- Lewy Body Dementia (LBD) is the second leading cause of neurodegenerative dementia after Alzheimer’s
- LBD is caused by the development of abnormal clumps of proteins in the cortex of the brain
- Unlike Alzheimer’s, LBD symptoms at the early stage are less associated with changes in cognitive function and more related to sleep disorders, constipation, or fainting issues
- LBD can occur in combination with Parkinson’s Disease or even Alzheimer’s disease
- As LBD progresses, LBD patients will share many of the same problems as Alzheimer’s patients have such as memory loss or depth perception
- Although there is no cure for LBD, there are medications that help manage the symptoms such as benzodiazepines
Although Lewy Body Dementia (LBD) occurs far more commonly than people think, it is not for many people as familiar a dementia as Alzheimer’s Disease, Parkinson’s, or even vascular dementia, yet LBD it is the second (some sources say the third) leading cause of neurodegenerative dementia after Alzheimer’s.
Sometimes referred to as Dementia with Lewy bodies, There are reasons for the relative obscurity of LBD. According to Angela Taylor, Director of Programs for the Lewy Body Dementia Association, “Making an LBD diagnosis is often challenging and routinely delayed. There are rather wide variations in how the disease presents in the beginning, which may make it look like Alzheimer’s disease, Parkinson’s disease or a psychiatric disorder.”
It is the case that patients and their family members are often not particularly eager to report specific symptoms. But, even when they do, what they report might not provide the physician with sufficient information to make the diagnosis.
In the early 1900s, Friederich H. Lewy, a German scientist who was researching Parkinson’s disease, discovered abnormal protein deposits that disrupt the brain’s normal functioning. These abnormal protein deposits eventually became known as Lewy bodies, though the name wasn’t accepted until after Lewy’s death.
Lewy Body vs Louis Body vs Louie Body
People often spell Lewy Body Dementia as Louie, as in Louie Body Dementia, or Louis, as in Louis Body Dementia. Needless to say, these are all names for the same disease and represent idiosyncrasies that relate to people’s spelling rather than the disease itself.
While abnormal clumps of proteins in the brain are thought to be the cause –or at least a significant symptom– of several types of dementia, the type of protein involved in LBD is different, as is the part of the brain that is first affected. When these clumps develop in the cortex of the brain, LBD develops.
There are times when abnormal brain changes occur in different parts of the brain simultaneously, which can cause LBD as well as Alzheimer’s or vascular dementia. As previously noted, a combination of different types of dementia is generally referred to as Mixed Dementia.
The difficulties stem from the fact that early symptoms of LBD, unlike those of Alzheimer’s, are not particularly associated with changes in cognitive function. Early LBD symptoms include sleep disorders, constipation, or fainting, i.e. not relating to the thinking process. And in today’s fast-paced world and busy primary care practices, healthcare providers may not have enough familiarity with the complex diagnostic criteria for LBD.
What happens most of the time is that patients with LBD are misdiagnosed with early-stage Alzheimer’s. In time however, an increasing number of symptoms develop to suggest that a dementia other than Alzheimer’s is the culprit.
The most common Lewy Bodies diagnosis involves multiple trips (six appointments on average) to at least three doctors. And even then, half of the diagnoses take more than twelve months to materialize. All of this to acknowledge that it really takes a specialist like a neurologist, a psychiatrist, a geriatrician or a neuropsychologist to get the correct diagnosis.
People often become confused about the term “dementia.” They tend to use the word interchangeably with Alzheimer’s disease. Yet, Alzheimer’s is just one type of dementia. Dementia is an umbrella term describing loss of memory and other mental abilities that are severe enough to interfere with daily life. The key difference between normal aging and dementia is that these changes are not just frustrating or inconvenient, they actually interfere with the ability to live life in a normal capacity. The other common factor is that all types of dementia are caused by physical changes in the brain.
LBD is a spectrum disorder. This means that it can occur alone, but more often, it occurs in combination with Parkinson’s Disease to create “Parkinson’s Disease with Lewy Bodies”, or it can co-exist with Alzheimer’s disease creating something called “Mixed Dementia”. Like most other types of dementia, Lewy Bodies is progressive and degenerative, meaning that it worsens over time and gets incrementally worse.
According to the Lewy Body Dementia Association (LBDA), the disease accounts for up to 20 percent of dementia cases in the U.S. Up to 1.3 million cases of LBD have been diagnosed in the U.S. alone, with only 30-50 percent of LBD cases being accurately diagnosed, even in dementia centers.
LBD symptoms can start as memory loss and thinking problems that are common in Alzheimer’s, but people with LBD are more likely than people with Alzheimer’s to have the first noticeable symptoms present as:
- Sleep disturbances
- Visual hallucinations
- Gait imbalance
- Or other symptoms that are common to “Parkinson’s Disease
Memory problems do occur but they aren’t necessarily the first symptom noticed, nor are they the most troublesome.
According to the Lewy Body Dementia Association, LBD is highly under-diagnosed, partly because it shares some characteristics with the more common Alzheimer’s Disease, and partly due to lack of awareness of this different type of dementia. LBD can be confused with Alzheimer’s Disease or Parkinson’s Disease, and can actually accompany Parkinson’s Disease.
The right diagnosis is important – Thomas’s story
My late wife Pearl lived with LBD for 10 years. Her dementia was diagnosed “dementia unspecified” for seven years. We finally received a diagnosis of LBD three years before she died in 2011. It was a blessing to learn about LBD and the correct treatment for her disease. Knowing how to properly care for her LBD symptoms allowed her to live with LBD in relative peace and comfort. That part of our journey living with LBD improved in part because of the help and support I received from a local disease-specific LBD caregiver support group. – Thomas
Do all people with DLB hallucinate? My dad has a recent DLB diagnosis but does not hallucinate. Does this mean his diagnosis is wrong?
Could you address sleepiness? My husband is very tired during the day. Are there ways to combat these symptoms of the disease?
My physician is not familiar with DLB, how can they get the appropriate information to make an accurate diagnosis?
What is the best way to get DLB patients involved in activities to help stimulate them if they do not want to do them?
What research agency do I contact if I am willing to participate in a study about early biomarkers of DLB?
In the earliest stages of Alzheimer’s symptoms, memory loss is often prominent, while in LBD memory generally stays fairly normal. Attention and alertness are however weakened in LBD, making the symptoms easy to confuse with memory problems. This is partly why it hard to determine the root cause of the symptoms, or to attribute the symptoms to LBD.
Problem-solving skills become impaired in both types of dementia, but these changes are usually noticed earlier in the progression of LBD.
Also, as discussed above, the proteins that cause the problem are different. In both cases these brain proteins are misfolded and cause clumps. In Alzheimer’s, these clumps are called plaques and tangles, caused by tau and amyloid proteins. LBD features the presence of Lewy Bodies, which are misfolded alpha-synuclein proteins.
People who develop LBD often experience changes in movement similar to those who acquire Parkinson’s Disease. These changes include slow, stiff movements, changes in gait or posture, and tremors. Movement generally remains normal in LBD -up to the later stages.
While someone in the advanced stages of Alzheimer’s may experience hallucinations, visual hallucinations are more common in LBD early in the disorder.
Sleep Behavior Disorder is often a problem with LBD, but not with Alzheimer’s Disease patients. A person with that sleep disorder often physically acts out dreams, which can be frightening. They also sometimes injure themselves or their bed partners, and the significant factor here is that this behavior may begin years, or even decades, before LBD symptoms appear.
People with LBD will likely have fluctuating cognition. They may also have visual hallucinations, even hallucinations involving smell, taste, sound and touch. They may become unresponsive, at times developing mood disorders and becoming delusional. As mentioned, sleep disturbances are common, as they are in Alzheimer’s, but in LBD they may take the form of activating vivid dreams and nightmares.
As LBD progresses people with the disease will share many of the same problems that people with Alzheimer’s do. They will have progressive memory loss, and depth perception can suffer as well. They will lose the ability to make sound decisions, or lose their ability to have the proper insight into their actions. In addition, disorientation with time and space will occur, as will loss of initiative and most language abilities.
A hallucinating nightmare – Paul’s story
I walked one day into the nursing home where Dad was living. That was probably in his fourth year or so after diagnosis, and as soon as I opened the door, I could hear screaming. I rushed in to find he had a vise-like grip on the wrist of one of the aides. There were nurses trying to pull him off, and he was struggling with them. Dad had an amazing grip almost to the end, even while his body was deteriorating.
I put myself in his line of sight and started saying his name. It took him a while to focus, but he finally did. I said, “Dad, it’s ok. I’m here now and you can let go.” He slowly let go of her wrist. I immediately moved him away from the crowd to calm him down. I asked him what was wrong, and he had trouble verbalizing whatever it was. In an epiphany, I asked, “Dad what were you seeing?” He promptly replied, “She was trying to cut up that baby!” The moral of the story is that when a person is sometimes acting out, it might not be pure craziness. He hallucinated about her cutting up a baby and, of course, he intervened. He wasn’t out of his mind. It was just a reaction to what he was seeing.
I encourage caregivers to consider this when some type of violence or acting-out episode occurs. Ask them what they are seeing. You may be able to defuse the problem relatively quickly once you see what they were seeing. This also demonstrates the vividness and reality of LBD-type hallucinations. – Paul
People who are familiar with Parkinson’s disease will often see someone with LBD and assume that this person has Parkinson’s. That’s because of various neurological symptoms that are similar, mostly involving movement and coordination issues.
Both diseases can also include muscle stiffness and rigidity, extremely slow movements that include a “frozen” stance, tremors, stooped posture, blank facial expressions, a shuffling gait, swallowing problems, and a weak voice.
Caring for a person with dementia is challenging, often exhausting, at times frustrating and, in the later stages, nearly impossible, when the patient is at home, without significant outside help. Families however hang in with their loved ones both at home and in care facilities. One thing that people who care for loved ones with dementia have in common is the thought that if we don’t laugh, we’ll cry. So, we look for humor where we can find it. We don’t laugh at the person, we laugh with the person.
Humor Gets Us Through – John’s story
You can choose to see the humor in things as against crying over what you see. One day, I was having lunch with Dad. We were sitting at our table waiting for them to bring the food. The table was empty except for a napkin holder, salt and pepper, etc. Dad is impatiently waiting for his food. I’m not saying much but just watching him. As I am observing him, he reaches down with both hands and picks up something imaginary, brings this object that only he can see to his mouth, takes a bite, chews, swallows, and then lays it down on the table. He looks up at me and says “that has to be the worst sandwich I’ve ever tasted!”
I nearly fell to the floor with laughter. He started laughing too because I was laughing. It turned into a special moment. I could have seen the sadness in a hallucination so real that he thought he was actually eating a sandwich, but I chose to see the humor in the absurdity of the whole thing. Humor is lurking out there even when things seem very dark. You just have to look for it. – John
Sadly, like Alzheimer’s and most of the other dementias, there is no cure for LBD. The best that doctors can do, at this time, is manage the symptoms. This becomes more difficult as the disease progresses. Medicating people with LBD can be tricky as well, since there are some medications that may be helpful with other types of dementia that can actually make people with LBD worse. They may cause sedation, motor impairment or confusion. The most well-known of these drugs are benzodiazepines, which comprise a lengthy list of drugs, including allergy drugs and some anti-anxiety drugs. Other drugs include tranquilizers like diazepam and lorazepam, and anticholinergics (antispasmodics) such as oxybutynin and glycopyrrolate. Some older antidepressants can cause negative effects for people living with LBD, as can some surgical anesthetics.
Like other types of dementia, LBD provides caregivers with challenges that most of us would never have imagined possible unless we’ve lived with the disease as well. People who live into the later stages of the incurable types of dementia eventually become unable to understand the nightmare that their caregivers go through. Fear and paranoia often reign, turning the environment into a harsh and entirely unwelcoming living space.
If you were to put yourself in a place where nothing in your surroundings was familiar, your once loved family members may become the enemy, and strangers are stealing your belongings. This is reality for many people with LBD.
Learning to care compassionately with someone who lives with any of these devastating diseases can be overwhelming. Education does help, and so do friends, other family members, and all those who show up to give the primary caregivers a moment of respite. Organizations such as the LBDA also provide the type of information and support that makes caring for your loved one easier. They help you learn what to expect and how to respond.
Learning as we go – Jeanne’s story
I was cleaning up the kitchen one evening when my husband, Coy, came walking unsteadily through the kitchen toward the garage door. “Where are you going, Hon? I asked. “I have to catch a bus!” Was his reply. I looked at the closk an told him, “I’m afraid the last bus of the day left a half an hour ago. Where did you want to go?” Disappointed, his response was, “ I want to go home! I am so tired and I want to sleep!”
I led him to the bedroom, helped him get ready for bed, and give him his night medications. I kissed him goodnight and turned around to finish cleaning the kitchen.
Earlier in his disease I would have scolded him for not using his walker, tried to convince him that our garage was not a bus station, and that he was already at home. I learned that these arguments were all futile. Getting him what he really needed was much easier for the both of us! – Jeanne
Much more research is needed in order to better understand the underlying cause –or causes– of LBD and, of equal if not more significance, to find a cure. We can hope that the massive ongoing research for Alzheimer’s Disease and Parkinson’s will overlap and help bring equal progress in the Lewy Bodies field. Meanwhile, both professional and family caregivers are left to do their best in assisting people living with LBD. We all play our destined and practical part to enable patients and caregivers to continue on with their lives with as much quality as possible.