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What is Lewy Body Dementia?

What is Lewy Body Dementia and how does hospice care for patients with LBD?

Lewy body dementia is among the more common forms of dementia, affecting more than 1.4 million people annually in the United States. “Lewy body dementia” is an umbrella term that is used to describe two closely-related dementia illnesses: Parkinson’s disease and dementia with Lewy bodies (DLB).

Parkinson’s disease and dementia with Lewy bodies share very similar symptoms throughout their progression. These similarities are a major factor in why DLB is difficult for most physicians to diagnose and why a diagnosis of DLB can only be fully confirmed via postmortem autopsy.

Symptoms of Parkinson’s Disease

Parkinson’s disease is a form of Lewy body dementia that is characterised by:

  • Tremors in the body — a frequent and uncontrollable shaking of the face, hands, arms, and legs

  • A lack of balance and overall coordination in the body

  • Stiffness of the arms, legs, and torso and general slowness of movement

Symptoms of Dementia with Lewy Bodies

Dementia with Lewy bodies is primarily characterized by the following symptoms:

  • Memory loss, particularly memories involving recent events

  • Recurring delusions and vivid visual hallucinations

  • Decline in ability to communicate, think, and process information

  • Bodily symptoms that closely mirror Parkinson’s disease, such as stiffness and lack of balance

  • Rapid Eye Movement Sleep Behavior Disorder (RBD) which causes vivid dreams, constant tossing and turning, talking, and excessive — sometimes violent — motions during sleep.

The Difference in Diagnosing Parkinson’s versus Dementia with Lewy Bodies

Though closely related, Parkinson’s and DLB are primarily differentiated by the order in which symptoms manifest in the patient.

The diagnosis is most commonly Parkinson’s disease if:

The bodily symptoms of Parkinson’s disease are experienced before symptoms of cognitive decline

Cognitive symptoms manifest a year or later after the diagnosis of Parkinson’s symptoms

The diagnosis is most commonly dementia with Lewy bodies if:

Cognitive decline symptoms begin to manifest first, prior to any symptoms of Parkinson’s disease

When dementia-related symptoms arise within a year of physical, movement-related symptoms

What are Lewy Bodies?

Special proteins called alpha-synuclein proteins are required for healthy neuron (nerve cell) function in the brain. These special proteins are particularly prevalent near the brain’s synapses, where messages are communicated and transferred within the brain.

However, should these alpha-synuclein proteins begin to clump together, they displace other cells in the neuron that are required for healthy function. These clumps of alpha-synuclein proteins, called Lewy bodies, are named after Frederic Lewy, who first discovered this behavior of abnormal protein clumping in 1912.

As Lewy bodies begin to displace more and more of the other cells required for healthy brain function, they negatively impact the brain’s normal chemical processes and transference of information. Lewy bodies manifest in many key areas of the brain, including:

Lewy body dementia manifests within the brainstem, which is responsible for the body's sleep processes.

The brainstem, which is chiefly responsible for the body’s sleep processes.

Lewy body dementia affects the brain's cerebral cortex, the portion of the brain responsible for thought, language, communication, and information handling.

The cerebral cortex, the portion of the brain responsible for controlling thought, language, communication, and information handling

Lewy body dementia affects the brain's limbic cortex, which controls emotional reactions, personality, and behavior.

The limbic cortex, which regulates our emotional reactions, personality, and behavior

Lewy body dementia damages the midbrain, the portion of the brain that regulates movement.

The midbrain, the portion of the brain that regulates movement

Lewy body dementia negatively affects the brain's hippocampus, which controls memory, spatial navigation, and long-term memory.

The hippocampus, which creates new memories, regulates spatial navigation, and stores and recalls long-term memories

Over time, the progression of DLB leads to the decline of a patient’s ability to recall things from memory, communicate, move, and properly function when performing the tasks of everyday life.

When Should Someone with Lewy Body Dementia be Referred to Hospice?

Generally speaking, seeking hospice care for a terminally-ill patient sooner, rather than later, is preferred, as families report higher levels of overall care satisfaction when seeking hospice care earlier in the end-of-life process. The sooner the hospice referral is made by the patient’s physician, the sooner hospice can begin helping your loved one achieve better comfort, and caregivers and families can get the help they need in caring for their loved one.

Signs that someone with Lewy body dementia should be referred to hospice care

Though patients and family members can have the end-of-life discussion with a physician at any time after the terminal diagnosis, there are a few key warning signs that can signal that hospice care should be pursued for a patient diagnosed with Lewy body dementia.

  • The patient is unable to perform activities of daily living, such as dressing, walking, eating, and bathing without assistance.

  • The patient has fecal or urinary incontinence.

  • The patient cannot speak meaningfully and is unable to consistently communicate clearly with others.

  • The patient has received treatment for a urinary tract infection (UTI), pressure ulcer, fever, aspiration pneumonia, low serum albumin, or has had sudden, unintentional weight loss in the past year.

When the hospice care option is pursued sooner, the patient, family, and caregiver can receive the help of a expertly-trained hospice team that is ready to provide the patient, and everyone impacted by the terminal diagnosis, with the care and support they need.

How Does Hospice Provide Care for Patients with Lewy Body Dementia?

Though Lewy body dementias are incurable illnesses, hospice can provide treatment that significantly improves a patient’s end-of-life experience. Using a holistic, patient-centric approach to care, hospice can provide care for the mind, body, and spirit of a Lewy body dementia patient and relieve families of some of the burden that Lewy body dementia brings to everyone impacted by the diagnosis.

Physical care practices for Lewy body dementia

Hospice, in pursuit of providing optimal comfort for terminally-ill patients, focuses on minimizing physical discomfort through the use of:

  • Physical therapy that focuses on improving flexibility, strength, and cardiovascular health

  • Specialized medication designed to reduce pain and reduce the severity of Lewy body dementia symptoms

  • Speech therapies to help curb the erosion of speech function, voice volume, and rebuild muscular strength in the jaw, throat, and mouth, to aid in swallowing and talking

  • Assistance with activities of daily living, such as dressing, eating, and toileting

Psychosocial, spiritual, and emotional care for Lewy body dementia

A terminal Lewy body dementia diagnosis is often a heavy blow to a patient’s mental and emotional wellness. Hospice recognizes the impact of a terminal diagnosis upon not only the patient, but the patient’s family and friends as well. The hospice care team provides:

  • One-on-one psychosocial therapy between a trained specialist and the patient to help the patient understand and cope with the difficult emotions that accompany a terminal illness

  • Family therapy sessions to help family members understand and process the the end-of-life journey, how they can support the patient, and the caregiver — who is commonly a member of the patient’s family

  • Music, aroma, and pet therapies that can help improve mood, promote movement, and provide emotional healing

  • Chaplains, a key part of the hospice team, provide spiritual counseling and help patients find peace and reconciliation with family and friends at the end of life

  • Bereavement counselors can help patients understand and cope with the anticipatory grief that commonly accompanies a terminal diagnosis, and can help families process their grief after the patient’s death, for up to 13 months after the death

Complete End-of-Life Care for those with Lewy Body Dementia

Lewy body dementia is a cruel disease that robs those diagnosed of their ability to function independently and gradually erodes their ability to act, think, and speak with clarity. However, by arming yourself with a better understanding of the disease, and knowing how hospice can help those diagnosed, you can be a positive force of support and information for friends, family, and loved ones facing the disease.


Help bring comfort, healing, and hope.

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  1. Adams, Carolyn E., Julia Bader, and Kathryn V. Horn. "Timing of Hospice Referral: Assessing Satisfaction While the Patient Receives Hospice Services." Home Health Care Management & Practice. U.S. National Library of Medicine, 2009. Web. 1 June 2016.
  2. Bendor, Jacob, Todd Logan, and Robert H. Edwards. "The Function of α-Synuclein." U.S. National Library of Medicine, 2013. Web. 1 June 2016.
  3. Powers, Richard E., MD. "Management of the Hospice Patient with Dementia." Bureau of Geriatric Psychology, n.d. Web. 1 June 2016.
  4. Savica, Rodolfo, MD, MSc, Brandon R. Grossardt, MS, James H. Bower, MD,MSc, Bradley F. Boeve, MD, J. Eric Ahlskog, PhD,MD, and Walter A. Rocca, MD,MPH. "Incidence of Parkinsonism With Dementia." Incidence of Dementia With Lewy Bodies and Parkinson Disease Dementia. Division of Epidemiology, Department of Health Sciences Research, Mayo Clinic, 16 Sept. 2013. Web. 1 June 2016.

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