How Long Can You Live with Lewy Body Dementia?

Diane Carbo

Oct 7, 2023 • 10 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. 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.

Causes of Lewy Body 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. 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. 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.

Managing Symptoms 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.

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.
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.

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.

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.

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.

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.

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.

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.