Lewy Body Dementia: A Guide for Loved Ones

Lewy Body Dementia (LBD) is the third most diagnosed form of dementia, affecting nearly 1.4 million people in the United States alone. Despite this, few people (including doctors) understand what Lewy Body Dementia is, if they have even heard of it at all.

What Is Lewy Body Dementia?

LBD is a type of dementia characterized by abnormal protein deposits, called Lewy bodies, in the brain. Lewy bodies can disrupt the normal functioning of brain cells, leading to problems with memory, movement and behavior.

When Lewy bodies accumulate in different regions of the brain, they interfere with the communication between brain cells, which in turn affects the cells' ability to work properly. This disruption contributes to the symptoms seen in disorders like Lewy Body Dementia and Parkinson's disease.

LBD is the third most common cause of dementia after Alzheimer's disease and vascular dementia, accounting for approximately 10-15% of all dementia cases. Lewy Body Dementia symptoms typically appear between the ages of 50 and 85, with most diagnoses occurring around age 75.

LBD can be challenging to diagnose and manage, and its symptoms often overlap with those of other dementias, such as Alzheimer's disease. It’s also possible for someone to have Lewy Body Dementia and another form of dementia, such as Alzheimer's disease or vascular dementia, at the same time.

The symptoms of Lewy Body Dementia can vary widely from person to person and may include cognitive, motor and psychiatric disturbances. Common symptoms include:
• Cognitive decline: People with LBD often have trouble focusing, making decisions and understanding where objects are in relation to each other.
• Movement issues: LBD is linked to Parkinson's-like problems, which can cause shaking, muscle stiffness and slow movement.
• Fluctuations in thinking and alertness: Individuals with LBD may have periods of confusion and drowsiness, which can vary throughout the day.
• Visual hallucinations: Up to 80% of individuals with LBD experience recurrent and vivid visual hallucinations.
• Sleeping difficulties: In LBD, a sleep issue called REM sleep behavior disorder often occurs, where people physically act out their dreams. This can be dangerous for the person involved and difficult for loved ones to deal with.

People with LBD are often sensitive to certain medications, particularly antipsychotic drugs. Sometimes, this can take the form of paradoxical reactions, where taking a medicine exacerbates symptoms rather than improving them. Caregivers should monitor any changes in their loved one’s condition after starting a new medication.

It is crucial to consult with a neurologist who has experience in diagnosing and treating Lewy Body Dementia. An accurate diagnosis is essential for appropriate treatment and care planning. A neurologist with expertise in LBD can help differentiate it from other dementias and recommend the most suitable treatment options.

Caring for Someone with Lewy Body Dementia

Helping someone with LBD can be tough, but there are several things friends and family can do to make life a little easier for their loved one:
•Set up a daily routine: Having a routine helps bring some stability to their life and can reduce confusion. You could plan regular mealtimes, medication schedules and rest breaks.
• Make their living space safe and comfy: Keep their home tidy and well-lit so they're less likely to trip or have accidents. You could also add grab bars in the bathroom or use night lights in hallways to help them navigate during the night.
• Get them moving: Encourage your loved one to exercise as much as they are able, as it can help improve their movement and overall well-being. You could go for walks together or do gentle, guided exercises like tai chi or chair yoga.
• Keep their mind busy: Engage them in activities that stimulate their brain, like puzzles, reading, or arts and crafts. Brain enrichment programs like those used by Living Well Memory Care can help your loved one’s cognition and well-being.
• Sort out sleep issues: Talk to their health care team about ways to improve sleep quality. This could involve setting a regular bedtime, creating a calming routine before bed, or even adjusting their medications.
• Be there for them emotionally: When they're feeling confused or experiencing hallucinations, offer reassurance and understanding. Encourage open communication and let them know you're there to support them.

Don't be afraid to seek help from healthcare professionals like neurologists, occupational therapists or speech therapists. They can offer guidance on dealing with specific challenges and create personalized strategies for managing LBD symptoms.

There are several organizations and resources available to provide support and information on LBD:
• Lewy Body Dementia Association (LBDA): The LBDA is a national organization dedicated to raising awareness, providing education and supporting research on LBD. They offer various resources, including a comprehensive website, online support groups and educational materials.
• Alzheimer's Association: Although primarily focused on Alzheimer's disease, the Alzheimer's Association also provides resources and support for individuals and families affected by LBD.
• National Institute on Aging (NIA): The NIA is a division of the National Institutes of Health (NIH) that offers in-depth information on LBD, including the latest research findings and resources for caregivers.
• Parkinson's Foundation: This organization focuses on Parkinson's disease but also provides resources and support for those dealing with LBD due to the overlapping symptoms and shared challenges.

Connecting with these organizations and utilizing their resources can help loved ones gain a better understanding of LBD and find valuable support to navigate the challenges that come with caring for someone with this complex condition.

By staying informed and implementing these supportive strategies, you can make a positive impact on your loved one's life as they navigate the challenges of living with Lewy Body Dementia.