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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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November is National Family Caregivers Month. It is organized annually by the National Family Caregivers Association (NFCA) as a time each year to thank, support, educate and empower family caregivers.

In celebration of National Family Caregivers Month November 2009, the National Family Caregivers Association is once again offering a FREE teleclass/webinar to family caregivers across the country. “Safe & Sound: How to Prevent Medication Mishaps” will be offered on Thursday, November 12, at 2 p.m. EST.

This FREE teleclass/webinar will help you understand when medication problems are most likely to occur and what you can do to prevent them. There are approximately 100,000 deaths each year due to adverse drug reactions. This teleclass/webinar will give you the tools you need to minimize the possibility that you or your loved one will experience an adverse medication event.

You Will Get Answers to These Questions:

  • Why should I learn how to prevent medication errors and events
  • When are medication problems most likely to occur
  • What can I do to minimize risks associated with medications
  • How can I help my loved one be more adherent to medication regimens
  • How can I prevent medication problems at the hospital
  • How can I prevent medication problems at the doctor’s office
  • How can I use my community pharmacist as a resource

Sign up for Safe and Sound: How to Prevent Medication Mishaps, today – and please pass this along to your family and friends. Click here to register now. You can participate for FREE by telephone or online.

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Dad’s other VA prescription arrived in the mail Thursday. Wow, the VA actually came through for us, woo hoo! We’re still waiting to hear about the full work up at the main clinic… hopefully soon.

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Dad’s VA prescriptions arrived in the mail yesterday and so far they appear to be free! The only thing is the doctors supposedly ordered three prescriptions and only two came. We don’t know if the other is on its way or if it’s not coming at all. I guess we’ll wait a few more days to find out. The other thing is they gave us the generic versions of the drugs. Hopefully this won’t be a problem. At the very least, we can try it and if it doesn’t work, then that is more proof to go back to the VA and tell them we need the brand name. The doctors mentioned the VA pharmacy might do this and it’s a process. You have to try the generic and if it doesn’t work, then it’s more support for having the VA issue us the brand name.

We’re still waiting on the  VA clinic referral to come through for Dad to get a full work up and testing. I hope it comes through soon because Dad still needs his other meds that are normally prescribed by the neurologist.  The last VA visit they said Dad would have to wait for the work up to get the neuro meds.  Fingers crossed it all comes together soon.

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On Wednesday, Dad had an appointment at the local VA clinic to meet with a psychiatrist. Apparently, this is necessary in order to get some of Dad’s prescriptions through the VA system. His primary care VA doc can’t prescribe neuro or psych related drugs- they must go through a specialist.

Unfortunately, Dad has maxed out his prescription care coverage through his insurance so everything is fully out of our pockets right now. Some of his medications are unbelievably expensive for just 30 pills- it’s ridiculous. Going through the VA will be a significant savings especially since we still have the rest of the year to go. At this point, we’re thanking our lucky stars Dad is in the VA system.

Anyway, so Mom & Dad first met with a psychologist and then with the psychiatrist. The were both very nice, sympathetic and genuinely concerned. It was actually quite refreshing considering the bad rap the VA has- these doctors were surprisingly good. So, after the meetings, the necessary medications were ordered and they will be delivered to our doorstep. Hopefully it’s as easy as they say it is- we’ll see when the medications actually arrive (or not).

Both doctors were surprised to learn Dad has had no follow up tests, scans, full work up, etc. since his brain tumor and pulmonary embolism. They suggested Dad get some testing done to make sure there is no re-growth of the tumor and that the clot is hopefully shrinking, as well as making sure everything else is okay. Mom explained that she’s been asking his regular doctors about more testing for quite some time but they all seem to think everything is fine. So, we’re actually grateful these VA docs are more proactive and they’ve gone ahead and put in a referral for Dad to go to the main clinic for full work up. He’ll meet with a geriatric psych and a geriatric primary care physician. We all think this is a good idea although Dad isn’t too keen on going to the main clinic. He thinks we’re going to lock him away because his first primary care physician threatened to do just that when she didn’t have a clue on how to treat Dad. She threatened to take away our rights and have him placed in a lock down facility, which is right near the main VA clinic. So, whenever Dad hears the city name of the clinics, he automatically thinks he’s going to be locked away.  The doctors tried to explain this isn’t the case and that wouldn’t happen so they put in the request but Dad left the office swearing he won’t go. Obviously we’ll have to come up with a game plan when the day comes for him to go to the main clinic… he won’t be too happy. However, we’re happy to have the tests run to make sure everything is okay.

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Dad had a pretty good day today. From the moment he awoke, he was asking about the inauguration. He quickly got dressed and came out to watch the inauguration on the TV. You could tell he was excited about the day’s historic events as he’s usually not a morning person but today we was up and ready earlier than usual. He was happily chanting, “Obama! Obama!”

After watching President Obama being sworn in, we took Dad to his appointment with his neurologist at the local hospital. We had to deal with a scheduling conflict on their end and a two hour wait but Dad finally saw his doctor for a regular check up. The neurologist was pleasantly surprised to see Dad doing so well. He agreed that things were going well and not to mess with the medication. He also agreed that the Sinemet could have been the source of the terrifying hallucinations and said to just keep on doing what we’re doing. I’m glad we’re the experts! We made an appointment to follow up in another three months.

After seeing his neurologist, we took Dad down to the blood lab for his regular blood work for his pulmonary embolism. After waiting some more, Dad finally had his blood drawn except there were a few problems. First, he fainted. Secondly, they could not get any blood flowing from his veins. Apparently Dad was dehydrated and therefore dehydration thickens the blood causing no flow and led him to pass out. Dad’s blood is already dangerously thick- so much so that the doctors and nurses are worried about a stroke. So, we’re working on thinning out the blood and hopefully tomorrow after we get the results back, we’ll have better news on his blood levels.  Of course, Dad was completely in denial that he fainted. He thought we were telling lies and it never happened. He does not remember but most people who pass out don’t remember, either.

After Dad’s fainting spell, he was feeling better so we went out for lunch. Dad had his large glass of water and a chicken pot pie. He ate every single morsel. At least he still has his appetite!

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I’m happy to report Dad is improving these days. It started around Christmas time and it has been increasingly getting better. I don’t know if he was in a phase that’s part of the Lewy rollercoaster or if it was a result of the amount of medication he was on, or, a combination of everything. I’m thinking his decline had more to do with the medication.

I believe Dad is on a very high dosage of Sinemet- too high, however, his neurologist thinks he needs it all because Dad is extremely rigid and stiff. The doctor doesn’t want to lessen the dosage, however, we were getting desperate to help relieve Dad of his terrifying hallucinations and so we decided to reduce the Sinemet on our own- knowing the drug’s side effects can cause hallucinations. As a result of the reduction, his hallucinations have basically gone away and he is much happier, eating well again and is acting a bit like his old self. His walking has even improved and he’s not shuffling as much as he used to. I think he’s on a much better dosage now and hopefully it will stay its course. It’s amazing how much of a balancing act LBD is with the various medications and it has to be re-evaluated from time to time. This is something we need to make the doctors understand. Just because the prescription drugs were working for a while doesn’t mean it always will be that way.

Dad has improved so much that on Friday night we were able to go out to dinner and he ate everything on his plate. Sunday we went to the movies and out to dinner again- he ate everything. Last night he accompanied me on some errands to the dry cleaner and the grocery store and we puttered around outside working around the yard.

I’m really hoping he keeps up his improvement because things were really horrible for quite a while. Fingers crossed.

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