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The Dementia Few People Know About
By Carol Harrison
It may be the second most common form of progressive dementia after Alzheimer’s, but few people They don’t know about the cognitive fluctuations, the benign visual hallucinations, the walking problems, or the sensitivity to drugs that often are given safely to people with other dementias. Barbara Kadlecik didn’t know. She had no idea that the sleep disturbance that began in her husband a decade ago is an early sign of Lewy Body Dementia. His restless leg syndrome was a first glimpse at a progressive brain disease the Alzheimer’s Association says affects as much as 10 to 25 percent of It took seven years to diagnose LBD in her husband. “It’s like his legs were searching to kick me, and he wasn’t even aware it was happening,” Kadlecik said. “H sounded like he was sound asleep, but it wasn’t a good sleep pattern. The kicking was constant until She observed his balance problems, rigidity while walking, difficulty with spatial relationships and confusion. She noted other changes in sleep and work patterns, some subtle, others no so much. “My husband was a perfectionist, but five years before his death, the quality of his work changed,” she said. “He was tired and frustrated. And he would not or could not correct his mistakes. Before starting dementia medication, he was sleeping 16 to 18 hours a day.” She thought he was tired or it was the natural course of aging. “And at times I did not want to embarrass my husband by questioning his actions. Don’t make that same Sam Kadlecik, 85, died Aug. 30. His wife of almost 30 years cared for her husband for all but the final seven weeks. In honor of Lewy Body Awareness Month, the 69-year-old Trinidad resident looks back on a decade of missed signals and chronic ailments with the hope that their experience might help others. “There’s an attitude that dementia is dementia is dementia, but they’re not all the same,” Barbara Kadlecik said last week. “It could have been much easier for both us if we’d figured it out sooner. The sooner the diagnosis, the sooner you get the right medication, and the sooner you can maintain some of his abilities and quality of life. I don’t want anyone else to have to go through it.” According to the Lewy Body Dementia Association, an estimated 1.3 million Americans suffer with LBD. It calls the disease “challenging to diagnose, even for specialists,” in large part because of the similarity to Alzheimer’s and Parkinson’s diseases and the fact that Lewy bodies can often be found in patients Lewy bodies are smooth round lumps of protein found in the nerve cells of affected parts of the brain. Diagnosis may have been more challenging than usual in Sam Kadlecik. A gourmet of Italian descent who loved pasta and rich sauces, Sam was diagnosed with diabetes at age 73. He had gout, complained of arthritis and indigestion, popped Advil like mad and suffered a pair of mini-strokes in 2006 - three years after the onset of restless leg symptoms - and 2009. “Be careful of things like diet. You can get dementia by not living a healthy life,” Barbara said. Sam was in a steady downhill spiral and aware of multiple changes, many of which he noted in an anniversary card he gave to Barbara in 2008. “‘I can no longer visualize.’ That’s what he wrote,” she recalled. “He wrote about the physical and mental changes, but I didn’t pick it up. I was focused on the anniversary and the celebration, but it was the beginning of a death sentence for him.” She re-read the card in the days after Sam’s passing. “I overlooked it, but oh my God, it was there,” she said. “He even asked our doctor, a good friend, what he thought of (Sam’s) cognitive abilities and the doctor said, ‘Well, you aren’t Swiss cheese yet.’ The response should have been, ‘Why are you asking?’ Sam would have opened up.” For the next three years, Sam had multiple symptoms, some subtle, others that would come and go. “We were constantly at the doctor,” Barbara said. “That was the hardest time because he was scared and we were losing him quickly. I started noting all of it on a calendar, like a diary, and that started getting attention. You have to be able to show something is a repetitive thing and how bad it is.” “Behavior is meaningful,” said Mark Lamers, a mental health expert for Humboldt County Department of Health and Human Services who spoke at the Dementia Care Coalition Conference in Eureka in Sept. Lamers addressed overlapping presentations of various dementias and the need to understand what is normal for a dementia patient who many view as abnormal. “That means abnormally abnormal – not regular for them,” he said. “People with dementia who have changes in behavior have other problems they aren’t communicating.” “Spouses and caregivers are the first line of communication between the patient and doctor,” Barbara said. “We are the ones who have to observe and keep track of what’s happening.” Part of keeping track is staying connected rather than pursuing separate interests and duties. “Check in with each other about work and hobbies,” Barbara said. “You’ll learn and appreciate more about each other, be better prepared when one of you is gone, and you may get early insight to She encourages physicians to ask every older patient: “What could you do in the past that you can’t do “They may not get truthful answers, but there are exceptions,” Barbara said. In March 2011, Sam’s doctor prescribed Aricept, a common first-line, do-it-all drug defense for “He spoke to his doctor about the terrible dreams he had after he started Aricept,” Barbara recalled. “The doctor said, ‘Sounds terrible, Sam. Hopefully, they’ll go away.’ They didn’t. They were terrifying nightmares. He was afraid to go to bed because of them.” She kept abreast of the latest research through Neurology Now and jumped on Clonazepam, a medication suggestion for restless leg syndrome. “Lo and behold, the restless leg syndrome went away,” she said. “So did the nightmares.” The Family Caregiver Alliance notes that tranquilizing anti-psychotic medications such as Haldol, benzodiazepines such as Valium, and Ativan, and anti-histamines can cause extreme adverse reactions in LBD patients. Levodopa, given to treat parkinsonism, can increase hallucinations for those with LBD. Even anesthesia can prompt delusion and decline in motor function after surgery. Keeping track of all the symptoms and reactions – at one point Sam was on 20 medications – is a herculean task that becomes more difficult during a hospital visit, where care coordination can be a “This year, he went in the hospital. I gave them all the information on LBD; what to do and not do.,” Barbara said. “They still gave him Ativan. That sent him to the moon and back.” “The vast majority think dementia is dementia and don’t know there is so much more,” said Rachael Riggs, coordinator of the 2012 Dementia Care Coalition conference and former program manager for the Alzheimer’s Resource Center. “Dementia is not a diagnosis in itself and too many people don’t understand the foundational principles and need to be taught. We need to become a more dementia “I’ve thought for years about the things I should have been more aware of,” Barbara said. “I wish I’d Kadlecik is a volunteer candidate at Humboldt Senior Resource Center’s Adult Day Health and Alzheimer’s Resource Center. For more information about dementia and Alzheimer’s services, call 444- Area 1 Agency on Aging paid Carol Harrison to write this article.

Source: http://www.a1aa.org/sites/default/files/GM%20Lewy%20Body%20Dementia%2010-29-13.pdf