Alternative Lewy Body Dementia Treatments: Therapy & More

Alternative Lewy Body Dementia Treatments: Therapy & More

Lewy body dementia (LBD) is a neurodegenerative disorder characterized by the accumulation of clumps of proteins in the brain which affect its function. At the moment, there is no treatment to stop the brain damage caused by this condition.

Instead, current strategies rely on trying to slow down the progression of dementia symptoms. For many patients, this means a treatment plan including one or more medications. While these drugs can help relieve some symptoms, they should be used with caution. For example, antipsychotics used to treat psychological and emotional symptoms can cause serious side effects, including sudden changes in consciousness, confusion, and hallucinations. 

At Neural Effects, we offer a non-drug treatment for patients with Lewy body dementia: a combination of exercise and cognitive stimulation therapy (CST). Although CST was originally developed for patients with Alzheimer’s disease, patients with Lewy body dementia also respond in a positive way. Cognitive stimulation therapy (CST) can delay cognitive and physical decline, help patients communicate and socialize, and reduce physiological and behavioral symptoms. Whether or not you’re taking medication for LBD symptoms, you can participate in and benefit from cognitive stimulation therapy.

In this article, we’ll cover:

We also include answers to frequently asked questions (FAQs) at the end of the post.

Neural Effects uses the latest evidence-based techniques to diagnose and help dementia patients. We are located in Provo, Utah and serve anyone in Salt Lake County or the Utah County area. We are in network for most types of medical insurance. Schedule your evaluation today.

Signs and Symptoms of Lewy Body Dementia

Lewy Body Dementia illustration

While some treatments are appropriate regardless of symptoms, others depend on which symptoms you are experiencing. Not every patient experiences the same symptoms. Symptoms depend partly on where the Lewy bodies start to accumulate in the brain. The most common symptoms include changes in cognition, movement, sleep, behavior, and whole-body symptoms caused by dysfunction of the autonomic nervous system (ANS). 

Cognitive Symptoms

Lewy body dementia causes a variety of symptoms which affect cognitive function, including: 

  • Visual hallucinations: These are present in more than two-thirds of patients with Lewy body dementia and are usually an early symptom. Other types of hallucinations, such as smelling or hearing things that are not present, are less common but may also occur. This is the reason many patients with this type of dementia stop driving.

  • Fluctuating cognitive skills: Patients experience periods of being alert and coherent in between periods of being unresponsive or confused, with disorganized, unclear, or illogical ideas. This type of cognitive impairment can appear from day to day or happen within the same day. This fluctuation is very common in Lewy body dementia and may help distinguish it from Alzheimer’s disease. They often struggle with problem-solving, decision-making, planning, focus, attention, and memory. Other changes include poor judgment, confusion about time and place, and difficulty with language and numbers.

  • Difficulty staying alert: Patients struggle to stay alert and focused during the day. They don’t seem aware of what’s going on around them and appear to ‘switch off.’

  • Visuospatial difficulties: Patients have difficulties judging distances and seeing objects in 3D. For example, patients may not see the edge of a step on the stairs, which increases the risk of falls. 

Movement Problems

Some patients don’t experience significant movement problems for several years, while others see them early on. Symptoms related to movement may be very mild at first (for example, writing quality begins to worsen) but will get progressively worse with time. Movement problems may include:

  • Muscle rigidity or stiffness
  • Shuffling gait
  • Tremors or shaking, commonly when resting
  • Falls
  • Stooped posture
  • Loss of coordination
  • Smaller handwriting than was usual for the person
  • Limited facial expressions
  • Difficulty swallowing
  • Weak voice

Sleep Disturbances

Sleep problems are common in patients with Lewy body dementia and can start many years before diagnosis. Sleep-related disorders may include:

  • Rapid Eye Movement (REM) sleep behavior disorder: Patients physically reenact their dreams, ranging from simple hand gestures to violent thrashing, punching, and kicking. These patients often have difficulty separating dreams from reality when they wake up. This kind of sleep disorder is very common in patients with Lewy body dementia and Parkinson’s disease.

  • Poor sleep: Patients fall asleep easily during the day, sleeping for hours, and then have restless, disturbed nights. Patients often experience erratic sleep patterns, restless leg syndrome, and insomnia.

Changes in Behavior

Many patients with Lewy body dementia experience changes in behavior and mood, and these worsen as the person’s thinking abilities decline. These changes may include:

  • Depression
  • Lack of interest in normal activities
  • Lack of interest in social interactions
  • Anxiety
  • Repeating the same questions over and over
  • Feeling angry or fearful when a loved one is not present
  • Agitation and irritability
  • Difficulty getting settled 
  • Suffering from delusions or strongly-held opinions not based on evidence
  • Paranoia
  • Extreme and irrational distrust of others

Symptoms Triggered by Dysfunction of the Autonomic Nervous System

The autonomic nervous system (ANS) is a part of the nervous system that regulates essential bodily functions, including heart rate, blood pressure, breathing, sweating, digestion, and many others. Lewy body dementia can cause a condition called dysautonomia, which means the autonomic nervous system (ANS) is not working properly. This condition may cause:

  • Changes in body temperature
  • Problems with blood pressure
  • Dizziness (often leading to falls)
  • Fainting
  • Sensitivity to heat and cold
  • Sexual dysfunction
  • Urinary incontinence
  • Constipation
  • A poor sense of smell

When Do These Symptoms Develop?

Although each patient is different, these symptoms typically develop in two very specific patterns. This has led to the division of Lewy body dementia into two types: dementia with Lewy bodies and Parkinson’s disease dementia. The main difference between these two types is when certain symptoms first occur:

  • Dementia with Lewy bodies – The first symptoms are usually associated with cognitive skills and sleep, which leads to a high rate of false diagnoses of Alzheimer’s disease. Over time, these patients also develop the movement problems associated with this type of dementia. 

  • Parkinson’s disease dementia – Patients experience movement issues (characteristic of Parkinson’s disease) first and then develop cognitive changes. It’s important to note that not all patients with Parkinson’s disease will develop dementia, but the risk is increased.

As the symptoms progress, both patients with dementia with Lewy bodies and Parkinson’s disease dementia will experience similar symptoms and will struggle to manage everyday tasks.

How is Lewy Body Dementia Treated?

Woman exercising with personal trainer

There is currently no cure for Lewy body dementia, but there are several pharmacological and non-pharmacological options to slow down cognitive and physical decline. 

Treatment via Medications

Several drugs are available to treat Lewy body symptoms. Find a trusted, knowledgeable health professional who knows your situation and what medication you’re taking, as certain drugs can make some symptoms worse. 

Cognitive Changes

Some medications used to treat Alzheimer’s disease also may be used to treat the cognitive symptoms of Lewy body dementia (LBD), including cholinesterase inhibitors donepezil (Aricept) and rivastigmine (Exelon). These drugs can also help reduce psychiatric symptoms and the frequency and severity of hallucinations in the early stages of Lewy body dementia. At the moment, there is no evidence to support the use of memantine for LBD patients. 

The U.S. Food and Drug Administration has approved rivastigmine (Exelon) to treat cognitive symptoms and hallucinations specifically for patients with Lewy body dementia and Parkinson’s disease. Several other drugs are currently being tested concerning their efficacy in Lewy body dementia patients. 

Movement Symptoms

Movement problems are usually treated with the same medications as used for patients with Parkinson’s disease, with a drug called levodopa being the most commonly used. 

This drug can help patients walk easier, get out of bed, and move around, but it doesn’t stop or reverse symptoms. In addition, side effects can be quite severe and include hallucinations and other psychiatric or behavioral problems. Almost one in three patients with Lewy body dementia develop psychotic symptoms from levodopa. If movement symptoms are mild, the medical advice is to avoid levodopa due to its side effects and instead turn to occupational or physical therapy. 

Sleep Disorders

Sleep problems are common in patients with Lewy body dementia. For patients with severe or worsening sleep issues, clonazepam is the most commonly used drug. This drug is used to control seizures and relieve panic attacks, but it can be effective to treat sleep issues in very low doses. However, side-effects include dizziness, unsteadiness, and problems with thinking. Melatonin, a naturally occurring hormone used to treat insomnia, can also be useful alone or with clonazepam.

Behavior and Mood Problems

Behavioral, mood problems, and other neuropsychiatric symptoms often develop in patients experiencing hallucinations, delusions, pain, illness, stress, or anxiety. 

These patients can be prescribed antidepressants to treat psychosis, depression, and anxiety. These meds should be reviewed regularly to make sure they are helping and that the side effects are mild. 

In some cases, antipsychotic medications are needed to treat more severe mental health symptoms. At the moment, Pimavanserin is the only FDA-approved drug to treat the hallucinations and delusions associated with Parkinson’s disease and Lewy body dementia, but neurology specialists can prescribe other meds, including haloperidol. These drugs should only be used as a last resort when the patient’s behavior interferes with their care or the safety of their caregivers.

These medications can cause severe side effects, including confusion, extreme sleepiness, and low blood pressure. In rare cases, a potentially fatal condition called neuroleptic malignant syndrome can occur. Symptoms include high fever, muscle rigidity, and kidney failure. When the medication is used, it’s better to use the lowest possible dose for the shortest period of time.

Cognitive Stimulation Therapy and Exercise: An Alternative Lewy Body Dementia Treatment

Treatment strategies to treat patients with Lewy body dementia mostly rely on the type of medication-based interventions described above. Often, these treatments only show modest benefits and are associated with strong side-effects such as nausea, headaches, and vomiting.  

At Neural Effects, we saw the need to develop a better alternative treatment program for patients with Lewy body dementia and Parkinson’s disease dementia. As such, we offer the EMPOWER treatment program, which uses a combination of exercise and cognitive stimulation therapy (CST). 

Although most resources using CST focus on patients with Alzheimer’s, this therapy is starting to be used with other types of dementia, including Lewy body dementia. For example, a recent study found extremely positive results using cognitive stimulation therapy (CST) both for patients and caregivers. The authors found improvements in cognition, concentration, communication, relationships with others, and self-esteem.  

Before treatment at Neural Effects, patients go through a detailed neuropsychological exam (also called a neurocognitive evaluation) which allows our team to identify exactly how Lewy body dementia has affected their physical and cognitive skills. We assess physical abilities, including reflexes, eye movements, balance, and posture, and evaluate patients for signs of anxiety, depression, or stress. This initial exam typically lasts 2 to 2.5 hours. All our tests are standardized and can be repeated at a later date to monitor the patient’s progress over time.

All of our patients need to complete this exam, even if they already have a dementia diagnosis. If patients don’t have a diagnosis, we can coordinate with their physician to see if they have dementia and, if so, what type.

After this evaluation, we write a cognitive care plan (CCP). Everyone we assess receives a CCP, even patients who do not have dementia or do not wish to continue with treatment. This document contains important information regarding their health. The CCP includes: 

  • Results from the assessment
  • Diagnosis
  • Risk factors and how the disease is likely to progress
  • Lifestyle changes that may help the patient
  • Suggestions for how the family can get involved
  • Recommended treatment options at Neural Effects

If patients wish to continue treatment, our plan includes sessions run twice a week for seven weeks, for a total of 14 one-hour group therapy sessions. These sessions are led by two trained facilitators working with a group of six patients. 

Sessions start with 10-15 minutes of physical exercise, usually done on a stationary bike for safety. Some of our patients have movement problems, such as tremors and loss of coordination, that restrict what exercises they can do safely. Our therapists are trained to recognise these problems and adapt exercises to what patients can do. 

Exercise is an important part of treatment. Physical exercise promotes blood flow and triggers a phenomenon in the brain called post-exercise cognitive boost (PECB). In turn, PECB leads to the release of an important chemical called brain-derived neurotrophic factor (BDNF), which makes the brain more receptive to subsequent therapy.

Afterward, patients engage in multiple activities designed to stimulate cognitive skills such as thinking, focus, problem-solving, and memory. These activities include, for example, discussion of past and present events and topics of interest, word games, puzzles, music, and creative or practical activities. The sessions also allow patients to socialize with each other, which can further help slow down the progression of symptoms.

If our therapists think that patients may benefit from treatments we can’t offer, we refer them to specialists such as neurologists, physical therapists, or psychologists.  

Caregivers and family members can attend the first session to learn more about CST. This way, they can help patients at home by repeating some of the activities and games. We also educate family members about lifestyle changes that can help their loved ones, including eating a balanced diet, engaging in regular exercise, following good sleep patterns, and keeping in contact with loved ones.

Neural Effects uses the latest evidence-based techniques to diagnose and help dementia patients. We are located in Provo, Utah and serve anyone in Salt Lake County or the Utah County area. We are in network for most types of medical insurance. Schedule your evaluation today.

More Ways to Treat Patients with Lewy Body Dementia

Seniors playing music

There are many other ways to help patients with Lewy body dementia, including specific types of therapy to address specific symptoms and lifestyle changes to increase quality of life. 

If you want to find out more about each of these therapies or lifestyle changes, we’ve written in more detail about them in our articles on dementia treatment options and natural dementia treatment at home. In this section, we present a brief overview of how some alternative treatments can be used for patients with Lewy body dementia. 

Protect Mental Well-Being and Improve Mood

Patients with Lewy body dementia can become agitated and distressed because they’re having hallucinations or simply struggling to understand what’s happening around them. In order for these patients to live independently (for as long as possible) and control symptoms, they must stay mentally healthy. 

Ways to improve mental well-being and mood include:

  • Keeping a good social life with friends, family members, or local support groups. This can be combined with activities that the patient enjoys, like going for a walk or gardening, for example.

  • Engaging in meaningful and enjoyable activities to increase confidence and self-esteem.

  • Following a healthy and balanced diet, including avoiding fatty and processed foods.

  • Engaging in talking therapies, such as counseling or cognitive behavioral therapy (CBT), for example. This can help patients come to terms with their diagnosis and discuss their feelings.

  • Engaging in cognitive rehabilitation, where the patient learns ways to retain cognitive skills to perform everyday tasks and to compensate for impairments.

  • Engaging in reminiscence therapy, where patients talk about past events. This is shown to improve memory and reduce agitation and symptoms of depression. 

  • Engaging in music therapy or art therapy, which can slow down cognitive decline as well as improve behavior and well-being in patients and their carers.

  • Engaging in aromatherapy, which can help reduce agitation and control aggressive behavior.

Help with Movement Problems

Patients with movement problems may benefit from the following therapies: 

  • Physical therapy to address balance issues, shuffling gait, and Parkinsonian features present in patients with Lewy body dementia.

  • Occupational therapy to help patients stay independent for as long as possible. Therapists advise on adaptations in the home and suggest physical exercises to increase fitness. 

  • Speech and language therapy to help patients who develop problems with communication or swallowing, both of which are common in patients with Lewy body dementia.

Further reading: Physical therapy for dementia and occupational therapy for dementia

Improve Sleep Patterns

Probably one of the most difficult symptoms for a patient with Lewy body dementia to cope with is poor sleep. It makes all other symptoms worse and significantly reduces the quality of life. 

A few ways to get more restful nights include:

  • Engaging in regular physical activity during the day.

  • Following a strict routine: Go to bed and get up at the same time everyday.

  • Limiting daytime napping to 20-30 minutes, ideally early in the afternoon.

  • Avoiding alcohol, caffeine, and nicotine in the evening.

  • Keeping the bedroom dark, quiet, well-ventilated, and at a comfortable temperature.

Some patients with Lewy body dementia act out their dreams and may move their arms and legs violently. It may be safer for partners to sleep in a separate bed and to put a mattress on the side of the bed in case the patient falls or jumps out while they’re sleeping. 

Frequently Asked Questions (FAQ)

Here are answers to some frequently asked questions about Lewy body dementia. 

What is Lewy body dementia?

Lewy body dementia is a neurodegenerative disease characterized by the accumulation of abnormal clumps in the brain of a protein called alpha-synuclein. These deposits — called Lewy bodies after the German doctor, FH Lewy, who first identified the condition — affect different areas of the brain and lead to problems with thinking, movement, behavior, and mood. 

These symptoms occur because the accumulation of Lewy bodies in the brain causes the loss of certain neurons that produce two important neurotransmitters (neurotransmitters are chemicals that carry messages between brain cells). One of these messengers is called acetylcholine and plays a vital role in thinking, memory, and learning. The second is called dopamine and is important for movement, motivation, sleep, and mood. 

Like Alzheimer’s, Lewy body dementia is a progressive disease. This means symptoms are mild at first but slowly worsen over time. Patients experience a decline in thinking and movement abilities. In the final stages of the disease, patients depend entirely on caregivers and need specialized geriatric care. How quickly symptoms get worse varies from patient to patient, depending on overall health, age, and type of symptoms.

How common is Lewy body dementia?

After Alzheimer’s disease, Lewy body dementia is the second most common type of dementia, and it’s estimated that between 0.5 and 2 per 1,000 people develop the condition each year.

Who is most likely to be affected by Lewy body dementia?

Lewy body dementia is usually diagnosed in older adults (over 50), but it can develop in younger patients. As a general rule, males are more likely to have Lewy body dementia than females. In addition, a family history of Lewy body dementia and Parkinson’s disease also increases the risk of developing this condition. 

What causes Lewy body dementia?

What causes the accumulation of Lewy bodies in the first place is still a mystery. Having certain conditions, such as Parkinson’s disease or sleep disorders, increases the risk of patients developing Lewy body dementia. In addition, some studies seem to suggest that mutations in three genes —  APOE, SNCA, and GBA — increase the risk, but further research is needed. 

What are the differences between Lewy body dementia and Alzheimer’s disease? 

Especially in the early stages of the disease, patients with Lewy body dementia are often diagnosed with Alzheimer’s disease because the symptoms are so similar. As the disease progresses, it becomes easier to see the differences and get an accurate diagnosis for patients. 

Key differences

  • Memory loss tends to be more visible in Alzheimer’s disease than in Lewy body dementia (but Lewy body dementia can also cause severe cognitive problems in addition to the more common symptoms associated with judgment and visual perception).

  • Movement symptoms are more likely in patients with Lewy body dementia (but patients with Alzheimer’s can also experience problems with walking and balance).

  • Hallucinations, sleep problems, and dysfunction of the autonomic nervous system are more frequent in patients with Lewy body dementia.

What does getting a Lewy body dementia diagnosis involve?

Diagnosing Lewy body dementia is challenging because early symptoms can be confused with Alzheimer’s disease or even psychiatric disorders. Briefly, to assess patients, healthcare professionals will:

  • Ask for a detailed medical history, current medication list, and symptoms. It’s important to mention all symptoms involving thinking, movement, sleep, behavior, or mood. Patients should also provide a list of all current medications, including prescriptions, over-the-counter drugs, vitamins, and supplements. Certain medications can worsen symptoms of dementia.

  • Conduct a physical examination of balance, strength, and muscle stiffness. 

  • Conduct a neurological exam to check for cognitive skills, including memory, word recall, attention, and visual-spatial skills, among others.

  • Request imaging tests, such as MRI or CT scans. While these tests can’t diagnose Lewy body dementia, they can help rule out other causes, such as bleeding in the brain or a tumor.

  • Order blood tests, such as tests for deficiencies in thyroid hormone or vitamin B12, or tests for conditions such as syphilis and HIV. These tests can help rule out other conditions known to cause the same symptoms. 

  • Recommend sleep studies to check for REM sleep behavior disorder. Typically, this involves sleeping in a lab overnight with sensors to monitor heart, brain activity, breathing patterns, arm and leg movements, vocalizations, and more. 

After receiving a diagnosis, patients with Lewy body dementia may benefit from seeing healthcare professionals specialized in dementia and/or movement disorders. 

Further reading: Types of doctors that treat dementia

What can I expect if I (or a loved one) have Lewy body dementia?

Each patient with Lewy body dementia is different, and it’s impossible to predict how quickly the disease will progress. What we do know is that there are ways to slow down the progression of symptoms — such as treatment at Neural Effects — while allowing the patient to live independently for as long as possible. 

Neural Effects uses the latest evidence-based techniques to diagnose and help dementia patients. We are located in Provo, Utah and serve anyone in Salt Lake County or the Utah County area. We are in network for most types of medical insurance. Schedule your evaluation today.