Lewy Body

Lewy Body Dementia Life Expectancy: How Long Can You Live?

Lewy body dementia affects cognitive and physical functions, raising concerns about life expectancy. This article explores how long someone can live with the condition, factors influencing prognosis, and tips for improving quality of life for those diagnosed with this complex form of dementia.

Diane Carbo

Oct 7, 2023 — 35 min read

Lewy body dementia (LBD)

Introduction to Lewy Body Dementia

Lewy body dementia (LBD) is a progressive neurologic disorder that affects thinking, movement, behavior, and permanent memory loss. It occurs when abnormal clumps of protein form in the brain, leading to an impairment of communication between brain cells. As LBD progresses, it can cause physical and cognitive decline. Common symptoms include visual hallucinations, changes in alertness and attention, impaired movement, depression, and anxiety.

LBD is the second most common form of dementia after Alzheimer’s disease. While Alzheimer's disease primarily presents with early memory issues, LBD often features cognitive symptoms that can fluctuate, including earlier hallucinations and issues with attention and problem-solving. Both conditions share some cognitive and behavioral symptoms, and there may be overlap in potential treatment approaches. Approximately 1.4 million people in the United States are living with LBD, with many more cases going undiagnosed or misdiagnosed.

Understanding Lewy Body Dementia Prognosis

Lewy body dementia is a progressive neurological disorder that affects thinking, memory, behavior and movement. While its severity can vary from person to person, life expectancy for people with Lewy body dementia is usually between five to eight years. As the disease progresses, common characteristics seen in late stages of Lewy body dementia include physical decline, such as difficulty walking and impaired balance, as well as cognitive decline, including confusion and memory loss. Movement problems, such as difficulty walking and impaired balance, are common in the later stages of Lewy body dementia.

Causes of Lewy Body Dementia and Parkinson's Disease Dementia

Lewy body dementia is a type of progressive brain disorder that causes changes in cognitive, motor, and behavioral functioning. The cause of Lewy body dementia is not completely understood, however, researchers think it is related to a buildup of abnormal protein deposits in the brain called Lewy bodies. Dementia with Lewy bodies is characterized by the presence of these protein deposits in the brain. These deposits are thought to inhibit communication between neurons and can lead to confusion, memory loss, and other symptoms associated with dementia.

There are various potential causes of Lewy body dementia, but it is important to note that each person’s experience with the disease is unique. Risk factors include age (it is more common in adults over 60), gender (men tend to be more likely to develop it than women) and genetics (some people have a higher risk due to their family history). Other factors, such as lifestyle choices, may also play a role.

It is important to note that there is no known cure for Lewy body dementia. Life expectancy for someone with the disease typically ranges from two to eight years, although it is possible to experience a longer survival time. Treatment strategies focus on managing symptoms and improving quality of life. With proper care and support, people with Lewy body dementia can still lead meaningful lives.

Diagnosis & Treatment

Diagnosing Lewy Body Dementia (LBD) can be difficult since many of its symptoms overlap with other conditions such as Alzheimer’s disease. The challenges of diagnosing Lewy body dementia are compounded by the potential for misdiagnosis due to overlapping symptoms with psychiatric disorders. It is important for patients and their families to seek out specialists familiar with LBD to get an accurate diagnosis as soon as possible. Diagnostic tools that may be employed include tests for memory, thinking, behavior, and physical function, as well as a neurological exam.

Treatment for Lewy Body Dementia can vary greatly depending on the severity of symptoms. Medications may be prescribed to improve mental function, reduce psychosis, and help control movement. Occupational therapies, behavioral therapies, and physical therapies may also be recommended to help maintain overall strength and wellness. Finally, caregivers should consider enrolling in educational programs to learn more about the condition and how to best care for their loved one.

Stages and Progression of Lewy Body Dementia

Lewy body dementia (LBD) is a progressive disease, meaning that it worsens over time. The progression of LBD can vary significantly from person to person, and it is difficult to predict the rate of decline. However, most people with LBD experience a gradual decline in cognitive and motor function over several years.

The progression of LBD can be divided into several stages, each characterized by distinct symptoms and levels of cognitive and motor impairment. The stages of LBD are not universally agreed upon, but the following is a general outline:

Very mild cognitive decline: In the early stages of LBD, people may experience mild cognitive symptoms, such as difficulty with memory, attention, and problem-solving. These symptoms may be subtle and may not interfere significantly with daily life.
Moderately severe cognitive decline: As LBD progresses, cognitive symptoms worsen, and people may experience significant difficulties with memory, language, and problem-solving. They may also experience mood changes, such as depression and anxiety.
Very severe cognitive decline: In the advanced stages of LBD, people may experience significant cognitive impairment, including difficulty with communication, problem-solving, and daily activities. They may also experience significant motor impairment, including difficulty with walking, balance, and coordination.

It is essential to note that the progression of LBD can be influenced by various factors, including the presence of other health conditions, lifestyle factors, and the effectiveness of treatment. Understanding these stages can help caregivers and families prepare for the changes that may come and seek appropriate support and interventions.

Managing Symptoms and Visual Hallucinations of Lewy Body Dementia

Lewy body dementia can cause a variety of symptoms that can range from mild to more severe. It’s important to be aware of the common symptoms of Lewy body dementia so that they can be managed in order to maintain quality of life. Individuals with Lewy body dementia often experience various behavioral symptoms, such as hallucinations, stress, and mood changes, which require careful management to ensure safety and quality of life.

Common symptoms of Lewy body dementia include difficulty with memory, confusion, hallucinations, Parkinson’s-like physical symptoms, and difficulty in movement. It is also possible that individuals may experience increased anxiety, depression, difficulty sleeping, and changes in mood or behavior.

Memory problems: Create reminders to help yourself remember tasks. Keep lists. Ask friends and family for help.
Confusion: Take breaks throughout the day. Establish a routine. Wear a medical alert bracelet to inform others of your condition.
Hallucinations: Speak to a mental health professional about potential strategies for managing hallucinations. Make sure you are in a safe environment. Talk to a trusted friend or family member. The use of antipsychotic medications to manage these symptoms should be approached cautiously due to potential severe side effects.
Parkinson’s-like physical symptoms: A physical therapist can help you develop an exercise plan that works for you. Gentle exercise can help reduce stiffness, pain, or tremors.
Difficulty in movement: Again, talk to a physical therapist, and consider using a cane or walker if walking has become difficult.
Increased anxiety: Find ways to calm yourself when you feel anxious or overwhelmed, like going for a walk or reading a book. Speak to a mental health professional about potential strategies for managing anxiety.
Depression: Connect with others. Talk to a mental health professional about treatment options.
Difficulty sleeping: Use relaxation techniques, like guided meditation or progressive muscle relaxation. Speak with your doctor about medication.
Changes in mood or behavior: Speak to a mental health professional about treatment options.

If you are struggling to manage any of the symptoms listed above, you may want to consider joining a support group or seeking out other resources that can help. There are many local organizations and online communities devoted to helping those with Lewy body dementia. These groups can provide advice, emotional support, and connection to others who understand what you are going through.

Nutrition and Lewy Body Dementia

Eating right can be an important factor in managing all health conditions, and Lewy body dementia is no exception. Nutrition plays an essential role in maintaining overall health and keeping the body working at its best. Eating a balanced diet that provides essential nutrients can help to slow the progression of Lewy body dementia, as well as improve the patient’s quality of life. Monitoring blood pressure is also crucial, as fluctuations can lead to symptoms like dizziness and falls.

A diet rich in vegetables, fruits, whole grains, and lean protein is best for people with Lewy body dementia. It is also important to limit sugar, saturated fats, and processed foods. Additionally, it is wise for caregivers to make sure the patient is eating enough calories and drinking plenty of fluids.

Supplemental vitamins may also be prescribed for certain deficiencies in order to help maintain healthy nutrition. Omega-3 fatty acids are also recommended for reducing inflammation and promoting brain health. Caregivers should speak to their loved one’s doctor about finding the most beneficial supplement regimen.

Meal times can be challenging for those with Lewy body dementia, so it is important for caregivers to be creative in making meals enjoyable. Incorporating favorite foods, presenting food in a visually appealing way, and involving familiar people in the meal can help create a positive experience.

Stress Management & Mental Health

When caring for a loved one with Lewy body dementia, it is important to recognize the effect that stress and mental health can have on an individual’s life expectancy. Constant feelings of stress, burnout, sadness, or uncertainty can lead to exhaustion and a weakened immune system, creating a higher risk of developing serious illnesses. It is important to make sure that both the patient and the caretaker are taking steps to protect their mental health in order to maintain health and reduce the progression of the disease.

There are several ways to manage stress and mental health. One of the most effective is to prioritize self-care. This includes eating right, getting enough sleep, exercising regularly, having a hobby, and spending time with friends. Making time for social activities and joining support groups can also provide valuable emotional support. Other options include writing in a journal, trying mindfulness techniques, and even seeking professional help. Additionally, REM sleep behavior disorder is a common sleep disruption in individuals with Lewy body dementia, where they act out their dreams, leading to confusion and potential injuries during sleep, which can significantly impact mental health.

For those who are unsure of how to find help, there are many resources available. Consult your doctor for advice on finding a qualified mental health provider. Additionally, you can search online for local support groups, or seek out virtual support groups for those who need help but don’t have access to in-person services.

Clinical Trials and Research in Lewy Body Dementia

Clinical trials and research are essential for improving our understanding of Lewy body dementia (LBD) and developing effective treatments. Researchers are currently exploring various avenues, including:

Genetic studies: Researchers are studying the genetic factors that contribute to the development of LBD, including the role of genes such as APOE, SNCA, and GBA. Understanding these genetic links can help identify individuals at risk and develop targeted therapies.
Imaging studies: Advanced imaging techniques, such as MRI and PET scans, are being used to study the brain changes associated with LBD. These studies aim to develop biomarkers that can aid in early diagnosis and track disease progression.
Clinical trials: Numerous clinical trials are underway to evaluate the safety and efficacy of various treatments for LBD. These include medications to manage symptoms, physical therapy to improve mobility, and cognitive training to enhance mental function.
Lifestyle interventions: Researchers are also investigating the impact of lifestyle factors, such as diet, exercise, and social engagement, on the progression of LBD. These studies aim to identify strategies that can improve quality of life and slow disease progression.

Some of the current clinical trials and research studies in LBD include:

The Lewy Body Dementia Association’s (LBDA) Research Centers of Excellence, which are dedicated to advancing the understanding and treatment of LBD.
The National Institute on Aging’s (NIA) Lewy Body Dementia Initiative, which aims to improve the diagnosis and treatment of LBD.
The Alzheimer’s Association’s Lewy Body Dementia Research Grant Program, which provides funding for research studies on LBD.

By participating in clinical trials and supporting research efforts, individuals and families affected by LBD can contribute to the development of new treatments and improve the future outlook for those living with this challenging condition.

Caring for a Loved One with Lewy Body Dementia

Caring for a loved one with Lewy body dementia can be a difficult and emotionally-draining experience. It can be difficult to watch a loved one go through the stages of this disorder, and it’s important to remember to take care of yourself as well. Here are some tips for providing emotional and physical support to a loved one with Lewy body dementia:

Focus on maintaining continuity and familiarity in routines.
Encourage physical activity, such as walking or swimming, which can help to manage symptoms.
Create a safe and comfortable environment for your loved one.
Schedule regular activities to provide structure.
Be patient when communicating and try to remain positive.
Remind your loved one of any accomplishments or milestones they have achieved.
Keep up with visits to the doctor to stay up-to-date on their condition.

It is important to make sure that you are taking time for yourself and getting enough rest. Caring for a loved one with Lewy body dementia requires patience, understanding, and consistent support. In addition to the above tips, there are many online resources and support groups to help provide additional guidance and assistance. The Lewy Body Dementia Association is a valuable resource for caregivers seeking support and information.

Financial Planning: Ensuring Care When Needed

Living with Lewy body dementia can be expensive. It is important to plan ahead financially in order to ensure that when care is needed, the necessary resources are available. Here are some tips to help you prepare for the financial pressures of living with Lewy body dementia:

Create a budget and stick to it: Track your spending and make sure to only spend what you can afford. This will help to keep expenses in check.
Make sure you have adequate insurance coverage: Make sure that your health insurance covers everything you need. Consider supplemental policies to cover any gaps in coverage.
Save for future medical costs: Estimate how much money you will need for future medical costs, such as long-term care or home modifications, and start setting aside funds.
Research government programs: Find out what government programs exist that can help with the costs of living with Lewy Body Dementia. Research private companies that may offer financial assistance.
Seek advice from experienced professionals: Speak with a financial advisor, accountant, or other financial professional to get advice on taxes, investments, and estate planning.

Financial planning is an important step in preparing for life with Lewy body dementia. With proper planning, you can ensure that your future and the future of your loved ones is secure.

End-of-Life Care and Planning

End-of-life care and planning are essential for people with Lewy body dementia (LBD) and their families. As LBD progresses, people may experience significant cognitive and motor impairment, which can impact their quality of life and increase their risk of complications.

End-of-life care and planning involve several key components:

Advance care planning: It is crucial for people with LBD and their families to discuss and document their wishes for end-of-life care. This includes preferences for medical treatment, palliative care, and hospice care. Having these conversations early can ensure that the individual’s wishes are respected and reduce stress for family members.
Palliative care: Palliative care focuses on relieving symptoms, pain, and stress associated with serious illnesses like LBD. It aims to improve quality of life for both the patient and their family by addressing physical, emotional, and spiritual needs.
Hospice care: Hospice care provides comfort and support to people with terminal illnesses, including LBD. It focuses on providing compassionate care in the final stages of life, ensuring dignity and comfort.
Support for caregivers: Caregivers of people with LBD may experience significant emotional and physical stress. It is important for caregivers to seek support from healthcare professionals, support groups, and other resources to manage their well-being and provide the best care possible.

Some of the resources available for end-of-life care and planning in LBD include:

The Lewy Body Dementia Association’s (LBDA) End-of-Life Care and Planning Guide, which provides information and resources for people with LBD and their families.
The National Hospice and Palliative Care Organization’s (NHPCO) resources on end-of-life care and planning, which provide information and support for people with serious illnesses and their families.
The Alzheimer’s Association’s resources on end-of-life care and planning, which provide information and support for people with dementia and their families.

By taking the time to plan for end-of-life care, individuals with LBD and their families can ensure that their wishes are respected and that they receive the best possible care and support during this challenging time.

CareGiver Support

When a loved one has been diagnosed with Lewy body dementia, it can be challenging for family and friends to provide round-the-clock care. This is where respite care, or qualified caregiving services, can be incredibly helpful. Respite care is a service offered by organizations and caregiver agencies which provides temporary relief to caregivers. Qualified caregivers may also assist in providing care to someone with Lewy body dementia.

Finding the right kind of support for a loved one living with Lewy body dementia can be a challenge. Family and friends should research local organizations and agencies that offer respite or qualified caregiving services. It’s important to do your homework when considering various organizations. Check reviews online, speak to other caregivers, and make sure you’re comfortable with the staff and caregivers at any facility or organization before making a decision. Caregiving needs for Lewy body dementia and Parkinson's disease dementia share similarities, such as the need for managing cognitive symptoms, but differ in the progression and specific care requirements due to the distinct clinical timelines of each condition.

In addition to respite care and qualified caregiving services, there are other options available to those caring for a loved one with Lewy body dementia. It may be possible to find part-time help with daily tasks such as housekeeping, meal preparation, or transportation. There are also support groups available to both caregivers and those living with Lewy body dementia. These support groups are a great way to connect with people who understand what you’re going through and can provide advice and emotional support.

Accessing Resources

Navigating the health and care system can be overwhelming, especially if you or a loved one has been recently diagnosed with Lewy body dementia. It is important to know your options for support and to be aware of relevant resources in your local community. Here we will discuss accessing government benefits, local support groups, and qualified caregiving services.

Government benefits can be an essential part of financial planning for families affected by Lewy body dementia. Usually, patients who have been diagnosed with a long-term medical condition, such as Lewy body dementia, will be eligible for certain types of assistance. These benefits might include covering medical expenses, providing help with everyday activities such as bathing and eating, and providing transportation. It is important to research your state's specific guidelines for qualifying for benefits as they may vary.

Local support groups can provide an opportunity for learning about and discussing topics related to Lewy body dementia. Meetings may provide information on available services, latest treatments, and opportunities for emotional support from others facing similar challenges. Groups may also organize educational events and guest speakers. Check with your local hospital, university, or Alzheimer's Association for details on available support groups.

Caretaking for someone with Lewy body dementia can be physically and emotionally draining. To ensure your loved one is receiving quality care, consider hiring a reliable and experienced caretaker. Research your options for qualified caregivers, as well as respite care services. Additionally, look into becoming certified as a home health aide or nursing assistant.

By taking the time to access resources for care and support, you are helping to ensure that you or your loved one can live a long and healthy life with Lewy body dementia.

Lewy body dementia can be a challenging and life-altering journey for both patients and their families. In this guide, we covered an introduction to Lewy body dementia—including its symptoms—an overview of prognosis, causes, diagnosis and treatment, symptom management, nutrition, stress management & mental health, advice on caring for a loved one with Lewy body dementia, financial planning, caretaker support, and accessing resources.

We hope that by reading through these topics, you are now more equipped to take action on the next steps of your journey. You can take control of your illness by staying informed of available treatments and resources, develop a comprehensive care plan with the help of professionals, and create a support system for yourself and your family. As an individual living with Lewy body dementia or as a caregiver, know that you are not alone. Seek out help from hospitals, specialists, and other organizations, like online support groups, for guidance.

It is important to note that the prognosis of Lewy body dementia varies drastically from person to person. While it is not possible to know exactly how long someone can live with Lewy body dementia, being mindful of maintaining health and creating a strong support system are key in managing the illness and improving quality of life.