What to know about Lewy body dementia
Lewy body dementia (LBD) is a form of dementia that affects a person’s cognitive abilities and movement. It is a progressive disease, which means that its symptoms get worse over time.
LBD affects an estimated 1.4 million people and their families in the United States. It is the third most common form of dementia, after vascular dementia and Alzheimer’s disease.
This article explains the main signs and symptoms of LBD and provides information on treatment and coping.
What is LBD?
LBD is a progressive disease that occurs due to abnormal brain deposits of a protein known as alpha-synuclein. Experts call these protein deposits Lewy bodies.
According to the National Institute on Aging (NIA), in a healthy brain, alpha-synuclein plays an important role, particularly in the synapses. With LBD, Lewy bodies form inside the synapses. This causes the neurons to work less effectively and die.
Lewy bodies can also cause changes to brain chemicals, affecting a person’s mental abilities, mood, and behavior.
There are two types of LBD:
- Dementia with Lewy bodies: This condition occurs when the Lewy bodies initially develop in both the brain stem and cerebral cortex.
- Parkinson’s disease dementia: This occurs when the Lewy bodies initially develop in the brain stem and then extend to the cerebral cortex over time.
Both forms result from the same brain changes. While the early signs differ, people with either type of LBD will eventually develop similar symptoms.
Whom does it affect?
Scientists do not know why LBD occurs. However, it typically affects people over the age of 50.
Symptoms of LBD are typically mild in the beginning and become more pronounced over time.
According to the NIA, the symptoms of LBD are as follows:
First signs and symptoms
Visual hallucinations may be one of the first symptoms that people develop, causing individuals to see things that are not there.
Visual hallucinations affect up to 80% of people with LBD.
Other hallucinations, such as hearing or smelling things that are not there, are less common but may also occur.
Cognitive problems are the main symptom of LBD.
They can include:
- drowsiness and lethargy
- difficulty concentrating
- memory loss
- staring into space for long periods
It is important to note that the severity of these symptoms can fluctuate. These fluctuations may help a healthcare professional distinguish between LBD and Alzheimer’s disease.
Dementia symptoms also cause difficulties with:
- spatial abilities
LBD can cause movement difficulties, including:
- difficulty swallowing
- more frequent falls
- lack of coordination
- poor posture
- slow or shuffling walk
- handwriting that is smaller than usual
- stiff muscles
- weak voice
Sleep and LBD
Sleep difficulties often occur in people with LBD.
People may experience:
- increased movement during sleep
- falling out of bed
- restless leg syndrome
- talking during sleep
- vivid dreams
- acting out dreams
Behavioral and mood symptoms
The protein deposits in the brains of those with LBD also cause behavioral and mood conditions, such as:
- loss of interest or motivation
LBD can cause many other changes to the body and brain, which leads to symptoms such as:
- dizziness and fainting
- loss of taste or smell
- sexual dysfunction
- urinary incontinence
There is no specific test for LBD. Specialists, such as neurologists and psychiatrists, typically diagnose it based on a combination of test results and the person’s symptoms.
The following tests will help a healthcare professional rule out similar conditions or reach alternative diagnoses:
- a review of symptoms and medical history
- a neurological and physical examination
- assessment of memory and thinking
- blood tests
- sleep studies
- imaging tests
When to seek help
Individuals should seek help if they believe that they or someone they know is showing signs of LBD, including changes in cognition, behavior, movement, or sleep.
Typically, individuals should see a family doctor first, who may perform some tests. The doctor may then refer the individual to a specialist, such as a neurologist or psychiatrist.
To prepare for the appointment, it can be helpful to write out:
- a detailed list of all symptoms, when they began, and their severity
- any relevant medical history or family history
- all medications and supplements taken
- a list of questions for the doctor
It can also be a good idea to bring along a family member or close friend who can provide support and give the doctor more information about symptoms.
Specialists who may help provide treatment
LBD can affect many areas of a person’s life. Therefore, building a specialist care team can provide the most comprehensive support and care for the person.
The NIA note that, in addition to neurologists and other doctors, specialists that can help may include:
- mental health counselors
- physical therapists
- occupational therapists
- speech therapists
- palliative care specialists
- art therapists or music therapists
There is no cure for LBD.
Treatment that is available aims to help manage symptoms and improve a person’s quality of life.
Current treatment options include:
Drugs called cholinesterase inhibitors may help manage cognitive symptoms, such as changes to memory and thinking. They may also reduce hallucinations and delusions.
A healthcare professional may also prescribe atypical antipsychotics off-label.
However, a person should take these with caution. This is because they can cause severe side effects and worsen movement symptoms.
Treatments for movement-related symptoms include:
This prescription medication can help treat the movement issues associated with LBD.
Side effects of carbidopa-levodopa include hallucinations and confusion. As a result, a healthcare professional may prescribe it with caution and start a person on a low dose.
Physical therapy and exercise
Both exercise and physical therapy can improve strength and balance and thus help manage symptoms that affect movement.
Behavior and mood-related symptoms
Behavioral and mood symptoms can be challenging to treat. Options include:
- checking for physical conditions that may be causing behavioral or mood issues, such as injuries or infections
- reviewing medication use, as some drugs can cause side effects that affect behavior and mood
- making changes to a person’s environment to minimize stress and anxiety and to ensure they are getting appropriate levels of stimulation
A person can also take selective serotonin reuptake inhibitors.
Sleeping difficulties may respond to drugs and lifestyle changes, including:
- Clonazepam (Klonopin): This drug can help people with REM sleep disorder, where they appear to act out their dreams. However, it can cause dizziness and cognitive issues.
- Stimulants: These drugs may help those with excessive daytime sleepiness to stay awake.
- Melatonin: This naturally occurring hormone, available in synthetic form, can treat insomnia by making it easier to fall asleep.
- Sleep hygiene: Making changes to diet and behaviors can naturally improve sleep for some people. Examples include being more active during the day, having a set bedtime and wake time, and avoiding caffeine and sugar in the evening.
Treatment to avoid
A 2015 article notes that people with LBD should not take traditional, or first generation, antipsychotic medications, such as haloperidol (Haldol). These drugs can cause severe confusion and serious movement difficulties.
Antipsychotic medications may also increase the risk of death in older adults with dementia.
The NIA note that a person should avoid taking olanzapine and risperidone.
Additionally, they do not recommend the use of vitamins and supplements to treat LBD symptoms.
People with LBD who are taking supplements should tell their doctor about it, because some of these can interfere with medications.
Complementary therapies, especially those that help manage anxiety and mood, can be helpful for people with LBD.
Examples of such therapies include:
- art therapy
- massage therapy
- music therapy
- pet therapy
Tips for caregivers
Caregivers play an important role in the lives of people with LBD.
To ease a person’s symptoms and improve their quality of life, it can be helpful to:
- Establish structure and routines: Daily routines around everyday activities, such as mealtimes, exercise, and bedtimes, can ease anxiety and confusion.
- Make tasks easier: Breaking tasks into easier steps and using adaptive tools and equipment, such as special cutlery, can make life easier for people with LBD.
- Change the environment: Reduce environmental stressors, such as clutter, bright lights, and loud noises.
- Provide enough stimulation: Boredom can make cognitive and mood symptoms worse. It may help to provide adequate sources of stimulation for people with LBD, including audiobooks, puzzles and games, and music.
- Encourage social and physical activities: Meeting friends and family, engaging in exercise, and getting out in nature can all enhance the lives of those with LBD.
- Offer a balanced diet of appropriate foods: Adapt foods to the individual’s needs. Some people may need very soft foods, especially if they have difficulty swallowing. People with sleep issues may need to limit their caffeine and sugar intake.
It is important that caregivers adapt activities and actions to the needs of the person with LBD, which can change over time, as well as from one day to the next.
Tips for communication
When speaking with a person with LBD, who can experience confusion and anxiety, it is important to modify speech. The following tips may help:
- Speak clearly and at an appropriate volume.
- Use simple words and short sentences.
- Adopt a soothing and reassuring tone.
- Present only one idea at a time.
- Point to objects or use picture cards to help get the message across.
- Avoid quizzing the person, which can be distressing.
- Maintain eye contact.
- Wait for a response, which can take time.
- Let the person know you have heard and understood them.
- Validate any concerns or fears they may have.
Communicate with them throughout the day and let them know what is happening, especially in relation to periods of transition, such as before mealtimes or bedtimes or before going on an outing.
This type of communication helps minimize uncertainty and confusion, which can in turn reduce anxiety and distress.
Support for caregivers and families
While often rewarding, caring for others can be challenging. Burnout among caregivers is a valid concern. Therefore, it is important that they take steps to look after themselves as well by:
- asking for help when necessary
- making time for hobbies and enjoyable activities
- exercising regularly
- eating a balanced diet
- trying to get enough rest and sleep
- trying to manage stress through meditation, yoga, or other means
- joining a support group for caregivers
- considering the use of in-home health services
- seeing a doctor or mental health professional if feeling stressed, anxious, or unwell in any way
Caregivers can find additional help and support on the websites of the following organizations:
- Lewy Body Dementia Association
- Alzheimer’s Association
- Eldercare Locator
- Next Step in Care
Complications and outlook
LBD is a progressive condition, with symptoms getting worse over time. Complications that can arise as a result include:
- changes in mood, including depression, anxiety, and aggression
- loss of mobility
- increased risk of falls and injury
- worsening dementia
On average, the life expectancy after receiving a diagnosis is 5–8 years, although this can vary from 2 to 20 years.
LBD is a progressive condition that affects a person’s cognition, movement, behavior, and mood. It can be challenging for those with LBD, as well as their families and caregivers.
However, treatment can help manage the symptoms and improve a person’s quality of life. Individuals with LBD can still enjoy time spent with family and friends and a range of exercises and activities throughout their illness.
People dealing with LBD can benefit from reaching out to others, such as doctors, mental health professionals, and friends and family. Organizations and groups also provide support — both to those with the condition and to their loved ones.