LEWY BODY DEMENTIA BASICS
LBD (Lewy Body Dementia), or Dementia with Lewy Bodies (DLB), is a neurodegenerative disease that has characteristics similar to that of both Alzheimer’s and Parkinson’s diseases. It is one of the four common types of dementia known and is associated with protein deposits in the brain that cause disruptions to the normal functioning of the brain. Diagnosing the disease is extremely tough as its symptoms can resemble that of other brain diseases.
The Lewy Body Disease Family
Lewy Body Dementia is a member of the Lewy Body Disease Family which includes (1) Lewy Body Dementia (LBD) often times called Dementia with Lewy Bodies (DLB), (2) Parkinson's Disease (PD) and (3) Parkinson's Disease with Dementia (PDD). Although we talk a little about PD and PDD throughout the guide below but we focus primarily on LBD.
One of the most common causes of dementia after Alzheimer’s disease and vascular dementia, LBD occurs due to abnormal microscopic deposits of a protein known as alpha-synuclein in the brain. Discovered in the early 1900s by Freiderich H. Lewy, these proteins are better known as Lewy bodies. The build-up of these Lewy bodies causes the brain to deteriorate due to the disruption of normal brain functioning.
In normal conditions, the alpha-synuclein proteins are actually quite abundant in the brain. The problem of LBD arises when the proteins mutate and form little clusters within neurons, which leads to cellular death. The location of the protein deposits define the types of symptoms that a person exhibits. It can be either that of Parkinson’s, which mainly affects the motor system, or that of Alzheimer’s, which mainly affect cognition and memory.
Lewy Body Pathology: H&E Stain
(A) The large pink Circle is a Lewy Body within a Brain Cell. (B) The brown section to the left of the Lewy Body is normal brain pigmentation. (C) The nucleus, the cell's control center is to the far left of the cell.
(Source: US Department of Health & Services: Advisory Council on Alzheimer's Research, Care and Services)
To the average person, Lewy Body Dementia and Alzheimer's often seem like the same thing. Sometimes, the two terms are even used interchangeably. However, although the two are somewhat related, each condition has its own distinct differences.
Both Lewy Body Dementia and Alzheimer's are types of dementia. Alzheimer's is much more common then LBD and symptoms of the diseases vary significantly. While Alzheimer's typically affects in the late stages of life (65+), Lewy Body Dementia can start to show symptoms at an earlier age.
Typically, the first symptoms of Alzheimer's are memory loss, whereas Lewy Body Dementia may manifest itself through emotional and behavioral issues such as drastic mood swings and emotional changes throughout the day, hallucinations, and paranoia.
Obtaining a clear diagnosis for dementia is extremely difficult for physicians.
Misdiagnosis and undiagnosed is common in dementia because while brain imaging, blood testing, and comprehensive tests can help in the diagnosis, it is still not a perfect science. Physicians rely on the tests as well as the progressing deterioration and occurrence of different symptoms to make as best of a diagnosis and treatment plan as possible.
While there are many types of dementia, the four largest subset of dementias are Alzheimer's (estimated at 60%-80% of the cases), Fronto-temporal Lobe Dementia (estimated at 5-10% of cases), Lewy Body Dementia (estimated at 5-10% of cases), and Vascular Dementia (estimated at 10-20% of cases). Mixed dementia - or having multiple types of dementia (example: Alzheimers and Fronto-temporal Lobe) is also common in dementia patients, making it even more complex to diagnose and treat.
Lewy Body specifically compared to other symptoms shows itself primarily with emotional, behavioral and physical impairments. Examples of this may be drastic fluctuations in mood or behaviors from normal to abnormal, vivid hallucinations and motor difficulties similar to parkinsonism. By comparison, behavioral issues such as depression, compulsiveness and apathy are more prominent in the earlier stages of Fronto-temporal Dementia (FTD). Loss of motor functions such as changes in gait is highly characteristic Vascular Dementia, and memory loss is most prevalent in the early stages of Alzheimer's.
Towards the middle and later stages, progressed emotional and behavioral impairments such as sleep disorders, severe paranoia, hallucinations combined with short term memory loss are all signs of a LBD diagnosis. In these stages, wandering, progressed memory loss, and loss of motor function is more common in other types of dementias. Difficulties with language such as word finding and word association is also more common with other diagnosis.
Being informed about the other types of dementias and symptoms experienced by those who have it, assists in the diagnosing and treating of the disease. It is extremely important to take note of the progressive changes of symptoms as this will enable the physician to make customized treatment and medication plans to counter the symptoms of the disease.
This chart compares the symptoms of the different types of diseases to show what types of symptoms are more or less in the various diseases.
Unlike Alzheimer’s, the symptoms of LBD cannot be classified into concrete stages as it manifests differently in each person. One person might show one combination of symptoms while another person might display a different combination of symptoms. They may even fluctuate between normal and abnormal conditions from day to day, hour to hour, or even moment to moment. Overall, the symptoms of LBD can be classified into initial, core, suggestive, and supportive features. However, the central feature is the same as other dementias: progressive dementia, where memory, attention, and executive function deteriorate over time.
For more detailed information about Lewy Body Dementia including it's causes, how to detect and diagnose the disease, treatments, care options, and important resources for families caring for a loved one, check out our Lewy Body Dementia Guide at this link!
Care Tips on dealing with every aspect of Lewy Body Dementia (LBD) care including how to keep your loved one safe, how to choose the right care home or tips on how to keep them at home and independent as long as possible.
Find assistive products for LBD in our Lewy Body Dementia Products page. Sort by stage and symptoms to find the best products for you or your loved one.
Products by Stage:
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In terms of care arrangements for Lewy Body Dementia patients, there are generally two types of options that the patient’s friends and family can opt for: in-home care or out-home care.
During the initial stages, while the patient is still able to function independently, most people may prefer to remain at home, where they are most familiar with their surroundings.
After initial diagnosis, the primary caregiver may still be able to handle the tasks of looking after the patient. But as the symptoms progress to the early and middle stages, they can opt for in-home care arrangements. There are several types available in this category:
- Companion services – to help with supervision and recreational activities.
- Personal carers – to help with various personal care tasks such as bathing, dressing, eating, and exercising.
- Homemaker services – to help with housekeeping, cooking, or shopping.
- Medical carers – to help with medical needs, physical, and/or mental therapies
Another option for patients who are still able to function relatively independently, is Adult Day Care Centers. These facilities provide a safe environment for dementia patients to pursue activities, interests, and socially interact with people. This type of care arrangement can give the patients a sense of freedom while dealing with their diagnosis. They are also likely to have counselling, health services, meal services, personal care, behavior management, therapy, and other related services available.
During the last stages of dementia, when the patient is unable to fend for themselves, the best choice often will be residential care in the form of Personal Care Homes, Assisted Living, Nursing Homes with special care or memory units. There, they can receive specialized care and treatment to ease their situation. Each of these facilities will offer different levels of care. Selecting one will depend on the patient’s needs and progression of Lewy Body Dementia. Read our detailed guides on each one to assess which may be the best fit for you or your loved one.
Hospice Care and Geriatric Psychiatric Facilities are two lesser talked about short-term arrangements for patients with dementia. These systems assist with end of life comfort measures (hospice) and medication rebalancing (Geriatric Psychiatric Unit), both of which are crucial to maintaining the patient’s dignity and safety for them and their caregivers.
Hospice Care services are available with any care arrangement and are attached to the patient wherever they go as long as the organization providing the services is able to provide services.
Geriatric Psychiatric Facilities are meant to be a resource for when a patient is experiencing severe behavioral changes that need to be adjusted for with medication in order to ensure the patients, and his/her caregivers safety.
For more information on the differences, how to find a care facility and on commonly experienced issues with each care arrangement, visit the following pages:
- Care at Home
- Adult Day Care
- Assisted Living
- Nursing Home
Lewy Body Dementia Association: Support Group Listing
Online Forums & Chat Rooms:
For family members and friends who would like to educate themselves further on the details of Lewy Body Dementia, its symptoms, treatments, and challenges, you should seek the assistance of the national Lewy Body Dementia Association as well as other organizations listed below:
LEWY BODY DEMENTIA RESEARCH
Click the following links for News Articles on Lewy Body Dementia (LBD):
For a list of providers, follow this link.
Compared to Alzheimer’s, LBD is still a relatively unknown type of dementia. And because of that, there are a lot of ongoing research and clinical trials going on every day. For example, there are:
- Treatment trials where new and existing drugs are tested to study it has a positive effect on the symptoms of LBD.
- Genetics studies where scientists try to figure out whether LBD is a genetically passed down disease.
- Diagnostic studies where scientists and researchers look for better and improved alternative ways of diagnosing the onset of LBD.
- Prevention trials where researchers investigate ways of preventing the onset of LBD itself.
For more information on research currently being conducted on Lewy Body Dementia, the following are great resources and tools that can help shine light on progress being made.
For a list of clinical trials check out these awesome resources:
- ClinicalTrials.gov: Provides regularly updated information about federally and privately supported clinical research in human volunteers. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations and phone numbers for more details.
- NIH Clinical Research Trials and You: Is an online resource to help people learn more about clinical trials, why they matter and how to participate. Provides information on the basics of clinical trial participation, first hand experiences from actual clinical trial volunteers, explanations from researchers, and links on how to search for a trial or enroll in a research matching program.
- Fox Trial Finder: Is a web-based clinical trial matching tool to connect those with and without Parkinson's disease to Parkinson's clinical research participation opportunities. Also provides the opportunity for volunteers to connect directly with trial coordinators through a secure messaging interface on the site.
- Alzheimer's Association: Lists selected trials in treatment and prevention of Alzheimer's disease from ClinicalTrials.gov. Trials included here are recruiting participants at more than one U.S. location.
- Center Watch: Clinical research, including listings of more than 41,000 active industry and government-sponsored clinical trials, as well as new drug therapies in research and those recently approved by the FDA.