Understanding Lewy Body Dementia: A Guide for Families

Published on October 2, 2023

Updated on February 24, 2024

Lewy Body Dementia (LBD) is a complex and challenging condition that affects millions of individuals worldwide. As a with years of experience, I understand the importance of providing families with clear and compassionate information about what to expect when a loved one is diagnosed with LBD. In this article, we will discuss what LBD is, its common symptoms and progression, as well as practical tips for providing care and support throughout the journey, from onset until the end of life.

What is Lewy Body Dementia (LBD)?

lewy body dementia combined picture of clinical pathology and history

Lewy Body Dementia is a type of progressive brain disorder characterized by abnormal protein deposits called Lewy bodies in the brain. These deposits disrupt the normal functioning of brain cells, leading to cognitive, physical, and behavioral changes. LBD is a challenging condition as it shares symptoms with other neurodegenerative disorders like Alzheimer's and Parkinson's disease, making diagnosis and management complex.

Lewy Body Dementia in Comparison to Other Types of Dementia

Lewy Body Dementia (LBD) exhibits unique characteristics that set it apart from other forms of dementia. To provide clarity, let's explore the key distinctions between LBD and two common forms of dementia: Alzheimer's disease and vascular dementia:

1. Presence of Lewy Bodies

  • LBD: LBD is defined by the presence of abnormal protein deposits called Lewy bodies in the brain. These Lewy bodies disrupt brain function and contribute to the characteristic symptoms of the disease.
  • Alzheimer's Disease: Alzheimer's disease is primarily characterized by the accumulation of amyloid plaques and tau tangles in the brain, distinct from Lewy bodies.
  • Vascular Dementia: Vascular dementia is associated with vascular damage in the brain due to factors like strokes or reduced blood flow, but it does not involve Lewy bodies.

2. Motor Symptoms

  • LBD: LBD often presents with motor symptoms resembling Parkinson's disease, including muscle stiffness, tremors, shuffling gait, and postural instability.
  • Alzheimer's Disease: While Alzheimer's may involve some motor symptoms in advanced stages, they are not a hallmark of the disease as in LBD.
  • Vascular Dementia: Vascular dementia may lead to motor problems if it affects areas of the brain responsible for movement, but motor symptoms are not as prominent as in LBD.

3. Visual Hallucinations

  • LBD: Visual hallucinations, where individuals see things that are not present, are a common early symptom of LBD.
  • Alzheimer's Disease: Visual hallucinations are not typically a characteristic of Alzheimer's disease in the early stages.
  • Vascular Dementia: While visual disturbances can occur in vascular dementia, they are usually not as pronounced as in LBD.

4. Fluctuations in Cognitive Function

  • LBD: LBD is known for fluctuations in cognitive function, with individuals experiencing periods of relative clarity followed by confusion.
  • Alzheimer's Disease: Alzheimer's disease typically involves a more steady and gradual decline in cognitive function.
  • Vascular Dementia: Fluctuations in cognitive function can also occur in vascular dementia but may not be as prominent as in LBD.

5. Psychiatric Symptoms

  • LBD: LBD often presents with psychiatric symptoms such as depression, anxiety, , and paranoia.
  • Alzheimer's Disease: While behavioral and psychological symptoms can occur in Alzheimer's, they may not be as frequent or severe as in LBD.
  • Vascular Dementia: Psychiatric symptoms are also possible in vascular dementia but may vary in intensity.

6. Response to Medications

  • Lewy Body Dementia (LBD): Individuals with LBD can be highly sensitive to certain medications, including antipsychotics, which can worsen symptoms.
  • Alzheimer's Disease: Medications targeting cognitive symptoms may provide some benefit in Alzheimer's.
  • Vascular Dementia: Treatment focuses on underlying vascular risk factors and may include medication to manage symptoms.

Lewy Body Dementia (LBD) differs from other types of dementia due to the presence of Lewy bodies, motor symptoms resembling Parkinson's disease, prominent visual hallucinations, fluctuations in cognitive function, and psychiatric symptoms.

Recognizing the Symptoms of LBD

Cognitive Changes

  • Fluctuating attention and alertness: People with LBD may have times when they are very sleepy or confused, and other times when they are more alert and aware. They may have trouble paying attention or staying focused on a task. They may also have trouble switching from one activity to another.
  • Memory loss and confusion: People with LBD may have trouble remembering things that happened recently, such as names, dates, or events. They may also get mixed up about where they are, what time it is, or who they are with. They may repeat themselves or ask the same questions over and over.
  • Visual hallucinations: People with LBD may see things that are not really there, such as animals, people, or objects. They may also hear, smell, or feel things that are not there. These hallucinations may seem very real and scary to them. They may talk to or react to these hallucinations as if they were real.
  • Difficulty with problem-solving and reasoning: People with LBD may have trouble solving problems, making decisions, or planning ahead. They may also have trouble understanding or following instructions, rules, or directions. They may make mistakes or act inappropriately in social situations.

Motor Symptoms:

  • Parkinsonian features: People with LBD may have some of the same movement problems as people with Parkinson's disease, such as slow movements, stiffness, and tremors. They may have trouble starting or stopping a movement or keeping a steady pace. They may also have changes in their voice, facial expression, or posture.
  • Unsteady gait and balance problems: People with LBD may have trouble walking, standing, or sitting. They may lose their balance or fall easily. They may also have trouble turning, bending, or reaching. They may need a cane, walker, or wheelchair to get around.
  • Frequent falls: People with LBD may fall more often than normal, especially when they are walking, changing positions, or getting up from a chair or bed. They may injure themselves or break bones when they fall. They may also have trouble getting up after a fall.

Psychiatric Symptoms:

  • Anxiety and depression: People with LBD may feel nervous, worried, or sad. They may have trouble sleeping, eating, or enjoying activities. They may also lose interest or motivation in things they used to like. They may cry or withdraw from others.
  • and paranoia: People with LBD may have false beliefs that are not based on reality, such as thinking that someone is trying to harm them, steal from them, or replace them. They may also be suspicious or distrustful of others, even their family or friends. They may accuse others of lying, cheating, or plotting against them.
  • Irritability and : People with LBD may get angry, frustrated, or restless easily. They may have mood swings or outbursts. They may also have trouble calming down or relaxing. They may pace, fidget, or wander around.

Understanding the Progression of LBD

The progression of Lewy Body Dementia can vary from person to person, but it generally follows these stages:

  1. Early Stage:
    • Mild cognitive changes, which may be mistaken for normal aging or stress.
    • Occasional visual hallucinations or motor symptoms.
  2. Middle Stage:
    • Cognitive decline becomes more apparent, affecting daily activities and communication.
    • Increased motor symptoms, such as parkinsonism and falls.
    • Behavioral changes, including mood swings and irritability.
  3. Late Stage:
    • Severe cognitive impairment, leading to a loss of ability to recognize loved ones.
    • Profound motor difficulties and increased risk of and aspiration.
    • Dependency on caregivers for all activities of daily living.

Caring for a Loved One with LBD

Providing care for someone with LBD requires patience, compassion, and understanding. Here are some practical tips to support your loved one throughout their journey:

Create a Safe Environment

Remove hazards and install handrails to prevent falls: People with LBD may have trouble walking or balancing, and they may fall easily. You can make your home safer by removing things that they could trip over, such as rugs, cords, or clutter. You can also install handrails or grab bars in the bathroom, bedroom, and stairs to help them get up or down. You can also use a bed rail or a low bed to prevent them from falling out of bed.

Ensure proper lighting to reduce visual hallucinations: People with LBD may see things that are not really there, especially in the dark or in dim light. You can help them by making sure that there is enough light in the rooms that they use, such as lamps, nightlights, or windows. You can also avoid using mirrors, shiny objects, or patterns that may confuse them or make them see things.

Establish a Routine

Maintain a consistent daily schedule to help reduce anxiety and confusion: People with LBD may feel more calm and secure if they have a regular routine that they can follow. You can help them by keeping a consistent schedule for their meals, medications, activities, and bedtime. You can also use a calendar, a clock, or a whiteboard to remind them of the date, time, and what they need to do. You can also avoid changing their environment or their caregivers too often, as this may confuse them or make them anxious.

Effective Communication

Use simple, clear language and give one-step instructions: People with LBD may have trouble understanding or remembering what you say, or they may get distracted easily. You can help them by using simple, clear language and speaking slowly and calmly. You can also give them one-step instructions at a time, and repeat them if needed. You can also use gestures, pictures, or objects to help them understand. You can also avoid arguing, correcting, or criticizing them, as this may upset them or make them feel bad. Be patient and allow time for the person to process information.

Engage in Meaningful Activities

Encourage activities that your loved one enjoys and can still participate in safely: People with LBD may still enjoy doing things that they used to like, such as listening to music, reading, gardening, or playing games. You can help them by finding activities that match their interests, abilities, and mood. You can also adapt the activities to make them easier or safer for them, such as using large-print books, puzzles, or cards, or using tools with larger handles or buttons. You can also join them in the activities or praise them for their efforts, as this may make them feel happy and valued.

Seek Support and Education

Join support groups to connect with others facing similar challenges: Caring for someone with LBD can be stressful and lonely. You can find support and comfort by joining support groups where you can meet other caregivers who understand what you are going through. You can also learn from their experiences, tips, and resources. You can find support groups online, by phone, or in person. You can also ask your doctor, , or local Alzheimer's Association for help.

Educate yourself about LBD to better understand and manage the symptoms: LBD is a complex and unpredictable disease that can affect different people in different ways. You can learn more about LBD by reading books, articles, or websites that explain what LBD is, how it affects the brain and the body, and what treatments are available. You can also ask your doctor, nurse, or pharmacist any questions that you have about LBD or the medications that your loved one takes. You can also attend workshops, seminars, or webinars that teach you more about LBD and how to care for someone with LBD.

Self-Care for Caregivers

Take breaks and ask for help when needed: Caring for someone with LBD can be physically and emotionally exhausting. You need to take care of yourself too, so that you can stay healthy and strong. You can do this by taking breaks from caregiving, such as going for a walk, taking a nap, or doing something that you enjoy. You can also ask for help from your family, friends, neighbors, or professionals, such as home health aides, , or adult day care. You can also use services such as meal delivery, transportation, or housekeeping to make your life easier.

Prioritize your physical and emotional well-being: Caring for someone with LBD can affect your health and happiness. You can protect your well-being by eating well, sleeping enough, exercising regularly, and seeing your doctor when needed. You can also manage your stress by using relaxation techniques, such as breathing, meditation, or yoga. You can also express your feelings by talking to someone you trust, such as a friend, a counselor, or a support group. You can also seek professional help if you feel overwhelmed, depressed, or anxious.

Signs and Symptoms that Indicate Hospice Care May Be Appropriate for Someone with Lewy Body Dementia

Lewy body dementia (LBD) is a progressive disease that affects the brain and causes problems with memory, thinking, movement, behavior, and mood. People with LBD may experience visual hallucinations, fluctuations in alertness, sleep disorders, and Parkinson's-like symptoms. LBD can also affect the autonomic nervous system, which controls blood pressure, heart rate, digestion, and other bodily functions.

As LBD progresses, the person may need more care and support from family members and health professionals. is a type of care that focuses on comfort and quality of life for people with terminal illnesses and their families. can be provided at home, in a hospice facility, or in a nursing home.

Some signs and symptoms that may indicate hospice care is appropriate for someone with LBD are:

  • The person has frequent or severe infections, such as pneumonia, urinary tract infections, or skin infections.
  • The person has difficulty swallowing, eating, or drinking, and is at risk of choking, aspiration, or dehydration.
  • The person has lost a significant amount of weight or has poor nutrition.
  • The person has severe pain that is not relieved by medication or other treatments.
  • The person has frequent falls or injuries that affect their mobility or safety.
  • The person has severe , anxiety, depression, or psychosis that affect their well-being or the well-being of their caregivers.
  • The person has difficulty breathing, has low oxygen levels, or needs .
  • The person has frequent or prolonged seizures or episodes of altered consciousness.
  • The person has a rapid decline in their cognitive or physical abilities that affects their ability to communicate, recognize their loved ones, or perform basic tasks.

The Importance of Hospice Care for People with Lewy Body Dementia and Their Families

Hospice care can provide many benefits for people with LBD and their families. Hospice care can:

  • Help the person with LBD to have a peaceful and dignified death, free from unnecessary suffering or interventions.
  • Provide emotional, spiritual, and practical support for the person with LBD and their family members, including counseling, bereavement services, and .
  • Coordinate the care of the person with LBD with a team of professionals, such as doctors, nurses, social workers, chaplains, and volunteers, who can address their physical, emotional, and spiritual needs.
  • Provide medical equipment, supplies, and medications that are needed to manage the symptoms of LBD and improve the person's comfort and quality of life.
  • Educate the family members and caregivers about LBD and how to care for the person with LBD at home or in another setting.
  • Respect the wishes and preferences of the person with LBD and their family members regarding the goals and plans of care.

Hospice care is not giving up on the person with LBD or their family. It is a compassionate and holistic approach to care that honors the person's dignity, values, and wishes. Hospice care can help the person with LBD and their family to make the most of the time they have left together.

Preparing for End-of-Life Care

As LBD progresses, palliative and hospice care can play a crucial role in ensuring comfort and dignity for your loved one. Hospice care focuses on managing symptoms and providing emotional support during the final stages of life. Here are some considerations for end-of-life care:

Discuss End-of-Life Wishes

Have open and honest conversations about your loved one's preferences for care: People with LBD may not be able to make decisions or communicate their wishes when they are very sick or dying. You can help them by talking to them about what they want and don't want for their care while they can still tell you. You can also help them make an advance directive, a document that tells the doctors and nurses what to do if they can't speak for themselves. You can also choose someone to be their health care proxy, a person who can make decisions for them if they can't.

Pain and Symptom Management

Hospice professionals will work to keep your loved one comfortable and pain-free: People with LBD may have pain, trouble breathing, nausea, or other symptoms that make them suffer. You can help them by asking for hospice care, a special kind of care that focuses on making people feel better and not curing their disease. Hospice professionals are doctors, nurses, social workers, and volunteers who will come to your home or a place where your loved one lives. They will give your loved one medicines and treatments to ease their pain and symptoms. They will also support you and your family.

Emotional and Spiritual Support

Hospice teams can provide counseling and spiritual guidance for both the patient and family: People with LBD and their families may have many emotions and questions as they face the end of life. You can help them by asking for emotional and spiritual support from the hospice team. They can provide counseling, listening, and advice to help you cope with your feelings and fears. They can also help you find meaning and peace in your situation. They can respect your beliefs and values and help you with your spiritual needs.

Family Involvement

Spend quality time with your loved one, sharing memories and providing comfort: People with LBD may still enjoy being with their family and friends, even if they can't talk or recognize them. You can help them by spending quality time with them, holding their hand, hugging them, or playing their favorite music. You can also share memories, stories, or photos with them, and tell them how much you love them and appreciate them. You can also comfort them by keeping them warm, clean, and dry, and by giving them food and water if they can swallow.

Remember, you are not alone in this journey. Reach out to healthcare professionals, support groups, and hospice teams to ensure your loved one receives the best possible care and support.

Conclusion

Understanding Lewy Body Dementia is crucial for families and caregivers to navigate the challenges effectively. From recognizing symptoms to implementing care strategies and preparing for the end of life, a comprehensive approach is essential. By prioritizing safety, effective communication, and seeking support, families can provide compassionate care throughout the entire journey.

Resources

Lewy Body Dementia Symptoms, Diagnosis, and Treatment

Dementia with Lewy Bodies

Mayo Clinic Lewy Body Dementia

Cleveland Clinic Lewy Body Dementia

Lewy Body Dementia Support Groups

What is Lewy Body Dementia?

Sundown Dementia, Vascular Dementia and Lewy Body Dementia Explained

Lewy Body Dementia (Video)

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How Do I Know You? Dementia at the End of Life

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The Caregiver's Guide to Dementia: Practical Advice for Caring for Yourself and Your Loved One (Caregiver's Guides)

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

The Dementia Caregiver's Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout

Dementia Care Companion: The Complete Handbook of Practical Care from Early to Late Stage

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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