LBD and Surgery Drugs

Last week was about drugs in general. This week is a closer look at anesthetics. Surgery is a scary proposition for LBD caregivers. Any drug strong enough to use for surgery will likely have the risk of being Lewy-dangerous. However, some are worse than others:

Inhaled anesthetics are gases such as isoflurane or enflurane used to induce a controlled coma and allow surgery. They can make any elderly person confused for several months afterwards. The confusion may last much longer or be permanent if Lewy bodies are present.

Intravenous (IV) drugs such as midazolam (Versed) or propofol (Diprivan)   are not as Lewy-dangerous as inhaled drugs. Many LBD caregivers report successful surgeries using these drugs. That said, Versed is a strong benzodiazepine and Diprivan is a strong sedative—both classes of Lewy-dangerous drugs.

Regional anesthetics are used with spinal or epidural blocks. These drugs “deaden” the area of the surgery and tend to be safer than either of the above general anesthesias. Some major surgeries such as knee replacements can now be done with spinal or epidural blocks using low amounts of drugs like propofol or a combination of regional anesthetics boosted by opiates or narcotics. There appears to be less drug danger and less need for postoperative drugs with these procedures.  Limitations include:

• This method does not work for upper areas of the body, such as dental work.
• Because a person is awake during the procedure, cooperation is required. If your loved one has a history of agitation during stress, this might not be an option.
• It requires an anesthesiologist skilled in the procedure. Most problems with this type of surgery result from it being done incorrectly.

Sometimes a person’s first introduction to drug sensitivity occurs after surgery:

Luke had very mild Parkinson’s and his balance wasn’t the best. When he tripped, he fell and broke his leg. The doctor told us Luke would need surgery if he ever hoped to walk again but that with his PD, there was a possibility of dementia. Luke hated the idea of being bedfast, but even more, he was in extreme pain, and so we agreed to the surgery. He started hallucinating in the recovery room, seeing bugs crawling on the walls. I hoped that over time, he’d improve. He did, some. But he still gets very confused and still has hallucinations now and then. Nevertheless, we’d make the same decision again. He was in such terrible pain.   –Cindy

For Luke and his wife, there was only one way to go—have the surgery and stop the pain, while hoping that Lewy didn’t show up. For others it isn’t that simple—there may be other choices, such as medical treatment, physical therapy, or even learning to live with the problem.

Annie had experienced active dreams for years before she had an elective surgery in the late 1990’s. Annie’s dementia showed up not long after afterward. If she had known, as we do today, that active dreams are a strong risk factor for LBD, she would have opted against the procedure. She had lived with this problem most of her life and she could have continued to do so.   –Jim

Sometimes the choice is between quality and length of life.

Bill’s pacemaker battery was getting low and needed replacing. I asked the cardiologist if the pacemaker had been triggered. It hadn’t, which made a decision against surgery easy. But then I found out his defibrillator battery was getting weak. It had been activated several times, making that decision harder. If it quit, so would Bill’s heart. I still decided against the surgery, opting for quality of life over quantity. About six months later, that battery stopped working and Bill died in his sleep. If I had it to do again, I’d make the same decision.  –Marla

Some of the danger from surgery can be avoided if the anesthesiologist understands that geriatric patients are similar to children who require much smaller amounts of drug for the same effect. A person of any age at risk for or with LBD can expect similar or even more severe responses.

Consider all other options first. If you do decide surgery is necessary,

• Request a geriatric anesthesiologist who understands LBD’s drug sensitivity issues.
• Well ahead of the surgery, send a letter to the surgeon outlining your concerns. Include the LBDA wallet card and any examples you have of how drug sensitive your loved one is.
• Arrange to meet with the anesthesiologist prior to the surgery to discuss your concerns about LBD and drug sensitivity again.

We are not physicians and anything we say here is informational only. Always check with your physician about your individual personal concerns.

Lewy Dangerous Drugs

LBD caregivers generally know their loved one should be careful about drugs. However, with all the scientific terms and definitions, learning about which drugs are safe and which aren’t can seem daunting. It doesn’t have to be. While it is true that the more you know the better you can be sure of the right treatment, the bottom line is fairly simple:

Be wary of any drug used to sedate or to treat anxiety or behavior related problems. If given, report any heavy sedation, increased LBD symptoms or muscle problems.

Ask about possible side effects of a drug given for any other problem such as bladder control and monitor closely. Report any odd reactions, especially those that cause or increase LBD symptoms, muscle problems or heavy sedation.

Ask about possible non-drug solutions to the problem. Many behavior issues respond well to easily learned non-drug anxiety and stress management.

Any drug dangerous for someone with LBD may also be dangerous for someone at risk for LBD. Once a person has another Lewy body disorder like Parkinson’s or other risk factors, be concerned. The likelihood of problems may not be as high, but it is there.

For those who want to know more, read on.

The three drug properties especially troublesome with LBD are:

Anticholinergic: The drug blocks acetylcholine, a neurotransmitter needed for cognition. When Lewy bodies have already depleted this chemical, the drug may cause or increase confusion and other dementia symptoms.

Extrapyramidal: The drug blocks dopamine, a neurotransmitter needed for mobility. When Lewy bodies have already depleted this chemical, the drug causes or increases muscle stiffness, tremors, cramping, and constrictions.

Sedative: The drug slows the central nervous system (CNS), which includes the autonomic nervous system (ANS). When Lewy bodies have already comprised the ANS, this causes over-sedation.

The stronger these properties are and the more of them present in a drug, the more likely that drug will be dangerous for a person at risk for LBD. For example, Atropine is a very strong anticholinergic while Haldol has all three properties. Both are quite likely to be dangerous with LBD.

These drug classes are of special concern:

Anticholinergics: This huge class of acetylcholine blocking drugs is used to treat a variety of symptoms from anxiety to bladder control. They should be used with caution, if at all, by the elderly and anyone at risk for dementia. The Therapeutic Research Center posted this list of anticholinergic drugs. Download it and keep it handy for a reference.

Antipsychotics: This class of medicines are approved by the FDA to treat psychoses such as schizophrenia. Although they have never been approved to treat dementia, doctors may prescribe them to treat LBD’s delusions, hallucinations, combativeness or acting-out behaviors.

• Traditional antipsychotics (TAs): Drugs developed in the 1950’s to treat severe psychosis. They have strong sedative and extrapramidal properties and mild anticholinergic properties, making these drugs quite dangerous when Lewy bodies are present. With the exception of haloperidol (Haldol) these drugs are seldom used anymore. However, it is still commonly used in hospital emergency rooms for to calm down disruptive patients.
• Atypical antipsychotics: Also called second generation antipsychotics. These drugs don’t cause the muscle problems that TAs do, but they have strong sedative and anticholinergic properties. Even so, many Lewy-savvy physicians still prescribe these drugs, especially quetiapine (Seroquel), as the best of the limited choices available for otherwise uncontrollable acting out.

Benzodiazepines: A family of sedative drugs used to treat anxiety. These drugs also have anticholinergic properties. This combination makes them so potentially dangerous when Lewy bodies are present that they should almost always be avoided. In fact, recent research finds these drugs potentially dangerous for the elderly in general. The Wikipedia has an extensive list of these drugs along with their half-lives. The longer the half-life, the longer the drug will stay in the body, although Lewy bodies tend to slow down the process and extend that time.

Inhaled Anesthetics: These extra strong sedative drugs used to induce a controlled coma to allow surgery can make any elderly person confused for several months afterwards. The confusion may last much longer or be permanent if Lewy bodies are present. Some surgeries can be done with less dangerous drugs and some condtions can also be treated without surgery. Ask the physician about alternative choices when considering surgery for anyone with or at risk for LBD.

More about drugs next week!

New Books about LBD

A couple of books are coming out soon that might just be good competition for A Caregiver’s Guide to Lewy Body Dementia. Both are resource books rather than the personal stories that most books about LBD have been up to now. Both are by knowledgeable physicians and both are directed more towards the family than the medical community. Click on the book to go to Amazon and learn more about it.


Making the Connection Between Brain and Behavior, 2nd Edition. Coping with Parkinson’s Disease by Joseph Friedman, MD. This book is due out on July 23rd.  Dr. Friedman is a member of the LBDA Scientific Advisory Council. I’ve read parts of the first edition of his book (published in 2006) and found it excellent, if dated. Dr. Friedman’s writing is clinical enough for professionals but fairly easy to read by families as well.  You can order this book from Amazon now for $13.63 and they will send it to you as soon as they get it in.

Dementia with Lewy Bodies and Parkinson’s Disease Dementia: Patient, Family and Clinician Working Together for Better Outcomes, by J Eric Ahskog, MD, PhD. It is due out in September and is already listed on Amazon. Dr. Ahskog has worked at Mayo Clinics for over 30 years and so he has that experience to draw from. I reviewed a previous book, written in 2005 (The Parkinson’s Disease Treatment Book: Partnering with Your Doctor to Get the Most from Your Medications). I found his writing is clinical but still easy enough for the lay person to understand. That book was aimed at the medical community as well as the family and I suspect this new one is too. It is pricy for caregiver books, almost $28, but very cheap for a haredcover textbook. Jim and I believe it is worth considering.

We’ve added two other books to our LBD Book Corner as well:


Twice a Child by Ann Elia Stewert came out in May. It is a novel about an 85 year old man with dementia, loosely based on her father, Poppy, who had LBD like symptoms. The Kindle version is only $4.99, and that’s what we’d recommend you choose if you can, for non-reference books like this.


Going Gentle into the Night by Sandra Ross also came out in May. This is another personal story with, Ms. Ross says, information that a caregiver can easily read and use.  It is great to see so many of these books appearing! This book costs $14.94 for paperback and $4.99 for the Kindle version.

Paper vs Kindle. We recommend paper when buying a book like the top two. You will likely want to refer to these books often, highlight information and write in the margins. However, for a good read, like most of the personal stories about LBD, Kindle versions are great—if you have an e-reader, of course.

Obsessive Compulsive Disorder (OCD) with LBD

This is different from impulsiveness, which is doing something without considering the results. This is the need to do a certain behavior like gambling, shopping, eating or sexual activity repeatedly without consideration of the results and dwelling on that behavior excessively in response to hidden anxiety. Women are more likely to overeat and shop; men are more likely to gamble and be obsessed with sex.

While not specifically a Lewy body symptom, OCD is a common response to the anxiety that can accompany any degenerative disorder. It may also be a side effect of certain medications.

Parkinson’s drugs, particularly Requip and Miripex, but also Sinemet on a lesser scale, can sometimes cause ODC-like behavior. When the drugs are stopped or decreased, the behaviors may disappear. Times vary. The compulsive behavior may not show up for as long as a year after the start of a drug. Once the drugs have been adjusted, it can take from days to months for the behaviors to subside. If changing the drugs don’ work:

Don’t use logic. It won’t work. Even with a person who can still be logical in other situations, OCD does not respond to logic. The compulsions overcome awareness and the person cannot see the problem. Your interfering is the problem they see!

Try distractions. This may work because LBD shortens attention spans. Try to get them interested in something else. Suggest something your loved one likes, such as going for a walk or a favorite food, activity, TV show or video.

Build in limits. With each targeted behavior, the limits would be different. If eating is the behavior, monitor the food in your home and limit what is available. Offer healthy choices. With gambling or shopping, limit the funds available, up to canceling or changing your credit cards. Monitor your computer; it is a great source for shopping and gambling.

Evaluate stress levels. OCD is a response to anxiety—stress. Incorporate stress management tools and use them with your loved one regularly. This is a partnership activity. Since your loved one mirrors your stress, his won’t go down unless yours does.

When all else fails, ask the doctor about medication to decrease the behavior. Some caregivers report that Seroquel helped.

Next week will be about sexual acting out, which can be a compulsion with some LBDers.