By Kathryn R. Burke, facilitator, Western Colorado Alzheimers, Lewy Body & Dementia Support.
What is Lewy Body?
Lewy Body Dementia (LBD), or Dementia with Lewy Bodies (DLB), is a progressive brain disorder. LBD is the second, most common form of progressive dementia. Mention it to most people, including many medical professionals, and they will say, “I’ve never heard of it.”
Yet, LBD is the most commonly misdiagnosed disorder. It is NOT Alzheimer’s Disease (AD), although often mistaken for it, and it is true that LBD and AD do co-occur, particularly in the later stages of LBD. True diagnosis can only be confirmed through autopsy.
(Note: Vascular dementia occurs more often than LBD, but it is not necessarily progressive and can often be reversed. LBD and AD cannot.)
What are the symptoms?
The disease can start with a decline in mental abilities, adversely affecting memory and thinking—in which case, it will likely be diagnosed as LBD (Lewy Body Dementia). When it begins with a decline in motor and movement control, it may be diagnosed as DLB (Dementia with Lewy Bodies, first evidenced by Parkinsonism symptoms). It could also start with neuropathological signs, such as hallucinations and delusions. However and whenever it starts, over time, all symptoms are likely to appear.
One common early sign seems to be REM sleep disorders (and violent nightmares, often involving animals), which often appear 15 or 20 years before the more obvious memory and movement symptoms are noted. (Early on, before we knew what was happening in his brain, my husband broke his hand fighting a nightmare bear.)
Behavior problems and nighttime insomnia are also common, and both may be the reason caregivers can no longer care for someone at home.
I speak from experience about these symptoms. All of them referenced here and referred to below in the Lewy Body Dementia Association (LBDA) and Mayo Clinic links happened to my husband. When behavior problems and insomnia became unmanageable, I had to place him in a skilled nursing facility.
Learn more about LBD symptoms from the Lewy Body Dementia Association (LBDA) and the Mayo Clinic.
What causes it?
Protein deposits, called Lewy bodies, (named after the man who discovered them), develop in nerve cells in the brain regions involved in thinking, memory, and movement (motor control). (More information.)
How is it diagnosed?
With difficulty. Because of the dementia symptoms which impact thinking (“What day is it?” asked repeatedly for example), LBD is often misdiagnosed as Alzheimer’s Disease—especially in the early stages. According to LBDA, “In early LBD memory may be relatively normal in comparison to Alzheimer’s disease. Instead, a person with LBD experiences problems with other cognitive skills, which may need a neuropsychologist for assessment.”
Attempting to diagnose the disease, doctors look for signs of dementia plus two or more core symptoms (e.g. fluctuating and unpredictable thinking, hallucinations, delusions, sleep disorder), and one or more secondary symptoms (e.g. autonomic disfunction, like unstable blood pressure; excessive daytime sleepiness (and nighttime insomnia); and loss of sense of smell).
Other diagnostic criteria will include assessing mental abilities with various tests, but it is important to note that high-functioning LBD patients can ace the Mini Mental Status Exam (MME) and some other tests. They don’t do as well on the ‘clock test’ since impaired spatial judgement is a factor. Neurological and physical examinations are also used, especially in determining Parkinsonism. Your doctor may also order blood tests, brain scans, and a sleep test.
Also, not all doctors are familiar with the LBD symptoms. We were fortunate, because ours did. This is why your advocacy is so important. Suspecting a LBD diagnosis, I thoroughly researched the disease and presented my findings to Hopsice and to our Primary Care Physician. After evaluation, they concurred, which was a blessing in helping with medical therapies and behavioral treatments.
For more information on diagnosis, visit Mayo Clinic and LBDA for the newest diagnostic criteria.
What is the life expectancy?
The disease can continue for more than 20 years after the first sleep disturbances, but generally, when symptoms escalate and mental and/or mobility issues become more obvious and require more constant care, life expentancy is five-eight years after accelerated onset.
Cause of death is less likely to be stated as LBD, and more likely to be the result of LBD symptoms, such as pneumonia from immobility (wheelchair-bound in later stages) or complications from a fall.
My husband’s death certificate lists a fracture from an unwitnessed fall as primary cause of death and Lewy Body Dementia as secondary cause.
Is there a cure? No.
Is there a treatment for this disease?
Not really. Are there medications that can help? Not many, if any. Many medications, especially those used to treat AD or Parkinson’s could may make it worse, so caregiver advocacy is really important. Haldol, commonly used (especially in emergency room situations) to treat psychotic episodes can cause death.
Cholinesterase inhibitors, such as Exelon (rivastigmine) used for AD may improve cognitive function and behavior problems, but the side effects can cause other problems. Sinemet and other medications used to reduce Parkinsonian symptoms may help, but they can increase mental confusion.
The best therapies are nonmedical and include behavioral and environmental approaches. These start by the caregiver learning to live with LBD–just ‘going with the flow,’ and traveling along with the hallucinations and delusions. (This is what we did.) As behavior becomes more difficult, try to validate and agree with the patient’s concerns. In other words, don’t argue or try to ‘correct’ them. Keep living space soothing and uncluttered (especially important if Parkinsonism symptoms are present) and stick to routine. Try not to place the person in a situation where they are asked to remember people or past situations, when at that moment, perhaps they can’t. Later, perhaps those memories will be intact. LBD is characterized by fluctuating alertness.
We also found soothing music, aromatherapy, and lots of kitty cuddles to be very helpful. Pet thearpy is often recommended for LBD. If with a familiar pet, it can be soothing and comforting.
Need more help?
Contact the Lewy Body Association for patient and caregivers services.
If you live in Western Colorado, contact us, the Western Colorado Alzheimers, Lewy Body & Dementia Support group.
And if you can, please donate. Your donation helps support research.