Dementia Drugs or Not?

We talk a lot about being very careful about the drugs our LBD loved ones take. What about dementia drugs (Aricpet, Exelon, Razadyne and Namenda)? They definitely aren't as scary as the drugs used to manage behaviors, but still, caregivers wonder if they are safe. And even if they are safe, are they effective? Should our loved ones bother taking them?

The bottom line is that we believe that in most cases, these drugs fairly safe. We also believe they can be quite helpful, although not necessarily in the way one might think. The amount that dementia drugs improve cognition can be fairly limited, and if this were their only effect, they might not be worthwhile. However, they can be quite effective in decreasing symptoms such as hallucinations, paranoia, anxiety or even depression. Further, they do this with fewer and less serious side effects than many of the drugs most often used for the behavior problems more common with LBD than with Alzheimer's. The downside is that eventually, they quit working.

First, some basics:

• The body is a wonderful "drug factory" that builds chemical compounds, then breaks them down and rebuilds them as needed.
• Acetylcholine, one of the chemicals targeted by Lewy bodies, facilitates cognition and other brain functions.
• Lewy bodies deplete acetylcholine, causing dementia and other LBD symptoms. Without adequate acetylcholine, the brain cells that use it to weaken and eventually die.
• All dementia drugs require live cells to work.
• No dementia drug stops the Lewy bodies from destroying brain cells. As more and more cells die, the drugs become less effective.

Aricept, Exelon and Razadyne, all act to inhibit the body's natural breaking down process. This increases the amount of available acetylcholine so that there are fewer LBD symptoms.

Namenda works in a similar way with a different set of chemicals that aren't so specific to LBD. It is usually prescribed in combination with one of the first three drugs. Its addition will often increase the waning effects of the first group of drugs, for both cognitive and non-cognitive symptoms. While Namenda does seem to be effective longer, its action is still temporary. Eventually, there won't be enough live cells for it to work either.

As for safety, these drugs all tend to be all pretty tough on the GI tract--on the stomach and gut. Each drug is a little different. Doctors will usually try oral Aricept first (its generic version is the least expensive). It there is a problem with it, the doctor may try oral Exelon or Razadyne next. If these cause too much GI distress, Aricept and Exelon come in patches that bypass the GI tract and decrease this problem significantly. Patches are more expensive but they do have fewer side effects. Although Namenda has the same GI issues as the other drugs, our experience is that most caregivers report that their loved one can take it without a problem.

And so, yes, for most LBDers, dementia drugs can be considered a very helpful part of their treatment--especially for the non-cognitive symptoms that can be so difficult to treat. However, always remember that each person will react to drugs differently. If your loved one may be one of the few who have bad reactions to these drugs, then consider some of the many non-drug methods available, such as massage, aromatherapy or music therapy. In fact, consider these anyway! Their use will almost always reduce the amount of drugs that are needed overall. In fact, no dementia drug is as effective as exercise (and probably several other non-drug therapies such as music) for improving cognition!

For more information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders