LBD and Drugs, Part 7: Dementia Drugs

The PD drugs discussed last week and dementia drugs have conflicting actions. That is, drugs that improve motor function are likely to impair cognitive function. Conversely, drugs that improve cognition are likely to decrease mobility.  In each case, families and physicians have to find a balance of treatment that works for each person. Last week’s blog discussed first half of this balancing act. This blog is about dementia drugs, the other part of this balancing act.

Drugs used to treat the cognitive symptoms of LBD have been used with Alzheimer’s for many years. Research has shown them to be even more effective with LBD. However, due to the slowness of our drug accrediting system, only a few are approved by the FDA for treatment of PDD and none for treatment of DLB. (See the May 17, 2013 blog for the difference/similarity between PDD and DLB.) Lewy-savvy physicians regularly prescribe these drugs to treat LBD. These drugs treat all LBD symptoms, not just cognition. They act in one of two ways:

Acetylcholine preservation:  Aricept, Exelon and Razadyne are all cholinesterase inhibitors (AChEIs). They inhibit a chemical that moves acetylcholine out of the brain cells.  Only Exelon has been approved by the FDA for use with PDD. People often have the following concerns about these drugs:

Glutamate preservation: Namenda acts to preserve the chemical glutamate, which also helps cognition.  It doesn’t interact with PD meds the way AChEIs do, but it is usually less effective alone. However, it can be used with the AChEIs to improve their effectiveness. (Drugs with similar actions cannot be used together safely. Because Namenda acts on a different chemical, it CAN be used with other dementia drugs and that has been its main value so far. Like other dementia drugs, it requires live cells to work.

Concern: These drugs only last a few years and so I don’t want to start until I really need them.

• Fact: It is true that once a nerve cell is so weak that it can no longer produce acetylcholine, these drugs are not effective. However, AChEIs do not damage the cells; the Lewy bodies do that. AChEIs neither fight Lewy bodies nor protect the nerve cells. They simply extend the cells ability to function by preserving acetylcholine.  These drugs may not be very effective with MCI, but once dementia appears, they can improve one’s quality of life.  Starting them early usually means that they will be useful longer than if you wait to start them when your loved one has fewer functioning brain cells.

Concern: I’ve been told they have serious side effects like nausea, diarrhea, vomiting and other GI problems.

• Fact: Oral doses of these drugs can cause serious GI side-effects. However, both Aricept and Exelon come in patches, which eliminates most of these symptoms.

Concern: They are expensive. I’m afraid we won’t be able to afford them.

• Fact: These drugs are expensive. However, some companies now sell larger doses that cut down the cost considerably. Even if you don’t need the larger dose, you may be able to cut a larger size pill in half. Patches should not be cut in half. Some companies offer discounts to people who meet their criteria.

Concern: I have PD. Can I take these drugs? Won’t they increase my PD symptoms?

• Fact: They may. Since all AChEIs work to improve the level of acetylcholine, they change its ratio to dopamine and thus, may cause motor dysfunctions. You will need to work with your physician to find a happy medium between mobility and cognition. 

Concern: My father has Active Dreams. Will these drugs help with these?

• Fact: All of these drugs treat LBD’s symptoms in general, which includes Active Dreams and other acting-out behaviors. 

Summary: These drugs can improve cognitive function and other LBD symptoms but they may do so at a cost of decreasing mobility. They also lose effectiveness as live brain cells decrease. Decreasing stress and behavior management may work equally well and be effective longer.

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

Part 6: LBD and PD Drugs

We could call this blog and the next one “The Balancing Act” because they are about two groups of drugs whose actions are polar opposites of each other. Today’s blog is about PD drugs. Next week’s will be about dementia drugs. Be sure to read both blogs—they go together but there was just too much information for a single blog.

No drug will cure PD or LBD—or any other neurological disorder for that matter. However, they do treat the symptoms and that adds to one’s quality of life. Both groups are well known to LBD families, especially those with PDD, where the dementia was preceded by the motor problems of Parkinson’s disease.

Lewy bodies attack brain cells and extract chemicals the brain cells use to transmit information (neurotransmitters).  In the mid-brain, they remove dopamine, needed for good motor functioning. In the cerebral cortex, they target acetylcholine, needed for good mental functioning. These two chemicals operate on a ratio system. If the level of acetylcholine is higher than that of dopamine, the body acts as though the dopamine level is too low—with poor motor functioning. Conversely, if the level of dopamine is higher, the body acts as though the acetylcholine level is too low—with poor cognitive functioning.

PD meds that are too strong will improve mobility but decrease cognition.







Dementia meds that are too strong will improve cognition but decrease mobility.


Drugs used to treat PD act to change the dopamine/acetylcholine ratio in four ways:

Dopamine replacement: Sinemet has been the most commonly used PD drug for years. It effectively controls motor symptoms with few short-term side effects. However, its long terms side effects such as muscle rigidity and confusion can be serious.

Dopamine copying or mimicking: Requip, Mirapex and Neupro are in a newer group called dopamine agonists.  They cause fewer long term problems and are now usually prescribed first with Sinemet added, if needed, for better control.  Short term side effects include increased confusion and hallucinations. These drugs are not recommended for anyone with dementia.

Dopamine preservation: The following drugs all act in various ways to preserve the level of dopamine in the cells.  Physicians usually prescribe these weaker drugs to boost the effectiveness of Sinemet.

Symmetrel has side effects include increased psychiatric symptoms and anxiety. It is not recommended for anyone with psychiatric symptoms (or LBD-related symptoms such as hallucinations or delusions.)

Eldepryl and Azilect are new, still controversial, drugs. They don’t appear to have any serious cognitive side effects.

Tasmar and Comtan are drugs that inhibit a chemical that helps to move dopamine out of the brain cells. They do not appear to have any serious cognitive side effects.

Acetylcholine blocking: Cogentin and Artane are anticholinergics that maintain the balance by blocking acetylcholine and preventing it from being effective. Motor functioning may improve, cognitive symptoms will likely increase.  These drugs are rarely used today.

The bottom line is that PD drugs strong enough to improve motor function tend to increase dementia symptoms. Next week’s blog will explain how dementia drugs strong enough to treat dementia may increase PD symptoms. Families and physicians usually have to look for a happy medium, giving up some mobility to maintain cognition or vice versa. Most families opt for more cognition.

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

LBD and Drugs, Part 5: Lewy-safe Drugs and Alternatives

With so many Lewy-sensitive drugs, caregivers become concerned about all drugs. However, many, such as antibiotics, are fairly safe—or at least as safe for PwLBD as they are for anyone else.

 These are some of the conditions that make caregivers concerned:

Infections: Antibiotics and sulfa drugs, usually prescribed for infections, are seldom Lewy-sensitive. However, when used to prevent infections, they can become ineffective and stronger drugs will be required. This is true for everyone, not just the PwLBD. We should all practice infection prevention instead:

• Follow a healthy lifestyle with adequate fluids, sleep, exercise and a nutritious diet.
• Drink cranberry juice to avoid urinary tract infections. Once there is an infection, this does not good. Medication is required.
• Take Vitamin C, especially for upper respiratory infections.
• Use good toileting hygiene, which may not be easy if your loved one is still managing his own but is very important especially when UTIs are common. 
• When adult diapers are used, change often and clean the skin carefully between use.
• Wash hands often.
• Don’t share eating and drinking utensils.
• Sneeze or cough into your sleeve or shoulder.
• Avoid areas of contamination. For instance, avoid groups when the flu is around.

Depression: Antidepressants fall into several classes. The oldest, tricyclics and monoamine oxidasse inhibitors (MAOIs) are not recommended with LBD. Tricyclics such as Elavil are strong sedatives and MAOIs such as Nardil are strong anticholinergics. Drugs in the SSRI class, such as Zoloft, are safer and others such as Wellbutrin and BuSpar are mild enough that they are often used for behavior management. All should be started in small doses and monitored carefully.

Muscle cramps: Most muscle relaxants are unsafe for PwLBD. OTC drugs such as Tylenol or Advil help with the pain. Caregiver interventions to prevent the cramps may work best. They include:

• Check the medication log. (You should be keeping a log for just such concerns.)  Some drugs will cause cramps. Show the log to the physician and ask about changing the medication.
• Good exercise and less stress will lower the possibility of cramps.
• Relieve cramps with massage, a warm bath, or distractions that refocus your loved one’s attention.

Pain: For mild pain, OTC drugs like Tylenol or Advil usually do not conflict with LBD. For stronger pain, prescription drugs such as opiates or other narcotics in very small doses might work without conflict while larger doses of the same drugs may cause temporary hallucinations and other acting-out behaviors. Start very, very small and monitor carefully. The same caregiver interventions as those for muscle cramps may also help.

Orthostatic Hypotention (OH): Low blood pressure on rising is a common LBD problem.

• Medication: Check with your physician for Lewy-safe medications for this problem. There are several and the need differs with the individual. 
• Getting up slowly, with waits between rising and walking will also help.

Incontinence: Few drugs that reduce urinary urgency are safe with LBD. Flomax has been reported to work well with few side effects. However, many other caregivers report that it increased the incontinence instead of helping. Thus, an every two hour toileting schedule and night protection (such as Depends) is probably the best solution.

Other illnesses such as heart problem or diabetes: Many drugs taken for other illnesses are safe with LBD but always remind doctors that your loved one has LBD and ask them to check for conflicts. Sometimes the physician is so focused on the immediate problem that the LBD is temporarily forgotten. It must always be taken into consideration with any new drug, as must any other drugs your loved one is already taking.

Next week: LBD and Parkinson's drugs.

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

LBD and Drugs, Part 4: Allergy vs. Sensitivity

There’s a difference between “allergy” and “sensitivity.” Even a small dose of a drug or substance can cause an allergic reaction. For instance, my great-grandson, Caleb, is allergic to peanuts. His babysitter made herself a peanut butter sandwich. Then she carefully wiped the knife off (but didn’t wash it) before making a jelly sandwich for Caleb. The tiny residue of peanut butter left on that knife was enough to make Caleb sick.

On the other hand, a LBD caused-sensitivity makes a person react to a normal dose as though it were an overdose. That person might be able to tolerate a smaller dose just fine. Although some drugs, such as Haldol and most sleep aids  are too strong or too dangerous to experiment with, others might be worth the effort if  they meet these criteria:

The drug is considered mild, such as Ativan and most OTC drugs. Lewy-savvy physicians sometimes prescribe low doses of Ativan for anxiety or agitation.

Side effects are temporary, lasting only as long as the drug is in the body. Atypical antipsychotics, most OTCs and many pain medications fit this criterion.

Doses are small, perhaps even a quarter of the normal amount. Such tiny doses of pain medications like morphine may handle the pain with no unwanted side effects.

The drug is monitored carefully. Stop it as soon as unwanted symptoms appear.

Always discuss such experiments with the physician first. There may be something you don’t know that would make it a bad idea.

Some people are so sensitive to drugs they would want to avoid all potentially Lewy-dangerous drugs.

Red had some MCI but he was doing all right. Then he got dehydrated. He started hallucinating and having delusions that made him violent. The doctor gave him what she said was a mild anti-psychotic and it hit him awfully, constricting his muscles. He had been walking without even a cane before he got sick. Now he was almost bedridden. I couldn’t care for him by myself and so I had to put him in a nursing home. He kept acting out and they kept medicating him. I finally convinced them to try taking him off all the drugs. It worked. He calmed down and his dreams stopped. But it took almost a month for Red’s muscles to relax. And even then, he was in a wheelchair. He was never able to walk again.  –Jo

Red happened to be one of those who are not only very sensitive but are triggered by many drugs, even those that often help others with LBD. With any Lewy disorder, drugs should be started out in VERY small doses and increased until they provide the effect wanted OR they cause a problem. They should be stopped at the first sign of a problem. It won’t get better and will likely get worse.

Notice that Red didn’t recover right away after the drugs were withdrawn. People also vary as to how long it will take to get the drugs out of their system. This is because just as Lewy makes a normal dose react as an overdose, it slows the body’s normal process of flushing out the drugs.

Because caregivers tend to be more aware of the dangers of these drugs than even many medical professionals, you need to be ready to act proactively, speak up to the medical community and insist on your rights.  Finally, although there is a definite difference between an allergy and a sensitivity, it is a good idea to answer the always asked question "Is your loved one allergic to anything?" with a list of known Lewy-dangerous drugs and any to which he, personally, has had a bad reaction. The main goal here is to prevent him from getting the drugs so don't quibble about definitions!

The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.

Win a Caregiver Cruise!

Some deserving caregiver will win a 5 day cruise in the Bahamas for two. This has been checked out and is legitimate. You can nominate yourself or someone else, as long as the person is a caregiver of anyone 65 or older. This contest is sponsored by every year by Home Instead, a very reputable, caregiver focused company. We know them because they bought dozens of our books for LBD support group members in Ohio and a training packet for a trainer in that area as well.

Caregivers all have stories. You are all stressed and overworked. Take the time to tell your story to Home Instead and maybe you or your special caregiver will be the lucky winner! Apply today! The winner is acclaimed by public vote and the voting has already started. In fact, even if you don’t enter, start reading the entries and vote for who you want to win. (One vote per day, per person.) And if you do win, be sure to vote for your entry every day and tell all your relatives and friends to vote too. Feel free to share your story as a comment here and you may get some of our blog readers to vote for you too! Good luck!

Contest link: http://cruise.caregiverstress.com/  Go to this site and apply today!

LBD and Drugs, Part 3: Over The Counter Drugs

Just because a drug does not require a prescription does not make it safe for someone with LBD. While it is true that they are usually milder than prescription drugs, they can still cause problems. Many OTC cold and allergy drugs have benzodiazepines in their active ingredients. Less often, they have other seditives or anticholinergics. (See the July 17th blog for more about these dangerous drug classes.) Any of these drugs may trigger intense reactions, such as active dreams, hallucinations, delusions or general confusion. A person's first exposure to drug sensitivity may be with one of these OTC drugs.

I was diagnosed with RBD (Active Dreams) last fall. Sometimes I’d wake Jack but the dreams were mild. For years, I’ve used a mild antihistamine for spring allergies with good results. When they showed up last spring, I took my usual OTC allergy pill and went to bed. I had really scary dreams all night long and was so active that Jack escaped to the sofa. I didn’t take any more of that drug and the dreams reverted to their former benign state.   –Shannon

As was the case for Shannon, reactions to these milder medications are seldom permanent. However, they can serve as a warning. People seldom know that they are sensitive to a drug until they take it and have a reaction--and then the damage may be done. Shannon and Jack have been forewarned. They can assume that she is also sensitive to other, more dangerous drugs and stay away from them, thus avoiding the problems they can cause.

With these drugs, the buyer takes on more responsibility. You don’t have a doctor telling you what to buy. You choose from a shelf filled with similar drugs and hope it is the best one for the problem. Add Lewy’s sensitivity issues, and your job gets even harder.

Reading labels is a must. Avoid any drugs with active ingredients on the benzodiazepine or anticholinergic lists. (Mostly these drugs will be benzodiazepines.)

An easy way to identify unsafe drugs: If you recognize an unsafe drug on the shelf, compare its active ingredients to those of other drugs. If the new drug has some of the same ingredients, it is likely unsafe too.

Check it out. Once you’ve chosen a drug, take it to the pharmacist and ask if it is compatible with Lewy body dementia. If the drug is for someone who only at risk for LBD, there may already be a Lewy-based sensitivity. It’s a good idea to check with the doctor as well to make sure that this drug is not only safe with Lewy but also with any other drugs the Lewy partner is taking.

Start with a smaller than normal dose. Very likely that will do the job and it is less apt to cause problems.
Stop the drug immediately if you see unwanted symptoms.

Keep lists of unsafe drugs handy. The list on LBDtools includes links to all the other sites. Keep the LBDA wallet card handy for your own reference as well as for doctors and nurses:

• Anticholinergics list  
• benzodiazepine list 
• Dangerous Drug Lists on LBDtools.com
• LBDA wallet card

The authors of this blog are not physicians. They are caregivers and report what they and other caregivers have learned by experience, from physicians and from the literature. You should always talk with a physician about individual issues.