Written by Norma Loeb, Founder & President, Lewy Body Dementia Resource Center
In 2015, Lewy Body Dementia (LBD)–a disease that long stood in the shadows of Alzheimer’s Disease–found itself in the national spotlight when actor Robin Williams was reported to have had the disease.
Descriptions of the nature of Lewy Body Dementia are as numerous as the disease is complicated–for both the individual who has been diagnosed with the disease and those who are involved in caregiving. LBD is a degenerative neurological disease with a variety of symptoms that become present over time. Some symptoms overlap with those of Parkinson’s Disease. Both diseases evolve from the aggregation of misshapen deposits of alpha-synuclein within the tissue of the brain.
Reports vary based upon sampling technique and location, but it is believed that 1.4 million people in the United States, who are mostly 50 years or older, have Lewy Body Dementia.
We believe that this statistic is understated as the cluster of symptoms that define LBD often take years to evolve. As a result, many individuals are often incorrectly diagnosed unless they continue to be re-evaluated and/or their diagnosticians are familiar with this disease.
Per the Mayo Clinic, Lewy Body Dementia–the second most common type of progressive dementia after Alzheimer’s disease–causes a progressive decline in mental abilities. It may also cause visual hallucinations, which generally take the form of objects, people or animals that aren’t there. Another indicator of LBD may be significant fluctuations in alertness and attention, which may include daytime drowsiness or periods of staring into space. And, like Parkinson’s disease, LBD can result in rigid muscles, slowed movement and tremors. In LBD, protein deposits, called Lewy bodies, develop in nerve cells in regions of the brain involved in thinking, memory and movement (motor control). The cause of Lewy body dementia isn’t known, but the disorder may be related to Alzheimer’s or Parkinson’s disease. Lewy bodies contain a protein associated with Parkinson’s disease.
What are Lewy Bodies?
Lewy bodies were first described in the early 1900s by Friederich H. Lewy while researching Parkinson’s disease. However, the first case of LBD was not described until 1961, with the first set of clinical criteria put forth in 1996. One reason LBD research has lagged behind that focusing on Alzheimer’s and Parkinson’s for decades is due to an earlier notion that it was a rare disease. It wasn’t until the development of a staining technique in the late 1990s that researchers learned how much more common LBD is than previously thought. – per James E Galvin, MD, MPH and Meera Balasubramaniam, MD.
Because LBD comes with a host of physical, cognitive and behavioral symptoms, it often mimics Alzheimer’s disease, Parkinson’s disease or a psychiatric disorder. As a result, it is widely misdiagnosed.
What are some of the symptoms of LBD?
- fluctuations in cognitive ability, attention, and alertness
- slowness of movement, difficulty walking, or rigidity (parkinsonism)
- visual hallucinations
- sensitivity to medications used to treat hallucinations and other symptoms
- REM sleep behavior disorder, in which people physically act out their dreams by yelling, flailing, and hitting bed partners
IMPORTANT DIFFERENCES BETWEEN LEWY BODY DEMENTIA, ALZHEIMER’S DISEASE & PARKINSON’S DISEASE
LBD is not rare. Though there may be overlapping symptoms—and each person with LBD may display symptoms differently—the following information will help distinguish the differences between Lewy Body Dementia, Alzheimer’s disease and Parkinson’s disease.
- The most prominent symptom in Alzheimer’s disease is memory loss. In LBD, problems with planning, judgment and visual perception are more typical, though memory problems will occur as the disease progresses.
- Movement problems (motor skills and Parkinson’s symptoms) are predominant in Parkinson’s disease and generally evident in LBD versus walking and balance issues in later stage Alzheimer’s.
- Hallucinations and misidentification of people and objects are much more typical in LBD earlier on.
- The REM sleep disorder occurring in LBD (and some people with Parkinson’s) is much less common in Alzheimer’s.
- Persons with LBD may also have issues with their autonomic nervous system where they experience changes in blood pressure and incontinence. This is not typically an Alzheimer’s issue, though incontinence certainly is in later stage Alzheimer’s.
- Unlike early Parkinson’s disease, persons with LBD will exhibit cognitive impairment (particularly executive dysfunction), behavior issues, and have fluctuations in alertness. Depression and apathy are also symptoms of the disease in connection with all the others.
- Persons with LBD have many of the same symptoms of Parkinson’s disease (slowness of movement, a shuffling gait, rigidity in the arms and legs), though many individuals with LBD don’t have the hand tremor.
- People with LBD are extremely sensitive to medications, i.e., “typical” antipsychotics (Haldol), anticholinergics, Valium, Benadryl, Ambien, antiemetic drugs. Dopamine related medications may also cause side effects.
Changes in behavior and mood may be a big issue for many with Lewy Body Dementia. These changes can include: depression, agitation, paranoia, anxiety and a lack of interest (apathy) in daily activities.
Changes in the autonomic nervous system can also affect people with LBD. It’s possible for many to have frequent falls, issues with blood pressure, incontinence, constipation, and a loss of smell.
Per the National Institutes of Health, Lewy Body Dementia is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of 5 to 7 years from the time of diagnosis to death, but the time span can range from 2 to 20 years. How quickly symptoms develop and change varies greatly from person to person, depending on overall health, age, and severity of symptoms. In the early stages of LBD, usually before a diagnosis is made, symptoms can be mild, and people can function fairly normally. As the disease advances, people with LBD require more and more help due to a decline in thinking and movement abilities. In the later stages of the disease, they may depend entirely on others for assistance and care.
Genetics: While having a family member with LBD may increase a person’s risk, LBD is not normally considered a genetic disease.
WHO CAN DIAGNOSE LEWY BODY DEMENTIA?
Many physicians and other medical professionals are not familiar with LBD, so patients may consult several doctors before receiving a diagnosis. Visiting a family doctor is often the first step for people who are experiencing changes in thinking, movement, or behavior. However, neurologists—doctors who specialize in disorders of the brain and nervous system—generally have the expertise needed to diagnose LBD. Geriatric psychiatrists, neuropsychologists, and geriatricians may also be skilled in diagnosing the condition.
HOW CAN FAMILIES BE HELPED?
LBD affects every aspect of a person. The combination of cognitive, motor and behavioral symptoms creates a highly challenging set of demands which is why caregiver burden is extremely high. The Lewy Body Dementia Resource Center (LBDRC) was formed in 2016 as a 501(c)(3) nonprofit organization. The mission is to raise crucial awareness of LBD, to offer urgently needed resources and guidance for the many families who have lacked the services they need because people do not know of the disease. Awareness of this disease is primary.
An objective is for Lewy Body Dementia to become as common a name as Alzheimer’s disease or Parkinson’s disease—and for the importance of this distinction to be understood.
The LBD Resource Center has the only live helpline in the United States at 516-218-2026 or 833-LBD-LINE. It operates seven days per week from 8:00 am to 8:00 pm Eastern time. It offers caregiver support groups as well as support groups for people who are living with LBD. In addition to providing pertinent information about the disease, LBDRC’s website (www.lewybodyresourcecenter.org) offers recommendations of neurologists and thousands of other resources.
Key to the essence of this resource center is a sense of community, where you can receive loving support from those who have lived through, and learned, the best ways to help those who suffer from this debilitating disease.