Lewy Body Dementia Treatment: Medications, Therapies and Care

Lewy body dementia treatment and symptom management

After a diagnosis, one of the first questions people and families often ask is what Lewy body dementia treatment is available.

There is currently no cure for Lewy body dementia (LBD), and no treatment has been proven to stop or reverse the disease. However, several medications, therapies and practical approaches can help manage particular symptoms and support quality of life.

Because LBD can affect thinking, movement, sleep, mood, behavior and automatic body functions, treatment usually needs to be individualized. A medication that helps one symptom can sometimes make another symptom worse.

For this reason, people with LBD should ideally work with a healthcare professional who understands the condition and its unusual medication sensitivities.

Lewy Body Dementia Treatment: What Are the Main Options?

A comprehensive treatment plan may include medications, physical therapy, occupational therapy, speech-language therapy, counseling, exercise, changes to the home and support for family caregivers.

Treatment depends on which Lewy body dementia symptoms are causing the greatest difficulty.

The National Institute on Aging explains that LBD treatment generally focuses on managing symptoms rather than treating the underlying disease itself.

Medications Used in Lewy Body Dementia Treatment

Medication needs to be selected carefully in LBD because people with the condition can be particularly sensitive to certain drugs.

Never start, stop or change prescription medication without discussing it with the person’s healthcare professional.

Cholinesterase Inhibitors for Cognitive Symptoms

Lewy body dementia treatment with cholinesterase inhibitor medications

Cholinesterase inhibitors are medications originally developed to treat symptoms of Alzheimer’s disease.

Examples include donepezil, rivastigmine and galantamine.

These medications act on acetylcholine, a brain chemical involved in memory and thinking. In people with LBD, they may help with cognitive symptoms and can sometimes also reduce hallucinations or other behavioral symptoms.

In the United States, the FDA has approved rivastigmine for cognitive symptoms associated with Parkinson’s disease dementia. Other cholinesterase inhibitors may be used by clinicians for LBD depending on the person’s circumstances.

Possible side effects can include nausea, diarrhea and dizziness.

Treatment response varies, so the person’s doctor will consider whether the benefits outweigh any side effects.

Memantine

Memantine may sometimes be considered for Lewy body dementia symptoms

Memantine is another medication originally developed for Alzheimer’s disease.

Some healthcare professionals may consider memantine for people with Lewy body dementia, particularly when cognitive impairment has become more significant.

However, research results in LBD have been mixed, and memantine is not FDA-approved specifically for Lewy body dementia.

The decision to use it should therefore be individualized and discussed with a doctor experienced in dementia care.

Levodopa for Movement Problems

Levodopa may help movement symptoms associated with Lewy body dementia

People with LBD may develop Parkinson’s-like movement symptoms such as stiffness, slow movement, difficulty walking and trouble getting out of a chair or bed.

Levodopa, commonly used for Parkinson’s disease, may improve some of these symptoms.

This can be particularly relevant for people with Parkinson’s disease dementia.

However, levodopa can sometimes worsen hallucinations, confusion or other psychiatric symptoms in people with LBD.

For this reason, doctors may avoid treating very mild movement symptoms with medication. If levodopa is considered appropriate, treatment is generally introduced cautiously and monitored closely.

Treatment for Depression and Anxiety

Depression and anxiety are relatively common in people with LBD.

A doctor may consider antidepressant medication if these symptoms significantly affect the person’s quality of life.

The National Institute on Aging notes that selective serotonin reuptake inhibitors (SSRIs) and serotonin-norepinephrine reuptake inhibitors (SNRIs) may work well for some people with LBD.

You can read more about depression and dementia on ReaDementia.

Counseling and psychological support may also be valuable, particularly after a new diagnosis or when the person and family are adapting to changes in independence.

Treatment for REM Sleep Behavior Disorder

Sleep disorders are an important part of LBD care.

One characteristic problem is REM sleep behavior disorder, in which a person may physically act out dreams by talking, kicking, punching or moving while asleep.

A doctor may recommend melatonin or, in some circumstances, low-dose clonazepam.

Clonazepam can cause problems such as dizziness, unsteadiness and worsening thinking, so it needs careful medical supervision.

A sleep specialist may also investigate other problems such as sleep apnea, restless legs syndrome or excessive daytime sleepiness.

Good daytime activity and reducing long or frequent daytime naps may also help some people sleep better at night.

Read more about dementia and sleep problems.

Hallucinations and Antipsychotics: An Important LBD Warning

Hallucinations are common in Lewy body dementia.

If hallucinations are not frightening or dangerous, medication may not always be necessary.

Sometimes reassurance, reducing stress, changing the environment or redirecting the person’s attention can be enough.

Cholinesterase inhibitors may also reduce hallucinations in some people.

However, treatment becomes more complicated when hallucinations, delusions or agitation create significant distress or safety concerns.

People with Lewy body dementia can have severe reactions to antipsychotic medications.

These reactions may include dramatically increased confusion, severe sleepiness, worsening Parkinson’s-like symptoms, low blood pressure and fainting.

Traditional antipsychotics such as haloperidol should generally be avoided in people with LBD because they can cause dangerous reactions.

Other antipsychotics, including olanzapine and risperidone, may also cause significant problems and are generally avoided where possible.

In situations where an antipsychotic is considered necessary, specialists may sometimes use medications such as quetiapine or clozapine. These decisions require careful medical supervision, with the lowest effective dose used for as short a time as practical.

A rare but potentially life-threatening reaction called neuroleptic malignant syndrome can also occur. Symptoms can include high fever and severe muscle rigidity.

If these symptoms develop after starting an antipsychotic medication, seek urgent medical attention.

Treating Blood Pressure, Constipation and Other Autonomic Symptoms

Lewy body dementia can affect the autonomic nervous system, which controls body functions that normally happen automatically.

These problems may include low blood pressure when standing, fainting, constipation, urinary problems and difficulty regulating body temperature.

Low blood pressure when standing is called orthostatic hypotension.

Simple approaches such as getting up slowly, elevating the legs or using compression stockings may help some people.

Increasing fluids or salt may sometimes be recommended, but this should only be done when a healthcare professional considers it appropriate because other health conditions can make increased fluid or salt intake unsuitable.

Constipation may respond to exercise, dietary changes or medications recommended by a doctor.

Bladder medications also need particular care because some can worsen confusion or cognitive symptoms in LBD.

Non-Drug Lewy Body Dementia Treatment Options

Non-drug Lewy body dementia treatment options and therapies

Medication is only one part of managing LBD.

The Lewy Body Dementia Association recommends a comprehensive approach that may involve several types of healthcare professionals.

Physical Therapy and Exercise

Physical therapists can help people with movement, balance, strength and walking.

Programs may include flexibility exercises, strengthening, cardiovascular activity and gait training.

Regular physical activity may also support general health, mobility and independence.

The appropriate type and intensity of exercise will depend on the person’s health and abilities.

Occupational Therapy

Occupational therapists focus on helping people continue everyday activities as safely and independently as possible.

They may help with dressing, bathing, eating, using household equipment and adapting routines.

You can learn more in our guide to occupational therapy and dementia.

An occupational therapist can also assess the home and suggest practical changes that reduce fall risk or make daily activities easier.

Speech and Language Therapy

Speech-language pathologists can help when LBD affects speech volume, communication or swallowing.

Swallowing assessment becomes particularly important if a person coughs, chokes, holds food in their mouth or repeatedly develops chest infections.

The therapist may recommend strategies to make eating and drinking safer.

Psychological Support and Counseling

Mental health professionals can help people with LBD and family members adjust to the emotional effects of the diagnosis.

Counseling may help with anxiety, depression, frustration, changing relationships and future planning.

Cognitive stimulation and other structured activities may also provide opportunities for mental and social engagement.

Music and Expressive Activities

Supportive music and expressive activities for people with Lewy body dementia

Music and other expressive activities may provide enjoyment, social interaction and relaxation.

The National Institute on Aging notes that music or expressive arts therapists may provide meaningful activities that can reduce anxiety and improve well-being.

Activities should be chosen according to the person’s interests rather than treated as a cure or replacement for medical care.

You may also be interested in our articles about music therapy and dance therapy.

What About Vitamins and Supplements?

Vitamins and supplements are sometimes promoted as natural treatments for dementia.

However, the National Institute on Aging states that vitamins and supplements have not been extensively studied as treatments for LBD symptoms and are not recommended as Lewy body dementia treatment.

Supplements can also interact with prescription medicines.

A vitamin may still be appropriate if testing shows that a person has a specific deficiency, but that is different from using supplements to treat LBD itself.

Tell the person’s doctor about all supplements, vitamins and over-the-counter medicines they take.

Home Modifications and Safety

Home modifications that can improve safety for Lewy body dementia

Although home changes do not treat the underlying disease, they can make daily life considerably safer and easier.

A dementia-friendly home may include:

  • removing loose rugs and other trip hazards
  • reducing unnecessary clutter
  • providing good lighting
  • using handrails and grab bars where appropriate
  • arranging furniture to create clear walking paths
  • using simple and familiar layouts
  • reducing excessive noise or stimulation

These changes can be particularly important because people with LBD may experience balance problems, visual perception difficulties and fluctuations in attention.

Routines, Activities and Social Support

Simple, predictable routines can reduce unnecessary confusion and stress.

Regular times for waking, meals, activities and sleep may be helpful.

Meaningful activities can also provide enjoyment and maintain social contact.

The activity should suit the person’s abilities. A complicated task that creates frustration is unlikely to be helpful simply because it is mentally stimulating.

Support groups can be valuable for both people with LBD and caregivers.

Talking with other families who understand the condition can provide practical ideas as well as emotional support.

As the disease progresses through the Lewy body dementia stages, caregivers may also need increasing practical assistance and respite care.

Palliative Care for Lewy Body Dementia

Palliative care is not limited to the final days of life.

It focuses on symptom relief, comfort, quality of life, coordinated care and making sure treatment reflects the person’s goals and values.

According to the National Institute on Aging, palliative care can begin relatively early in LBD and continue alongside other treatments.

It can also help families with advance care planning and decisions about future support.

Building a Lewy Body Dementia Care Team

LBD often affects several different body systems, so care frequently involves more than one healthcare professional.

A care team may include:

  • a primary care physician
  • a neurologist or movement disorder specialist
  • a physical therapist
  • an occupational therapist
  • a speech-language pathologist
  • a mental health professional
  • a pharmacist
  • palliative care professionals when appropriate

If possible, include a doctor with experience treating Lewy body dementia because medication sensitivities and symptom fluctuations can make treatment more complicated than with some other dementias.

You can read more about finding an appropriate doctor for dementia.

When Should Treatment Be Reviewed?

LBD symptoms and medication responses can change over time.

Contact the healthcare team when there is a significant change, particularly after starting or changing medication.

Medical review is especially important with:

  • sudden or severe confusion
  • dramatically worsening hallucinations or delusions
  • repeated falls or fainting
  • new difficulty walking
  • difficulty swallowing or repeated choking
  • extreme sleepiness
  • new severe stiffness
  • fever or signs of infection
  • significant changes after taking a new medicine

Sudden changes should not automatically be assumed to represent progression of dementia. Infection, pain, constipation, medication side effects and other medical conditions can also cause rapid deterioration.

Final Thoughts

There is currently no single Lewy body dementia treatment that can cure the disease or stop its progression.

Instead, treatment focuses on managing individual symptoms while protecting the person’s independence, safety and quality of life.

Cholinesterase inhibitors may help some cognitive and behavioral symptoms, levodopa may help movement problems, and other medications may be considered for sleep, depression or anxiety.

At the same time, medication must be used particularly carefully in LBD because some drugs, especially certain antipsychotics, can cause serious reactions.

Physical, occupational and speech therapy, appropriate exercise, psychological support, safer surroundings and caregiver support can all form important parts of a comprehensive care plan.

Treatment should be reviewed as the person’s symptoms change, and decisions should be made with a healthcare professional familiar with Lewy body dementia.

References and Further Reading

National Institute on Aging. How Is Lewy Body Dementia Treated and Managed?

Lewy Body Dementia Association. Treatment Options for LBD.

NHS. Dementia With Lewy Bodies: Treatment.

15 Lewy Body Dementia Symptoms [LBD]

lewy body dementia symptoms

It is essential to know the most common and not so common Lewy body dementia symptoms as it can help with treating a person early.

You also need to understand that this type of dementia is, according to statistics, the third most common one. Alzheimer’s disease/dementia and vascular dementia are the only two more frequent.

Fun fact: Robin Williams (August 2014) had Lewy body dementia (LBD), and it is one of the main reasons for suicide.

Someone who is affected by LBD develops problems with thinking, movement, mood, alertness and starts showing signs of depression.

Of course, diagnosing LBD is not as easy as it sounds. There are other brain diseases that also have similar symptoms and are often confused.

What is Lewy body dementia?

Lewy bodies are another name for the significant increase in the creation of proteins that occupy the brain. This same protein is also linked to Parkinson’s disease.

Similarly, those with Lewy body dementia have alike symptoms compared to Alzheimer’s disease.

Moreover, predominantly, more men than women are affected by LBD in their sixties and above. Also, if a family member has Lewy body dementia or Parkinson’s disease, relatives are at higher risk.

Common Lewy Body Dementia Symptoms

1. Changes In Reasoning

Lewy body dementia symptoms - changes in reasoning
Lewy body dementia (LBD) or dementia with Lewy bodies (DLB) presents itself as progressive dementia that affects thinking, independent function, and reasoning.

Abnormal protein deposits that accumulate in certain areas of the brain over time damage its cells over resulting in the condition.

Depending on different circumstances, everyone affected by the condition will display differing symptoms from the onset. A few people experience changes in reasoning seeing them struggle to process information and plan.

Their flow of ideas may become unclear, disorganizer or seem illogical. Changes in behavior are also common when someone with the condition rationalizes things differently.

The person may gravitate towards risky behavior that is out of the norm because of their impaired judgment.

2. Visual Hallucinations

Lewy body dementia symptoms - visual hallucinations
Hallucinations are amongst the most commonly experienced Lewy body dementia symptoms. In fact, about 80% of people with LBD experience hallucinations marked by seeing things that in real sense aren’t present.

In the beginning, someone with the condition will often see animals or children who aren’t present.

Rarely, a few people may also experience nonvisual hallucinations meaning that they respond to smells or hear things that don’t exist.

Often, if the hallucinations aren’t disruptive in nature then there isn’t a cause for concern or treatment isn’t required.

However, if the person begins to respond in harmful or dangerous ways concerning their hallucinations, it’s crucial to seek prescribed medication.

3. Movement Difficulties (Parkinsonism)

movement difficulties parkinsonism
Some people suffering from DLB might never experience movement problems or it could take several years for them to start having this challenge.

It projects itself initially as things like handwriting changes in mild forms that it may easily be overlooked.

Often referred to as Parkinsonism, it describes the set of symptoms experienced during the offset of Parkinson’s disease dementia.

A person can experience the same symptoms with LBD in the later stages.

Some of the other signs that accompany it include:

  • Muscle stiffness
  • Loss of coordination
  • Slow movement when walking
  • Stooped posture
  • Shaking during rest
  • Balancing problems
  • Reduced facial expressions
  • A weakened voice when speaking
  • Difficulties swallowing

4. Changes In Body Function Regulation

changes in body function regulation is a sign of Lewy Body
People with LBD suffer from significant changes affecting the part of their nervous system that is responsible for automatic functions.

It includes functions related to the heart, muscles, and glands.

The Lewy body dementia symptoms that point out to a shift in body function regulation include:

  • Experiencing sudden body temperature changes
  • Heightened sensitivity to cold and heat
  • Dizziness
  • Frequent falls
  • Constipation
  • Blood pressure issues
  • Urinary incontinence
  • A diminished sense of smell

Some people with LBD will start suffering from restless leg syndrome which is a condition that compels them to move their legs while resting.

It may even happen while sleeping and the only way to stop the unpleasant sensation is by moving to relieve the discomfort.

5. Problems With Cognition

problems with cognition a sign of Lewy Body Dementia
A person with LBD will often stare into space for prolonged periods of time and they also usually appear drowsy and lethargic. Problems with cognition is some of the common Lewy body dementia symptoms a majority of people experience.

It’s also identifiable from unpredictable changes in concentration, wakefulness, attention, and alertness throughout the day as well as from day to day.

The person will seem better one day only for them to re-occur the next day or worsen as the days progress. Typically, cognitive fluctuations are some of the symptoms that help physicians distinguish the condition from Alzheimer’s disease.

6. Sleep Problems

sleep problems
Sleep disorders can arise as one of the Lewy body dementia symptoms, but they often go undiagnosed. Visiting a sleep specialist can help with treating sleep problems as well as possibly diagnose the root cause.

Most people with DLB experience insomnia which is attributed to difficulties falling or staying asleep. People with LBD also experience excessive sleeping during the day where the person sleeps for two or more hours.

A few people also exhibit REM disorder which is a condition where someone seems to act out their dreams. In the case of REM, the person might talk while sleeping, display violent movements, and may even fall out of bed.

7. Memory Loss & Dementia

memory loss dementia
Degenerative thinking abilities or severe memory loss marked eventually set in and affect a person’s ability to perform their normal daily activities.

Memory loss is a primary Lewy body dementia symptom and it’s marked by forgetfulness, misidentifying objects, challenges multitasking, reasoning and problem-solving.

Confusion is yet another symptom that accompanies dementia and the person may suddenly have difficulties making sense of time and place.

However, unlike with Alzheimer’s dementia, the memory problems do not manifest at first but they start becoming apparent as LBD progresses.

Dementia can also alter mood and behavior leading the person to start displaying loss of initiative or poor judgment.

8. Inattentiveness and Confusion

inattentiveness and confusion
Related to memory loss, a person with LBD may become more inattentive than usual combined with sudden confusion.

It’s best described as spacing out where someone in a situation that requires their undivided attention wanders off in their thoughts.

Several other symptoms collectively contribute to inattentiveness including difficulties with sleep. Once again it is something that will affect someone’s ability to perform daily tasks and it’s more pronounced for people who are employed.

They often find it difficult to get work done and grasp new information which leads to frustration for the individual and those around them.

As the condition progresses, it also affects both written and spoken speech.

9. Trouble Interpreting Visual Information

trouble interpreting visual information
People with LBD have difficulties processing visual information with regard to object size, perceiving objects as overlapping, and they also display difficulties with counting tasks.

For instance, they may have problems drawing common objects like a clock and the symptom is worse in people who also experience visual hallucinations.

They also have trouble perceiving spatial information leading them to misjudge the distance between objects.

Often, a few of these visual issues can be handled either by prescribing antipsychotic medications or with the help of an eye-care practitioner.

Oftentimes, the diagnosis of visual problems can help in making the correlation to DLB as opposed to other neurodegenerative conditions.

10. Depression

depression
People with LBD have a sense of understanding about the changes that they are experiencing. Before they receive a diagnosis, it can be frustrating trying to understand the root cause of the problems they are experiencing.

Often, they cannot control most of the symptoms on their own and they may feel like a burden to family or friends trying to help them through the challenging time.

It leads them to develop a feeling of sadness and they also start feeling worthless because of their inability to get tasks started or complete them.

Problems with sleep as well as eating only aggravates the situation, and soon people with LBD go into depression.

11. Apathy

apathy
Along with depression comes the disinterest in enjoying fun activities or even normal tasks. Apathy as one of the Lewy body dementia symptoms leads someone to withdraw from social interactions. Someone with LBD becomes upset easily, and they often resort to pacing around or wringing their hands because of their inability to feel settled.

They also repeat words or phrases severally which impedes their ability to hold a decent conversation. They can recognize their shortcomings in social settings which makes them rationalize that withdrawing from such situations is the solution.

It becomes more pronounced when the person becomes bedridden perhaps owing to the progression of one of the other symptoms.

12. Unpredictability Of Symptoms

unpredictability of symptoms
One of the striking signs of DLB is the fact that the severity of symptoms changes from time to time. The shifts are often dramatic and someone can never tell when they are going to strike and in what form.

Often, it can give a false sense of hope that someone with the condition is cured only for the symptoms to come back in more severe forms. The shifts in “good days and bad days” makes it somehow easy to recognize that there is an existing health problem.

Subsequently, early diagnosis can come about from catching on to these unusual changes at the very start.

13. The One-Year Rule

the one year rule
Doctors typically use the one-year rule to make a diagnosis distinction between Lewy bodies dementia and Parkinson’s disease.

The rule of thumb is that cognitive difficulties precede movement issues by more than a year when someone has Parkinson’s diseaseis suffering from Parkinson’s disease dementia.

However, in the case of LBD, the cognitive problems may start concurrently with movement problems or within a year of developing issues with cognition.

The symptoms of Lewy bodies dementia are treatable on their own and complete recovery is based on their severity. However, much like all other forms of dementia, there is still no cure for this type of dementia.

14. Staring Into Space/Zoning Out

staring into space
If a person is staring into space, it does not necessarily mean he or she has Lewy body dementia. However, once they keep doing it over and over again, over a longer period of time, you need to start taking things into consideration.

Indeed, staring into space or zoning out is one of Lewy body dementia symptoms, you should be aware of. For your information, they can stare into objects far away or items nearby.

One of the reasons they might begin to stare or completely lose track of what is happening around them is due to hallucinations. We already mentioned the latter above, so please re-read it if necessary.

15. Imperfect Digestive Process

imperfect digestive process
Since Lewy body dementia affects all sorts of different parts of the body, one of the symptoms is an imperfect digestive process. A patient can experience all kinds of inconveniences, like dizziness, constipation and bowel issues.

If the body does not get enough nutrients through quality food, an array of other conditions can occur that can worsen dementia. Not just that, but rapidly speed up the progress.

As a caregiver, it is crucial to understand the ill person’s eating habits even from before the symptoms and the possibility of dementia become a thing.

You should act immediately and take the person to the doctor as soon as possible.