Friday, December 12, 2014

Stressful Visitors During the Holidays

The holidays are a time when we often have more visitors than usual. Visitors we are glad, even excited to see. Family, dear friends, neighbors. We love them all and are glad they take the time to come. BUT…yes, there is always a but. We hear story after story of crises that needn’t have happened, of what appears to be total lack of consideration in what the visitors bring into the home of someone with LBD.

Janice told how a close friend brought an unruly dog to a holiday gathering with, “She’s just a puppy. She’ll outgrow her rambunctiousness.” Roberta shared a similar experience with an in-law who brought a noisy, active two-year old and ignored his loud squeals and shouts, saying, “Happy sounds don’t bother anyone.” People living with active pets and children become immune to the stress they can cause for people who are not used to such behavior and noise. And they seldom have a clue how easy it is to cause stress in someone with LBD and how damaging that stress can be.

Beverly’s adult grandchild showed up with her flu-ridden husband, saying, “We didn’t want to miss the party. Larry will be careful not to breath on anyone.” While people usually understand that a family gathering isn’t the place for a contagious disease, they likely aren’t aware of the LBD’s toll on a person’s immune system and the resultant super high susceptibility to infections.

These visitors aren't being purposely inconsiderate. It's just that people without daily exposure to our loved ones just don’t understand the importance of maintaining a safe, peaceful environment. In addition, they are probably operating on what a loved one used to be like, or what he was like the last time they visited, maybe six months ago. Caregivers know how things change; how what a loved one could tolerate a few months ago is not what they can tolerate now. But visitors don’t. And then, of course, there’s Showtime, that leads them to “know” that Grandpa is obviously not as bad as you say he is.

They have to be told—and told directly. Like it or not, this is the caregiver’s job. Speak up. Be clear. Don’t pull your punches. Don’t hint around and expect them to read between the lines. They really don’t get it. Tell them what you want in clear, direct sentences.

Start with a positive: “We want to see you” or “We love the baby” or ….

Then explain the problem: “BUT your pet/child/etc is too active/loud/contagious….”

Explain the difference between them and someone not used to the behavior: “I know this behavior/condition isn’t a problem for you, but we aren’t used to it and it is stressful for us, and especially for Henry. LBD makes his stress/ immunity tolerance very low and with all the people here, he’s already nearly maxed out.”

Give a clear directive: Please either have better control of your pet/child/etc. or don’t bring it when so many people are here.” Or “Please wait until the disease is not contagious…”

Finish with something to soften it so that you will be heard: “Why don’t you bring the baby—or the puppy—over in a couple of days, so Henry can enjoy him without a lot of people around?” or “Can you come back when your husband is feeling better? We really do want to visit with you.”

For you the problem may be something else. Perhaps your family likes to argue and this upsets your loved one where once, he’d have been right there, putting in his two bits. Or maybe, it’s the food they bring—food your loved one loves but is now forbidden for some reason. Or …. Well, you can fill in the blanks. The problem and the solution remain the same. You know what is stressful to your love one and it is your responsibility to make sure your visitors understand his limits.

Hopefully, you can do this BEFORE they show up. You will have a happier, more peaceful time if you do. If not, do it as soon as you see the problem. Don’t expect it to get better. You will only get more stressed—and telegraph that stress to your loved one. Set the guidelines for a peaceful gathering, insist that they be followed and you will be able to relax and enjoy yourself. That’s important too, you know!

For information about Lewy body disorders, read our books:


Friday, December 5, 2014

Coconut Oil: Is It Wonderful?...Or Is It NOT?

A lot of people believe coconut oil is very nutritious and that it can help dementia. But what about shredded coconut? That's something we use a lot this time of year to add flavor and fiber to many holiday foods. Well, it isn't exactly unhealthy, but it shouldn't be a regular part of your diet. It does supply some key vitamins and minerals. However, its high fat and sugar content greatly decreases its nutritional value. You can use  unsweetened shredded coconut to improve nutritional value but the fat content remains. See the discussion below about the fat in coconut oil and whether it is nutritious or not.   There is no evidence that it helps dementia.

Coconut oil. We know that coconut oil is nutritious in many ways although the jury is still out about whether it is helpful with dementia. Last year, the 10/14/13 blog was ambivalent. There's still very little supportive research although there are many glowing personal reports from a wide variety of sources. We do know that it is wonderful on the skin. But what about as nutrition?

Many people believe that coconut oil has attributes that make it heart-healthy, and that it may even be useful for treating infections. Others swear that it has a definite, positive effect on cognition. Some advocates believe that when transformed by the liver into ketones, it may even restore and renew neuron and nerve function in the brain after damage has set in. That is about as close to a cure as we’ve heard—if it works.

As for scientific proof of these claims, the strongest appears to be a 2012 study with results that showed that ingesting coconut oil provided significant short term benefits to dementia patients. From this, we can deduce that yes, coconut oil apparently does have a positive, if temporary effect. That is, like a drug that treats symptoms but doesn’t cure, it provides a benefit only as long as it is in the system.

So far there is no scientific proof that it can do anything permanent like renewing neurons. We should learn more in September, 2015, when the National Institute of Aging plans to publishes the results of their clinical trial to look at the benefits of coconut oil in people with mild to moderate Alzheimer's disease.

However, the down side is that coconut oil is high in calories and is categorized as a saturated fat, the kind that isn’t heart healthy at all. Advocates say that the way coconut oil is metabolized makes the calories less important. They also say that the oil acts more like a carbohydrate than a saturated fat.

Nevertheless, until further research changes what we know, nutritionists remind us that while healthy fats should make up about 30% of your total intake, saturated fats (including coconut) should be limited to no more than 10%--or about two tablespoons a day. Advocates suggest that you can use it to replace butter on toast or popcorn, use it as shortening in cooking, or add it to smoothies.

Omega-3 fatty acid update: The 10/4/13 blog reported that foods containing omega-3 fatty acids have a positive effect on dementia but that the use of supplements is questionable. This remains true. There is more emphasis on getting enough fats in our diets—healthy fat, that is. Human brains are at least 60% healthy fats, which must continually be replenished for proper functioning. As with essential vitamins, our bodies cannot manufacture these nutrients; they must be obtained from diet. We have been so trained to watch our fat intake that we often neglect to ingest adequate amounts of the fats that our brains need.

A Dutch study found that a diet high in fat seems to postpone the aging of the brain. Olive, canola and coconut oil, fatty fish, flax and pumpkin seeds and walnuts are examples of foods containing healthy fats. You can find a longer list here. It would probably behoove all of us to add more of these to our diet. (Notice that coconut oil is included in the list of “bad fats” on this list. Again, it IS a saturated fat, but has other attributes that makes it healthier than other saturated fats, and perhaps we will eventually find that it is as healthy as “good fats.”

Friday, November 28, 2014

Gifts for Shut-Ins

Finding a gift for seniors of any type is difficult. By the time a person qualifies “senior,” we usually don’t need much, can’t use much and don’t have long wish lists for anyone to choose from. We go out less, stay home more and are already surrounded by all we need and want. Add dementia to the picture and the list of possible gifts gets even smaller. But we still love to get gifts. That never changes. The gifts don’t have to be big or extravagant. In fact, especially for anyone with dementia, smaller is really better. Remember, “avoid extremes!”

And so here are a few suggestions that might get you thinking:

Red wine. Does your loved one like a little sip now and then? Red wine has been shown to be heart healthy (and therefore brain healthy!), and so a bottle of your loved one’s favorite red might just be the thing. However, even a small glass in the evening may increase Active Dreams (Managing Cognitive Issues, pg 199) and so plan for the drinks to occur earlier in the day.

Chocolate. Studies have shown that dark chocolate may improve brain health. If you loved one is a chocoholic, choose a small box of their favorite type of dark chocolate. Make it all the same kind…having to make choices is no longer fun for the person with diminishing abilities.

Homemade, hand-held treats like cookies. These can bring back pleasant memories of home. Choose either their favorites or something that has a good aroma. Smell is a great trigger of memories. Make the cookies small. If you make brownies or fruit cake, cut it into small helpings that can be eaten in no more than two bites and put each portion into a small paper cupcake liner. Seniors usually eat less at a time—or their interest may become drawn somewhere else. Therefore, if the treat is too big, it is likely to be stowed somewhere in their clothes “for later,” where it will probably be forgotten and turn into uncomfortable crumbs.

Large size puzzles or other mind benders such as those shown on LBDtools.These are appreciated most if your time comes along with them! Plan to spend some time putting together the puzzles with your loved one. If you don’t live close enough, arrange to have someone else do this for you. Seniors love the time you spend with them far more than your gifts!

An easy-to-use telephone. It should have large buttons and an easy-to-read screen with programed in numbers for the people your loved one will want to call. Punching in seven to eleven digit phone numbers leads to wrong numbers called--and frustration. The fewer bells and whistles, the better, unless they are ones your loved one already knows how to use.

A universal TV remote. The model specific remotes are often small and filled with bells and whistles that confuse rather than help. Amazon sells one called USC SR3 Big Button Universal RemoteIt has large back-lit buttons for limited activities like like volume and channel changing. Most seniors watch only a few channels and so some “favorites” buttons make it easier to find these. Look for color coding too. This makes it simple to explain--and to remember: “Punch the blue button and then the red one.” A person with mild to moderate LBD can learn--with lots of repetition and plan the time to work with them into your gift.

Something shareable. Gifts become much more valuable when they come with your time and attention. For instance, my mother loved oyster stew. I’d bring enough for two and then we’d set an impromptu table in her room and share the meal. Many of the gifts above are also sharable.

Visit, hug, touch, laugh, enjoy. Do this as often as you can. As dementia takes away the concept of time, what happened yesterday is gone and forgotten and what will happen tomorrow is no longer comprehensible…there is only today.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, November 21, 2014

Holiday Feasts, Family and Fun

Last week, you were promised a blog about coconut oil--and it will show up eventually. However, this subject is too relevant to the time of the year to postpone.

The holidays are a time of feasting, family and fun. At least, that is what we hope they will be. When Parkinson’s becomes a part of the family, some adjustments may need to be made. While feasting may still be a part of the agenda, changes in the kinds of food you eat and even when you eat it might be advisable. Family can be a wonderful blessing but often our expectations outreach reality, especially at holiday times when we want everything to be perfect. And finally, what is “fun” changes as one’s body and responses to stimuli changes.

Much of our holiday food is made with simple carbohydrates (sugars, high fructose corn syrup and white sugar). It is becoming clear that these foods are not supportive of good health in general, and especially not of good cognition—always an issue for anyone with a Lewy body disorder like PD or LBD. For the cook, include more complex carbohydrates like fruits and vegetables. For people at risk for cognitive impairment, go ahead and enjoy some of the traditional foods, but savor smaller helpings and resist taking seconds.

Proteins and saturated fats (think “animal fats”) also play a prominent part in holiday meals. Dopamine and protein share “carriers” for crossing the intestinal wall and the blood brain barrier. Competition for these carriers will delay or reduce the medication’s effect. Meals that are high in saturated fat take longer to digest, thus delaying medication absorption. All of this may leave you feeling sluggish and fatigued. Try taking your medication away from meal time, with a small amount of food to avoid nausea. For the cook, consider serving fish like cod or salmon, and using omega-3 fatty acids such as olive oil instead of saturated fats whenever you can. The omega-3s digest easily and fish digests in about half the time as it takes for other proteins.

As Parkinson’s advances, one’s tolerance for stress decreases. Families are important but they can also be huge triggers for stress. There can be expectations that end in disappointments, financial pressures over spending issues, unresolved family-of-origin issues that pop up when a family member comes to visit. Make an effort to keep stress levels low during this time any way you can. Diffusing some soothing lavender or rosemary into the air, practicing deep breathing or add some soothing massage sessions are some suggestions. Also ask family members to keep conversations non-argumentative and focused on more pleasant subjects.

Fun. The holidays are times of parties and family gatherings and activities that you may not do at any other time. For the person with Parkinson’s, preparing a big family meal may no longer be possible. Or if cognition is slipping, the board games after dinner may have passed the point of challenge and instead, become painful evidence of lost abilities. Think ahead and find ways to adapt. Can you order a prepared meal or share the responsibilities with other family members? Can you play an easier game or do something else like look at old family photo albums? Thinking ahead can make all the difference where fun is considered.

For information about Lewy body disorders including Parkinson's, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, November 14, 2014

Chloresterol and Dementia

Low levels of HDL cholesterol, or high-density lipoprotein, have been associated with a variety of neurodegenerative diseases including Parkinson’s, Alzheimer’s and dementia in general. That’s the “good kind” of cholesterol. It helps to prevent clogged arteries, assists nerve-cell synapses to mature and helps to control the formation of dementia-causing proteins. They other type of cholesterol, low-density lipoprotein (LDL) is the bad stuff that plugs arteries and causes high blood pressure and heart attacks. That’s the kind that people take medicine to lower. (reference)

Lifestyle changes. 

There is no evidence that increasing HDL in people with dementia will stop the disease process. However, especially in people with early dementia, it may slow it down. In someone without dementia symptoms, maintaining adequate HDL levels may help to prevent dementia. The good part is that increasing HDL levels and maintaining them doesn’t require drugs! Lifestyle changes will do the job:
  • Get regular exercise. Aim for a variety of activities, and add new ones along the way. The body does better with that then when you do the same thing all the time. Make sure that both aerobic and resistance-training exercises are included.
  • If you smoke, quit. Smoking decreases HDL levels.
  • Eat a Mediterranean style diet, high in fiber-rich complex carbohydrates and low in refined carbohydrates. (See 9/5/13 blog) This diet appears to lower LDL levels while increasing HDL levels.
  • Get enough omega-3 fatty acids and use mono-saturated fats instead of saturated fats. (See 10/4/13 blog.) These have been shown to decrease total cholesterol levels while raising HDL levels. (reference)
    • Focus on purple foods: grapes, red onions, berries, eggplant, purple cabbage. These foods, which also include red wind and black tea, contain “flavonoids”, which decrease total cholesterol while significantly raising HDL levels.
    • Treat yourself to occasional small amounts of dark chocolate and small (5 oz.) glasses of red wine. Both contain resveratrol, which has been found to lower blood sugar. Red wine is also a source of catechins, which appears to improve “HDL levels.
    Cholesterol Drugs

    High blood pressure and dementia are both common in the elderly—and sometimes in the not-so-elderly and they often occur together. Therefore, many people with or at risk for dementia take statins, such as Lipator or Zocor, to lower cholesterol levels and decrease high-blood pressure.

    You may have heard conflicting information about these drugs and dementia. High doses of statins have been shown to lower the risk of dementia—in most people. However, in a 2008 study, 75% of those taking a statin drug experienced cognitive dysfunction. The symptoms  were generally temporary and disappeared when the drug was decreased. Other studies have also shown dementia symptoms connected with statin use with similar reversal rates upon drug decrease. However, in these studies the percentages of people affected have been much smaller..

    Researchers think that people who respond to statins with dementia symptoms have a genetic profile that puts them at risk. It is the combination of their genetic tendencies and the statins that cause the symptoms. Ask your doctor about this if your loved one takes drugs to lower chloresterol. Decreasing the medication may decrease dementia symptoms.

    Next week, the blog will be about coconut oil.

    For about Lewy body disorders read our books:

    A Caregivers’ Guide to Lewy Body Dementia


    Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

    Friday, November 7, 2014

    Genes and Environment

    These last few blogs about research have impressed us with the importance of the recognition of dementia risk. For some time it has been possible for someone with a family history of AD to be tested and find out if they are also likely to develop the disorder eventually. Many people don’t do this. They say, “Why should I? Alzheimer’s is not curable and so knowing ahead will only be depressing.” People with Parkinson’s or at risk for LBD would say similar things. They didn’t want to know what was ahead. They used to have a point. But not anymore.

    Researchers now say that it takes two things for dementia to develop: the right (or wrong) genes and a “toxic” environment. While we are still learning what both of these mean, the biggest lesson for right now is that it does take both. Even if you have the genes, dementia is not a sure thing. When I was a substance abuse counselor, I worked with Alaska natives who, as a group, have a strong genetic tendency for alcoholism. They were well aware of this and many avoided becoming alcoholics by choosing not to drink. People with the genetic makeup for dementia can also make lifestyle choices that limit their chances of developing their gene-related disorder. Even if a person already has early signs of dementia, it isn’t too late to make these lifestyle changes and see results. However, if you wait until the dementia is full-blown, all bets are off. Yes, you can still decrease the severity of the symptoms and improve quality of life, but that’s about all. It is like a cancer that has become “inoperable.”

    Concerning genes, researchers are learning what genes mandate eventual dementia and what genes mandate LBD specifically. We know a lot more about this than we did a few years ago, but it is still mostly in the hands of the researchers. It isn’t much help for the average person—yet. As far as LBD is concerned, the best guide at present is still to look at the symptoms. If you have REM sleep behavior disorder, Parkinson’s or mild cognitive impairment, you are at risk for eventual dementia. If you have hallucinations, the dementia is close.

    The second requirement for dementia is a toxic environment. As with genes, researchers are still exploring what this means. They do know that people who grew up around herbicides and pesticides are more at risk for dementia than those who didn’t. Preservatives with nitrates and nitrites have also been identified as possible toxins, as have heavy metals such as mercury. Air pollution from factory emissions and even smog have been linked to cognitive dysfunction.

    So what can we do? We can’t choose our parents. Our genes are what they are. We can’t change our childhood. Where we grew up is in the past and like our genes, it is what it is. But we can change our present and our future.

    • Live a healthy lifestyle. A Mediterranean type diet, adequate fluids and sleep have been shown to decrease the risks of dementia, and may slow—or stop--the growth early stage dementia.
    • Avoid toxins. While you may have lived around toxins in the past, it still isn’t too late to avoid known or suspected airborne, dietary or other toxins and decrease your risk for eventual dementia.
    In addition, you can make your body stronger and better able to battle invading dementia by:

    • Challenge yourself physically and mentally. Challenges should be interesting but not overwhelming. That’s when they get stressful and destructive.
    • Be social. Developing and maintaining meaningful relationships is as important as mental stimulation.
    • Be positive. Make being positive a daily goal. Look for the silver linings and reframe thoughts into positive expressions.
    • Relax. Meditating, deep breathing and practicing regular stress reduction exercises all revive the body and keep it working well.
    • Have fun. Laugh and do activities that you love. Live in the now and enjoy life as it is.

    Read more about all of the above and more in our latest book, Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders. Yes, these suggestions take a lot more time and effort than swallowing a pill or even having surgery or undergoing some other medical treatment—but they will likely be more effective too! There could be a blog for everyone of the above items. Well, there have been blogs in the past about some of these and there will definitely be more in the future.

    For information about Lewy body disorders, read our books:

    A Caregivers’ Guide to Lewy Body Dementia

    Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

    Monday, November 3, 2014

    LBD Research, Pt 4. Infrared Therapy and Dementia

    More and more, researchers are finding that the earlier we identify the risk of dementia, the more we can do to—maybe not stop it, but at least to slow down the progress of the disease. Eventually, the hope is that, identified early enough, we can stop it! But in the meantime, here is an interesting study about using infrared light to treat early-stage dementia.

    Infrared light has been shown to speed healing of a wide range of issues, from common cold sores, to chronic pain to eye injuries. The Quietmind Foundation in Pennsylvania is exploring how well it works with EARLY STAGE dementia. They found that it worked well with mice and have moved on to human studies. They hope to show that the treatment increases cerebral blood flow, oxygenation, and facilitate removal of toxic proteins with repeated brief (6 min) exposure to infrared light stimulation. The researchers believe this will improve damaged executive functions (including attention, working memory, strategies of learning and remembering, planning, organizing, self-monitoring, inhibition, and flexible thinking).

    LBD is known for its loss of executive functions vs. the memory losses of those with AD. Thus, this study of special importance to the LBD community. Quietmind reports that in a small preliminary study, people with early stage dementia wore a helmet with 700 LED lights that penetrated the skull. Results after eight weeks showed significant improvement. Caregivers of subjects made remarks like, “He hasn’t done that in three years” and “I have my husband back.” English author, Sir Terry Pratchett, tried the helmet in 2007 in an effort to retard his early-onset dementia. His improvement after three months was minimal However, the progressive disease didn’t get any worse either and that is definitely a positive.

    Although the results sound hopeful, it is far too early to celebrate. There are many questions and concerns. Some experts don’t believe the infrared can penetrate the human skull—and thus, a placebo effect was likely responsible for any improvement in the preliminary group. Or perhaps, the tests used to identify the subjects’ level of disabilities going into the study weren’t accurate. Or…etc. Quietmind hopes to answer all these questions and more with carefully designed clinical trials, for which they are presently seeking subjects. (more information)

    Others have used also infrared—or sometimes yellow--lights in dementia research. (reference) One group that used LED lights to evaluate planning abilities also measured the system’s transmission factor (TF) on the human skull. They found that the TF of infrared laser light and infrared LED light radiation did not differ significantly. This measurement provides some standards so that an answer to the experts’ question about penetration adequate for therapy.

    One 2013 study used low-level laser therapy (LLLT) to protect against AD induced neuron damage. Naturally much more research will be needed before this will be of any value to the average person, but if it works, it could actually stop the disease progress. There would need to be more research to test for effectiveness against Lewy bodies as well.

    Most studies used infrared—and sometimes yellow--light for diagnostic purposes methods, mainly to identify various dementia-related substances in eyes, blood and other areas of the body more easily accessed than the brain.

    It all adds up to there being a lot going on to improve our ability to identify LBD, and then treat it--and someday, stop it or even eradicate it. That's a long way off, but in the meantime, the word for the day is EARLY. If you think you or a loved one may have even mild dementia, do something about it. If you wait, it really will be too late for more than treating the symptoms.

    Next week: Cholesterol and Dementia

    For about Lewy body disorders read our books:

    A Caregivers’ Guide to Lewy Body Dementia


    Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders