When Drugs Might be Helpful

Anyone who has read our books, especially the last one, Managing Cognitive Issues in Parkinson's and Lewy Body Dementia, knows that we advocate minimal use of drugs. However, there are times when they can be helpful and should be considered. This goes with several caveats, however.

No two people with Lewy body disorders can be expected to respond the same to any drug. Each new drug is an "experiment." Reactions vary greatly, from tolerating a drug well to being unable to use it at all. Most drugs should be:

• started in very small doses,
• monitored carefully and
• stopped if unwanted reactions appear.

The drugs at most risk for unwanted reactions are those in the anticholinergic family, which includes drugs used to manage behaviors, anxiety and agitation. (Click here for a long list of these drugs.) These drugs vary as to strength and the length of time they stay in the body. The drugs of choice by many Lewy-savvy doctors are Seroquel, Clonopin and Ativan. These are all mild with a short half-life, and thus tend to cause fewer problems.

Lewy bodies tend to cause a person to become sensitive to certain drugs. Literature reports that at least 50% of PwLBD will be drug sensitive. From listening to thousands of caregivers in person and online, we believe that percentage is much higher. However, drug sensitivity:

• is different from an allergy, where even a small dose may cause a severe reaction.
• causes a person to react to a normal doses as though it were an overdose. In many cases, a smaller dose may be tolerated.
• symptoms of overdose vary depending on the drug and the individual, but include muscle problems, increased or new behaviors, heavy sedation, and confusion.

Lewy bodies can make some people SUPER-SENSITIVE. Once a person has shown such sensitivity to any drug, they are much more likely to be equally sensitive to another. For these people, the use of any anticholinergic drug is seldom helpful, even in the smallest of doses, and can be disastrous.

The progress of the disorder can cause a person's response to a drug to change. A drug that once was helpful may become ineffective, or worse, begin to cause negative side effects. Therefore, all drugs should be reviewed every few months.

Last but not least, in most cases, non-drug remedies should be tried first, before any drug is tried. Reducing stress and keeping your loved one as healthy as possible, will solve many problems without resorting to drugs.

That said, here are some situations where we believe drugs ARE helpful:

Dementia drugs can temporarily improve cognition. They can also decrease non-cognitive symptoms, such as hallucinations, delusions. anxiety and agitation. In addition, they are fairly safe. The most troublesome side-effects are GI discomfort. The doctor may have to try more than one to get a good fit.

Drugs, like antibiotics, used to fight infections are not only fairly safe, they can be life-saving. This is one instance where the doctor may need to prescribe a large enough dose to fight the infection and may not be able to start small. These drugs should only be used if an infection is present. Home remedies are better for prevention: cranberry juice to prevent UTI's, proper drinking procedures to prevent aspiration leading to pneumonia, etc.

Not everything is caused by Lewy bodies! Drugs may be needed for other issues such as heart problems, diabetes, or depression. These illnesses can usually be treated safely, but the drugs used should be reviewed. The doctor will likely want to replace any likely to cause symptoms of sensitivity with safer drugs.

When every non-medical remedy has been tried and the PwLBD is still agitated, difficult to deal with or uncomfortable, then behavior management drugs may be helpful. "Uncomfortable" is probably the most important. For example, if your loved one is not upset about having hallucinations but you are, this is NOT a reason to medicate. Your loved one will only have a problem if you make it one.

Some events, such as a move into residential care, are going to be anxiety-ridden no matter what you do. Anxiety is like pain. If you treat it before it takes on a life of its own, you don't have to use nearly as many drugs for the same--or better--effect. Many Lewy-savvy doctors will prescribe a tiny amount of a weak behavior management drug for a few days to a week before the event and, if adjustment is involved, for a week or so after the event.

Caregiver stress, depression and burnout are all mirrored by loved ones who reflect them back with difficult behavior. Don't feel embarrassed to ask your doctor for a mild antidepressant--that is for you, not your loved one. While non-medical stress management tools can and do help, if you let it go too long, you may need a medical boost, to get you where you can use them. Remember, the better you feel, the better your loved one feels.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

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.