First, some facts drawn from our latest book, Managing Cognitive Issues:
• As many as 80% of people with PD will show signs of dementia by age 80. If they have active dreams, hallucinations or mild cognitive impairment, dementia will usually occur within a few years.
• In 2005, experts from the dementia and movement fields met and identified Lewy body dementia as an umbrella term for Parkinson’s disease with dementia (PDD) and dementia with Lewy bodies (DLB). At that time they agreed that both disorders had the same cause and the same non-motor symptoms. They arbitrarily set a rule that if the non-motor symptoms started at least a year after the motor symptoms, then it would be called PDD. Otherwise, it would be called DLB.
• Lewy bodies are present in both LBD and PD, but in different parts of the brain. In PDD, they are present in the areas of the brain where both PD and DLB symptoms originate.
• Researchers believe that Lewy bodies are normal proteins that environmental toxins have caused to clump togather and cause more damage, the type of damage depending on where the Lewy bodies are in the brain.
• With PD, Lewy bodies are in the midbrain where fine motor functions are controlled. With DLB, Lewy bodies are in the cerebral cortex, where thinking is controlled. With PDD, Lewy bodies are in both areas and both motor and thinking functions are affected.
• Lewy bodies can also be in other areas of the brain, where they can affect functions like visual perceptions, dreams, swallowing, blood pressure, etc.
Back to the questions: First, there is a natural resistance to accepting that an already debilitating disorder can advance to include other, even worse symptoms like dementia, i.e., become PDD.
This resistance is often assisted by their doctors, many of whom still do not accept that PD advances into dementia as often as it appears to do. When dementia does occur, some doctors say that the disorder was never PD to begin with, that it was always LBD, and that the motor symptoms were “Parkinsonism” not Parkinson’s, itself. When your doctor doesn’t believe the two disorders are linked, it makes sense that you won’t either.
We believe that the information linking PD and LBD gets stronger every year. However, doctors are often working with information that isn’t that recent. The ten years since 2005 is a very short time where medical information is concerned. Many doctors and movement specialists are still following what they learned in school, and may not support a connection between PD and LBD. Worse, even experts disagree! While all seem to agree that Lewy bodies are present in both, not all agree that PD advances to LBD. Some say that when it does, it wasn’t PD to start with, but “Parkinsonism,” which is what DLB motor symptoms are called.
When we visit PD groups and talk about LBD symptoms like hallucinations and active dreams, we see heads nodding in recognition. Every group we've visited has at least one person, often many, with one or both of these symptoms. This helps the group to see the connection between the two disorders. Then we talk about Lewy bodies and how they spread from the area of the brain that causes PD to other areas where they cause these non-motor symptoms. When they ask me how often a person with PD will advance into LBD, I tell them that I, personally, think that it will happen 100% of the time (pause) if a person lives long enough, which might be 105! That usually brings a laugh—and a feeling of reprieve, along with a better recognition of the connection.
On the positive side, we really do see a change of attitude. Most people in the PD groups we’ve attended this year see LBD as at least a sister disorder, with many similar non-motor symptoms, if not an actual part of PD. Most of them have heard of Lewy bodies. Most are interested in learning more. Some already had our first book that focuses specifically on LBD and many were interested in our new book.
As a LBD caregiver in a PD group, you get to be a teacher. You also get to let people know that life goes on, no matter what and that just like they learned to adapt to movement challenges, they will also find ways to adapt to non-motor challenges. For your own support and education, you may need to turn to online groups. There are several very good ones and more starting every day. Check these out and choose one or more that you feel comfortable with.
LBDA.org: Access the first three groups here. Under Find Support. Check to see if there are any local groups near you. Then scroll down to Virtual groups to access the following groups: LBDA Forums, LBD Caregivers Yahoo group and LBD Caring Spouses Yahoo group.
Also check out these two Facebook groups:
Lewy Body Dementia Support Group
Forget-me-not Lewy Body Dementia Support Group
For information about Lewy body disorders, read our books:
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.