I’ve heard a bit about it in the news during the past few months. Long-beloved actor Robin Williams was diagnosed with it. Casey Kasem’s family battled over his care while he had it. Lewy Body Dementia is the second most diagnosed form of Dementia, following Alzheimer’s, but it’s a disease not very many people know about or understand.
Right now, two out of three cases of Lewy Body Dementia go undiagnosed, and there are no widely available tests that can definitively diagnose it pre-mortem.
I’m not writing this blog because it’s National Lewy Body Dementia Awareness Month or anything like that. I’m writing this because today marks five years since my grandmother passed away from it, so I’ve seen how it can ravage a person’s body and mind. My Grandma Kay was a vivacious, amazing woman who is incredibly missed every day, and after watching her battle with this vicious disease, I feel it’s important to do what I can to advocate for those living with Lewy Body Dementia and those who give them care.
What is Lewy Body Dementia?
As I mentioned, although it doesn’t receive the attention some diseases get, Lewy Body Dementia is not a rare disease by any means. It affects the lives of approximately 1.3 million people and their families in the United States. Since Lewy Body Dementia can only be definitely diagnosed post-mortem and can closely resemble other commonly known diseases like Alzheimer’s and Parkinson’s Disease, it is, as a whole, widely undiagnosed.
Part of the reason why Lewy Body Dementia is so often missed is that it is an umbrella term for two related conditions: Parkinson’s disease dementia and Dementia with Lewy bodies. The beginning stage symptoms of Lewy Body Dementia differs from person to person, but those symptoms reflect the same underlying biological changes in the brain that are associated with Lewy Body Dementia.
Even though it can take more than a year for the symptoms to develop enough for a doctor to diagnose Lewy Body Dementia, it’s very important that the patient and the patient’s family pursue a formal diagnosis so early treatment can be administered. Early diagnosis can extend the quality of life and independence of the people affected.
Is it Lewy Body Dementia or something else?
Early diagnosis can lead to better, more accurate treatment that can extend their quality of life. People with Lewy Body Dementia respond better to certain dementia medications than people with Alzheimer’s, and people with Lewy Body Dementia respond more poorly to medications for movement disorders like Parkinson’s than those with Alzheimer’s do.
What are the symptoms?
Every person with Lewy Body Dementia has different degrees and onsets of symptoms, and some people show no signs of certain symptoms of the disease, especially in the early stages.
The central feature of Lewy Body Dementia is progressive dementia, meaning, there are deficits in attention and executive function, like problem solving, abstract thinking, and reasoning. Memory impairment isn’t always present in the early stages.
Fluctuating cognition with variations of attention and alertness is one core feature. Recurrent complex visual hallucinations that are well-formed and detailed are another symptom that can be particularly concerning, especially to Lewy Body Dementia caregivers. Spontaneous Parkinson’s Disease symptoms can also become problematic.
Other symptoms of Lewy Body Dementia include:
- Repeated falls and fainting
- Transient, unexplained loss of consciousness
- Autonomic dysfunction, the loss of basic bodily functions
- Hallucinations of other senses
- Visuospatial abnormalities
- Other psychiatric disturbances
If you have Lewy Body Dementia or give care to someone who does, it’s very important to wear a medical ID. Those with Lewy Body Dementia are likely to walk or pace aimlessly at some point during their illness, which can be the result of memory loss or disorientation. Since someone with Lewy Body Dementia can become aggressive or scared when approached, it’s important that they’re wearing a medical ID so medical professionals understand the best way to treat and return the patient.
We recommend you engrave:
MAY WANDER-CALL 911
Caregivers for those with Lewy Body Dementia should also wear a medical ID. In the event a caregiver is in an accident or becomes unable to advocate for him/herself and the person in his/her care, a medical ID can do that for them.
Even though it’s been five years since I’ve seen my grandmother and many more since I’ve seen her in the healthy way she will remain in my mind, it still pains me to think of all the life events she has missed and will miss. I hope that education and understanding Lewy Body Dementia and its early stage symptoms can help someone else in their battle so they can receive treatment that can extend their life and the quality of it so they don’t have to miss those moments.
You can learn more about spotting early symptoms, treating, and caring for those with Lewy Body Dementia at LBDA.org
As UX/UI Designer and Website Manager for Lauren’s Hope, Brittany Raum wears a lot of hats. Wearing her UX/UI Designer hat, Brittany creates positive customer experiences on the website by creating and implementing a blend of functional design that helps each visitor more easily find their way to the right products and information. Her Website Manager hat is no less integral to the customer experience. In that role, Raum is involved in strategy, analytics, troubleshooting, and a wide array of tech-driven projects. She collaborates with every part of the Lauren’s Hope team, always looking for ways to better serve our customers.