UP & DOWN: Attention, alertness and cognition have dramatic fluctuations in Lewy Body dementia. Caregivers call these ups and downs “The Roller-Coaster of LBD.” Learn more about it and where to get essential support.
"I watched my husband experience a decline in cognition followed by a period of what seemed like improved function only to plunge again into confusion with more frequent hallucinations,” says one caregiver newly acquainted with Lewy body dementia (LBD). According to the Lewy Body Dementia Association (LBDA), these ups and downs in function are sometimes refer to by family caregivers as the “roller-coaster effect” of LBD. Fluctuating levels of cognitive ability, attention and alertness are one of the core features of LBD.
“The combination of the motor signs of Parkinson’s disease (slowed mobility, stooped posture and tremor) and mental confusion, especially if the degree of confusion fluctuates day to day, should raise a red flag for suspicion of LBD,” says Howard I. Hurtig, M.D., Chair, Department of Neurology, Pennsylvania Hospital, and Elliott Professor of Neurology, Perelman School of Medicine, University of Pennsylvania. “If those symptoms are accompanied or preceded by REM sleep behavior disorder (vivid dreams, dream enactment, hitting bed partner, falling out of bed) and visual hallucinations (seeing people, animals, etc., that aren’t truly there), then the diagnosis of LBD is almost certain. Even when all symptoms of LBD are present, it is critical for the evaluating doctor to look for underlying, TREATABLE causes of dementia.” A thorough assessment will include an inventory of daily medications (drugs can produce a “chemical” state of pseudodementia), CT or MRI scan of the brain, blood tests for thyroid function and vitamin deficiency and other causes of dementia that can be identified by routine study.
Following Alzheimer’s disease, LBD is the most misdiagnosed form of dementia but the second most common cause of progressive dementia, affecting 1.3 million Americans. LBD is associated with abnormal protein deposits in the brain, called Lewy bodies, that impair thinking, movement, sleep and behavior (causing people to see hallucinations or act out dreams, sometimes violently). Also, it affects autonomic body functions, such as blood pressure control, temperature regulation, and digestion. Recognizing symptoms early can help people with LBD get comprehensive and appropriate treatment and help caregivers get much needed support. It’s difficult to diagnose LBD, because its early symptoms resemble symptoms found in Alzheimer’s and Parkinson’s disease.
Education about LBD is urgently needed. The Lewy Body Dementia Association offers individuals with LBD, caregivers and families a range of information, resources and support. Hurtig explains, “Caring for LBD is especially resource intense (and may be greater than in Alzheimer’s disease) because of the challenge to the provider and caregiver of treating problems created by the combination of cognitive impairment and parkinsonism, which occurs in most patients with LBD.” Like the woman quoted above, newcomers to LBD find solace and support through LBDA’s vibrant online community of caregivers. People help one another effectively cope with this devastating disease by sharing concerns, questions and experiences through LBDA’s discussion forums and social networks. To receive a packet of information or to access other resources about LBD, visit http://www.lbda.org/lewywho/.
About Lewy Body Dementia Association:
- The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of Lewy body dementias (LBD), promoting scientific advances, and supporting people with LBD, their families and caregivers. LBD, a complex disease that can present with a range of physical, cognitive, and behavioral symptoms, is a “family disease.” It dramatically affects not only the person diagnosed but also the primary caregiver. A national health organization, LBDA supports all those affected by Lewy body dementias through outreach, education and research.