Caring For Someone With Lewy Body Dementia: Info and Tips

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Caring for someone with Lewy Body Dementia can be a complex and emotionally taxing process. It requires patience, understanding, and resilient family dynamics in order to ensure the patient is cared for adequately.

While it’s easy to feel overwhelmed by the reality of such an illness impacting your loved one’s life, with the right support and resources, those affected can still lead meaningful lives while maintaining their quality of life.

Caring for someone with Lewy Body Dementia takes patience, understanding, and resilient family dynamics in order to ensure the patient is cared for adequately.

In this blog post, we’ll cover some practical tips on how you can provide day-to-day care for someone living with Lewy Body Dementia (LBD). We will discuss how to recognize symptoms associated with LBD, methods for managing behaviors related to dementia, and advice on creating supportive environments that prioritize comfort and dignity.

These are just a few suggestions that help make caring for someone with Lewy Body Dementia easier – let’s get started!

Understanding the Symptoms of Lewy Body Dementia

Lewy Body Dementia (LBD) is a type of dementia that can cause memory problems, confusion and hallucinations. It affects more than 1 million people in the US and is one of the most common types of dementia. Understanding the symptoms of LBD is essential for those who are caring for someone with the condition.

Some of the most common symptoms associated with Lewy Body Dementia include:

  • Memory Loss – People with LBD often have difficulty remembering recent events or facts. They may also struggle to retain the information they have recently been given.
  • Confusion – People with LBD may experience periods where they are easily confused and disoriented, making it hard for them to understand what’s going on around them.
  • Hallucinations – Those living with LBD may sometimes experience vivid visions even when no one else does. These can occur as what appear to be ordinary everyday objects or people but do not exist in reality.
  • Changes in Mood – Those suffering from LBD often experience sudden changes in mood, usually accompanied by extreme agitation or impaired communication skills.
  • Parkinson’s Disease Symptoms – Patients with Lewy Body Dementia may also exhibit signs of Parkinson’s disease such as tremors, muscle rigidity or slowed movement.
  • Sleep Problems – People affected by LBD can have difficulties falling asleep as well as issues sleeping through the night. REM Sleep Behavior disorder is common and may appear years before the LBD diagnosis.

Behavioral Changes in People with Lewy Body Dementia

Behavioral changes are common among those living with Lewy Body Dementia (LBD). As the disease progresses, affected individuals may experience a variety of behavioral symptoms that can range from minor agitation to extreme impulsive actions.

caring for someone with lewy body dementia - behavior changes

It is important to note that the severity and specific symptoms of LBD can vary widely from person to person.

Those caring for someone with LBD should be aware of the potential behavioral changes and learn how to effectively manage them.

Changes in mood can take the form of sudden shifts accompanied by extreme agitation or impaired communication skills.

People living with Lewy Body Dementia (LBD) may experience significant changes in their personality, from mild-mannered and polite to sometimes angry, aggressive, and even physically abusive. These changes can be sudden and unexpected, leaving family members and caregivers feeling overwhelmed.

It is essential that those caring for someone with LBD are aware of the potential behavioral changes associated with this condition so that they can better understand what to expect and prepare accordingly.

Communicating with Someone with Lewy Body Dementia

Communicating with a loved one who has Lewy Body Dementia can be challenging, as the condition can affect a person’s thinking, memory, and ability to express themselves. Here are a few tips for communicating:

  1. Use simple, clear language: Try to use simple, clear language and avoid using complex words or phrases. It may also be helpful to speak slowly and pause between sentences to give your loved one time to process the information.
  2. Use nonverbal cues: Nonverbal cues, such as gestures and facial expressions, can be helpful in conveying meaning. You can also use visual aids, such as pictures or charts, to help your loved one understand what you are saying.
  3. Avoid distractions: It can be difficult for a person with LBD to focus in a noisy or cluttered environment. Try to minimize distractions and create a calm, quiet atmosphere when you are communicating with your loved one.
  4. Be patient: It can take longer for a person with LBD to process information and respond. Be patient and give your loved one time to respond. Avoid interrupting or finishing their sentences for them.
  5. Use positive reinforcement: Encourage and praise your loved one for their efforts to communicate, even if they are having difficulty expressing themselves.

Creating a Safe and Supportive Environment for Someone with Lewy Body Dementia

Creating a safe and supportive environment for someone with Lewy Body Dementia (LBD) requires patience and understanding. It is important to provide a peaceful home that is free from too much noise and stimulation.

Keeping the person occupied with activities and responsibilities can help them to remain engaged, as well as provide structure and consistency to their daily routine. Words of affirmation can be effective in encouraging the desired behavior while managing outbursts of aggression or anger.

In addition, it may be helpful to have friends, family members, or other caregivers involved in assisting the person with LBD throughout their day. This additional support gives them reassurance that they are not alone and provides them with an additional source of comfort during times when it may be difficult for them to express themselves.

Why is it important to have a consistent routine when caring for someone with Lewy Body Dementia?

Having a consistent routine when caring for someone with Lewy Body Dementia (LBD) is important because it can help them to stay more organized and remain better oriented in their environment. It can also reduce stress and anxiety, as well as provide structure and predictability, which may have a positive effect on the person’s behavior and overall well-being.

Establishing regular meal times, bedtimes, day-to-day activities, outings, etc., can give the person with LBD an increased sense of control and accomplishment in their daily life. Additionally, having a regular schedule may help them to become more independent by allowing them to do tasks on their own or with minimal assistance.

Consistency is key when caring for someone with LBD to ensure that they are able to function at their best possible level.

Dealing with Sleep Issues

Sleep issues in Lewy Body Dementia (LBD) can be difficult to manage, but there are a few strategies that may be helpful. One approach is to create a sleep routine by going to bed and waking up at the same time each day. This helps the person with LBD become accustomed to regular sleep cycles, which can improve their overall quality of rest.

Exercise and relaxation techniques such as massage, deep breathing, and yoga stretches may also help them wind down for sleep time. Additionally, limiting or avoiding caffeine intake during the later hours of the day may help reduce restlessness or insomnia.

Studies have shown that melatonin may be beneficial in helping people with Lewy Body Dementia manage their sleep patterns. It can aid in the production of the essential neurotransmitters needed for restful sleep.

Melatonin can also help reduce agitation and increase drowsiness, making it easier for the person with LBD to drift off when bedtime arrives.

It is important to talk to your doctor about the dosage and appropriate usage of melatonin as too much or too little may not be effective in achieving desired results. With proper guidance, however, melatonin can be an effective tool in managing sleep patterns and promoting better overall health for those living with LBD.

Consistency and gentle encouragement are important when dealing with sleep issues in LBD in order to foster healthy sleeping habits.

The Benefits of Social and Recreational Activities for Someone with Lewy Body Dementia

Social and recreational activities are essential for those living with Lewy Body Dementia. Participating in enjoyable activities can help lift mood, reduce stress, relax the body, and create meaningful connections.

From going to the movies or attending church services or participating in online gaming, there are plenty of opportunities to make social and recreational experiences enjoyable.

Such activities can help the person with LBD restore energy, remain engaged with the world around them, practice problem-solving skills, boost their self-esteem, and find purpose and fulfillment. Taking part in social and recreational activities is an easy way to positively impact the quality of life of someone with Lewy Body Dementia.

Care Coordination in Lewy Body Dementia Care

Having a care plan in place is key to effectively managing the treatment of Lewy Body Dementia (LBD). Care coordination between family members, doctors, home health aides, physical and occupational therapists, as well as other professionals involved in the individual’s care can help ensure that all treatment needs are met.

An important part of this collaboration includes providing comprehensive information about LBD symptoms and progression so everyone working on the patient’s care knows what changes to look for.

Regular communication between parties is also essential for team members to stay informed when changes occur in the individual’s condition. This type of coordination allows for prompt and appropriate interventions or adjustments to be made when necessary.

With an effective care coordination system in place, families living with LBD can have peace of mind that their loved ones are receiving efficient and high-quality care.

Proper Nutrition for Someone with Lewy Body Dementia

Eating a balanced and nutritious diet is an important part of managing the symptoms of Lewy Body Dementia. Proper nutrition helps maintain physical and mental health by providing the body with essential vitamins, minerals, and other nutrients. To meet daily needs, it is important to eat plenty of fruits, vegetables, lean proteins, whole grains, healthy fats, and low-fat dairy.

It is also recommended to limit the intake of high-sugar and processed foods. A registered dietitian can help create a personalized nutrition plan that takes into account any specific issues related to LBD.

Additionally, involving family members in mealtime can be beneficial for individuals with LBD as it not only encourages nutrient-rich eating but also provides meaningful social interaction.

Nutrition and Diet in Advanced Stages

As Lewy Body Dementia progresses and individuals enter the more advanced stages of the disease, they may become unable or unwilling to consume a balanced diet. In these cases, it is important to provide patients with nutrient-rich foods that they still enjoy eating.

But, depending on the individual’s preference and nutritional needs, even indulging in favorites like ice cream or candy can be beneficial as it brings them joy and comfort. It is also a great way for families to connect with their loved one by sharing favorite treats together.

Ultimately, nourishing someone with LBD does not always have to come from healthy meals; some of the most meaningful moments come from simply enjoying time together with favorite foods.

Managing Agitation and Aggression in Lewy Body Dementia

Agitation and aggression in people with Lewy Body Dementia can sometimes be managed through a combination of approaches. Medication, such as antipsychotics, can help reduce symptoms of agitation and aggression when necessary.

Non-drug approaches are also important, however, and include maintaining a consistent daily routine, providing distractions or comforting activities to redirect the focus away from moments of frustration, using positive communication strategies to calm the person down, and creating a safe environment where the individual feels secure.

It is also helpful to identify possible triggers that may lead to outbursts so they can be avoided or addressed proactively. With patience, understanding, and support from family members, caregivers, and healthcare professionals, managing agitation and aggression in LBD is possible.


Sundowning, or increased restlessness and confusion in the late afternoon/evening, is a common symptom of Lewy Body Dementia. While there is no one-size-fits-all approach to managing sundowning, there are some strategies that may help.

Establishing a consistent daily routine can be beneficial in providing structure and calming the person down. It is also important to maintain good lighting in the home to help reduce confusion in the evening hours.

Providing distractions like music or reading material can be calming and comforting for someone going through sundowning.

Palliative Care

Palliative care is an important component of managing the symptoms of Lewy Body Dementia (LBD). It is focused on providing comfort, relief from pain and other symptoms, and emotional support to both the person with LBD as well as their family members.

Palliative care specialists focus on developing an individualized plan that takes into account the patient’s health goals and medical condition. Common treatments may include medication, counseling, relaxation techniques, oxygen therapy, massage therapy or physical therapy.

Palliative care can also provide valuable respite for the primary caregiver so they can take a break from providing constant care for their loved one. Professional palliative care teams can offer additional resources and support to ensure that everyone involved in caring for someone with LBD has what they need to provide the best possible care.

Advance Planning in Caring for Someone with Lewy Body Dementia

Advanced planning is an important part of caring for someone with Lewy Body Dementia (LBD). It can help to ensure that the patient’s wishes are met and that any legal, financial or medical issues are addressed.

caring for someone with lewy body dementia - advanced directives
It’s best to make advanced directive planning as early as possible.

Advance care planning should include discussions about end-of-life decision-making, financial and legal matters like wills or living trusts, and instructions for medical care such as advanced directives and do-not-resuscitate orders.

When dealing with LBD, it is important to remember that disease progression can be unpredictable so it is best to make these decisions as early as possible. Talking openly with family members and healthcare professionals can help ensure that all questions and concerns are addressed before they become complicated decisions in the future.

The Role of Occupational Therapy

Occupational therapy plays an important role in managing the symptoms associated with Lewy Body Dementia. Through occupational therapy, individuals with LBD can learn how to better negotiate daily activities and stay as independent as possible.

Occupational therapists work with patients on tasks such as grooming, dressing, eating, and toiletry. They also help set up a home environment that is supportive of their needs and use therapeutic techniques to help improve mobility and dexterity.

Occupational therapists can also provide education on assistive devices such as wheelchairs or walkers that may be beneficial depending on the person’s level of functioning. Overall, occupational therapy helps to ensure that patients are able to maintain their quality of life while managing the symptoms of LBD.

Benefits of Physical Exercise for Someone with Lewy Body Dementia

Regular physical activity can help to improve balance, coordination, and mobility as well as reduce fatigue and stress. Exercise can also help to improve mood and overall well-being.

It is important to note that individuals with LBD should engage in low-impact activities like walking, swimming, or yoga rather than high-intensity exercises. When creating a physical exercise plan for someone with LBD, it is important to consult a healthcare professional so that an individualized plan can be tailored to their needs.

Coping with Caregiver Grief after a Lewy Body Dementia Diagnosis

Caring for a loved one with Lewy Body Dementia (LBD) can be a physically and emotionally exhausting experience. It is natural to experience grief and sadness when coming to terms with the diagnosis.

Caregivers often feel overwhelmed, anxious, and powerless as they deal with this news. In order to cope with these feelings, it is important to prioritize self-care in order to maintain physical and mental health.

Taking time for oneself each day, whether that’s through meditation, exercise, or another activity may be helpful in managing stress levels. Additionally, seeking out support from family or friends can provide caregivers refuge during difficult times.

Lastly, talking to other caregivers or joining a support group may also help to provide consolation and guidance in dealing with the grief associated with an LBD diagnosis.

10 Tips for Caring for Someone with Lewy Body Dementia

  1. Educate yourself on the condition so that you can better understand it.
  2. Communicate care and understanding to the person with Lewy Body Dementia; often times they suffer from memory issues or confusion and may need reminders.
  3. Spend quality time with the person, whether it is just talking or engaging in activities such as reading, playing games, or listening to music that they enjoy.
  4. Create a predictable routine for them as this helps reduce stress and boosts their quality of life.
  5. Assist with simple physical tasks by providing support with eating, bathing, dressing, etc.
  6. Provide the person with Lewy Body Dementia a safe environment so that they don’t wander off on their own; discuss safety measures with them and your family to help ensure this happens.
  7. Encourage social interaction when possible; isolation can lead to further decline in cognitive function for someone who has dementia-related conditions like Lewy Body Dementia
  8. Advocate for additional medical attention when needed; stay up to date on developments related to Lewy Body Dementia and suggest changes if necessary
  9. Support research related to Lewy Body Dementia so that those suffering can benefit from new treatments whenever available
  10. Take time for yourself while caring for someone living with Lewy Body dementia so that you can remain emotionally strong enough to provide quality care


While Lewy Body Dementia can be a difficult disease to manage and understand, there are ways to provide the best possible care for your loved one. By staying informed, staying patient, and seeking support when needed, you can make sure that your loved one feels comfortable and safe as they navigate this condition.

Do you have any tips for caring for someone with Lewy Body Dementia? Share them with us in the comments below!

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Elizabeth Crane

Elizabeth Crane grew up not wearing a helmet, drinking from the hose and not wearing a seat belt. She managed to survive and now spends her time developing websites, drinking coffee, and eating chocolate.