With the likelihood of heat waves on the rise, it is particularly important to be aware of the impact of extreme heat on people with Lewy body dementia (LBD). LBD on its own has a disruptive impact on the Autonomic Nervous system (the automatic part of our nervous system that regulates many of the body’s functions such as respiration, heart rate, blood pressure, digestion, body temperature, etc.) See February 2020 Blog on Lewy Body Dementia Resource Center website, “Lewy Body Dementia and the Autonomic Nervous System.” Knowing how easily this can happen can help caregivers know how to cope, no ..read more

My wife passed away last year due to complications of Lewy body dementia (LBD). Naturally, I have spent much time reflecting on our life and her journey that we shared together. I have listened to many caregivers relay their stories and express their frustrations while caregiving. I hope that my reflection might offer a little comfort and maybe revelation through your own journey as caregivers. I am not a doctor, and I don’t have any formal expertise; I’m just a former caregiver who cared, like you. I have come to believe that there are three main types of caregivers for those caring for loved ..read more

Written by M of NY, a Caregiver to her Husband: Several years ago, my husband began, some evenings, yelling and laughing, punching the air, and flailing his arms and legs around in his sleep–even once throwing himself into a corner of the nightstand. Other times, he had minor muscle jerks in his hands and legs, all without waking up. He would have no memory of these experiences in the morning, or if I woke him up during one of these times. To stay out of harm’s way in the evenings, I’d move to another bed to sleep. We had purchased a larger mattress, for more room for him, but that did not hel ..read more

Written by M of NY, a Caregiver to her Husband: A topic I feel is very important is the loneliness of having a life veer off course from a newly diagnosed serious illness. You have already begun to notice things you don’t understand, and this can be confusing and unsettling. Knowing you are part of a community of people and their partners who are living with this illness, that you have peers to talk with who know what you are talking about, and that everyone has language for this conversation, is valuable. Even once you have been given the name for the illness, the early stage of living with L ..read more

In the previous blog about Hallucinations and Delusions, we addressed handling the more simple, non-frightening hallucinations and how to keep from escalating the situation. But what to do when the person with LBD is experiencing a hallucination that is extremely frightening and by its very nature, throws the situation into a delusion that must be handled and dispelled to keep the person calm and safe. A person hallucinating is seeing (or hearing, tasting, feeling) something that in reality is not present. Most often it involves sight, but other senses can be involved as well. A delusion is a ..read more

Being with a loved one who is experiencing hallucinations is a disconcerting experience and can actually feel very frightening. In this blog, we will address “simple” hallucinations. In part 2, we’ll talk about the more complex situation of delusions with or without hallucinations. Fear is often our first reaction when our loved one with LBD sees things that aren’t there, because it makes us feel disoriented and out of control. But it is often nothing to be frightened about. So, with the initial realization that your loved one is seeing something that is not there… Take A Breath. This may feel ..read more

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If your loved one is among the 1.4 million Americans living with Lewy Body Dementia (LBD), you may be surprised to learn that many common antipsychotic medications can cause severe side effects. This is even more important to be aware of if your loved one hasn’t yet received a Lewy Body Dementia diagnosis. Since LBD is often challenging to diagnose, many individuals with the condition are misdiagnosed in the early stages and given medications that cause adverse effects. Here, we share more about how antipsychotic medications affect those with LBD and what to look out for: Why Individuals With ..read more

The coronavirus pandemic has been a difficult time for all of us, but it’s been especially challenging for individuals with dementia. Many care partners have noted increased instances of disrupted routines, resulting in accompanying problems with memory, mood, and sleep. If someone you love is among the 1.4 million Americans affected by Lewy Body Dementia (LBD), you may be interested in finding creative ways to stay engaged during quarantine. Here, we share simple and fun ways to sharpen the mind that you can incorporate in your routine. Dancing Physical activity is often beneficial for those ..read more

Lewy Body Dementia (LBD) is the second most common type of progressive dementia and approximately 1.4 million Americans have been diagnosed with this condition. Since Lewy Body Dementia symptoms are often similar to other diseases, it’s notoriously difficult to diagnose. However, receiving a timely and accurate diagnosis is essential for treating the disease appropriately. Symptoms of Lewy Body Dementia often include sleep disorders in addition to changes in cognition, movement, and mood. Here, we share more about the sleep disorders associated with LBD so you can be aware of what to watch fo ..read more