What Is Lewy Body Dementia, And How Does It Affect People?

Medically reviewed by Nikki Ciletti, M.Ed, LPC
Updated June 4, 2024by BetterHelp Editorial Team

Dementia is an umbrella term for various neurological disorders that affect a person's thinking ability, as well as their body. The most common form of dementia is Alzheimer's disease, followed by vascular dementia. The third most common type is called Lewy body dementia (LBD).

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Lewy body dementia can be hard to cope with

What is Lewy body dementia?

Lewy body dementia, also called dementia with Lewy bodies, involves abnormal protein deposits in the brain. These deposits are made from a protein called alpha-synuclein and have been named Lewy bodies, after Fritz Lewy, a doctor who discovered the proteins and how they affect the mind.

Lewy bodies usually develop in nerve cells found in brain areas associated with memory, movement, and thinking skills. As a result, a person with Lewy bodies experiences a decline in mental functions.

According to the Lewy Body Dementia Association, Lewy body dementia affects 1.4 million adults in the United States. Usually, symptoms appear after age 50, though they can also appear earlier. All genders may be affected by LBD, but men seem to be somewhat more likely to develop the disease. While there is no cure for dementia with Lewy bodies, clinical trials are continually being conducted as experts develop treatments that can alleviate symptoms and slow neurodegeneration. 

LBD vs Parkinson’s disease

When patients experience significant movement problems and then develop dementia, the condition is Parkinson’s disease dementia. A Parkinson’s diagnosis occurs before a Lewy body dementia diagnosis. In this case, physical symptoms develop first with cognitive symptoms showing later. 

Potential causes

Scientists haven't yet pinpointed the exact cause of Lewy body dementia. People researching the disease have learned about factors that increase a person's risk of developing the disorder. The greatest risk factor for dementia with Lewy bodies is aging. Other risk factors include certain health conditions, including Parkinson's disease and REM sleep behavior disorder. Environmental risk factors include exposure to lead, manganese, and certain pesticides. 

Potential symptoms

People with Lewy body dementia may experience various symptoms. Because it is a progressive dementia, symptoms usually begin slowly, and then intensify with time. Ultimately, Lewy body dementia ends in death. Symptoms may progress in a time frame that ranges anywhere from 2 to 20 years before death occurs.

Visual hallucinations 

While hallucinations often appear in the late stages of other forms of dementia, they tend to occur early on in people with LBD. About 80% of people with LBD experience hallucinations that involve seeing, hearing, or smelling things that aren't there. Recurrent visual hallucinations are one of the distinctive symptoms that aid in the diagnosis of LBD.

Concentration issues

A person with LBD may struggle to focus their attention. Alternatively, they may struggle to remain alert and find themselves falling asleep throughout the day.

Thinking difficulties 

LBD often causes symptoms involving thinking and may make a person's thoughts feel disorganized or illogical. One of the other distinctive symptoms of LBD is that cognitive abilities may fluctuate day to day. As the disease progresses, thinking problems can interfere with daily life, as a person struggles to remember which words to say or even where they are or what time it is.

Movement issues 

Not all people with LBD develop significant movement problems, but some do. A change in movement abilities can take place early on, or as the disease progresses. For example, a patient may develop muscle rigidity, or they may experience poor coordination or balance problems. The way they walk may change, as might their handwriting, facial expressions, posture, or voice. 

Sleep problems such as REM sleep behavior disorder

People with LBD often have sleep problems. Some of these are severe enough to be diagnosed as disorders in their own right. For example, a person with LBD is more likely to experience REM sleep behavior disorder, excessive daytime sleepiness, insomnia, and restless legs syndrome.

Mood changes 

People with LBD often develop mood symptoms as their thinking abilities decline. For example, depression, a lack of interest in activities, anxiety, or agitation could occur. In severe cases, patients may experience delusions (strongly held false beliefs) or  paranoia or (a severe and irrational lack of trust of other people).

Miscellaneous symptoms 

Sometimes people with LBD experience other symptoms, often related to their body functions, because of how their autonomic nervous system is being impacted. These can include body temperature changes, blood pressure changes, dizziness, fainting, constipation, a reduced sense of smell, sexual dysfunction, and more.

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Lewy body dementia symptoms worsen as the disease progresses. For example, a person's memory may become worse over time. They may also become more prone to injury, or experience physical or mental changes that keep them from being able to take care of themselves, such as a loss of control over automatic functions. On average, a person dies from Lewy body dementia eight years after developing it. However, in some cases, people live up to 20 years after developing LBD.

Diagnosing

If you or a loved one are experiencing any of the signs of Lewy body dementia, see a doctor. A doctor can ask questions and order the appropriate tests to determine if a person has LBD or something else going on.

Much of the process of diagnosing LBD involves ruling out other possible causes for symptoms. Doctors may order laboratory tests to rule out other diseases and vitamin deficiencies. They may also order brain imaging to look for changes in the brain or other potential causes of dementia. Neuropsychological tests can assess memory and changes to the mind and emotions.

Prevention

Experts haven't yet identified a clear way to prevent Lewy body dementia. However, taking care of basic health by eating a well-balanced diet, exercising regularly, easing stress, sleeping on a regular schedule, avoiding smoking, and spending time with others may help.

Treatment

There is no cure for LBD and no medication to stop or reverse the progression of symptoms. Instead, there are ways to treat common symptoms which often involve medications and different types of therapy. 

For example, a variety of drugs are available to treat symptoms related to the mind, movement, sleep disorders, and mood problems. Patients may also participate in physical and other types of therapy such as speech therapy, occupational therapy, and mental health counseling.

Your healthcare provider will review all the potential benefits and risks of treatment options. Certain medications may hold a greater risk than others and can make symptoms worse. Selective serotonin reuptake inhibitors are often used to treat depression that accompanies LBD. While antipsychotic medications can help relieve symptoms associated with LBD, they may also cause patients to develop neuroleptic malignant syndrome, eventually resulting in kidney failure. 

If you’d like to learn more about the treatment of LBD, the Lewy Body Dementia Association has gathered several resources that can provide guidance and support.  

Supporting a loved one

Receiving a Lewy body dementia diagnosis often feels upsetting, both for the person who received it and their family members. The person diagnosed and those close to them may feel upset, angry, depressed, confused, or scared when thinking about the future.

If your loved one has LBD, support and encourage them, reminding them that they can still live a full life. Encourage them to participate in activities that will keep them functioning for as long as possible, including exercising, socializing, and doing puzzles. Help them acquire equipment that will make everyday tasks easier as their symptoms progress. You can also connect them with support groups, where they can meet people who are experiencing similar challenges. The Lewy Body Dementia Association has a list of local support groups for people with LBD. 

Acting as a caregiver for someone with LBD can be tiring and lead to burnout. While the focus is on the person who is sick, caregivers and family are also emotionally impacted. Engaging in self-care is important for everyone involved in the situation.

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Lewy body dementia can be hard to cope with

Seek help

If you, a family member, or another loved one has Lewy body dementia, consider professional counseling. A therapist can help a person with LBD manage the slew of emotions that arise after receiving such a serious diagnosis. A therapist may be able to help a person gain calm and acceptance while teaching them techniques to help them live better. As LBD often involves a loss of motivation, therapy can be one way to help bring some of that motivation back.

Similarly, caregivers and loved ones of those with LBD may benefit from counseling, as well. A therapist can help caregivers manage difficult emotions, such as sadness or frustration. They can also help with strategies for maintaining patience and kindness during the more difficult moments of caring for someone with LBD.

Online therapy can provide benefits to people coping with LBD and their caregivers alike. And with online therapy, you don’t have to worry about being put on a waiting list or getting to an office across town. Instead, you attend sessions from the comfort of your home, making the process more comfortable and convenient. 

Research shows that online therapy is effective. One study reported that 12 weeks of online treatment led to improvements in depression and anxiety, and these improvements were sustained six months later. 

Takeaway

Lewy body dementia is the third leading cause of dementia and a progressive disease. Many people who develop the disease, along with their loved ones, have trouble coping with both the disease's symptoms and projected outcomes. Speaking with a therapist may help people cope with the emotions and stress surrounding a Lewy body dementia diagnosis.
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