Dementia with Lewy bodies, also referred to as Lewy Body Dementia, is the second most frequently occurring form of progressive dementia, the first being Alzheimer’s disease. Lewy bodies are clumps of abnormal protein deposits that develop in the nerve cells, usually in the brain regions involved in memory, thinking, and motor control. This comprehensive post discusses what is Lewy Body Dementia, causes, symptoms, diagnosis, treatments, risk factors and much more. In addition, we review the difference between Alzheimer’s Disease and Lewy Body Dementia and provide caregiver tips and how to find resources.
Dementia is a general (or ‘umbrella’) term used for the impaired ability to think, remember, or make decisions that would interfere with doing your everyday tasks.
Alzheimer’s disease is a disease many people heard of because it is the most common type of dementia, accounting for about 60 – 80% of dementia cases.
Lewy body dementia accounts for an estimated 5 to 10 percent of dementia cases.
For more information about Alzheimer’s Disease, please read our post What is Alzheimer’s Disease.
For those wanting to understand more about the difference between Dementia and Alzheimer’s Disease, our post Caregiver Basics: Alzheimer’s Disease & Dementia may be helpful.
What Is Lewy Body Dementia?
Lewy body dementia (LBD) is a disease that involves abnormal deposits of a protein in the brain, and this protein is called alpha-synuclein.
These protein deposits are called Lewy bodies (named after Dr. Friedrich H. Lewy, who discovered them), and they cause brain neurons to work less effectively and affect chemicals in the brain.
This usually leads to problems with movement, thinking, behavior, and mood.
In addition to the more common symptoms such as memory loss, people with Lewy body dementia may have balance or physical movement issues such as trembling, rigid muscles, or slow movement.
Other symptoms commonly seen are changes in alertness, for example, confusion, daytime sleepiness, or staring spells.
They may also have visual hallucinations, such as seeing things that are not there or having trouble sleeping at night.
Lewy bodies may affect several regions of the brain, for example:
- the cerebral cortex, which controls perception, information processing, thought, and language;
- the brain stem that regulates sleep and alertness;
- the limbic cortex, which impacts emotions and behavior;
- the hippocampus which affects new memories;
- the brain regions that help recognize smells;
- the midbrain and basal ganglia which affect movement.
Lewy body dementia slowly progresses over time. On average, it will last 5 to 8 years from diagnosis to death, but the time span has been seen to range from 2 to 20 years.
There can be many variations from person to person on how fast symptoms develop and progress.
Usually, in the early stages of Lewy body dementia, people can function pretty independently, but as the disease advances, they may need help because of their decline in motor skills and thinking abilities.
Causes Of Lewy Body Dementia
The cause of Lewy body dementia remains unknown, but research continues to learn more about its biology and genetics.
Researchers are not sure about why Lewy bodies build up in the brain.
However, what they know is that the accumulation of Lewy bodies leads to the loss of specific neurons present in that brain’s region.
This affects two neurotransmitters (chemical messengers) produced by the brain cells; acetylcholine and dopamine.
Acetylcholine is involved with memory and learning, while dopamine has a role in cognition, behavior, movement, sleep, motivation, and mood.
Why Lewy body dementia occurs isn’t fully understood, but scientists have found that a variant in three genes (APOE, GBA, and SNCA) has been associated with an increased risk of Lewy body dementia.
Lewy Body Dementia Symptoms
Lewy body dementia signs and symptoms can include:
- Visual hallucinations, sometimes this is one of the first noticed symptoms. The hallucinations can consist of seeing things like animals, shapes, or people who are not there. Sometimes people may have other types of hallucinations that including hearing, smell, or touch.
- Physical symptoms, for example, tremors, a shuffling walk, slow movement, rigid muscles, balance problems, difficulty swallowing, stooped posture, reduced facial expression, weaker voice.
- Cognitive issues, for example, memory loss, confusion, changes in reasoning, trouble processing information, and planning.
- Alertness and confusion vary from day to day, staring into space, daytime drowsiness.
- Sleep disturbances, including Rapid eye movement (REM) sleep behavior disorder. This is a sleep disorder where one will physically act out dreams that are very vivid and usually unpleasant, involving violent leg and arm movements during REM sleep. One may also experience insomnia (difficulty falling or staying asleep) or excessive daytime sleepiness (sleeping two or more hours during the day)
- Malfunctions of the ‘automatic’ nervous system, which regulates our automatic functions, for example, heart, muscles, and glands. Our pulse, blood pressure, digestive process, body temperature, and perspiration are regulated by our nervous system, which can be affected by Lewy body dementia. Effects may be seen by
Mood or Behavioral symptoms, including:
- Depression – persistent feeling of worklessness, sadness, or inability to enjoy activities;
- Paranoia – irrational, extreme distrust of others;
- Anxiety- intense uncertainty, apprehension or fear about a future situation or event;
- Apathy – a lack of interest in normal daily activities;
- Delusions- firmly held false opinions or beliefs, not based on any evidence.
Lewy Body Dementia Diagnosis
Because there is no single test to diagnose Lewy body dementia conclusively, it is a “clinical” diagnosis, which means the physician reviews all of the clinical information and makes a professional judgment of the cause of your symptoms.
Although Lewy body dementia and Parkinson’s dementia are usually diagnosed as separate disorders, many experts believe they both have the same underlying problem with the brain processing the alpha-synuclein protein.
Considerations when diagnosing Lewy body dementia include:
- Symptoms of dementia that are consistent with Lewy body dementia develop
- At the time of diagnosis, there are both movement symptoms and dementia symptoms
- Within one year of having movement symptoms, dementia symptoms then appear
Difference Between Alzheimer’s Disease and Lewy Body Dementia
- Memory loss tends to be a more prominent symptom in early Alzheimer’s compared to early Lewy body dementia. However, more advanced Lewy body dementia may see memory problems in addition to the more common effects on planning, judgment, and visual perception.
- Movement symptoms are more prominent in early Lewy body dementia compared to Alzheimer’s; however, Alzheimer’s can cause problems with balance, walking, and physical movement as Alzheimer’s progresses to moderate and severe stages.
- Delusions, hallucinations, and misidentification of familiar people are more prominent in early-stage Lewy body dementia than Alzheimer’s.
- REM sleep disorder is more prominent in early Lewy body dementia compared to Alzheimer’s.
- Disruption of the autonomic nervous system is more prominent in early Lewy body dementia than Alzheimer’s.
Treatment Options Of Lewy Body Dementia (LBD)
There is currently no Lewy Body Dementia treatment that can stop or slow the brain cell damage.
Therefore, current treatment focuses on helping the symptoms. For example, treatments may include medications to help with symptoms related to thinking, memory or judgement, or medications to treat depression or sleep disorders.
Although there are several drugs and treatments that may be helpful for Lewy body dementia, it is essential to work with your providers because some medications can make some symptoms worse.
Comprehensive Lewy body dementia treatment is important, including medications to treat symptoms, various therapies, and counseling.
Other essential things that can help include ensuring the home is safe, there may be equipment available to help with everyday tasks, and having support is also important.
Some adjuvant therapies that may be helpful include:
- Physical therapy: This can help improve strength, gait, flexibility, and enhance general health.
- Occupational therapy: Can support day-to-day tasks and make them simpler, including bathing and eating.
- Speech therapy: Can improve swallowing and speaking problems.
- Mental health therapy: Helpful for the patient and their loved ones to better cope with the disorder emotionally and socially
- Palliative care specialists: can help improve the quality of life by relieving symptoms (at any stage of the disease).
- Complementary therapies: These therapies can include the following.
- Vitamins and supplements – to eliminate anxiety caused by any deficiencies.
- Art and music therapy – may calm anxiety.
- Pet therapy – a pet can be a great companion to improve mood.
- Aromatherapy – For soothing and calming effects.
Risk Factors Of Lewy Body Dementia
The following factors elevate the risk of developing LBD:
- Age is a significant risk factor. Most people who develop Lewy body dementia are over 50 years old.
- Other diseases: Some other conditions, such as Parkinson’s disease and REM sleep behavior disorder, have been linked to a greater risk of getting Lewy body dementia.
- Family history: Those having someone in their family with Parkinson’s disease or Lewy body dementia may increase your risk of getting Lewy body dementia. However, it is not usually considered a genetic disease.
Complications Of Lewy Body Dementia
Since LBD is a progressive condition, its signs and symptoms may worsen with time. Watching for complications is important so you can discuss treatments with the provider. Complications may include the following:
- Aggressive behavior
- Severe dementia
- Elevated risk of tripping and injury
- Progressive decline in movement, tremors
10 Tips For Caregivers
Caregivers have an essential role particularly with the progression of the disease. Symptoms vary, so the care differs from one person compared to another.
10 General tips for caregivers include:
1. Effective Communication
Talking slowly with clear words can help. Using easy sentences couples with hand gestures can be very supportive.
2. Keep It Simple
Give as much information as needed by the patient for that time. Excessive information about the disease, Lewy Body Dementia treatment, and also too many choices can be confusing. So, keep things simple and allow enough time for a response.
3. Enhance Good Sleep
Individuals with LBD may also have sleep disorders. Steer away from caffeinated beverages in the evening, and try to minimize excessive daytime napping. Create a soothing environment with a nightly routine.
4. Physical Activity
Movement can be good for LBD patients. Safely implementing routine physical activity may be helpful.
5. Promote Mental Functioning
Puzzles and other games may enhance thinking skills and lift the mood.
6. Simplify Life And Tasks
Balance issues, tremors, and hallucinations are already a problem for LBD patients, and confusion occurs very easily. When possible, organize the home and also declutter to make moving around and performing simple tasks (such as dressing) more manageable for them.
For more information about dementia and how to manage dementia as a caregiver, read our post What Caregivers Need to Know About Dementia.
7. Consider Advance Care Planning
Advance care planning means putting your preferences down in writing so that if you are incapacitated or unable to speak for yourself, your family and health care providers know what type of care you want.
Most commonly, people put their wishes in a legal document, for example an advance directive.
This is especially important for someone who has a dementia because it is likely they may not be able to make their own health care decisions as the disease advances.
Discussions about end-of-life care can be sensitive and stressful for both the caregiver and care receiver. Family caregivers face the challenge of being objective and staying open to their loved one’s wishes while keeping their feelings and opinions in check. For more information about advance care planning and suggestions on preparing for sensitive discussions, read our post Sensitive Discussions About End of Life Care
8. Be Aware of Caregiver Stress
Caregivers face the reality of caregiver burnout and fatigue.
It is important to understand how stress may impact you or your loved ones.
It is also helpful to understand how to manage stress and recognize the potential harms of stress on your body.
For more information about stress and how it impacts your body, read our post What is Stress?
9. Caregiver Self-Care
Caring for someone with Lewy body dementia and be very complicated and challenging.
It is important for caregivers to remember and care for themselves, so they remain in good health both physically and emotionally.
Some self-care tips include:
- Ask for support from friends, family, neighbors, and also other caregivers.
- Take a break from caregiving and do something fun for yourself, such as going to a movie, getting a massage, or hanging out with friends.
- Ensure that you also exercise regularly, even if it is just walking a few miles
- Eat a healthy and nutritious diet, including fruits and vegetables.
- Visit your doctor regularly for your physical exams and also when you feel sick.
Taking care of yourself is one of the best things that you can do for your loved one.
You will be healthier both physically and mentally, and that will enable you to better care for your loved ones throughout their journey.
The benefits of eating right, staying hydrated, exercising, and getting enough sleep are well documented. In addition, regular office visits with your doctor, mindfulness and some relaxation can also be very helpful.
For more information on caregiver self-care, read our post Self-Care Tips for Caregivers.
10. Know Where to Find Help
There may be resources available that could help you and your loved one.
For example there may be meal delivery programs, respite care, visiting nurses, or caregiver support available in your community.
These programs help your loved one and alleviate some of your emotional, physical, and financial stress. For an in-depth list of community resources, read our blog post Senior Resources- Guide for Caregivers.
The Alzheimer’s Association
The Alzheimer’s Association is an excellent resource for information about Alzheimer’s Disease and all other Dementias.
They provide information about the disease, stages and so much more.
They also provide information specifically for caregivers.
The Alzheimer’s Association has an online community, including virtual support groups and message boards.
They also have a 24/7 help line (800) 272-3900 24/7.
Caring for someone with Dementia can be extremely challenging, especially as the disease advances. Understanding the disease progression, Lewy Body Dementia treatments and how to manage your loved one is critical through this journey. Recognizing caregiver stress and implementing self-care will help your physical and emotional well-being. Looking into the available resources in your community can benefit you and your loved one.
- Mayo Clinic staff. Lewy Body Dementia. Mayo Clinic. Apr, 2019. https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025
- NIA Scientists and Experts. What Is Lewy Body Dementia? NIH. Jun, 2018. https://www.nia.nih.gov/health/what-lewy-body-dementia
- Lawa N. What Is Lewy Body Dementia? WebMD. May, 2019. https://www.webmd.com/alzheimers/guide/dementia-lewy-bodies