Lewy Body Dementia: What You Need to Know

A look behind the science

While the leading causes remain unknown, we do know that Lewy bodies are unusual buildups of a protein called alpha-synuclein in the brain. This accumulation results in the loss of specific neurons that affect two of the most essential neurotransmitters: dopamine and acetylcholine. When these two chemicals in the brain are affected by Lewy bodies, they impair cognitive, behavioral, and physical abilities. Based on current research, age is the highest risk factor found so far, but it’s, so far, unclear whether genetics is also at play.

How to spot LBD

LBD is difficult to diagnose as early symptoms can be mistaken for a psychiatric illness, Parkinson’s, or Alzheimer’s. This means that the disease can be neglected for quite some time or overlooked altogether. It’s impossible to know for sure that someone has it during their lifetime, as a brain autopsy provides the sole definitive answer. But the National Institute of Neurological Disorders and Strokes (NINDS) says it’s possible to establish a diagnosis with a genetic test if there’s a history of LBD in the family.

The Lewy Body Dementia Association (LBDA), along with various national health institutions, categorize LBD symptoms into four groups: cognitive, movement, sleep disorders, and behavioral and mood.

LBD cognitive symptoms

Cognitive symptoms include memory issues. Some people may experience cognitive fluctuations, in which unpredictable changes in day-to-day life can cause distress, anxiety, or poor concentration. In contrast, others may be perceived as illogical, unclear, or disorganized. Another common symptom is hallucinations, which are experienced by 80% of patients diagnosed with LBD.

LBD physical symptoms

Those who experience physical symptoms will likely face muscle rigidity or stiffness, slow movement, tremors or shaking when at rest, along with balance issues, falls, or a loss of coordination. There can also be issues with blood pressure, dizziness, fainting, and urinary incontinence, to name just a few.

LBD sleep symptoms

While sleep disorders often go undiagnosed, it’s a common ailment of those with LBD. The NINDS’ publication on the disease explains that sleep disorders may include daytime drowsiness (sleeping more than two hours during daytime per day), REM sleep behavior (acting out one’s dream physically while asleep), excessive insomnia, and restless leg syndrome (where there’s an urge to move the legs to stop unpleasant sensations while inactive).

LBD behavioral and mood symptoms

For those suffering from behavioral and mood symptoms, their personality can be affected. The NIA states that such changes might include depression, apathy, anxiety, agitation, delusions, and paranoia.

Alleviating LBD symptoms

Although there’s no cure or prevention for LBD, various symptoms may respond to treatment over time. A comprehensive plan may involve medication, physical therapy, and counseling. Working with an experienced healthcare professional is essential, as certain medications may worsen other symptoms.

The NIA highlights that building a care team is integral to treatment and plays a fundamental role in the management of LBD. Coordinating multiple physicians with caregivers can help the team focus on which of the patient’s symptoms need to be prioritized.

The patient’s autonomy and quality of life are one of the main focuses of a care team. The goal is to provide relief from troubling symptoms, assistance in medical decision-making, emotional and spiritual support, and care coordination. By developing an ongoing dialogue for interventions, care teams can also encourage discussions around creating living wills and healthcare directives for their patients.

Palliative care for LBD patients

Palliative care focuses on helping people with advanced LBD maintain the highest quality of life. It aims to provide pain relief, symptom control, autonomy, guidance, and emotional support for patients as well as their families in their role as advocates and caregivers.

Palliative care also helps patients decide how long they want to take particular treatments. The LBDA states that “accepting palliative care services does not mean that someone has given up hope of a cure. Instead, it signifies recognition that the quality of one’s life is as important as its duration.” The team includes a palliative care doctor, the patient’s general doctor, nurses, physical therapists, psychologists, social workers, and pharmacists.

There are no restrictions on who can receive palliative care. Patients with LBD who can communicate efficiently but require assistance at home with bathing, feeding, or dressing, a nurse for medications, or a physical therapist, can opt for this service.

LBD medication

Certain LBD symptoms can be treated with medication. Medication known for helping Alzheimer’s patients can be used to treat cognitive symptoms. Meanwhile, movement symptoms can be helped with Parkinson’s medication. With the various sleep disorders, each requires different treatments and medications. A stimulant is usually prescribed for those with daytime sleepiness, while it’s best to see your general practitioner for insomnia. Serotonin and norepinephrine reuptake inhibitors (SNRIs) help manage depression and anxiety. Of course, patients should never self-medicate, and their care team and doctors are the ones who will create a medication plan to best fit the person.

Looking after your loved one and yourself

Adjusting to the new role of caregiver for a loved one can be overwhelming. It can take a huge emotional toll not just on the patient adjusting to their new LBD diagnosis but also their close family and friends. Among the LBDA’s vast resources for caregivers is the National Institutes of Health (NIH)’s free LBD booklet, which has comprehensive advice on caring, the road ahead, and available help.

Caregivers should be prepared for an emergency scenario, as sufferers of LBD may experience infections, severe pain, declines in functionality, or unpredictable behavior. If any incidents take place, caregivers play a vital part in informing healthcare professionals and hospital staff of the diagnosis, health conditions, and current medication.

The Family Caregiver Alliance (FCA) also provides extensive resources, from day programs for patients to behavior management strategies and tips on looking after yourself as a caregiver. Another excellent resource is the Administration of Community Living, which provides an eldercare locator for families in the U.S. looking for certified caregivers in their area. A third and extremely useful resource for family and caregivers is found on the LBDA’s website, where a map of the U.S. allows them to find their nearest local support group.

How medical alert systems can help

Additionally, medical alert systems have changed the game regarding patient care. From medication dispensers to wearable medical alert devices, these handy gadgets can improve the safety and overall independence of the LBD patient.

Take, for example, LifeStation, a 24/7/365-day medical monitoring service that provides two-way communication, fire, CO, and fall detection, and activity monitoring through bracelets, watches, necklaces, and home devices.

Various systems, like Medical Guardian, can also help caregivers retrieve vital medical information during an emergency. If caregivers need to step out to run errands, these devices can keep them notified them about their patients via a mobile app. Some systems, like LifeFone, even provide a service for monitoring medication intake.

The future of Lewy Bodies Dementia

With a lack of answers about its cause and risk factors, there’s no imminent cure for LBD. For the moment, the focus is on treating and managing its symptoms. If you think you or a loved one may be struggling with LBD, it’s recommended that you seek out experts: neurologists, geriatricians, neuropsychologists, and geriatric psychiatrists. Following a confirmed diagnosis, creating a thorough care plan with the right team of healthcare providers can improve the quality of life for someone suffering from LBD.

On a positive note, researchers from the Parkinson’s Disease Biomarker Program of the NINDS are expanding their clinical data and biospecimen samples to include LBD. The benefits of being added to this existing database on dementia are numerous. The program has a huge team of dedicated professionals, vast resources, plus the scientific community will have better access to data on LBD. This all increases the chance of building successful clinical trials to treat it and advance our understanding of LBD. But no matter the disease, data and samples from patients are critical to research and finding a cure.

If you, a loved one, or someone you know has been recently diagnosed with LBD, please feel free to share your experiences or ask questions below.