When our loved one is diagnosed with dementia, we want to do our best to understand exactly what they’re going through. The more we know, the more support we can offer – both emotionally and in regard to long-term care support. We’ll also be better equipped to help ourselves. Knowing what to expect as dementia progresses, and understanding why our parent, spouse, or grandparent is behaving in certain ways can help us manage and care for our own feelings.

There are over four hundred types of dementia out there – so it’s important not to generalize dementia as one single disorder. Once you know what type of dementia your loved one has, you can look at that variant through a closer lens, so you can focus on providing your loved one with specified care to match their individual needs.

Today, we’re going to talk about one type of dementia that affects over one million people in the United States each year. That’s Lewy body dementia – or LBD. LBD usually sets in around age 50, although it can occur earlier. There are two diagnoses of the disorder – dementia with Lewy bodies, or DLB, and Parkinson’s disease dementia.

By examining LBD in both of its forms, we can have a much clearer understanding of what our loved one is struggling with – and how to help them. After all, LBD is quite different from Alzheimer’s or other forms of dementia, so we want to make sure we’re not grouping these disorders together. We’ll talk about the signs and symptoms of LBD, what to expect as the disease progresses, and possible care and treatment options.

First, it’s important to understand what Lewy bodies are. First discovered by Dr. Friederich Lewy in 1912, Lewy bodies are abnormal protein deposits that form clumps inside neurons, causing neurons to lose function and die. The clumps first form in the parts of the brain that control memory and movement – but as time goes on, the damage spreads to other regions. In all, Lewy bodies can form in the cerebral cortex, the limbic cortex, the hippocampus, the midbrain and basal ganglia, the brain stem, and the olfactory pathways.

The cerebral cortex controls language, thought, and information processing. The limbic cortex dictates emotions and behavior. The hippocampus is where new memories form. The midbrain and basal ganglia control movement. The brain stem regulates sleep. The olfactory pathways control the sense of smell.

To learn more about how exactly LBD affects the brain, listen to our episode that discusses and examines the different types of dementia.

Clearly, LBD is a devastating disorder. It can be extremely hard to watch a loved one fall victim to a progressive brain disease. That’s why it’s so essential to prepare yourself – so that you can minimize unwanted surprises down the road and be there for your loved one every step of the way.

Scientists are unaware of what exactly causes LBD, but they do know that the dying neurons result in a failure of messages to be sent through brain cells. Without these messages, memory, learning, behavior, cognition, mood, and movement are all affected.

LBD is common in patients with Parkinson’s Disease. According to alz.org, 50-80% of Parkinson’s patients experience dementia. The most common form of dementia for these patients is LBD. This is most likely because people with Parkinson’s disease and LBD are both progressive diseases in which brain cells are lost after protein clusters are formed.

Unfortunately, LBD is commonly misdiagnosed or not diagnosed in its earliest stages. That’s because the early symptoms of the disorder can be confused with normal aging or other memory disorders, like Alzheimer’s. Still, there are some key differences to look out for.

Remember, every person responds differently to LBD, so while some people might have every symptom, others may only have some. The severity of these symptoms also varies from person to person. Because of this, whether you notice any or all of these symptoms in your loved one – and regardless of the severity – you should take your loved one to the doctor if you think there’s a chance, she might have LBD.

Among the early symptoms of LBD are physical issues – which is one standout difference between LBD and other forms of dementia. A person with LBD might have a tremor, or struggle with their fine motor skills. Try to notice if your loved one has difficult lifting utensils at dinnertime, or if their arm trembles when they rest. In addition, they could have trouble keeping their balance or lose coordination.

Sometimes the physical symptoms are more subtle. Has your loved one’s facial expressions become less animated and more rigid? Is your loved complaining of muscle stiffness? Has their posture become stooped? You can also look for signs in their handwriting. If their handwriting is smaller, or shakier, than usual – this can be a sign of LBD.

In addition to physical changes, look out for cognitive changes in your loved one. If your loved one is suffering from delusions or hallucinations, that’s an extremely common sign of LBD. She might also seem confused or have trouble interpreting visual information. Her alertness could vary drastically from one day to the next. She could also be experiencing memory loss and have trouble with judgement and planning. Patients with LBD will also have trouble recognizing familiar people earlier on than in other stages of dementia – like Alzheimer’s. 

A doctor will diagnose LBD in a patient who is suffering from both the physical and cognitive symptoms of the disorder. Even if they do not begin at the same time, as long as the physical symptoms begin within a year of the cognitive ones, or vice versa, doctors will likely give a diagnosis of LBD. LBD is a clinical diagnosis, which means that a diagnosis is not determined from a test, but from the doctor’s best judgement based on the information available.

In the early stages, LBD is commonly misdiagnosed as Alzheimer’s – especially if a person is not struggling with the physical symptoms quite yet. There are key differences between the disorders to look out for. In Alzheimer’s disease, memory loss tends to be more prominent earlier on than in LBD. For patients experiencing LBD, changes in judgement, planning, and visual perception usually occur before memory loss.

Movement is a huge difference. While Alzheimer’s does affect walking and balance as time progresses, immediate mobility issues are more prevalent in patients with LBD. If your loved one was diagnosed with Alzheimer’s, but primarily struggles with tremors and balance issues, you might want to consult your doctor about a new diagnosis. 

Hallucinations and delusions are also more common in LBD patients, especially early on. They might see people in the house or misinterpret objects for something else. On MichaelJFox.Org, Ava Butler kept a daily journal of her husband’s, who had LBD, hallucinations. “The plants on the south balcony turned into little children,” she writes, “Today they are musicians and they played for everyone down below. People danced to their music.”

An LBD patient might have trouble recognizing familiar faces right away. Butler writes that her husband sometimes mistook her for his brother, or even forgot his own name. These symptoms occur earlier on in patients with LBD than they do in patients with Alzheimer’s.

Once you understand the key differences between Alzheimer’s and LBD, you can determine if you believe they have been misdiagnosed. If you think they have, take them back to the doctor and re-examine the signs and symptoms together. Receiving the correct diagnosis is important for many reasons – from assuring that your loved one is taking the proper medications to knowing the best type of care for your loved one.

The proper medication is especially important. While antipsychotics might be prescribed to a person with Alzheimer’s to control their behavior, a person with LBD could suffer from severe side-affects from the same medications. Their movement might become even worse, and they could get fevers or even kidney failure. Be sure that your loved one’s doctor has evaluated your loved one for LBD before prescribing any anti-psychotics.

As LBD progresses, many of the symptoms will look similar to middle or late-stage Alzheimer’s disease. You might notice significant mood changes in your loved one – they could become easily agitated or paranoid.

In the early stages of LBD, your loved one will likely struggle with hallucinations or delusions. They could also have tremors and difficulty with basic movements. A person with LBD could get “stuck” in the middle of a movement, as their muscles completely stiffen. While their memory will be mostly intact, they will likely suffer from confusion and difficulty processing information or recognizing familiar faces.

In the middle stages of Lewy body dementia, a patient will suffer from extreme motor impairment, decreased attention, and significant confusion and paranoia. You will notice that your loved one is having more difficulty speaking and swallowing, and that the hallucinations might be becoming more severe. At this stage, it’s essential that your loved one has a caregiver present at all times. This is because the risk of falls is increased and hallucinations and confusion could lead to rash decision making, violent behavior, or wandering from the house.

In the later stages of Lewy body dementia, your loved one might experience extremely stiff muscles that are sensitive to touch. They might not be able to speak at all, or only in whispers. They will need help with all activities of daily living – from eating to bathing to getting dressed.

A person with LBD is likely to live five to seven years after a diagnosis. However, some patients have lived up to 20 years with the disorder.

There are many ways to provide care and support to your loved one with LBD. In addition to determining the best possible care (you can learn about care options in our episode on choosing the right care for your loved one), researching the disorder, and creating a care and medication plan with your loved one’s doctors, you can also act as a support system for them.

Include your loved whenever you can. Take them to the movies, religious services, and out to eat. In the pandemic, this might translate to movie nights at home and Zoom church meetings or picnics in the park. The important thing is to make your loved one feel included and surrounded by people they love. Social interaction with family will brighten your loved one’s mood and keep them from feeling isolated or depressed as they face this new diagnosis. Even as LBD progresses, include your loved one as much as possible. While they might not be able to communicate, they will still enjoy the company.

Be sympathetic to your loved one’s diagnosis. When your loved one hallucinates, don’t shut down his vision outright. Respect what he is seeing and remind him that he is safe, and he is loved. Ava Butler writes, “dismissing his reality is not helpful, and can actually make it appear that I am not trustworthy…remind him that we are safe, and that everyone is on our side…Ask him to look in my eyes. This can help ground him. Remind him that I love him…However if I’m part of the hallucination and am perceived to be involved in some conspiracy, I need to back off and give him space…ask him to describe what he sees. Sometimes this causes him to focus a bit more. What he sees can give me insight into how he is feeling.”

Butler also recommends turning negative into positive – if your loved one thinks they see a bad guy, acknowledge that the person “looked bad” but is actually good and there to help him stay safe. Finally, it’s important to stay calm, cool, and collected. Showing your own frustration or anger will only heighten the situation and make it worse.

Improving the quality of life for an LBD patient might include hiring physical therapists to assist with movement difficulties, speech therapists to help with swallowing and voice problems, occupational therapists to help with everyday activities, and mental health counselors to help with difficult emotions.

Music and art therapy can also help your loved one with their anxiety and give them something to look forward to that will keep them calm and feeling positive.

With over 400 types of dementia, it can be hard to pinpoint exactly what your loved one is suffering from. Once you have a clear diagnosis, though, you can begin individualized treatment and care. If your loved one has been diagnosed with LBD – or if you suspect they might be suffering from it – see your doctor right away and develop a treatment plan together.

It can be devastating to receive this diagnosis – but with the right research and proper care plan, you and your loved one can be as prepared as possible for the road ahead.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

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Sources:

https://www.nia.nih.gov/health/what-lewy-body-dementia#:~:text=Lewy%20body%20dementia%20(LBD)%20is,movement%2C%20behavior%2C%20and%20mood.

 

https://www.healthline.com/health/dementia/lewy-body-dementia#symptoms

 

https://www.verywellhealth.com/lewy-body-dementia-stages-progression-98735

 

https://www.lbda.org/10-things-you-should-know-about-lbd/

 

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/lewy-body-dementia

 

https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/progression-dementia-lewy-bodies

 

https://www.nia.nih.gov/health/how-care-person-lewy-body-dementia

 

https://www.thememorycenter.com/how-to-care-for-someone-with-lewy-body-dementia/

 

https://healthblog.uofmhealth.org/health-management/coping-strategies-for-lewy-body-dementia-caregivers

 

https://www.nia.nih.gov/health/what-lewy-body-dementia#:~:text=Lewy%20body%20dementia%20affects%20more,slightly%20more%20men%20than%20women.

 

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/parkinson-s-disease-dementia

 

https://www.michaeljfox.org/news/ask-md-what-lewy-body-dementia

 

https://www.michaeljfox.org/news/what-richard-sees-insight-lewy-body-dementia-hallucinations