Robin William's death put Lewy body dementia (LBD) in the spotlight. Schneider recently said the coroner found signs of LBD in Robin's brain. She also said that the doctors who analyzed the report told her that Robin’s was one of the most severe cases of this disease they had seen.
Williams took his own life in August, 2014. This past month, Schneider has participated in a series of media interviews to raise awareness about this relatively unknown form of dementia.
LBD is the second most common neurological dementia after Alzheimer's. Even so, most people have never heard of it. According to Dr. James Galvin, neurology professor at Florida Atlantic University, "It is the most common disease you have never heard of."
Now that I've l learned more about LBD, I have a better understanding of my own Parkinson's disease (PD)… and that of others. For example, I now recognize that my PD support group actually has two sub-groups: those members with LBD and the rest of us.
I've attended meetings of this support group for six years, and I've always been puzzled that several members seemed to have symptoms that are very different from the symptoms the rest of us exhibit. Those in this small group are more troubled by falls. They joke about their hallucinations. I now understand that they probably have LBD.
I don't appear to have the major symptoms that signal Lewy body dementia. But that doesn't mean I don't have to worry about dementia. Those of us with PD can have either Lewy body dementia or Parkinson's disease dementia.
Parkinson's and Dementia
Two forms of dementia are associated with Parkinson's:
- Parkinson's disease dementia is diagnosed when someone already has the movement (motor) symptoms of Parkinson's and has had them for some time before showing signs of dementia.
- Lewy body dementia is diagnosed when someone has the symptoms of dementia either before or at the same time they develop Parkinson's. But in some cases of LBD, no motor symptoms may appear at all.
Symptoms can include forgetfulness, slow thought processes, and difficulty concentrating. These symptoms can make finding words and names – and following conversations – difficult.
People can also experience changes in appetite, energy levels, and sleeping patterns. They may find themselves napping more during the day, or becoming less engaged with what’s happening around them. They may lose interest in things they previously enjoyed.
Problems such as anxiety, depression or irritability can become an issue because of dementia. Some people may also find it difficult to control their emotions, or they may experience sudden outbursts of anger or distress, although these problems are not common.
Some people with Parkinson’s dementia might also develop visual hallucinations and delusions.
(Source: Parkinson's Dementia Information Sheet)
Lewy Body Dementia
LBD affects memory, language, concentration, and attention. People with LBD may have trouble reasoning, recognizing faces, or performing simple actions.
People with this form of dementia commonly experience visual hallucinations, which can be quite vivid. These “visions” can begin early in the development of dementia. Sufferers risk falling because they may have trouble judging distances.
People with LBD could experience episodes of confusion, which can change significantly from hour to hour or from one month to the next.
Some may also develop Parkinson’s-like symptoms, such as slowness of movement, stiffness, or tremor. LBD can also affect pulse and blood pressure.
(Source: Dementia with Lewy Bodies Information Sheet)