Welcome to the 7th in our 17-part series on dementia. About 50 million people suffer from dementia worldwide. It is a debilitating disease, but it may be preventable. So I’ve set out to learn as much as I can and bring you along with me. In part 3 I went through the many types of dementia, and we’re going to have separate episodes on the most common of these. This is the fourth of that series-within-a-series, and it’s about Lewy Body Dementia (LBD).
LBD affects more than 1 million Americans. It typically begins at age 50 or older, although sometimes younger people have it. It is slightly more common in men than in women. It is not normally considered a genetic disease, and there is no known predictive test. However, research is ongoing to find more genes that may indicate LBD risk.
Lewy bodies are abnormal protein deposits that disrupt the brain’s normal functioning. The specific protein is called alpha-synuclein (si NU clee un). They are named after Friederich Lewy, a German neurologist, who, in 1912, discovered such deposits in people with Parkinson’s disease.
Diagnosis is, of course, as challenging as it is with other forms of dementia. There are two diagnoses: (1) Dementia with Lewy Bodies (2) Parkinson’s Disease Dementia.
There are a ton of symptoms, so here they are:
affects:
-thinking
-movement
-behavior
-mood
visual hallucinations
sleep difficulties
problems with focus and attention
More on movement. This disease is linked with Parkinson’s and these symptoms are called Parkinsonism:
-muscle rigidity or stiffness
-shuffling walk, slow movement, or frozen stance
-tremor or shaking, most commonly at rest
-balance problems and repeated falls
-stooped posture
-loss of coordination
-smaller handwriting than was usual for the person
-reduced facial expression
-difficulty swallowing
-weak voice
So, of course if someone experiences these symptoms they should also be checked for Parkinson’s.
Causes:
An accumulation of lewy bodies is associated with a loss of certain neurons in the brain that produce 2 important neurotransmitters, which are the chemicals that act as messengers between brain cells. Acetylcholine, which is important for memory and learning, and dopamine, which is important in behavior, cognition, movement, sleep and mood. See episode 151, which is all about dopamine.
Risk factors:
Age is the big one, most people who develop the disorder are over 50. No lifestyle factor has been proven to increase risk of LBD. Diseases that might increase risk are Parkinson’s, REM sleep behavior disorder. We discussed genetics earlier, and research is ongoing there.
Prognosis:
The life expectancy of someone with LBD is between 2 and 20 years, with the average being 5-8 years. Speed of progression varies, but symptoms start slowly, with only mild impairment. In later stages, the person with LBD often becomes fully dependent on others.
Other than the usual palliative care, there are some medications approved for treating LBD symptoms, and some specific indications and warnings regarding use of these medications in patients with LBD. That’s where you need a doctor to make sure you’re getting the right treatment.
There is a Lewy Body Dementia Association. A lot of resources are available at lbda.org, and you can actually by an LBDA t-shirt for your dog there! There are resources for caregivers there, there is a locator for local support groups. I found a support group 9 miles from my house! And I think every state has at least one, but be sure to check there definitely if you have LBD or know someone with it. You can also volunteer and donate from that website.
So also at LBDA, and I saw this on the NIH website as well, they list opportunities to participate in clinical trials. So I think there probably is a lot of work going on in that area, because they are definitely looking for people with and without LBD to participate.
References:
https://www.nia.nih.gov/health/what-lewy-body-dementia
Outsmart Dementia. (2020). The latest tools for controlling cognitive health — preventing dementia and Alzheimer’s disease. Morton Grove, IL: Publications International, Ltd.
https://www.lbda.org/rcoe