The 7 Stages of Lewy Body Dementia Explained

Lewy Body Dementia (LBD) is a challenging and often confusing condition. LBD affects many families—as many as 1.4 million people in the United States are living with this condition. Though it is the third leading form of dementia, it isn’t as well-known as Alzheimer’s disease, leaving many family members wondering how the disease progresses, what to expect, and how to provide dementia care for their loved ones.

At ComForCare, we understand how tough it can be to navigate this diagnosis. However, knowing what to expect—and the resources available to you—can help you provide better care and support for your loved one. Here, we break down the 7 stages of Lewy Body Dementia, explaining what happens at each stage and how you can help.

What is Lewy Body Dementia?

Lewy Body Dementia (LBD) is a progressive neurological disorder characterized by abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, known as Lewy bodies, affect brain regions involved in thinking, movement, behavior, and mood. 

LBD can cause a range of symptoms, including a decline in cognitive abilities, visual hallucinations, fluctuating attention, and Parkinson's-like motor issues such as tremors and stiffness. It's the third most common type of dementia after Alzheimer's disease and vascular dementia, and it requires comprehensive care and support due to its complex and varied symptoms.

Navigating the Stages of Dementia with Lewy Bodies

While this seven-stage system isn't universally agreed upon, it’s a common way to think about the progression of the disease. It's important to remember that these stages are not always clear-cut, and the progression can vary from person to person.

Stage 1: No Noticeable Symptoms

In the early stage, there are no noticeable symptoms. Your loved one might not show any signs of memory loss, confusion, or other typical symptoms of dementia. During this stage, Lewy bodies (abnormal protein deposits) are beginning to form in the brain, but they haven't started affecting cognitive function yet.

How You Can Help:

• Stay informed about the condition and be prepared for changes that may come.
• Maintain regular medical check-ups to catch any early signs.

Stage 2: Very Mild Symptoms

In stage two, symptoms are still very mild. You might notice slight changes in thinking or mood, but nothing that significantly disrupts daily life. Your loved one might have minor memory lapses or difficulty concentrating.

How You Can Help:

• Encourage mental and physical activities to keep the brain engaged.
• Create a routine to help with concentration and memory.

What are the first signs of Lewy body dementia?

Mild confusion, memory loss, and new problems with attention are often the first symptoms of Lewy body dementia. However, these can also be signs of mild cognitive decline or other forms of dementia, such as Alzheimer’s disease. In some cases, these symptoms can even be side effects of certain medications.

It’s important to keep an open line of communication with your loved one’s healthcare provider to establish a baseline, monitor symptoms, and obtain an accurate diagnosis.

Stage 3: Mild Symptoms

By stage three, symptoms become more noticeable. Your loved one might have more frequent memory lapses, trouble with problem-solving, or difficulty finding the right words. They might also start showing signs of confusion or slight changes in their personality.

How You Can Help:

• Offer gentle reminders for daily tasks and help with planning activities.
• Be patient and understanding as they struggle with finding words or remembering things.
• Start planning for long-term care options, such as in-home dementia care.

Stage 4: Moderate Symptoms

Stage four marks a significant change. Cognitive decline becomes more evident, and your loved one might need help with daily activities like cooking, shopping, or managing finances. They might also experience increased confusion, especially in unfamiliar environments.

How You Can Help:

• Assist with daily tasks and maintain a safe, supportive environment.
• Begin arranging dementia home care services, if you haven’t already.
• Use visual aids and lists to help with memory and organization.

Stage 5: Moderately Severe Symptoms

At this stage, your loved one will need more assistance with daily living. They might have significant memory problems, difficulty recognizing friends and family, and trouble with basic self-care like dressing and bathing.

How You Can Help:

• Provide hands-on assistance with daily activities or rely on the aid of a DementiaWise®-trained home caregiver.
• Ensure a calm, structured environment to reduce confusion and anxiety.
• Encourage social interaction to maintain emotional well-being.

Stage 6: Severe Symptoms

In stage six, symptoms become severe as Lewy bodies build up in brain cells. Your loved one might experience major personality changes, delusions, or hallucinations. They will need extensive help with daily activities and might have trouble communicating.

How You Can Help:

• Offer or arrange constant supervision and support.
• Create a safe, calming environment to help manage delusions or hallucinations.
• Use simple, clear communication to reduce frustration.

Stage 7: Very Severe Symptoms

The final stage is the most challenging. Your loved one will likely lose the ability to speak, walk, or respond to their environment. They will need round-the-clock care and assistance with all daily activities.

How You Can Help:

• Make sure your loved one receives compassionate, around-the-clock care, ensuring comfort, dignity, and quality of life.
• Work closely with care professionals to manage symptoms and provide the best possible care.
• Focus on maintaining a calm, soothing environment to ease anxiety and discomfort.

Supporting Your Loved One

Caring for someone with Lewy Body Dementia can be overwhelming, but you're not alone. At ComForCare, we offer in-home dementia care services tailored to your loved one's needs at each stage of LBD. Our professional caregivers are trained to provide compassionate, effective care that supports both the individual and their family.

Tips for Caregivers:

• Educate Yourself: Understanding Lewy Body Dementia helps you anticipate changes and respond effectively.
• Build a Support Network: Connect with support groups, friends, and professionals who can offer advice and emotional support.
• Prioritize Self-Care: Caring for a loved one is demanding. Make sure to take time for yourself to recharge and stay healthy.

Start Planning Your Loved One’s Care Journey Today

Lewy Body Dementia is a journey, but with the right information and support, you can provide the best care possible for your loved one. Remember, ComForCare is here to help every step of the way. Reach out to us for more information about our in-home care services and how we can assist you and your family.

Choose ComForCare: Our DementiaWise®-Certified Caregivers Are Standing By

ComForCare is leading the nation in dementia care services at home. Our DementiaWise® training program equips caregivers with the tools, training, and resources they need to help seniors live their best lives at every stage of their journey with dementia. To learn more about our services and how they can play a role in your loved one’s care, contact your nearest location or call our helpline today!