easter/Passover was just as nice.

Dad has been doing well and I’ll write a separate post about that later. He’s enjoying his granddaughter and he really seems to do a lot better with her around. Dad likes singing to Baby while rocking her in his recliner. He’s always commenting on what a beautiful baby she is. I just love it. I’m so glad Dad is able to love Baby, remember Baby and enjoy her. Their time together, I will always cherish. I only wish he didn’t have this disease and Baby could grow up knowing my real Dad for a long time, not Lewy Dad.

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She’s Out of There!

Just a quick note that our baby girl is finally out of the NICU and home with her Mom and Dad. Yay!

Thank you to all for the continued well wishes and support. It really means a lot to us that people all over the country and the world are thinking of our little girl. We sincerely thank you. xx

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Word For Word

Lately when I talk with Dad on the phone he repeats everything back to me, practically word for word. I’m not sure if he’s doing it because he’s making sure he hears everything correctly, or, he’s not able to focus on the conversation so he parrots what you say as if he’s able to follow along. I have the suspicion it the latter as it’s easy to tell over the phone when he’s out of sorts. When he is having a good day, he’s able to ask questions and engage a little more. When it’s a bad day, I have to lead the conversation and constantly talk and wait for Dad to repeat me, sentence after sentence. Even when he is having a bad day (which is just about every day lately) he’s eager to talk with me over the phone so that’s still a good sign he hasn’t lost all focus, interest or ability.

I do find it amazing that even when Dad is having a bad day, Dad can still perk up for ‘showtime’ and hold a “normal” conversation- as if everything is fine. The second he’s off the phone, he’s back to being completely out of it again. This is especially true when talking with friends, extended family members or doctors. It’s like the pressure is on and he’s able to perform rather perfectly giving others the sense that’s doing so well and nothing is wrong. But, when he’s around his immediate family, everything is wrong and no one sees or hears the reality of Dad’s health. I guess in a way, that’s probably a good thing as it gives Dad his dignity and allow him to keep up his self-esteem. Don’t get me wrong, he’s not always bad when he talks on the phone or sees a familiar face. It’s just when he’s been having a bad Lewy cycle and it’s been pure hell for Mom, Sister and I, I’m sure others think it can’t be that bad because he sounds so wonderful. This disease is so strange and frustrating.

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