Lewy Body Dementia

Signs, Symptoms, Treatment, and Caregiving for Dementia for Lewy Bodies

Lewy Body DementiaLewy Body Dementia (sometimes called Dementia with Lewy bodies) is a common form of dementia that shares characteristics with both Alzheimer’s and Parkinson’s diseases. Since Lewy Body Dementia (LBD) symptoms resemble other diseases, it can be especially challenging to diagnose correctly. While there is currently no cure for LBD, that doesn’t mean there isn’t hope. Early diagnosis allows for important early treatment that can extend your independence and quality of life. As a caregiver, there is also much you can do to make the life of a loved one with LBD safer and more comfortable.

What is Lewy Body Dementia?

While not as well known as other dementias, Lewy Body Dementia (LBD) is the second most common type of progressive dementia after Alzheimer’s disease, accounting for up to 20 percent of dementia cases worldwide. The disease is caused by the accumulation in the brain of abnormal microscopic protein deposits—named Lewy bodies after the neurologist Frederick Lewy who first observed their effect. These deposits disrupt the brain’s normal functioning, causing it to slowly deteriorate.

LBD can take two forms: dementia with Lewy bodies or Parkinson’s disease dementia. The difference between them lies mainly in how the disease starts. In dementia with Lewy bodies, the person may have a memory disorder that looks like Alzheimer’s but later develop movement and other distinctive problems, such as hallucinations. In Parkinson’s disease dementia, the person may initially have a movement disorder that looks like Parkinson’s but later also develop dementia symptoms. Over time, though, both diagnoses will appear the same. Most people with LBD develop a similar spectrum of problems that include variations in attention and alertness, recurrent visual hallucinations, shuffling gait, tremors, and blank expression, along with various sleep disorders.

While Lewy Body Dementia can bear a striking resemblance to Alzheimer’s disease or Parkinson’s disease, treatment can be very different, making early recognition of the signs and symptoms key to managing the condition.

Signs and symptoms of Lewy Body Dementia

As with Alzheimer’s disease or Parkinson’s disease, the symptoms of Lewy Body Dementia worsen over time, with intellectual and motor functions deteriorating, typically over several years. Despite the overlaps, however, there are symptoms that indicate the disorder is indeed LBD and not another disorder.

While patients with LBD lose cognitive function, they are less prone to the short-term memory loss associated with Alzheimer’s disease. More commonly, they experience greater problems with executive functions of planning, decision-making, and organization, as well as difficulties with visual perception, such as judging and navigating distances. This can cause them to fall frequently or become lost in familiar settings. Lewy Body Dementia can also cause sleep disturbances, including insomnia, daytime sleepiness, and REM behavior disorder, whereby they act out their dreams. Someone with Lewy Body Dementia will also exhibit at least two of three core features:

  • Changes or “fluctuations” in awareness and concentration. The person will swing from a state of alertness to appearing drowsy, confused, or staring into space. These episodes can be unpredictable and last anywhere from a few seconds to several hours. 
  • Spontaneous Parkinson’s-like motor symptoms, such as slowness of movement, rigid muscles, tremor, lack of facial expression, or abnormal gait.
  • Recurrent visual hallucinations or delusions, such as seeing shapes, colors, people, or animals that aren’t there or conversing with deceased loved ones.

It is often these extra signs and symptoms that distinguish LBD from other types of dementia. In short, if you or a loved is experiencing cognitive decline without the archetypal problems with recent memory, it may indicate that you’re dealing with Lewy Body Dementia rather than another type of dementia.

Signs of Lewy Body Dementia

  • Mental decline. Lewy Body patients may experience extreme swings between alertness and confusion or drowsiness, as well as reduced attention span.
  • Recurrent visual hallucinations or depression. Hallucinations, usually related to people or animals, occur in most LBD patients. Depression is also common.
  • Increasing problems handling the tasks of daily living. Tasks that used to be simple may become difficult for a person with Lewy Body Dementia.
  • Repeated falls and fainting.
  • Motor problems such as slow movement, shuffling walk, stiff limbs, or tremors.
  • Sleep disturbances, including insomnia and acting out dreams—physically moving limbs, sleep talking, screaming, hitting, or even getting up and engaging in daytime activities.
  • Fluctuations in autonomic processes. This includes blood pressure, body temperature, urinary difficulties, constipation, and difficulty swallowing.

Parkinson’s, Alzheimer’s, and Lewy Body Dementia

Since Lewy Body Dementia is commonly misdiagnosed for both Parkinson’s and Alzheimer’s, it is helpful to understand how these diseases overlap.

Overlapping Symptoms of Parkinson’s, Alzheimer’s, and Lewy Body Dementia
Parkinson’s and Lewy Body Dementia Alzheimer’s and Lewy Body Dementia

Some of the motor symptoms found in both Parkinson’s and Lewy Body Disease’s patients include:

  • tremors
  • muscle stiffness
  • difficulties with balance
  • shuffling gait
  • stooped posture
  • slow movements
  • restless leg syndrome

Some of the cognitive symptoms found in both Alzheimer’s and Lewy Body’s patients include:

  • behavioral changes
  • decreased judgment
  • confusion and temporal/spatial disorientation
  • difficulty following directions
  • decreased ability to communicate

Diagnosis and treatment of Lewy Body Dementia

Since many of the symptoms can also be caused by other conditions, confirming a diagnosis of Lewy Body Dementia can be challenging. To help your doctor, take a friend or loved one along to appointments and keep detailed notes about how and when your symptoms occur.

How is Lewy Body Dementia diagnosed?

Since the Lewy bodies themselves can be identified only by autopsy, an accurate diagnosis relies heavily on physician awareness of the defining characteristics of the disease. Your doctor or specialist may:

  • Assess your symptoms, such as how long you have had memory problems and the presence of sleep disturbances or hallucinations.  
  • Assess your mental abilities, such as language, organization, and communication skills, attention span, and ability to follow instructions.
  • Conduct a physical examination, including blood tests and review of current medications, to rule out other causes of symptoms.
  • Conduct brain scans. While a brain scan can detect mental deterioration, not the actual Lewy bodies, it may still be helpful in diagnosis.

What is the treatment for someone with Lewy Body Dementia?

While there is no cure at present for LBD, or any medications aimed at specifically treating LBD, doctors are able to treat many of its symptoms. Treatments are aimed at controlling the cognitive, motor, and psychiatric problems associated with the disorder, including hallucinations, depression, and sleep disturbances. There are also a number of self-help strategies that can help improve symptoms.

Medication for Lewy Body Dementia

Medications for the treatment of LBD can offer relief of cognitive, movement, and behavioral symptoms, and may include the same drugs used to treat Alzheimer’s disease and Parkinson’s disease. However, some people with LBD can have extremely adverse reactions to certain medications and may react very differently than patients with Alzheimer’s or Parkinson’s. Some medications can even worsen LBD symptoms, another reason why accurate early diagnosis is so important. Speak with your doctor about possible side effects for any medication prescribed.

  • Your doctor may use cholinesterase inhibitors, such as donepezil and rivastigmine, to treat the cognitive symptoms of Lewy Body Dementia. They can also be effective in treating visual hallucinations and other psychiatric symptoms.
  • Levodopa may help with movement and rigidity in some people with LBD.
  • Melatonin or clonazepam can help treat REM Sleep Behavior Disorder and other sleeping problems.

Dementia with Lewy bodies and neuroleptics

Neuroleptics, or antipsychotics, are strong tranquillizers usually given to people with severe mental health problems. They are sometimes also prescribed for people with dementia to treat hallucinations or other behavior problems. However, if taken by people with LBD, neuroleptics may be particularly dangerous. This class of drugs can induce Parkinson-like side-effects, including rigidity, immobility, and an inability to perform tasks or to communicate. Studies have shown that they may even cause sudden death in people with LBD. If a person with LBD must be prescribed a neuroleptic, this should be done with the utmost care, under constant supervision, and should be monitored carefully and regularly.

According to Lewy Body Dementia Association: Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure).

Self-help tips for living with Lewy Body Dementia

Being diagnosed with an incurable illness, especially one that involves dementia, can be an overwhelming experience. Because the treatment for Lewy Body dementia focuses primarily on symptom management, it’s helpful to take as proactive an approach as possible right away. This means reaching out to loved ones for support, working with your physician to control symptoms, and making lifestyle changes to accommodate the effects of the disease.

Non-medical Treatments for Lewy Body Dementia

  • Physical therapy options include cardiovascular, strengthening, and flexibility exercises, as well as gait training. Physicians may also recommend general physical fitness programs such as aerobic, strengthening, or water exercise.
  • Speech therapy may be helpful for low voice volume and poor enunciation. Speech therapy may also improve muscular strength and swallowing difficulties.
  • Occupational therapy may help maintain skills and promote function and independence. In addition to these forms of therapy and treatment, music and aroma therapy can also reduce anxiety and improve mood.
  • Individual and family psychotherapy can be useful for learning strategies to manage emotional and behavioral symptoms and to help make plans that address individual and family concerns about the future.

Source: LBDA

Caring for someone with Lewy Body Dementia

Caring for someone with Lewy Body Dementia, or any form of dementia, is hugely challenging. Just as LBD can impact every aspect of a person, caring for someone with the disease can impact every aspect of your daily life. You’ll likely face tests of stamina, problem solving, and resiliency. However, your caregiving journey can also be an intensely rewarding experience as long as you take care of yourself and get the support that you need. 

How to help someone manage Lewy Body Dementia

When it comes to helping someone manage the symptoms of LBD,  small things can often make a big difference.

  • Create a routine. It may help people with Lewy Body Dementia to have predictable routines, especially around meal times and sleep times.
  • Establish a nighttime ritual. Try to establish bedtime rituals that are calming and away from the noise of television, meal cleanup, and active family members. Limiting caffeine consumption during the day, discouraging daytime napping, and encouraging exercise can help curb restlessness at night.
  • Modify tasks. Break tasks into easier steps and focus on success, not failure.
  • Walk together. Taking a walk with the patient with LBD is a win-win activity. Being outdoors and exercising is vital for the health and state of mind for both the patient and you.
  • Strengthen senses. Have a doctor evaluate each the patient’s five senses in order to identify and treat any abnormalities. Then ask about exercises to improve them.
  • Make lifestyle changes. To help minimize the risk of fall-related injuries, you can help stabilize blood pressure. Help your loved one stay well hydrated, exercise, take in adequate sodium (salt), avoid prolonged bed rest, and stand up slowly.

Tips for managing behavioral changes

One of the major challenges of caring for a loved one with dementia can be coping with the troubling behavioral changes that often occur. As a caregiver, you can’t change the person with dementia, but you can employ strategies to modify or better accommodate any problem behaviors.

  • Remember, the person with dementia is not being deliberately difficult. Your loved one’s sense of reality may be different to yours, but it’s still very real to him or her.
  • Troubling behavior can often be a reaction to stress or a frustrated attempt to communicate. Try to establish why the patient is stressed or what is triggering the behavior. Is your loved one hungry, thirsty, tired, in pain, frustrated?
  • Speak calmly, softly and use body language. A dementia patient will often respond to your facial expression, tone of voice, and body language far more than the words you choose. Use eye contact, a smile, or reassuring touch to help convey your message.
  • The environment and atmosphere you create while caregiving can help a dementia patient feel calm and safe. Modify the environment to reduce potential stressors such as loud or unidentifiable noises. Try to remain flexible, patient, and relaxed. If you find yourself becoming anxious or losing control, take a time out to cool down.

Care for the caregiver

One of the most important ways that you as a caregiver can help the patient with LBD is to make sure you also take care of yourself. If you don’t get the physical and emotional support you need, you won’t be able to provide the best level of care, and you face becoming overwhelmed. Help yourself cope by learning ways to prevent burnout, garner your own support, and improve your state of mind.

  • Ask for help. Reach out to other family members, friends, or volunteer organizations to help with the daily burden of caregiving. When someone offers to help, let them. Taking regular breaks does not mean you’re being neglectful or disloyal to your loved one. Caregivers who take regular time away not only provide better care, they also find more satisfaction in their caretaking roles.   
  • Schedule daily mini-workouts. Regular exercise releases endorphins that actually keep you happy. Try ten-minute sessions sprinkled over the course of the day if you can’t block out an hour away.
  • Keep up your social ties. Stay connected to friends and family and welcome the support they give you. This will lighten the load of caretaking.
  • Talk to others in similar situations. Caring for someone with dementia can be very hard work—both physically and emotionally. Joining a support group can provide a welcome opportunity to speak frankly about your experiences with other caregivers.
  • Learn how to manage stress. Caregiving for a loved one with dementia can be one of the most stressful tasks you’ll undertake in life. Relaxation techniques such as deep breathing, meditation, rhythmic exercise, or yoga can help reduce stress and boost your mood and energy levels.

More help for Lewy Body Dementia

Alzheimer’s Disease and Dementia Help Center: Educate yourself about Alzheimer’s disease and dementia and make important decisions early to help you feel more in control.

Lewy Body Dementia help

Resources and references

What is dementia with Lewy bodies (DLB)? – Information on what Lewy Bodies are, signs, symptoms and treatments for Dementia with Lewy Bodies. (Alzheimer’s Society)

What is LBD? – Lead article of major website with numerous resources for Lewy Body Dementia. (Lewy Body Dementia Association Inc.)

Lewy Body Dementia – An 11-segment article that includes lifestyle and home remedies, alternative medicine, coping and support. Click “print” to see the complete article without ads. (Mayo Clinic)  

NINDS Dementia With Lewy Bodies Information Page – Definitions, treatments, research, and links to Alzheimer’s Disease organizations. Includes a link to studies accepting patients. (National Institute of Neurological Disorders and Stroke)

Support Groups for Lewy Body Dementia

Support Groups in the U.S. and Canada – Offers a list of support groups in over 30 states and Canada (LBDA)

Dementia Services in the UK – Includes a list of resources for local services, including support groups.  (Lewy Body Society)

Dementia Support in Australia – Includes a list of regional resources, including support groups. (Ozcare)

Caregiver resources

LBD Caregiver Link – In the U.S., talk to a volunteer at 800-539-9767 for referrals to caregiving programs and services or other practical or emotional support. (LBDA)

Information for Carers – In the UK, call 0131-473-2385 for information, help, or caregiving resources. (Lewy Body Society)

Lewy Body Disease Help Sheets – In Australia, call the National Dementia Helpline on 1800 100 500 for help, information, resources and support. (Fight Dementia)

What other readers are saying

“I’ve been praying that you would republish the Lewy Body info. Today I noticed it was up once again. . . I hope you know how much help this info is for caregivers and loved ones. It’s plain English for those with newly diagnosed loved ones searching for understanding and ways to calm fears of the unknown. It’s also a way for those of us that are caregivers to educate others in a less clinical manner. . . I find this info to be spot on with my experience living with and caring for my husband who has Lewy Body Dementia.” ~ California

Authors: Lawrence Robinson and Jeanne Segal, Ph.D. Last updated: August 2015.

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