According to the Alzheimer’s Association, one in three seniors will die with Alzheimer’s or another form of dementia.
While most people are familiar with Alzheimer’s, many have never heard of the second most common form of dementia: Lewy Body Dementia (LBD).
LBD exhibits many symptoms common with other neurodegenerative diseases, making it a particularly frightening and difficult condition to treat, posing a significant challenge for families and caregivers alike.
What is Lewy Body Dementia?
In the early 1900s, German neurologist Frederic Lewy discovered abnormal protein deposits that were later named “Lewy body inclusions.” However, the disease wasn’t included into the lexicon of medical knowledge until scientists discovered several decades later that those abnormal deposits were an incorrectly packaged protein now known as alpha-synuclein.
“When it misfolds and clumps, it starts to disrupt nerve signaling,” said Angela Taylor, Director of Programs at the Lewy Body Dementia Association, who watched her own father struggle with LBD before his death. “As it progresses, brain cells die. We’re not sure if [the Lewy bodies] kill brain cells, but they’re present during the process.”
What are the symptoms of Lewy body dementia? How is it diagnosed?
The difficulty with diagnosing and treating LBD lies with the diverse array of symptoms its victims experience, many of which are common to other neurodegenerative conditions such as Alzheimer’s and Parkinson’s.
Unlike brain tumors, which can easily be detected through brain scan imaging, there is no single test to identify LBD.
“It can be diagnosed during life, but not with 100% certainty,” Taylor said. “It’s quite challenging to diagnose; it’s a disease that’s still coming to maturity from a medical education perspective.”
For example, individuals suffering from LBD may exhibit behavior similar to that of person with Parkinson’s, such as slowed movement, stiff or rigid muscles, a stooped posture, or changes in walk or gait.
“We commonly see REM Behavior Disorder [in patients with LBD],” said Dr. Robert S. Rosenberg, Board Certified Sleep Medicine Physician and author of Sleep Soundly Every Night, Feel Fantastic Every Day. “This is a sleep disorder where the individual can and does act out their frequently violent dreams.”
Other symptoms commonly include:
• Dramatic day-to-day fluctuations in cognitive ability (confusion, alertness, thinking, reasoning, etc.).
• Visual hallucinations.
• Memory loss.
• Repeated falls and fainting.
• Problems with autonomic processes (i.e. body temperature, incontinence, constipation, swallowing, etc.).
“It’s hard to anticipate when they’re going to need help,” Taylor said. “My dad knew one day how to take off his coat, the next day he forgot how, and the day after that, he could do it again.”
Treating Lewy Body Dementia
There is currently no consensus in the medical community when it comes to reversing or reducing the severity of LBD. As such, it cannot be “cured.”
Often it is misdiagnosed as similar conditions such as Alzheimer’s or Parkinson’s. The danger here is that, while similar, patients with LBD are much more sensitive to medications, such as traditional anti-psychotics, that would normally be used to treat Alzheimer’s or Parkinson’s.
In fact, the use of traditional anti-psychotics to treat hallucinations and psychosis can actually aggravate the symptoms of LBD. “An early diagnosis ensures they won’t accidentally get exposed to them,” Taylor said.
While doctors may prescribe medication to treat specific symptoms, such as hallucinations or constipation, these treatments are largely palliative care, meaning they may help reduce pain in a patient with LBD but will not solve the underlying cause of the illness.
It’s also a good idea to help seniors socialize and find stimulating activities. While there’s no guarantee this will solve all of the mental issues they’re facing, prolonged isolation is never conducive to someone losing their cognitive ability.
Preventing Lewy Body Dementia
Researchers still do not know enough about LBD to know with certainty which dietary or lifestyle habits will keep it at bay. However, anecdotal evidence supports the idea that maintaining overall health — such as getting regular sleep, maintaining good cardiovascular health, and keeping the mind active — may help ward off neurodegenerative conditions.
“Research has shown people with higher education levels seem to withstand the pathology a little better,” Taylor said. “It reinforces the concept of ‘use it or lose it.’”
Caregiving for Someone with Lewy Body Dementia
Because a person with LBD has “good days” and “bad days” with unpredictable frequency, it’s important to closely monitor them at all times, especially during sleep if they’re exhibiting symptoms of REM Behavior Disorder.
“I had one patient who would jump out of her bed during a dream in which she was diving into a pool,” Rosenberg said.
While delusions and sensory hallucinations are common, it’s important for caregivers to realize that these symptoms themselves are not inherently dangerous. Rather, it may be conducive to play along — and even tell “therapeutic lies” — in a way that helps reduce stress in the afflicted.
“Use respite care liberally,” Rosenberg recommended. “Respite care comes in many forms. It could be someone coming to the house, or a specialized day care facility, or even a short out of home placement for a week or two.”
It’s important to remember that those who provide caregiving for people with dementia should keep close tabs on their own mental and spiritual health.
“Finding a community of people who have been touched by LBD, people who have practical experience and can be emotionally supportive, helps tremendously,” Taylor said. “It helps us realize we are not alone in this struggle.”
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