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.

Acupuncture, Accupressure and Massage Therapy

Several small studies have found that all of these more Eastern treatment methods work to decrease anxiety, agitation, and stress. The evidence from dementia caregivers is also positive. On the down side, results occur only with regular, sometimes daily, use and end soon after the treatments do.

Acupuncture: Treatment consists of needles inserted in strategic points on the body. Placement and number of the needles depends the conditions being treated. For dementia, the needles will often be in the head. Although the needles don’t hurt, a person must lie still for a period of time, usually 20 to 30 minutes, once the needles are inserted.

I convinced Carlton to try acupuncture to strengthen his voice. He started out going every Wednesday and right away, I could hear him better. But it didn’t last; by Sunday, his voice was weaker. We increased visits to twice a week and that carried him over. He’d been going for six months when our daughter had a baby. By then, he could miss occasional sessions and his voice stayed strong. We went to stay with her for a month so I could help out. By the time we returned home, his voice was so weak I could hardly hear him.   –Clara

Similar stories from caregivers abound, with reports that acupuncture:

• Relieves anxiety, agitation, tension and stress
• Improves sleep and speech
• Decreases anger, combativeness and acting-out

On the negative side:

• Treatment requires a trained and certified professional.
• Results are temporary. Treatment must to be administered at least weekly and the results disappear if treatments stop.
• Treatment can be expensive and is not always covered by insurance.
• The treatment’s intrusive nature might be frightening to a person who is unable to understand the process.
• Some people may not be able to lie still and leave the needles alone for the required amount of time.

Acupressure: This therapy is very similar to acupuncture except that hand pressure rather than needles stimulate the strategic points in the body. Used appropriately, acupressure appears to provide help similar to that of acupuncture:

• Relieves anxiety, agitation, tension and stress
• Improves sleep
• Decreases anger, combativeness and acting-out

Acupressure is mild and non-intrusive, which gives it some advantage over acupuncture for the average LBD family. It is:

• Easier to use and less frightening.
• Safe for non-professionals to use. Care partners can learn to do it at home and care staff can learn to provide it in residential facilities.
• Less expensive.

Disadvantages:

• The milder treatments wear off sooner. Maintaining results may require several sessions per week, often daily.
• Professionals do have more training and background knowledge and may be able to do a better job. However, acupressure is seldom covered by insurance.

Massage and touch therapy. Massage therapy, the of manipulating muscles and limbs, can treat the whole body or just certain areas. Light touch can sometimes be more effective than words.  Care partners report that it works well for:

• Relaxation and sleep improvement
• Anxiety, agitation, tension and stress reduction
• Pain reduction. Massage is especially helpful if the pain is from tense muscles.
• Direction. A light touch can sometimes work better than words to provide direction. It gently pulls the attention back to the job at hand and adds a sense of caring at the same time.

Advantages:

• Care partners can learn to do basic massage at home.
• Gentle massaging can be a time of togetherness between care partner and loved one.

Disadvantages:

• Results are temporary. They require ongoing, sometimes daily, use.
• Deep muscle massage requires strength and stamina a care partner may not have.
• A professional masseuse has more training and strength but may not be covered by insurance or may be covered only for a limited time.

Summary: Although acupuncture may work better for stress reduction and related issues, its disadvantages may make it less attractive to the home-based caregiver than acupressure or massage. With some basic training, either of these therapies may be useful for treating stress related issues that otherwise might require medication. If medication is still required, the dosage needed will likely be decreased.

Non-drug Therapies for LBD

The difficulty with drugs used by modern medicine to treat LBD’s most bothersome symptoms makes it common sense to search for another form of treatment. And there are many types of non-drug therapies, some more effective than others, but all worth a try.

When working with a progressive disorder like LBD, learning to use and maintain still present abilities well is the goal. While this will not improve the basic ability, it often does result in improvements, as when a person can move more easily after physical therapy.

Used early in the journey, these therapies can delay the appearance of dementia and other LBD symptoms. Used later, after LBD is present, these same therapies continue to work their magic, decreasing the severity of symptom and the acting-out that often follows.

Whichever combination of the therapies below you choose, their function is to help make the journey with LBD less stressful and your lives more enjoyable and fulfilling. Used regularly, they can definitely improve quality of life for loved one and caregiver as well. However, they are not cures. Learn to judge a therapy’s success by how much your loved one maintains their status quo, not by how much they improve.

Physical therapy is familiar to most people with PD. While its primary purpose is to improve movement, any kind of physical exercise helps to maintain cognitive abilities as well.

Occupational therapy focuses on helping a person retain their daily living skills and maintain an active life.

Speech therapy helps a person improve their ability to speak and swallow.  This can help in addition to the suggestions in our 12/28/12 blog.

Music therapy touches senses and emotions and can sometimes reach a person when nothing else will. Other therapies and activities often include music. See our 5/2/13 blog.

Psychological counseling is valuable in helping individuals, couples and families deal with the losses and changes involved with a LBD diagnosis.

Spiritual therapy is the conscious inclusion of your own spiritual and religious beliefs in your lifestyle and in other therapies. Don’t overlook the support it provides.

Aromatherapy relies on the sense of smell and can be helpful with the Alzheimer’s patient but sadly, isn’t as useful when Lewy bodies are involved. They tend to destroy one’s sense of smell and make this type of therapy ineffective—except for the care partner, who may find it quite soothing.

Pet therapy is the use of pets to decrease stress and add comfort, support and safety. See our 4/27/12 blog.

Hospice is for Life not Death

No, it isn’t the end of the journey yet. But it may be time to start using the help that hospice offers. To qualify, a physician must certify that a person with dementia requires assistance with activities of daily living, is incontinent, AND can’t have a meaningful conversation. The alternative is that a physician can certify a life expectancy of six months. This does not mean that your loved one will die then. I’ve known people who were on hospice for three years before they passed.

Most families use hospice for only three days. What a shame! Hospice offers so much and it is all free, funded by Medicare. Hospice is not about death—it is about life and doing everything you can to make each day as enjoyable as possible. It isn't only families that resist--some physicians do as well. They insist they can’t say with any certainty when their patient is going to die. That’s not necessary. They only need to say that the possibility is there.

You owe it to your loved one, yourself and your whole family to start using this service as soon as you can. Start researching early, before the need is there. Learn about the various hospice services in your community. Interview them and decide which one you will call when the time comes. Find out just what has to happen before your loved one qualifies. Ask how well trained about LBD are their doctors, nurses, aides, social workers, their who staff. Do they understand about fluctuating cognition? About the LBD drugs and drug sensitivities? About LBD's ubiquitous urinary tract infections? Do they listen to you, the caregiver? Hospice services abound. Shop around to find the one that will serve you best. Services include:

• A nurse who visits at least once a week and supervises your loved one’s care.
• A  physician who is available to prescribe drugs and for consultations.
• A health care aide who comes in several times a week to help with baths and general care.
• Equipment such as hospital beds, wheel chairs, walkers and other assistance tools.
• Volunteers who visit with your loved one while you take a break.
• A social worker who can provide counseling for the patient, caregiver and the whole family, as needed.
• A chaplain who can provide spiritual help and grief counseling.
• A respite and critical care center that provides care while caregivers take an overnight, or longer trip. It can also provide critical care for most problems such as dehydration.(Patients are transported to a hospital if major care is needed.) Hospice center staff are experts at dealing with frail, elderly patients.

Hospice use requires the termination of all non-palliative or life-extending treatments. Heart medications, which extend life, would be withdrawn. In contrast, most LBD drugs enhance rather than extend life and should be exempt.When shopping for a hospice service, ask about their policy for your loved one’s specific drugs.

With better care, more attention, and less stress, the condition of a person on hospice often stops declining and actually improves. In this case, Medicare stops payment and your loved one must wait until they meet  criteria again to re-enter the service. Showtime is an aspect of LBD's fluctuating cognition where a person appears better than they usually are for someone other than their caregiver. When this appears with the evaluating hospice nurse or social worker, it can also result in discontinuation of services. (See our 10/26/2012 blog for more about Showtime.) However, you can reapply immediately and return as soon as a physician verifies that your loved one still meets the qualifications.

Don’t let your resistance stop you from using this valuable service—and start as soon as you can. It is a gift to your loved one if you do and a disservice if you don’t.