Jim monitors several online LBD caregiver support groups. The following is the sort of post he often sees from newcomers:
I just learned that Ben has Lewy body dementia. He'd been doing some odd things for a while...thrashing around in bed, seeing little people that I couldn't see. We could live with that, but when he started arguing with our neighbors over imagined slights, I decided it was time to see a doctor. Ben has always been a guy with an even temper and a smile for everyone. This just wasn't like him. I finally got him to go see Dr. Kennedy. I'm sure glad I went with him! He was so normal, the doctor couldn't see much wrong with him. But when I started telling her what had been happening, Dr. Kennedy started nodding her head. She says that what's going on with Ben sounds a lot like this thing called Lewy body dementia, or LBD, as she calls it. That's what is making him act so odd.
Dementia? I thought dementia was forgetting things. Ben doesn't forget, he obsesses! But Dr. Kennedy told us that there's a lot more kinds of dementia than just the kind where people start out by forgetting. We left her office so confused! Ben seems relieved to have a name for his odd behavior but I'm still not sure. Dr. Kennedy just diagnosed it from what I reported about his odd behaviors. She didn't order any tests. When I asked about that she said there were some tests but they were awfully expensive and they wouldn't tell us much more than she could, just from his symptoms. She said that what Ben had wasn't curable, that it would get slowly worse. That's awful! Maybe he has something curable? How do we find out? - Emily
Emily's post generates a multitude of questions:
What are the symptoms that Ben's doctor used to diagnose his LBD? How did she decide it was LBD and not another type of dementia, or something that wasn't dementia at all?
Thrashing around in bed: When a person dreams, the brain normally switches off the ability to move. LBD interferes with this and the result is Active Dreams where a person physically acts out their dreams.
Seeing little people that Emily couldn't see: Seeing hallucinations early on is a definitive sign of LBD, vs. Alzheimer's where these show up much later in the progress of the disease.
Imagined slights: LBD affects the ability to think before it affects one's memory--another way it is different from Alzheimer's. This leads to delusions, based on emotions rather than fact. Since negative emotions are initially stronger than positive ones, delusions are often negative: imagined slights, rather than imagined complements--and a change from Ben's normal positivity.
Arguing with neighbors: Most dementias cause a loss of impulse control. Normally, a person might choose to laugh at or ignore a slight, especially if arguing might make further interaction difficult. However, without impulse control, Ben acts on what he feels without considering the consequences.
Fluctuating cognition: When Ben saw the doctor, he seems coherent and normal. She didn't see much in her office that signaled dementia. However, Emily's reports of his actions told a different story. This is another definitive sign of LBD, vs. Alzheimer's. While both tend to cause a person's cognitive abilities to wane over time, with LBD, there can be occasional upturns. When this happens in the presence of someone other than the care partner, and especially someone important to them, such as a doctor or a visiting family member, it is called "Showtime."
We aren't suggesting that you use this information to make your own diagnosis! A lot more goes into that besides recognizing a few symptoms, including knowing how to treat the illness. Instead, use it to recognize the need to see a doctor. If your loved one has been diagnosed with Alzheimer's and is displaying these symptoms, consider asking if they might also have LBD.
Drug sensitivity is a common LBD symptom that Emily didn't mention. This is also more common with LBD than with other dementias and so an accurate LBD diagnosis is important simply because of this. Some drugs that are used fairly often with other dementias can often trigger this sensitivity, causing more problems than they solve.
While you do need to get that diagnosis and listen carefully to what the doctor says, you should never follow a doctor's advice blindly. Ask questions while in the doctor's office and do some reading about it when you get home. You are your loved one's advocate. That means that you need to understand why the treatment is recommended and what it is supposed to do...and of course, the possible side effects that you should look for.
You also have to be able to trust the doctor, which means you need to do your homework there too. Not all doctors are well versed in working with LBD. This could easily include your family practitioner. However, they likely know someone in your community to whom they can refer you, for a second, more educated, opinion.
Next week's blog will be about learning how to judge the accuracy of your doctor's diagnosis and getting a second opinion.
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.