Montrose Daily Press [March 19, 2017] Kathryn R. Burke
Do you know someone who exhibits fluctuating cognitive impairment? One moment they seem crazy, then the next perfectly normal? And over time, the crazy seems to become more frequent and is augmented by delusional behavior? They see and hear things that aren’t really there. The diagnosis is dementia, with Alzheimer’s Disease (AD) the suspected cause. But, it Alzheimer’s or Lewy Body Dementia?
Is difficulty with mobility also a problem? Shuffling or wide-stanced gait, increasing frailness, rigid muscles, tremors, difficulty with small motor movements such as writing? This could be classified as Parkinson’s. But maybe it isn’t.
Progressive decline in mental ability and motor control (movement) may be caused by Lewy Body Disease (LBD). The disease is often mistaken for AD and goes undiagnosed, because many medical professionals are still not familiar with it. Yet, LBD affects an estimated 1.4 million individuals in the U.S.
LBD is the second most common form of degenerative dementia next to AD and is caused by presence of Lewy bodies (abnormal deposits of a protein called alpha synuclein in the brain). Regardless of the initial symptoms, over time LBD will develop cognitive, physical, sleep, and behavior disorders. Hallucinations, delusions, intermittent (and seemingly recoverable) memory loss, and insomnia are common symptoms.
Some people start out with a movement disorder leading to a diagnosis of Parkinson’s disease, then later develop dementia. Others begin with a cognitive/memory disorder, often initially diagnosed as AD. But, when certain distinctive features become apparent, this leads to a diagnosis of LBD, and movement disorder develops later. A third, smaller group may first exhibit neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities.
If it’s LBD, eventually, all of the symptoms will develop.
Early diagnosis is crucial. Medicines used to treat AD or Parkinson’s may actually worsen symptoms. Certain drugs, like Haldol, must never be given. As the disease progresses, behavior issues and insomnia make it difficult to care for patients at home. Decreasing mobility increases fall risk.
LBD is insidious. Barely noticeable at first, as it progresses, both patient and caregiver are heartsick as symptoms develop. Unlike AD, with LBD, sufferers are aware of what is happening to them. And there is nothing anyone can do about it, except to offer understanding and provide a safe and calm environment. LBD is a Caregiver’s nightmare. It requires infinite patience laced with humor as well as acceptance. A Caregiver must also be an advocate, learning all they can about the disease since so little is known about it. Understanding LBD helps Caregivers manage the symptoms and maintain their own sanity.
To date, there are no successful treatments and no cure. LBD is fatal. Early symptoms, such as violent nightmares and REM sleep disturbance, may herald the disease as much as 25 years before the more obvious symptoms appear. Once the symptoms become readily apparent, the disease usually runs its course in five to seven years. The end can be remarkably like ALS, as the patient loses ability to walk, think, and eat. Most sufferers don’t go the full course, however, and death is often caused from pneumonia (if wheel-chair bound and basically immobile) or complications from a fall (frequently a broken hip).
When the disease has been officially diagnosed, hospice can help. To learn more about LBD, contact the Lewy Body Organization (lbda.org), which offers advice, support, and resources. Another good resource is Mayo Clinic. (mayoclinic.org/diseases-conditions/lewy-body-dementia)
Kathryn R Burke speaks and writes about Caregiving. She understands LBD; her husband recently succumbed to the disease. Kathryn shares experiences and resources and offers invaluable help at caregiver-journey.com.
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