September newsletter, understanding Lewy Body Dementia
When a flower doesn't bloom you change the environment in which it grows not the flower |
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September Newsletter |
Understanding Lewy Body Dementia
Lewy body dementia can be one of the more misunderstood types of dementia. Its symptoms can change from day to day, or even hour to hour, and may include changes in thinking, movement, sleep, vision, and behavior. For families and caregivers, these changes can sometimes be confusing and frustrating. This month, we’ll take a closer look at Lewy body dementia, what makes it different, and how understanding the changes in the brain can help us respond with more patience, confidence, and compassion. |
A note for families: Lewy Body Dementia (LBD) does not look the same in everyone, and having one or more of these discussed symptoms does not necessarily mean someone has Lewy body dementia. Diagnosis involves looking at the overall pattern of symptoms, how they have changed over time, and when they began. If you are noticing the symptoms discussed in this newsletter, talk with your healthcare provider and consider seeking a neurological evaluation and full diagnostic workup. A thorough evaluation can help identify what may be causing the symptoms and guide the right care and support.
Parkinson’s and Lewy Body Dementia: What’s the Connection?
Parkinson’s disease and Lewy body dementia are closely related conditions. Both are associated with abnormal deposits of a protein called alpha-synuclein, known as Lewy bodies. Lewy body dementia includes two related diagnoses: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). The main difference is when the cognitive changes begin in relation to the Parkinsonian movement symptoms. When cognitive symptoms begin before or within about a year of the movement symptoms, clinicians generally use the term dementia with Lewy bodies. When someone has established Parkinson’s disease and cognitive changes develop more than a year after the movement symptoms began, the term Parkinson’s disease dementia is generally used. It is also important to remember that not everyone with Parkinson’s disease develops dementia. Source: National Institute on Aging, Lewy Body Dementia: Causes, Symptoms, and Diagnosis. |
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Symptoms often seen in Lewy Body Dementia
Cognition fluctuates: Unpredictable changes in concentration, attention, alertness, and wakefulness from day to day and sometimes throughout the day.
Hallucinations: Seeing or hearing things that are not present. Visual hallucinations occur in most people with LBD, often early in the disease. They are typically realistic and detailed, such as images of children or animals. Hallucinations based in other senses, such as hearing, are less common than visual ones but may also occur. Hallucinations that are not disruptive may not require treatment. However, if they are frightening or lead to a dangerous behavior, then a doctor may prescribe medication.
Sleep disturbances: Sleep disorders are common in people with LBD but are often undiagnosed. During REM sleep disorders your loved one may act out a dream, screaming, kicking, punching. Excessive day time sleepiness, insomnia and restless leg syndrome may also be present.
Movement symptoms: Some people with LBD may not experience significant movement problems for several years. Others may have them early on. Some people with dementia with Lewy bodies may never develop movement symptoms. Muscle rigidity, balance issues, falls, tremors, shuffling gait, stooped posture, difficulty swallowing, weak voice and reduced coordination.
Delusions and misperceptions: Your loved one may misinterpret what they see or develop strong beliefs that aren't based in realty. This can contribute to increased fear, agitation, suspicions and changes in behavior.
Changes in automatic body functions: In Lewy body diseases, the protein can misfold and build up into clumps called Lewy bodies. these deposits affect the brain and nervous system pathways involved in regulating body functions. Low blood pressure, fainting, urinary issues, difficulty regulating body temperature and constipation. |
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Supporting your loved one
One of the most challenging parts of Lewy body dementia is that symptoms can change from day to day, or even hour to hour. When your loved one is having a clearer moment, enjoy it without expecting it to last. When they are confused, sleepy, or having difficulty, meet them where they are and adjust your expectations. If they experience hallucinations or delusions, avoid arguing or trying to convince them that what they are seeing or believing isn't real. Instead, acknowledge that the experience feels real to them, offer reassurance, and gently redirect when needed. Sleep changes can also be common, so keeping a calm, predictable routine and a comfortable sleep environment may help. You don't have to fix every moment. Sometimes the most helpful thing you can offer is patience, reassurance, and the feeling that they are safe. |
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"Please promise me, if and when the day comes that I may forget who you are, please promise that you won’t forget that I am still me.”— Mara Bottas, When Caring Takes Courage |
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Some Products that I like |
LBD Medical Alert card-This Medical Alert Wallet Card has been developed to help you quickly inform Emergency Room medical professionals of important medication sensitivities in LBD. Present this card any time your loved one needs medical care.
 Amber Motion sensor night light-Warmer and brighter than red, it casts a gentle sunset that comforts. When motion is detected, it brightens then gently turns off after 60 seconds. This light can help create a safe, easy-to-see path to the bathroom at night while providing gentle lighting that may be less disruptive to sleep. |
“Just like gems, each person is precious, valuable, and unique, and given the right setting and care, can shine.” — Teepa Snow  |
I hope you've enjoyed this newsletter but if you didn't and would like to be taken off of my email list please reply and let me know This is NOT a replacement for healthcare. This is not considered healthcare advice. Please consult your loved one's healthcare providers for best practices and recommendations for your situation. |
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