Posts Tagged ‘Parkinsonism’

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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For Dad’s birthday, we bought him a Wii and it’s one of the best things we’ve ever gotten him. Surprisingly, he does really well with the Wii despite his LBD and Parkinsonism symptoms. He mostly enjoys playing the golf, tennis and boxing games.

Dad does well with the golf which surprised all of us. You have to line up your shot using the buttons on the remote and adjust your force for hitting the ball so you have to be steady. I thought Dad wouldn’t be able to do any of this, but with a little help from us, he manages pretty well. In fact, he got a hole in one… he’s that good!

Dad does have some trouble with the bowling game as he can’t get the timing and coordiantion down. To bowl, you have to hold up the remote while pressing a button. While going through the motions as if you were bowling, you must release the button while moving your arm forward. Dad can’t quite get the timing and gets frustrated so we don’t play it that much with him.

Overall, the Wii acts as good exercise for Dad. Although at times it can be frustrating, it does help him work on his coordination, concentration, steadiness and accuracy. When he does well, it makes him happy and boosts his energy level. When all else fails, he enjoys watching Hubby and I play.

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Things seem to be getting better for Dad. I think the Namenda is finally kicking in coupled with a reduction in his daily Sinemet. He’s not experiencing hallucinations anymore which is great and he seems to be more cognizant and a bit like his old self. He’s now able to remember and fully recite his prayers at night which I believe is quite comforting to him. Today he went to Costco with us and the past few nights he’s been able to walk the dog. It’s great to see him up and functioning, again.

The only downside to his improvement is that he still sleeps the majority of the day. Often times he can easily sleep 15 hours or more, however, he’s very alert and active when he finally rises for the day. If we try to wake him early, he just does not have a good day and it ends in him begging to go back to bed. Generally, if he gets his desired amount of sleep, we don’t have to fight to get him out of bed and dressed. He’ll even have a good appetite. I mean, he’s not completely like his old self and in many ways, it’s still like caring for a kid. He’s dependent on us for his daily care but he’s definitely engaged in every day activities, able to focus, think and speak clearly. Who knows, this could all be part of the Lewy rollercoaster and next week we could be back to square one. Maybe, just maybe, we are getting his medication regiment under control? I don’t want to jinx it but it’s really quite lovely to see Dad getting back to being Dad, again.

However, with the upswing in his health and behavior comes a bit of a catch 22 situation. Now that he is more alert, he is more aware of his declining health. When he was “bad” it was never an issue. I think Dad is slowly realizing that something is wrong but he’s still in denial about having Lewy Body Disease. He thinks it’s “B-S.” We talk about his Parkinsonism- the trembling limbs, shuffling gait, stooped posture. For Dad, he sort of realizes that he must have something like it as there is no denying his shaking hands. Since he is understandably sensitive about his condition, we don’t really say the words, ‘Lewy Bod Dementia.’ It’s not that we’re trying to hide anything; it’s just that words like ‘Alzheimers’ and ‘Dementia’ are powerful and devastating words. To someone in a weakened mental and physical state, hearing them over and over can really do in one’s psyche. I always refer to Lewy Body Dementia as Lewy Body Disease or rather, LBD. Often times I don’t even really mention any of it in front of him. We’ve tried talking about it with him on several occasion and the doctors have mentioned it to him as well but he just doesn’t get it… or refuses to get it. As he says, “I’m not sick… that’s B-S.” To some degree it’s better this way because I think when he finally does come to grips with his reality, it will be absolutely devastating and I wonder about the affect it will have on his will to live.

Since Dad is quicker on the up take these days, I think he’s starting to remember the names of his medications. For instance, he’s taking Aricept which treats Alzheimer’s symptoms. During dinner, Dad overheard the Aricept commercial running on the TV in the background. The commerical talks about alzheimers over and over again. Well, Dad heard that word, stopped eating, turned around and watched the commercial. Mom and I both looked at each other and my heart sank. I know he knows and I think he’s dealing with it in his own way. He never discusses it with us or with his doctors. Since Dad seems to be getting better maybe that will change and we’ll figure out how to deal with it together.

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Every Monday, Wednesday and Friday, Dad works out at the gym. I think he likes going more for just being able to get out of the house and partly because he likes routine but I’m sure he also likes the exercise. Every time we go, he does 15 minutes on the sit down bike and then he does about 20 minutes worth of weights- some arms and some legs- in reps of three. And of course, he always has to have his iPod on which I think helps get him going.

Dad does pretty well considering his age and illness. In fact, sometimes he probably pushes himself a little too much but he likes working out and sticking to his gym regiment. Dad needs to exercise. It’s good for his overall mental and physical health. If he misses a gym day, he gets pretty upset and it usually sets him back- thus resulting in a “bad day.”  Even when he starts out as “bad” on a gym day, he’ll still want to go to the gym and afterwards, he seems a little better and more alert. 

Another benefit of the gym is that working out helps ease his rigidity issues. I believe from all the medicine he’s on it has caused him to become severly tense and rigid- and, partly from his Parkinsonism symptoms. Maybe it’s just me, but I think exercising aids him in regaining some of his muscle control and coordination. I truly believe, overall, working out helps him maintain his mobility and keeps him strong.

So, for as long as he can, we’ll keep taking Dad to the gym three times a week. It can only help and right now, every little bit helps.

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