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Lewy Body Disease: Symptoms and Treatment

Lewy Body Dementia (also called Dementia with Lewy bodies) is a form of dementia that shares characteristics with both Alzheimer's and Parkinson's diseases. Lewy Body Dementia (LBD) symptoms resemble other diseases but LBD is especially challenging to diagnose correctly. 

As a caregiver, you may feel discouraged in the face of this dementia. However, by more fully understanding LBD and by using strategies that help, you can make the life of someone with LBD safer and more comfortable and bring more hope and purpose into your own life.

What is Lewy Body Dementia?

Lewy bodies are abnormal microscopic protein deposits in the brain that disrupt the brain's normal functioning causing it to slowly deteriorate. The effects include a degradation of cognitive functioning, similar to Alzheimer's disease, or a degradation of motor control, similar to Parkinson's disease. Lewy bodies are named after Frederick Lewy who first observed their effects

Lewy Body Dementia can start differently in people. Sometimes those with LBD initially have a movement disorder that looks like Parkinson's but later they also develop dementia symptoms. Others have a memory disorder that looks like Alzheimer's but they later develop hallucinations and other behavior problems. Over time most people with LBD develop a spectrum of problems that include great variations in attention and alertness from day to day, recurrent visual hallucinations, shuffling gait, tremors, and blank expression, along with various sleep disorders.

Signs and symptoms of Lewy Body Dementia

The symptoms of Lewy Body Dementia will worsen over time. In general, LBD progresses at about the same rate as Alzheimer's disease, typically over several years. Many of the symptoms of the disorder bear a striking resemblance to Alzheimer's or Parkinson's. Despite the overlaps, however, there are symptoms that indicate the disorder is indeed LBD and not other dementias and the difference is important.

Signs of Lewy Body Dementia

  • Mental decline. Lewy Body patients may experience reduced alertness and lowered 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 sleep disturbances. This includes insomnia and acting out dreams.
  • 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

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 working with your physician to control symptoms and make lifestyle changes to accommodate the effects of the disease.

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. A brain scan can detect mental deterioration, but not the actual Lewy bodies.

Once other possible conditions have been ruled out, the optimal route for diagnosis is a thorough medical history that focuses on the pattern of symptoms and looks particularly for the hallucinations and sleep disturbances that are common to LBD patients.

What is the treatment for someone with Lewy Body Dementia?

While there is no cure at present for LBD, doctors may prescribe medication for its symptoms. Treatments are aimed at controlling the cognitive, motor, and psychiatric problems associated with the disorder, including hallucinations and depression

Medication for Lewy Body Dementia

Medications are especially challenging in dealing with Lewy Body Dementia. A medication that doesn't work for one person may work for another person. Some people with LBD may have extremely adverse reactions to certain medications.

Dementia with Lewy bodies and neuroleptics

Neuroleptics are strong tranquillizers usually given to people with severe mental health problems. They are sometimes also prescribed for people with dementia. However, if taken by people with LBD, neuroleptics may be particularly dangerous. This class of drugs 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).

Safe medication for Lewy Body Dementia

Medication has been used successfully to relieve for symptoms of depression and sleep disorders. The caregiver needs to work closely with the patient’s doctor to come up with a safe course of medication.

Caring for someone with Lewy Body Dementia

Caring for someone with Lewy Body Dementia, or any form of dementia is challenging, but can also be rewarding if you take care of yourself while caring for your patient. 

Proactive ways to help someone manage Lewy Body Dementia

Taking a proactive approach to managing the symptoms of LBD is important and small things can make a big difference.

  • Become informed. Learn as much as you can about Lewy Body Dementia and how it is likely to affect your loved one specifically, given his or her health history, age, and lifestyle.
  • 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. Limit caffeine, discourage napping, and encourage exercise.
  • 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—of both of 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 behavioral 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.

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. Help yourself cope by learning ways to prevent burnout, garner your own support, and improve your state of mind.

  • Take regular breaks. While you may feel like you should be focusing all your efforts on the person with LBD, you are more likely to be able to support them if you can take time out for yourself. Recharge your own batteries and prevent isolation by seeing friends and keeping up activities away from care giving.
  • Schedule daily mini-workouts. Regular exercise releases endorphins that actually keep you happy. Ten-minute sessions sprinkled over the course of the day can be easier to block out than 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. You may find it a relief to speak frankly about your experiences with other caregivers.
  • Seek opportunities to relax and have fun. You don't need to talk to in order to play. Most people enjoy playing nonverbally with babies or pets and it's also possible to play nonverbally with dementia patients.

Related Articles

Understanding Dementia

Understanding Dementia – Explore the different types of dementia and learn to identify the signs and symptoms.

Parkinson's Disease and Parkinson's DementiaParkinson's Disease and Parkinson's Dementia – Learn about the relationship between Parkinson's Disease and dementia, and what you can do to manage symptoms.

Alzheimer’s Disease

Alzheimer’s Disease – The earlier you recognize the symptoms of Alzheimer’s disease and seek help, the better your chances of getting the care you need and maximizing your quality of life.

Other Dementias

Pick’s Disease

Pick’s Disease – Learn about Pick's Disease, its signs, symptoms, support and treatment methods.

Huntington's Disease

Huntington’s Disease – Learn about the symptoms and treatment for Huntington's Disease, and ways to live with the illness.

Creutzfeldt-Jakob Disease

Creutzfeldt-Jakob Disease (CJD) – Learn about Creutzfeldt-Jakob Disease, its different types, and how it is treated.

Caregiving

Dementia & Alzheimer’s Care Dementia & Alzheimer’s Care – Use this guide for family members to help plan and prepare for the road ahead.

Support for Alzheimer's & Dementia Caregivers

Support for Alzheimer’s and Dementia Caregivers – How to take care of yourself both physically and emotionally as you’re caring for someone with Alzheimer’s disease or dementia.

Resources & References

Helpguide’s Yellow Pages
Resources for public assistance, social services, and other health and human services.

Facts About Dementia (UK) – 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)

Authors: Jocelyn Block, M.A., Robert Segal, M.A. and Jeanne Segal, Ph.D. Last updated: August 2013.

©Helpguide.org. All rights reserved. This reprint is for information only and NOT a substitute for professional diagnosis and treatment. Helpguide.org is an ad-free non-profit resource for supporting better mental health and lifestyle choices for adults and children.

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