LBD & Nutrition-4: Water-Soluble Vitamins

This week the blog is about something that at first blush doesn't have much to do with dementia of any kind. However, because LBD increases stress and impairs the immune system, these vitamins are useful and should be considered as a daily supplement.  Unlike the fat-soluble supplements discussed last week, these water-soluble vitamins are excreted in the urine. Excess water-soluble vitamins are not stored in the liver nor do they  build up to toxic levels when taken in amounts of more than the body can metabolize at the time. While food is still the best source of these nutrients, supplements can usually be taken safely in normal doses.

Vitamin B Complex (Folic acid, B6 and B12): These vitamins can be found in fish, poultry, meat and dairy sources.

• Belief: These vitamins help to prevent or slow dementia.
• Fact: True, but impractical. These water-soluble vitamins help in the formation of red blood cells and in the maintenance of the central nervous system, and appear to lower the levels of an amino acid associated with dementia. Studies have shown that large doses of these three vitamins together can decrease confusion, reduce depression and slow MCI.   Reference 
• Concern: The large dosage required makes obtaining an adequate amount from food impractical. Therefore supplements must be used. In addition, injections provide better results than oral supplements, making this a difficult and possibly impractical effort for the average person.
• Belief: These vitamins help to reduce stress, which in turn reduces dementia symptoms.
• Fact: True. A daily oral dose of these water-soluble vitamins has been shown to significantly decrease workplace stress, confusion and depression.  It is reasonable to believe that it would also reduce stress in other areas of one’s life as well. Reference.  
• Belief: Taking Vitamin B12 will prevent dementia.
• Fact: False. It has been known for some time that a deficiency in Vitamin B12 decreases the brains ability to metabolize neurotransmitters and can cause dementia. However, taking Vitamin B12 alone as a preventive measure does not help.   Reference.

Vitamin C: This water soluble vitamin is found in most fruits, green leafy vegetables, broccoli, chestnuts, soy beans and low fat yogurt.

• Belief: Taking Vitamin C lowers your risk of dementia.
• Fact: Not yet proven. This vitamin was associated with a lower risk of dementia in one small study. That study needs to be replicated, preferably with a larger number of subjects before it can be accepted as fact. Reference.
• Belief: Vitamin C is helpful in reducing the infections that occur so often with LBD and which in turn, increase LBD symptoms.
• Fact: True. It has long been known that Vitamin C is associated with the maintenance of a healthy immune system, and therefore is helpful in reducing infection.

While taking supplements of these vitamins is comparatively safe, anyone dealing with LBD should always remember that this disorder makes the whole digestion system sluggish and that drug sensitivities can occur at any time. Larger than normal doses are discouraged without a Lewy-savvy physician's supervision.

LBD & Nutrition-3: Antioxidants

Antioxidants are the body's scavengers, they combat free radicals—unstable molecules that can injure healthy cells and tissues. Lewy bodies are generated when healthy proteins are “misfolded” or damaged. It is possible that removing free radicals decreases that damage.

However, this possibly positive result does not come without dangers. Many antioxidants are fat-soluble vitamins which cannot be excreted in the urine. Taken in larger doses than the body can use, the excess is stored and can become toxic, causing liver damage or other problems.

Vitamin A: Found in most fruits and vegetables, some nuts, dairy products, and tuna.

• Belief: Vitamin A prevents free radicals from turning healthy protein cells into Lewy bodies.
• Fact:  Not yet proven. Vitamin A may be helpful with other disorders but there is still no scientific evidence that this vitamin is helpful in preventing dementia.
• Concern: This vitamin is fat-soluble and therefore, dangerous in the large amount of supplements often recommended.

Beta carotene: A vitamin A precursor can be found in most fruits and vegetables, some nuts, dairy products and tuna.

• Belief: As with Vitamin A, beta carotene combats dementia.
• Fact: Not yet proven. One small study found beta carotene levels lower in people with dementia than in those without dementia. This same study also found that a higher intake of this nutrient by healthy people was associated with a lower risk of later dementia.   More research is needed before this belief can truly be supported.
• Concern: Beta carotene is fat-soluble, and therefore can be toxic when taken as supplements in larger than recommended doses.

Vitamin D:  Small amounts can be found in fatty fish such as herring and tuna. It is also added to many dairy products and sold as supplements.

• Belief: Vitamin D is called the Sunshine Vitamin because just a few minutes of sunshine per day will provide adults with all they need.
• Fact: False. This is true for younger people. However as people age, their skins become less efficient, resulting in vitamin D deficiencies.

• Belief: As an antioxidant, vitamin D decreases the risk of dementia.
• Fact: True. Recent research supports this belief.  

• Belief: Vitamin D helps to make strong bones and keep them strong, important for people that are accident-prone, as is the case for many with Lewy body disorders.
• Fact: True. This vitamin promotes calcium absorption and works to keep bones strong.  It also helps to prevent osteoporosis, a common disorder with older women, which can also weaken bones and make them easier to break.
• Concern: Since this vitamin is less easy to find in foods, doctors may recommend a vitamin D supplement. Be careful not to take more of this fat-soluble vitamin than the recommended dose.

Vitamin E: This antioxidant is found in wheat germ, nuts such as almonds and hazelnuts, vegetable oils such as sunflower and safflower oils, and some green vegetables, such as spinach and broccoli.

• Belief: Vitamin E decreases the risk of developing dementia.
• Fact: Partially true. Since we reported on this vitamin in our 2010 book, this vitamin has been found to be helpful for long term prevention and may have a modest impact on the risk of developing dementia later in life.  
• Concern: The above pertains to vitamin E found in food only. The amount of this fat-soluble vitamin needed be effective in supplement form is toxic and can cause liver damage.

Coenzyme Q10 (CoQ10). This antioxidant can be found in organ meat (heart, liver), vegetable oils, fatty fish, and nuts. Broccoli, sweet potatoes and sweet peppers also contain moderate amounts of this nutrient.

• Belief: CoQ10 can slow down dementia.
• Fact: True, but impractical and possibly dangerous. There is some evidence that suggests this coenzyme may slow down but not cure Parkinson’s dementia.
• Concern: The amount per day required for effective treatment is too large to get easily from food. Supplements are generally used but they are expensive.
• Concern: A variety of diseases and drugs can interact negatively with CoQ10. For example, it decreases the effect of blood thinners. Also, it is fat-soluble. Be sure to talk to your doctor before adding this nutrient to your diet.

Next week: Water-soluble vitamins.

References:
Vitamin A: Dietary antioxidants and dementia 
Vitamin D: Vitamin D, cognition, and dementia.
Vitamin E:  Dietary Antioxidants and Long-term Risk of Dementia.
CoQ10: CoQ10 and Dementia.

LBD & Nutrition-2: Supplements in General

A balanced Mediterranean diet supplies most of the nutrition a person needs. A daily vitamin and mineral supplement is usually enough for anything that was missed. Except for that, it is best to use supplements sparingly, if at all. Researches agree that it is best to get needed nutrients directly from the foods for these reasons:

• Effectiveness. Nutrients in food are generally more effective in combating dementia than the same nutrients in supplement form.
• Regulation. Unlike prescription drugs or even OTC drugs, supplements are poorly regulated. There are no laws governing content. You can never be really sure the label is accurate. 
• Danger. Some supplements can be dangerous when taken in large amounts or taken with other drugs. For example, the amount of antioxidants thought to be useful against dementia is often larger than a normal diet would supply. However, supplements in  these large amounts can be toxic to the liver or other organs.
• Expense. Some supplements are both expensive and dangerous to use without a doctor’s guidance. CoQ10 is an antioxidant with the problems noted above. It can also conflict with prescription drugs a person is already taking. And finally, it is quite expensive.

There are only a few safe drugs even moderately useful in combating dementia and these are prohibitively expensive. Perhaps that is why beliefs abound about the benefits of various nutrients thought to improve cognition. Some stem from anecdotal reports, or personal stories. Others are supported with scientific evidence from clinical trials. These are studies with groups of people, some receiving the treatment and some getting placebos. Anecdotal reports do not provide adequate proof of a theory even when there are many such reports. Clinical trials provide better proof but still need to be replicated before their results are fully accepted, unless the studies are large and well-run.

Issue to be discussed more fully in later this blog series on nutrition:

• Antioxidants (anti-ox-i-dunts): These nutrients are thought to combat LBD by  destroying free radicals
• Water-soluble vitamins are fairly safe. The down side is that none of them specifically combat dementia. However, they may help to combat other problems like infection and stress, both of which can make LBD much worse. 
• Omega-3 fatty acids appear to boost the immune system and lower triglycerides or the “bad” fats. However, there’s a lot of confusions about which foods fit in this category. Other similar foods are Omega-6 fatty acids and are not so helpful. 
• Coffee and tea may not be “supplements” but they have also been touted to be helpful with dementia.

Over the next four weeks this blog will all address each of the above subjects in much more detail. If you have comments or questions about any of these, be sure to speak up.

LBD & Nutrition-1: The Mediterranean Diet

Dementia drugs are only moderately effective in combating dementia. Behavior management drugs are actually dangerous with LBD. So what do you do instead? How do you combat this insidious, always encroaching, always progressing disorder? Physical exercise can slow it down—more than drugs, experts say. Staying socially and mentally active helps too. For years, many have insisted that eating a healthy diet also made a difference.

Now, researchers have specifically identified a Mediterranean diet, low in carbohydrates and rich in vegetables, fish and “good” oils as helpful. You may even want to add a little wine. The antioxidants, vitamins, minerals and fiber in these foods work together to protect against chronic disease, including dementia.

Foods in a Mediterranean diet include:

• Most vegetables, fruits, whole grains, nuts beans and a little wine.
• Limited starchy vegetables like corn, potatoes or peas. 
• Proteins sources such as eggs, cheese, yogurt, fish, and a little poultry but very little red meat like beef.
• Unsaturated fats such as extra virgin olive oil or canola oil instead of saturated fats like butter and bacon grease.
• Limited simple carbohydrates such as bread or pasta and sugar. 

Choose foods that are:

Fresh, or quick frozen. These retain their nutritional value best. Quick frozen can actually be better than fresh because they are processed at the most optimum time.

Unprocessed. Processed food will often include substances that are less healthy such as white flour or corn syrup. Labels should show no more than two items besides the food itself. For instance, clam chowder can have two ingredients besides the clams, vegetables and milk.

Raw, steamed or grilled. Boiling removes nutrients and frying adds saturated fats. Baking can also work as long as the oils from the meat drain away from the food.

Eating the above foods prepared in the above manners decreases the risk of getting metabolic syndrome, a cluster of risk factors for all chronic diseases: high blood pressure, high blood sugar, unhealthy cholesterol levels and abdominal fat. Most chronic diseases are risk factors for dementia.

This overview is only an introduction. For more information, find books about a Mediterranean diet and other related issues in the LBD Book Corner store.
There is more to a good diet than food. The following also help to keep dementia at bay:

Provide a relaxing atmosphere. The environment in which the food is eaten is important too. A pleasant, peaceful atmosphere helps to digest the food better. This becomes more important as Lewy advances. Avoid rushing, annoyance or distraction during mealtimes. Stress and distraction interfere with anyone’s ability to digest food. Add LBD’s more sluggish digestive system and its sensitivity to light, sound and feelings and these distractions can make eating very difficult if not actually dangerous.

Eat at the table as a family. Eventually, Lewy symptoms such as swallowing problems or a changed sense of taste, may make eating more of a chore than a pleasure. Therefore, do everything possible to foster a mood of relaxed enjoyment at meals. This includes making mealtime a family affair. Families who eat meals together tend to be more content.

Keep the focus on the food and the conversation. Soft relaxing music can help to set a calm atmosphere. Loud, intrusive or busy music or a television running in the background can be distracting, especially for the Lewy partner who already has attention deficits. Avoid arguments and even mild disagreements. Mild laughter is helpful but too much excitement is distracting.  Lewy can cause feelings of intense excitement to be interpreted as intense fear or anger or other negative feelings.

Nutrition. A balanced Mediterranean diet supplies most of the nutrition a person needs. A daily vitamin and mineral supplement is usually enough for anything that was missed. Except for that, it is best to use supplements sparingly, if at all. Instead, get the needed nutrients directly from the foods. First, nutrients in food are generally more effective in combating dementia than the same nutrients in supplement form. Secondly, unlike prescription drugs or even OTC drugs, supplements are poorly regulated. There are no laws governing content. You can never be really sure the label is accurate. Finally, certain supplements can be dangerous.

That said, the next few weeks will discuss some of the supplements thought to help with dementia. Let us know if there is a certain one you want to know about. We’ll do the research.

Zelman K. (2011) The Mediterranean Diet. WebMD. Edited August 16, 2011. www.webmd.com/food-recipes/guide/the-mediterranean-diet 

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.