Merry Christmas!

Merry Christmas to all our readers. We are going to spend the day with family and enjoy that special closeness that family can bring. We hope you too will have a wonderful holiday, full of peace and love.

Helen and Jim Whitworth

Holiday Hints

Holidays can be meaningful, enriching times for both your loved one and your family. Maintaining or adapting family rituals and traditions helps all family members feel a sense of belonging and family identity. For a person with dementia, this link with a familiar past can be reassuring. The tips below can help you and your loved one visit and reconnect with family, friends, and neighbors during holidays.

Finding the Right Balance. Many caregivers have mixed feelings about holidays. They may have happy memories of the past, but they also may worry about the extra demands that holidays make on their time and energy. Here are some ways to balance doing many holiday-related activities while taking care of your own needs and those of your loved one:

• Celebrate holidays that are important to you. Include your loved one as much as possible.

• Set some limits, and be clear about them with others. You do not have to live up to the expectations of friends or relatives. Your situation is different now.

• Involve your loved one in simple holiday preparations, or have him or her observe your preparations. Observing you will familiarize him or her with the upcoming festivities. Participating with you may give the person the pleasure of helping and the fun of anticipating and reminiscing.

• Encourage friends and family to visit even if it’s difficult. Limit the number of visitors at any one time, or have a few people visit quietly with your loved one in a separate room.

• Prepare quiet distractions to use, such as a family photo album, if your loved one becomes upset or over-stimulated.

• Try to avoid situations that may confuse or frustrate your loved one, such as crowds, changes in routine, and strange places. Also try to stay away from noise, loud conversations, loud music, lighting that is too bright or too dark, and having too much rich food or drink (especially alcohol). This is especially true for our LBD loved ones, for they tend to be super-sensitive to so many things besides drugs--noise, light, crowds...

• Find time for holiday activities you like to do. If you receive invitations to celebrations that your loved one cannot attend, go yourself. Ask a friend or family member to spend time with the person while you’re out.

Preparing Guests. Explain to guests that the your loved one does not always remember what is expected and acceptable. Give examples of unusual behaviors that may take place such as incontinence, eating food with fingers, wandering, or hallucinations.

• If this is the first visit since LBD showed up, tell guests that the visit may be painful. Your loved one may not remember guests’ names or relationships but can still enjoy their company. With LBD, misidentification may be more likely.

• Explain that memory loss and misidentification is the result of the disease and is not intentional.

• Stress that the meaningfulness of the moment together matters more than what the person remembers.

Preparing Your Loved One. These tips can help your loved one enjoy visitors with less stress.

• Begin showing a photo of the guest to the person a week before arrival. Each day, explain who the visitor is while showing the photo.

• Arrange a phone call between your loved one and the visitor. The call gives the visitor an idea of what to expect and gives your loved one an opportunity to become familiar with the visitor.

• Keep routines as close to normal as possible.

• During the hustle and bustle of the holiday season, guard against fatigue and find time for adequate rest--for both of you. Your stress will increase your loved ones!

Adapted from the NIA's booklet, Holiday Hints: Alzheimer's Caregiving Tips

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Waiting for the Big One

A (nameless, please) caregiver posted this recently and gave me permission to use it in our blog. Since the holidays often bring out the worst in Lewy, this might be a good time for all of you out there in Lewy Land to remember that you aren't alone:

I've been of late thinking this dreadful feeling I always have is familiar. Is it from childhood? Some event I've forgotten? A repressed memory? I was in all the big and small earthquakes in Los Angeles and actually worked in disaster response for several years. It hit me a while ago. That's the feeling. Living with Lewy, at least this last year, is like waiting for an earthquake.

When will it hit? Stop? What kind of damage will it do? I can't prepare. So everything has to be left to chance. Nothing planned. Something as simple as thinking I better do laundry tomorrow. But tomorrow comes and there's a 6.5 on the Lewy Scale in the form of a major emotional upheaval. 10 hours. All time and energy has to be focused on containing the situation. You know the drill. Laundry out of the question. Recycle the towels and wear the same PJs for a third night.

I invited people over for dinner this week. Don't I ever learn? Thinking I'll be able to clean AND cook is practically taunting Lewy. Sending him an engraved invitation. And right on time, here comes another one and it's a big one. The wolves are outside. He hates everybody including me. The dogs told him I tried to hurt them. Why is the moon out instead of the sun? Can you see thru me? Look at this. What's that? Where's my wife? If I try to put salt out this winter, that's it. He's out of here.

So instead of slicing and dicing, it's soothing and placating. Instead of hearing praises for my signature smothered short ribs and 5 cheese mac & cheese, its pitying looks when I put out the paper plates, pizza and a side salad. No dessert. No clean cups for coffee. Out of cream anyway. They already think I've let myself go. Gained 30 lbs., don't get my hair, nails done anymore. If I tried to explain life with Lewy they'd think I'M insane.

I say a prayer that this earthquake subsides and some part of the visit can be salvaged. That he doesn't start trying to menace and intimidate the people he always loved most and would protect with his life had Lewy not possessed him like some evil spirit. He doesn't. He stays quiet. They leave. He says, "That was fun. How come people don't come over like they used to?" Gotta love him. Gotta be thankful he's oblivious to most of it and forgets quickly. LBD should have a subtitle: "Waiting for the Big One."

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Two Wonderful Booklets for Care Partners

This week’s blog is showing up very early so that we can tell you about a couple of wonderful booklets. This week, at the International Conference on Dementia with Lewy Bodies in Ft. Lauderdale, FL, Dr. Rosemary Dawson is making a presentation on the booklet she developed for care partners of people with dementia with Lewy bodies (DLB – also LBD). It has been evaluated by healthcare professionals including pharmacists and has been pilot tested by 20 care partners. Now, she has generously made it available to all of you. You can access and download the 34-page Care Partners’ Role in Medication for Loved Ones with Dementia with Lewy Bodies at our http://www.lbdtools.com/carepartners.html, the website of Jim and Helen Whitworth (yes, us!). This is a public access website, so please share it with others who need to know about what care partners can do:

1. Be proactive: Learn as much as you can about medications and DLB.
2. Keep good records: Share information with your loved one’s healthcare team.
3. Partner with a pharmacist: Find a pharmacist knowledgeable about DLB.
4. Collaborate with the DLB doctor: Your loved one’s doctor is the key to effective medication.
5. Questions about Prescriptions: Obtain this information about each of your LO’s prescriptions.
6. Be aware of polypharmacy: Multiple medications can pose risks to your loved one.
7. Manage medications: Be prepared to administer your LO’s medications.
8. Administer your loved one’s medications: Learn what you can do to make this activity go smoothly.
9. Be ready for problems administering medications: Sometimes people with DLB have difficulty taking medications or resist doing so.
10. Two variations: Here is what you can do when your LO can still perform some medication-related tasks and when your loved one is not living at home.
11. Explore non-pharmacological approaches: Not all DLB symptoms require medication.
12. Be prepared for ERs and hospitals: Standard protocols in ERs and hospitals can pose risks to your LO.

Dr. Dawwon is also making a presentation at the same International Conference on Dementia with Lewy Bodies on the booklet she developed with Pat Snyder (author of Treasures in the Darkness) and Jeff Maruna for care partners of spouses with Lewy body dementia. The authors have made this booklet available for free as well. You can access and download the 122-page Being an Engaged Care Partner: A Guide for Spouses of People with Lewy Body Dementia at the same webpage as above: http://www.lbdtools.com/carepartners.html. Again, feel free to share it with others who need to know about what spouses ( anyone else, for that matter!) can do to be engaged care partners:

1. What it means to be an engaged care partner
2. Preparing yourself to be an engaged care partner
3. Creating an LBD portfolio
4. Finding an LBD specialist
5. Developing successful relationships with the LBD specialist
6. Before, during, and after visits to the LBD specialist
7. Before, during, and after trips to the emergency room
8. Before, during, and after hospitalizations
9. Handling problems and conflicts

This Guide has been reviewed by content experts, and it is in its final draft form. It is being evaluated by healthcare professionals and care partners between now and February 15, 2016. The authors ask that if you read all or part of the Guide, please complete the survey that is described in the Guide.

Jim and I have read both of these booklets and we believe that they are well worth your time…and that once you’ve read them, you will keep each of them close by for a much referred to reference. Do download these and use them.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Happy Thanksgiving

We are spending this Thanksgiving in Las Vegas--with family, not on the strip! I am taking a vacation away from my computer to enjoy our time together, and so we wish you a Happy Thanksgiving in advance. Next week's blog will be the one I promised you some time ago on marijuana.

Holiday Suggestions

The information in this blog is still so pertinent that even though it was printed last year, here it is again. There are some ideas here to help you make your loved one's holidays, and yours too!,  more enjoyable and less stressful. Hope they help!

The holidays are a time of feasting, family and fun. At least, that is what we hope they will be. When Parkinson’s or LBD 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 or LBD 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, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Dealing With Ambiguous Grief

Last week, our guest blogger, Lisa Cooke, explained ambiguous grief and how it affects the LBD caregiver. If you haven't already read it, go back and read it now, before you read this. This week, Lisa expands on her list of ways in which a caregiver can cope with ambiguous loss and grief.

Prepare for the future. Use the grief to spur you toward taking care of legal issues, such as power of attorney, updating wills and other things to secure the future for both you and your loved one. If your loved one is able, discuss end of life issues like if he wants a feeding tube when he can no longer swallow. These questions are uncomfortable, but it will make those decisions much easier when the time comes if you know his wishes.

Educate yourself. Learn everything you can about the illness and the treatments available. Knowledge is power and caregivers need all the power they can get.

Join a support group. Everyone needs someone they can talk to. If there are no local support groups you can join, find an on-line group. There are several available and they offer not only support, but information. Most of what I’ve learned about LBD I learned from other caregivers. (There are some links for caregiver groups on Lisa's Lewy Warriors site under “Helpful Links and Groups” at the top of the page.)

Get help and continue to live your life. This is a tough one, right? Won’t other people think you’re horrible if you hire aides and get some time off? First, no they probably won’t because they don’t know what you’re doing anyway. And secondly, if they do think you’re horrible, who cares? Your life is just as important as your loved ones. That doesn’t mean your loved one doesn’t need your help, it only means that you need your help too. According to Healthline, half of people providing care for someone with dementia becomes seriously ill or die before the patient does.

( http://contributors.healthline.com/family/why-caregivers-people-dementia-often-die-patient-themselves)
Don’t let yourself be in that 50%. If something happens to you, who will oversee the care of your loved one? Hire some help. Take a break when you need it or, better yet, before you need it. You can’t put your life on hold for what may be years of caregiving responsibilities.

Find Moments To Enjoy. Try to find things your loved one can enjoy, whether it’s watching movies, looking through photo albums, or enjoying a sun set. A close friend who is suffering from Parkinson’s Disease told me she looks for an excuse to laugh out loud every day. That’s some great advice.

Accept that your relationship has changed. Instead of thinking, “My loved one is either here or gone,” think, “My loved one is BOTH here and gone.”

Ambiguous loss is particularly difficult when the loved one is your spouse. If you are caring for a spouse, not only do you grieve the past you shared, you grieve for the future you will never have. For most, a caregiver’s spouse is the one person they go to when they’re upset or needing support and advice. Your spouse is the person who holds you when you cry. What are you supposed to do when they are the reason you’re crying?

One caregiver said she was suffering extreme grief with the “loss” of her husband until she accepted the fact that relationship no longer existed. He no longer remembered who she was.

“I was trying to hold on to something that was gone.”

She moved into another bedroom and removed her wedding ring. “From that point on,” she said, “I became his caregiver instead of his wife.” For her, withdrawing from the romantic relationship she once had with her husband was the only way she could cope with the difficult duties of caregiving.

Another woman said she allowed herself to grieve whenever her husband advanced to another stage. “I lit a candle and cried each time he had a major decline,” she said. Accepting that her grief was real and needed to be acknowledged helped her continue forward.

To Summarize

•Realize that your grief is real and is experienced by most caregivers.

•Accept and try to identify the new parameters of your relationship with your loved one.

•Allow yourself to grieve even though your loved one has not passed away.

•At least once a day, look in the mirror and say, “My life is important too.”

•Think, “My loved one is BOTH here and not here.”

•Find an excuse to laugh every day, even if you have to watch silly internet cat videos to do it.

Some more excellent advice can be found on the Alzheimer’s Association website. http://www.alzheimer.ca/en/Living-with-dementia/Grieving/ambiguous-loss-family

Thank you, Lisa, for allowing us to share your blog.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Why Do I Feel So Sad When My Spouse Is Sitting Right Here Beside Me?

I know I promised you a blog on alternative methods of handling pain but life intervened. It will come eventually. However, you have a treat, in guest writer, Lisa Cooke. This week's and next week's blog entries were first in her blog, Lewy Warriors. Lisa is an active LBD caregiver--and a wonderfully expressive writer. We are grateful that she allows us to repost an occasional blog of hers here.

“It’s odd that I miss my husband so much when he’s still sitting right beside me.”Sound familiar?

If you haven’t felt those emotions yourself, visit an
 online support group and you’ll see similar statements every day from caregivers who don’t understand why they’re feeling such grief when their loved one is still alive. Psychiatrists refer to this as “Ambiguous Loss” and it’s very common with those who have loved ones with dementia, stroke, or traumatic brain injuries.

When you love a person, you love their thoughts, personality, memories, and the experiences you shared with them. So what happens when all those things are no longer there and you are left caring for the shell that used to contain the essence of your loved one?

The situation is even more complicated when dealing with an illness like Lewy Body Dementia because there are moments when the personality claws its way back to the surface for a brief visit, teasing the caregiver with memories of the way things used to be. The end result is crushing grief for the caregiver even though their loved one is still alive.

Grief is a complex process each person must go through in their own way and in their own time. It would be very difficult to find someone who hasn’t experienced grief of some sort in their lives, but ambiguous loss throws a curve that is hard to explain to an individual who has not experienced it.

Ambiguous loss is open ended.

There is no specific beginning and no specific end. It starts gradually as your loved one slips away in little increments. It may begin one day when your loved one can no longer discuss a movie you just saw, or you suddenly realize you can’t go on a trip to the mountains because your spouse can no longer hike. Maybe you find yourself afraid to go to work because you’re not sure if it’s safe to leave your loved one alone for that long.

For some reason you can’t put your finger on, you feel sadness as though something is missing, but that makes no sense, right? Your loved one is still here. He isn’t in the hospital and he still answers questions when you ask even if he rarely initiates a conversation.

The process occurs so slowly, you don’t see it creeping up on you until something triggers a flood of tears, or at least, a feeling of deep sadness. It might be a commercial on TV showing a mother and daughter laughing with each other. It might be the older couple sitting in the booth next to you in a restaurant, sharing a meal and a smile. Whatever the trigger, you find yourself slammed with grief that your friends can’t understand.

“You’re so lucky he’s still with you,” they say, not understanding that in actuality, he isn’t.

They don’t understand that you’ve found yourself in a relationship where all the rules have changed.

Your parent or spouse is now your child.

Unlike a typical death, ambiguous loss last months or years with no end in sight. The caregiver cannot begin to heal because the wound is torn open each day. The relationship the caregiver had with their loved one no longer exists, but they can’t simply walk away and start over because the physical body is still alive and needing care.

According to Paula Spencer Scott, author of, Surviving Alzheimer’s, “Dailey care isn’t the worst part of dealing with Alzheimer’s or other dementias, grief is.”

The Visiting Nurse Service of New York recommends 5 things you can do to help cope with ambiguous loss and grief. Lisa used their list as a starting point for the suggestions that will be in next week's blog. Next week she will expand on the following:

•Realize that your grief is real and is experienced by most caregivers.

•Accept and try to identify the new parameters of your relationship with your loved one.

•Allow yourself to grieve even though your loved one has not passed away.

•At least once a day, look in the mirror and say, “My life is important too.”

•Think, “My loved one is BOTH here and not here.”

•Find an excuse to laugh every day, even if you have to watch silly internet cat videos to do it.

Thank you again, Lisa, for allowing us to share your blog.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

One More Blog about Pain and LBD

Neuropathic pain, i.e., pain due to damaged nerves, is common with people with vascular dementia, which in turn occurs often with LBD. It is also a condition that occurs fairly often diabetes, and with the elderly in general as their nervous systems age. It can appear as chronic back pain, or it may travel along the nerve path into arms and legs, hands and feet. For the PwLBD with poor communication skills, it can be a cause of acting out as a cry of help.

This type of pain can be severe and may not respond to mild pain relievers like Tylenol or even Advil. Lyrica is often used but it's anticholinergic* properties mean that it is a poor choice with LBD. Many physicians treat neuropathic pain with antidepressants, choosing SNRI such as Effexor or Cymbalta over the older tricyclics, which are also anticholinergics. Of course, every PwLBD responds differently to drugs and so you must always "start low and go slow."

Marijuana has also been used. It has been used successfully for years with cancer and is now being considered for other types of chronic pain. Tests done with diabetic neuropathic pain have shown that it does relieve pain significantly better than a placebo, apparently without impairing cognition. However, these people did not already have dementia. The whole issue around this substance, which is now legal in many states, is too big for a paragraph. Look for a whole blog about it in the future.

Surgery. As arthritic pain gets worse, many people opt for joint surgery. This might be an option for knee joints if it is done without inhaled anaesthetic. In the past, this was major surgery done with inhaled anesthetics--strong anticholinergics.* Some doctors now do this surgery with the same kind of spinal block used for baby delivery by cesarean section. With this procedure, the sedation drugs are milder and their effect is much less.

Summary of the last three blogs:

Avoid NSAIDs as much as possible. If you must take them, choose aspirin or Advil, which appear to be the mildest and least likely to cause heart problems. The second generation prescription NSAIDs are safer on your GI system but just as dangerous for your heart as the others. If you take them, take as small a dose as you can and get the relief you want and take them only when you have pain. Don't take them to prevent pain. For years, I, like many others, took Aleeve to limit inflammation--and thus arthritic pain. This isn't recommended anymore. Taking NSAIDs for long periods of time put everyone, not just your loved one with LBD, at a greater risk for heart problems.

Tylenol is probably the safest pain drug, and the safest one to use with chronic pain. However, it isn't totally safe either. If you have any liver damage it will make it worse. Tylenol is added to many other drugs and so make sure you or your loved one doesn't unknowingly overdose on it. Further, the drugs used with it are often anticholinergics.

Opiates in small doses for short periods of time for moderate to severe pain are probably safe--or as safe as any drug is with LBD. However, they aren't usually recommended for long term pain like arthritis or the pains that accompany PD.

The best medical choice for neuropathic pain is probably SNRI antidepressants or possibly marijuana.

Surgery might be a viable option for arthritic knee pain, when it is done with a spinal block instead of inhaled anesthetics.

As you can see, the medical choices for pain relief are limited and none come without adverse effects. Usually, you end up balancing the advantages against the risks. If the advantages outweigh the fear of risk, you may go ahead and use the drug, at least for short term pain, However, all of this does make the use of non-drug pain management a lot more attractive. See next weeks blog.

* Anticholinergics: drugs that interfere with the function of acetylcholine, the same chemical in the brain that Lewy bodies attack.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

LBD, Tyenol and Opiates

Last week, we recommended against the use of NSAIDS for chronic pain. A little more about NSAIDs. Aspirin is probably the mildest of these and is still a possible option. Ibuprofen (Advil) is also fairly mild and if you are going to use these drugs at all, it is probably the best option. But first, try another old standby, acetaminophen (Tylenol). It is not an NSAID, and thus causes neither GI bleeding nor heart problems.

The UNC School of Medicine's protocol for treating a dementia patient's pain starts with the over-the-counter (OTC) drug, acetaminophen (Tyenol). It is considered by many to be the safest pain drug around, but only if it is used carefully. The recommended dose is up to two 325 mg tablets every 4 to 6 hours. The elderly, or anyone with LBD, should take about half that. Sadly, Tylenol is not a very powerful pain reliever and people tend to double up when they use it--which can lead to liver failure. In fact, acetaminophen overdose is the leading cause of acute liver failure in the US.

Another problem with both aspirin and acetaminophen is that they are often combined with other, less safe drugs. An example is Tylenol PM, which adds diphenhydramine (Benadryl), a serious anticholinergic drug. Be careful of any drug with initials after its name. This means other drugs have been added. Often these drugs are sedatives or anticholinergics, both of which can trigger LBD's drug sensitivities.

When a stronger pain reliever is needed, many doctors choose an opiate. By chosing one combined with acetaminophen, such as Percocet or Vicodin, they can use a smaller dose. However, opiates are addictive. You might say, "So what. If it helps the pain, he'll probably want it for the rest of his life anyway." But that isn't the way an addictive substance works. "Addictive" means that this is a drug that the body adapts to. As a person's body adapts, more of the drug is needed to provide the same amount of pain relief. Eventually, even large doses might not help. Opiates are fairly strong sedatives and are mildly anticholinergic. With the larger doses, sedative and anticholinergic symptoms like the following may appear:

• Constipation, which is likely already an issue for anyone with LBD.

• Sleepiness and additional confusion is common, with an increased the risk of fractures caused by falls.

• Disordered breathing, with slower or shallow breathing patterns, especially during sleep.

• Heart problems. Some opioids increase the risk of heart attack or heart failure. Ask the doctor about this before agreeing to any opiate drugs for your loved one.

Bottom line, opiates may work well for PwLBD, in carefully reduced, carefully monitored dosages for severe, short-term pain. However, they may be problematic when used for long term pain such as arthritis.

Reference:
Denham A. (2013) Pain Management in Dementia. University of North Carolina School of Medicine. July 10, 2013. https://www.med.unc.edu/pcare/files/pain-management-in-dementia

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

NSAID Pain Relievers and LBD

Last week we discussed pain drugs in general. This week, the blog is about NSAIDs (non-steroidal anti-inflammatory drugs) specifically. These are the most used of all drugs for pain, both short term and long term. Most of us have used them at some time or another. Many of us use them regularly for chronic pain. Some of us, myself included, used to use them but were told by our doctor that we couldn't anymore because they'd begun to irritate our stomachs. But how are they with our LBD loved ones?

First, a quick NSAID overview: These drugs include over-the-counter (OTC) drugs such as aspirin, ibuprofen (Advil), naproxen (Aleeve) as well as some newer prescription drugs. NSAIDs come in "selective" and "non-selective" forms. Most OTC drugs are non-selective, i.e., they block both pain-signaling enzymes and enzymes that protect the lining of the stomach.

Newer "selective" prescription drugs, such as celecoxib (Celebrex) and meloxicam (Mobic), are designed to select and block only the pain-signaling enzymes. These newer drugs do appear to have fewer side effects related to the stomach and bowels than other NSAIDs. However, it turns out that the pain-signaling enzymes also affect kidney function and blood pressure. Eventually, the risk of heart failure becomes "similar to that of being a smoker or a diabetic." This is true for all types of NSAIDs, selective or non-selective, OCT or prescription.

Aspirin is also an NSAID but it is little different, in that it also acts to thin the blood. Doctors often prescribe it in mini-doses for this purpose. Taken in such small amounts, it usually doesn't have the same negative effects as other NSAIDs, even when taken over long periods of time. Taken in doses large enough to affect pain, it may have the same negative effects as other NSAIDs.

People have used these drugs for decades for occasional pain, with few reported side effects. The most common side effects involve gastrointestinal distress, such as stomach upset, cramping, diarrhea, ulcers and even bleeding. NSAIDs are also believed to increase the risk of serious cardiovascular conditions (such as heart attack or stroke), especially for those patients already at risk for these conditions...which includes most PwLBD.

Last week's blog noted the three ways that the elderly, and PwLBD especially, process drugs differently from our younger relatives. LBD's drug sensitivity is less of an issue with NSAIDs but other issues are serious: the age-related decrease in the body's ability to process drugs and the likelihood of accompanying issues such as diabetes or high blood pressure. The elderly are also more apt to have chronic pain, often from arthritis, and to use NSAIDs for this. Taking these drugs long term greatly increases the risk of side effects.

Not only are the additional illnesses themselves a concern. So are the drugs a person might be taking for those other illnesses because of how the NSAIDs may interact with them. For example, they significantly increase the danger of internal bleeding when taken with blood thinners. Many NSAIDs are available without a prescription but even so, no elderly person should use them without checking with the doctor or pharmacist first. Naturally, this is even more important for long term use, as with arthritis.

Most PwLBD already have GI issues and many already have heart or blood pressure issues. Many already take baby aspirin to thin their blood. Therefore, it is our opinion that NSAIDs are seldom a good option for long term use by your LBD loved ones. These are the adverse symptoms you should look for when using these drugs:

• GI tract: bleeding ulcers, heartburn, constipation, abdominal pain, nausea, diarrhea and vomiting.

• Heart: Raised blood pressure, fluid retention, congestive heart failure

• Central nervous system: Headaches, dizziness and drowsiness. Ringing in the ears.

• Skin: Sensitivity to sun, rash, easy bruising

• Kidneys: Restricted blood flow, poor kidney function

• Can increase potassium levels which can interfere with other drug function.

You should avoid NSAIDs if you have dehydration, cirrhosis, renal disease, or if you are taking an anticoagulant drug (blood thinner) even if it is just baby aspirin. Renal function and potassium levels should be checked regularly.

Most experts advise the elderly to avoid using these drugs long term. If you use NSAIDs at all, use them just to take the edge off the pain. Then consider using a non-drug therapy such as deep breathing, essential oils, massage or aromatherapy.

The next blog in this series will be about opiate and narcotic pain-killers.

For more about NSAIDs, read the following articles:

FitzGerald G. (2012) NSAIDs and Cardiovascular Risk Explained, According to Studies from the Perelman School of Medicine.

Smith S G. (1989) Dangers of NSAIDS in the Elderly. Can Fam Physician. 1989 Mar; 35: 653–654.

Peterson K, et al. (2010) Drug Class Review: Non-steroidal Anti-inflammatory Drugs (NSAIDs). Oregon Health & Science Univerisity, 2010 Nov.

Cryer B, et. al. (2005) Pain Relief: How NSAIDs Work. WebMD, Arthritis Health Center.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Pain Drugs and LBD

Most LBD caregivers know to be very careful with anticholinergics...those drugs like antipsychotics, tranquilizers and even over the counter (OTC) cold and allergy medications. But what about pain relievers? Some like opiates do have a small amount of anticholinergic action. Does this make them safe in small doses? Others, like ibuprophen (Advil) are milder and have little or no anticholinergic action. How safe are they?

First, we have to look at the body you are putting the drugs into.

• Drug sensitivity is a serious and common LBD symptom. A PwLBD has a better than fifty percent chance of being sensitive to most antipsychotics, anti-anxiety drugs, sleep aids, cold and allergy drugs and a multitude of others. Go to the LBD Resources page on LBDtools.com and scroll down to "Helpful Documents" to find several lists of these drugs.

• Most Pw LBD are elderly. Age causes one's ANS to become less effective, making us less tolerant of drugs. The research is becoming very clear that anyone 65 or older should be very careful about using any drug that contains anticholinergics or sedatives.

• Most elderly people also have other health issues that have to be taken into consideration when choosing a pain drug. For example, if a person is already on blood thinners, they should not take a pain drug with blood thinning properties.

Given these three concerns, pain drugs that might be safe for others may not be safe for your loved one. Even drugs that might be safe for others with LBD, might not be safe for your loved one if he/she has other issues. However,you might be able to try them out and see how they work, using the following guidelines.

Know how your loved one's other conditions will limit your choices of pain drugs. For instance, he is has heart problems, those nice, mild OTC drugs like Advil may not be advised. If you are uncertain, ask the pharmacist.

Choose a mild drug. Milder acting drugs are generally safer than a drug that starts out strong. Even then, it will likely take less than a normal dose to do the job.

Choose a short-acting drug.  Better to take several pills a day than to take a drug that stays in the system a long time.

Avoid drugs that sedate.  Sedation causes an already compromised autonomic nervous system to become even more sluggish. Constipation and extreme drowsiness (or sleeping for many hours) are common symptoms.

Start low and increase the dosage very slowly until you get the result you want. If an adverse reaction appears, stop the drug immediately. Also be aware that as LBD progresses, your loved one's response to the drug can change and he may eventually need an even smaller dose or not be able to tolerate the drug any more at all.

Plan to use the drug for only a short time, just to alleviate the worst of the pain. As a general rule, pain drugs should be used for the shortest possible time. The longer a drug is used, the more likely complications will be. Addiction, for example. With an elderly loved one you might not think addiction would be a concern. "What does it matter, as long as it helps the pain," you might say. But with addiction, comes the need for an ever increasing dose to do the job, which your loved one may not be able to tolerate. Most OTC drugs are not addictive. However, long use may cause other problems, even for a younger, healthier person. For the PwLBD, these problems will likely start earlier rather than later.

Follow or pair with a non-drug alternative: One alternative to drugs is the use of essential oils. These can be used with pain in capsule form, as massage agents or in aromatherapy. These oils were used for ages before modern medicines were available. Find a person who is well versed in their use to guide you in your choices.

You can explore other methods to reduce pain such as acupuncture or acupressure, massage, music, or a multitude of stress management tools. What works best will vary depending on the source of the pain and the individual.Our latest book, Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia, includes a lot of information about alternative choices.

For general information about Lewy body dementia and its care, read:
A Caregivers’ Guide to Lewy Body Dementia


Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Good News about Brain Donations

Brain donations are vital for ongoing LBD research. They also help families obtain a confirmed diagnosis, and perhaps a better sense of closure. However, making a brain donation can be cumbersome, especially if you live in an area where there are no research centers. And even if there is a research center nearby that accepts brain donations, it may not be researching LBD.

The Brain Support Network (BSN) is a non-profit organization that helps LBD families in the USA by coordinating the complex arrangements involved in brain donation. The organization works closely with the Mayo Clinic to which most of the brains are delivered. Unlike many brain banks, Mayo has ongoing research into the causes and treatments for LBD. The 4/4/14 blog, tells how the Brain Support Network makes brain donations easier.

Making a brain donation can also be costly. Mayo does not require that the patient be seen in its clinic, but does require that families pay the cost of brain procurement, which can amount to as much as $1,000. However, Due to a recent charitable contribution targeting LBD research, BSN can now provide families who need assistance with a grant up to $500 for the brain procurement.

BSN staff states that they hope that these grants result in an increase in research into the cause, treatment, and cure for LBD. They are the first organization, and presently, the only one, to offer grants to LBD families for brain donations. Check out BSN’s website, http://www.brainsupportnetwork.org/, for information on the two main purposes of brain donation and for more information about the work that BSN does besides helping families make brain donations. For more information about the LBD brain donation grant, email them.

The Brain Support Network doesn’t just help with LBD brain donations. Nationally, they promote and facilitate brain donation for anyone diagnosed with any neurological disorder, including Parkinson’s, MSA, FTD, AD, vascular dementia and others. They also track the research that is done involving these disorders.

Locally, the BSN sponsors caregiver support groups in Northern California and maintain relationships with those neurologists in the area who specialize in the diseases that the organization tracks. The group also sends emails to everyone on their extensive database about upcoming events, research programs, relevant findings, and articles on caregiving.

If you want to be on their email list, contact them at the email address and explain your interest. For example, are you interested in knowing more about brain donations themselves, or are you more interested in research? Or perhaps, you live in Northern California and would like to attend their caregiver support group meetings.

Email the Brain Support Network: braindonation@brainsupportnetwork.org
The BSN website: http://www.brainsupportnetwork.org/

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

PD Groups and LBD

LBD caregivers who attend a PD group often come away feeling alienated and asking questions like these: Why do so few members recognize the link between PD and LBD? Don’t they know that most PD patients will eventually develop LBD symptoms?

First, some facts drawn from our latest book, Managing Cognitive Issues:

• As many as 80% of people with PD will show signs of dementia by age 80. If they have active dreams, hallucinations or mild cognitive impairment, dementia will usually occur within a few years.

• In 2005, experts from the dementia and movement fields met and identified Lewy body dementia as an umbrella term for Parkinson’s disease with dementia (PDD) and dementia with Lewy bodies (DLB). At that time they agreed that both disorders had the same cause and the same non-motor symptoms. They arbitrarily set a rule that if the non-motor symptoms started at least a year after the motor symptoms, then it would be called PDD. Otherwise, it would be called DLB.

• Lewy bodies are present in both LBD and PD, but in different parts of the brain. In PDD, they are present in the areas of the brain where both PD and DLB symptoms originate.

• Researchers believe that Lewy bodies are normal proteins that environmental toxins have caused to clump togather and cause more damage, the type of damage depending on where the Lewy bodies are in the brain.

• With PD, Lewy bodies are in the midbrain where fine motor functions are controlled. With DLB, Lewy bodies are in the cerebral cortex, where thinking is controlled. With PDD, Lewy bodies are in both areas and both motor and thinking functions are affected.

• Lewy bodies can also be in other areas of the brain, where they can affect functions like visual perceptions, dreams, swallowing, blood pressure, etc.

Back to the questions: First, there is a natural resistance to accepting that an already debilitating disorder can advance to include other, even worse symptoms like dementia, i.e., become PDD.

This resistance is often assisted by their doctors, many of whom still do not accept that PD advances into dementia as often as it appears to do. When dementia does occur, some doctors say that the disorder was never PD to begin with, that it was always LBD, and that the motor symptoms were “Parkinsonism” not Parkinson’s, itself. When your doctor doesn’t believe the two disorders are linked, it makes sense that you won’t either.

We believe that the information linking PD and LBD gets stronger every year. However, doctors are often working with information that isn’t that recent. The ten years since 2005 is a very short time where medical information is concerned. Many doctors and movement specialists are still following what they learned in school, and may not support a connection between PD and LBD. Worse, even experts disagree! While all seem to agree that Lewy bodies are present in both, not all agree that PD advances to LBD. Some say that when it does, it wasn’t PD to start with, but “Parkinsonism,” which is what DLB motor symptoms are called.

When we visit PD groups and talk about LBD symptoms like hallucinations and active dreams, we see heads nodding in recognition. Every group we've visited has at least one person, often many, with one or both of these symptoms. This helps the group to see the connection between the two disorders. Then we talk about Lewy bodies and how they spread from the area of the brain that causes PD to other areas where they cause these non-motor symptoms. When they ask me how often a person with PD will advance into LBD, I tell them that I, personally, think that it will happen 100% of the time (pause) if a person lives long enough, which might be 105! That usually brings a laugh—and a feeling of reprieve, along with a better recognition of the connection.

On the positive side, we really do see a change of attitude. Most people in the PD groups we’ve attended this year see LBD as at least a sister disorder, with many similar non-motor symptoms, if not an actual part of PD. Most of them have heard of Lewy bodies. Most are interested in learning more. Some already had our first book that focuses specifically on LBD and many were interested in our new book.

As a LBD caregiver in a PD group, you get to be a teacher. You also get to let people know that life goes on, no matter what and that just like they learned to adapt to movement challenges, they will also find ways to adapt to non-motor challenges. For your own support and education, you may need to turn to online groups. There are several very good ones and more starting every day. Check these out and choose one or more that you feel comfortable with.

LBDA.org: Access the first three groups here. Under Find Support. Check to see if there are any local groups near you. Then scroll down to Virtual groups to access the following groups: LBDA Forums, LBD Caregivers Yahoo group and LBD Caring Spouses Yahoo group.

Also check out these two Facebook groups:
Lewy Body Dementia Support Group
Forget-me-not Lewy Body Dementia Support Group

For information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Visiting PD Groups

We’ve visited several Parkinson’s groups this summer and just finished participating in the Parkinson’s Power Summit in Spokane. We’ve met some wonderful people and as always, learn more than we teach. Some of the things we’ve learned:

In every group we visited, there were people with slow thinking, hallucinations and other early signs of encroaching LBD. Even so, a favorite refrain in the PD community has been “dementia is a something that a few people with advanced PD occasionally get.” This is changing and more people are aware that there’s a connection between PD and LBD. Group members related with Jim’s stories of his first wife’s hallucinations and active dreams. They experience these symptoms too.

People dealing with PD are very aware that there’s more to PD than movement issues. In fact, we heard over and over that non-motor symptoms were more distressing than the motor symptoms. Hallucinations and active dreams were the ones most mentioned but others such as depression and irrational behavior were also mentioned.

On the other hand, few were aware that drug sensitivity could be a problem even for someone with only PD, and that it could become more likely as the disorder progressed. This is serious, but this symptom can sneak up on you. A person can take a drug for years successfully and then start being sensitive to it. PD drugs are very good examples of this. When a person with PD starts hallucinating, the first think a doctor will do is change the PD drugs that the person has been taking. Other once useful drugs, such as over-the-counter cold and allergy medications can also become troublesome.

PD families are well aware of the value of alternative therapies for management of motor symptoms but less aware of how useful they can be for mood, stress and anxiety management. We heard people discussing drugs they used for these symptoms, but very little about non-drug alternatives. A few did use massage and aromatherapy and Power Summit Conference attendees were very interested in a lecture on using essential oils to deal with these issues and more.

Next week, we will be attending another big conference—and then we will start wending our way back to Arizona.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia


Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Generic Drugs

LBD caregivers are usually very aware of their loved one’s drug sensitivities. You avoid those drugs that you know can cause problems even if they haven’t for your loved one. You know your loved one can be sensitive to almost anything and so you monitor every new drug carefully. But what about generic drugs? Do you use generic drugs? Do you monitor each new generic version of an old, trusted drug as carefully as you would a new drug?

You should. Generic drugs are required to be the same as the brand name drug they replace “in all ways that matter.” Generic drugs can use different dyes, filling agents, chemical binders or coatings. Although the drug company must show that these differences are “trivial.” However, what is and isn’t trivial for an individual, especially one with the severe sensitivities that LBD imposes can differ widely.

I first came across this years ago when my sister, Lucille, who had PD, broke out in a rash after taking a generic drug for migraines. When she went back to the brand name drug, her rash disappeared. Over the years, Lucille learned that she was likely to react in some negative way to many generics. Her doctor explained that she appeared to be super sensitive to certain fillers or other non-regulated parts of generic drugs and that she should avoid them. Because these ingredients are not regulated, they are not shown on the labels; thus Lucille had no way of knowing what she was sensitive to.

Kathy’s husband, Jerry, has DLB. He too reacted poorly to generics. He’d been taking Seroquel to successfully stop his frightening hallucinations. They tried a generic, but it didn’t work. In fact, it made the hallucinations worse. However, their pharmacist suggested they try a different generic brand before they returned to the more expensive brand name product. It worked well. Later, during an after-hospital stay in rehab, Jerry started hallucinating again. Kathy checked with the nurse and sure enough, the nursing home was using a different generic. They allowed Kathy to bring in the prescription bottle from home and they used that kind the following night. The next day, everyone commented about the unbelievable difference.

The bottom line is that all generics are not the same. If like Lucille, you can’t find a safe one, you may be better off using brand name drugs. However, if you can find a helpful pharmacist, you may be able to find a generic that works as well as the brand name drug. The difference in price definitely makes the effort worthwhile.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Preparing for That Long Slide

Two weeks ago, this blog was about recognizing that more than normal fluctuations had happened and the stress that accompanies such a slide. This week is about things you can do ahead to prepare for that time. Remember, preparation is like insurance. You certainly don’t want whatever it is you are insuring against to happen, but you know it can. Experiencing such a slide is going to be stressful no matter what, but having a plan in place and information available will go a long ways towards limiting that stress.

Know where to get help. Develop a list of places and people that may provide the help you will need. Call them now, while you aren’t in crisis and find out about their services. Sort them out by groups and grade them so that you will have a first and second choice when the time comes.

Plan for respite care: Jim and I are fans of planning a respite routine well before it is actually needed. Start out with just a few hours a week. Then with a routine in place, it can be expanded when you actually do need to get away for a while, even overnight. This initial time is very stressful for both of you. Having a respite routine in place will reduce your stress because you will already have a plan. It will reduce your loved one’s stress by keeping change at a minimum.

You may already have friends or family coming to stay occasionally. This will not be enough. You will need more than a few hours of time that is often clouded by worry that your helper may not know what to do if something goes wrong. After a long downturn, regular respite care needs to start as soon as you can get it set up. You can choose between at home help or respite care in a long term care facility, or if your loved one can still function well enough, adult day care. The same issues that apply to choosing long term care apply to chosing any of these.

If you plan to use home care, start using it immediately for a few hours a week—enough to build a relationship with your helper. If you plan to use respite or day care, start visiting the facility. Go to lunch or dinner there, and use their day care services. Even “take a vacation” together and visit overnight.

Equipment: You may suddenly need a wheelchair, a bathroom commode, a hospital bed or even a lift. Know where you can get these supplies. Physicians can write prescriptions so that Medicare will cover much of the cost. Find out now what the process is for this to happen. For example, can you call in your request or does the doctor need to see your loved one and evaluate the need?

Hospice. This may sound extreme, but it is also practical. Hospice offers the services and equipment you need to make your loved one more comfortable and you less stressed.

Walter’s slide happened after a bout with a UTI. The doctor told us the end was likely near and suggested Hospice in our home. It helped physically but I became really depressed. I checked out funeral homes and looked at urns. It’s been three years now and Walter is still living. He never recovered from his downturn but he still has periods of awareness. That’s when he tells me he is going to live a lot longer than I think! Walter was on Hospice for a year before they decided he didn’t qualify. By then they had helped me over my depression and I was able to find a LTC facility for him close to home. --Joan

Hospice requires a doctor’s documentation that death is likely within 6 months. However, many people, including those with LBD, recover enough that they go off hospice and live for many months or even like Walter, for years longer. That’s because hospice is designed to decrease stress and we know what stress does to the Lewy team! Using hospice is not an admission of failure or even that the end is coming in less than a year. It is a practical use of available services in a time of severe need. Hospices vary in the services they provide. Read more about Hospice in the 6/15/13 blog.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Staying Active

In the summer, we stay at RV resorts a lot. On Saturdays, they usually have a breakfast where Jim gets to fill up on pancakes. A while back, we met Dorothy and Ben at one of these Saturday breakfasts. We connected and sat visiting for a long time. Ben was very open about his PD and MCI. Both were making an effort to keep on doing the activities they've enjoyed for years, even though they understand that they have to adapt along the way. A big adpation came when they quit full time RVing. Now they they just go out to RV parks close to home for a week or so at a time--and Dorothy drives. A few days later, we met again, to play a card game. It was a game Ben's been playing  every day for years and we all had a good time.

It didn't go so well, when Dorothy and Ben came to the clubhouse one evening to play another card game. It was similar to one they were used to playing, but even with help, Ben was lost. Although the other players were patient and accepting, the experience was embarrassing and discouraging for Ben. Eventually, he just quit. “I’m going to go walk the dog,” he said and left us to our game. That evening Dorothy and Ben learned some important lessons.

• Dorothy and Ben knew that a new game would be beyond his abilities. However, they thought that since this game was similar to the one he already knew, he’d be able to learn it. Not so; his MCI had become so advanced that the new rules were just as confusing as a totally new game would have been.

The lesson: Don’t add new rules to an old game or task. This is as bad as trying to teach your loved one a new task or game. Both will lead to discouragement and possibly, quitting altogether. Actually, you CAN teach a person with early to mid LBD something new. But it needs to be done in very small increments and with many, many repetitions. A normal person needs to repeat something about six times to learn it. Double or triple that for someone with LBD. But remember that your loved one with LBD can also have Alzheimer’s, where memory is more of an issue. If AD is involved, learning will likely not happen.

• The new group was comprised of seven people, far more than our the cozy group of two couples that Ben had been playing with the previous day.

The lesson: Three people are about all a person with MCI can deal with. Maintaining focus is already an issue, and adding more people becomes too distracting. Keep the group to no more than four, including your loved one.

• The new people were strangers. Dorothy and Ben had never met them before, although we all belong to the same travel group and have similar interests.

The lesson: Having to deal with strangers, even friendly strangers, increases anxiety. New people should be introduced one or two at a time, with the people being the focus, not an activity, such as a busy card game.

• These people were accepting of the “beginner” in the group, but became restless when he didn’t catch on, time after time.

The lesson: It is important that participants understand going in that the goal is to socialize and enjoy the game, not to play well—or quickly. The easiest way to do this is to make up your party of friends who already know your loved one. For instance, a golfer with MCI might limit his playing mates to a few buddies who are aware of his abilities.

• The card game was in the evening, when Ben’s thinking abilities were at their lowest.

The lesson: Play in the morning when thinking levels are at their best. If that isn’t possible, consider playing in the early afternoon, after your loved one has had a nap.

• Dorothy and Ben almost always go everywhere together. By mutual agreement, they always have. But now that Ben had become more dependent, Dorothy would like to get out on her own occasionally. For example, she’d like to play games that are more challenging than Ben can now play.

The lesson: Develop a ritual of "girl's (or guy's) time out" while your loved one is still able to stay home alone, You might arrange to meet with friends once a week to play cards, go to lunch, or just visit. When your loved one can no longer stay alone safely, don't give up your respite time. Instead, arrange for someone to come and visit with him while you are gone. Respite times are a must for all caregivers.

Dorothy and Ben are also doing a lot of things right. Next week, the blog will be about this.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

The Long Slide

You expect LBD to fluctuate. That’s one of its defining symptoms. But, then there comes a day when functioning takes a long slide downward, with a lot more confusion, agitation, sleep problems and less mobility.

When this happens, the caregiver won’t be able to think clearly either. “I told myself that fluctuations happen and upturns follow downturns,” Mary said. “Until that last slide, Lloyd still had wonderful periods of alertness. I couldn’t believe that would end anytime soon. I knew that with LBD, a downturn could be steep and that a person seldom returned to their former functioning. But I guess that I felt that planning for such a slide was inviting it to happen. And so when it did happen, I wasn’t prepared. I was overwhelmed with the extra work and the additional worry but I didn’t even recognize that I was in crisis too until a friend asked me if I didn’t think it was time for more help.”

Any number of situations can bring about these sudden downturns: A simple cold or a serious kidney stone attack; a fall or a painful injury; ongoing problems like UTIs, dehydration or even a supposedly good thing like too much excitement over a happy event. Or even nothing identifiable. A healthy, low stress lifestyle can extend cognition and improve quality of but it does not necessarily extend life. When reserves built up by careful living are gone, mind and body degenerate very quickly. It is no one’s fault. It is simply the nature of the disorder.

As when your loved one can no longer make their own decisions, this is another turning point for which it helps to prepare, earlier than later. Like Mary, it is easier to think that things will go gradually downhill, with expected fluctuations but nothing drastic. They likely will, perhaps for years. But the chances are that eventually, a slide will happen. What will you do then? How will you deal with it when all of your energy, time and attention are taken up in dealing with these new, overwhelming problems? Preparation for a downturn does not mean that you expect or want it to happen. It means that you know it could and that by being prepared, you won’t add to the problem by being so stressed. Think of such preparation as insurance—something you hope you never need but will be very grateful for if you do need it.

As it did with Mary, a downslide tends to sneak up on you, adding work and worry. Before you realize it, you will be so embroiled in just getting by day to day that you may not recognize how stressed you really are—or know what to do about it if you do recognize your stress. Thus, the first step in preparation is setting up a system that will help you recognize that this downturn is different from those in the past.

Make a list that you check daily. If you answer yes to any of these questions, it is time to call for help:

• Has it been more than a week since the slide, with little or no recovery or worse, more decline?
• Am I are feeling overwhelmed by the physical requirements of caregiving?
• Am I getting so little sleep that my caregiving has suffered. Am I less patient or easier to anger?
• Do I feel that there are not enough hours in the day for everything I need to do? Do I seldom take anytime just for me? Am I too tired to enjoy it when I do?
• Am I still un-revived by a few hours of respite? Do I come back still feeling overwhelmed, anxious or tired?

Of course, knowing that you are stressed simply creates more stress unless you know what to do about it. Next week will continue some ways you can prepare for that long slide, and have the information you need ready to use when the time comes.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Ten Years, Four Books and a Lot of Love!

This week we’ve been married for ten years and so I’m taking time to share some history.

After Jim’s first wife, Annie, was diagnosed with dementia in 1998, he retired from his job in the Silicon Valley and became her caregiver. To this day, Jim believes that the medical profession’s lack of knowledge about LBD and its drug sensitivities decreased both the quality and the length of Annie’s life. He became an early member of the Yahoo LBD Caregiver’s Group, a charter member of the Yahoo Caring Spouses Group, and was actively doing all he could to spread the word about LBD.

Annie passed in early 2003. That same year, he and four other LBD caregivers founded the Lewy Body Dementia Association. Jim was its first president. The next year, he moved to Arizona. Jim and Annie had been square dancers for years before her dementia made it too difficult and so he knew square dancing was a good way to meet people. When fall classes started, he became a “retread”—that, is someone who had returned to the sport after a period away. I was one of the people he met.

We connected right away. Like Jim, I was a retread. I’d been a caregiver, too. My husband died with lung cancer in 1997. Then  in 1998, about the same time Jim retired, my sister, Lucille, became terminally ill with colon cancer. I took an early retirement from my substance abuse nurse/counselor job, left Alaska where I'd lived for 27 years, and moved in with her. In the nine months we had together, I learned to appreciate the help that hospice provides. Lucille also had Parkinson’s, but even after 20 years, she showed few signs of dementia. She did occasionally hallucinate and become irrational, especially after being medicated for pain. It wasn’t until I met Jim that I understood that Parkinson’s was a Lewy body disorder and that these symptoms were due to a Lewy body-related sensitivity to her pain drugs.

When Jim and I met at that square dance class, I was living in Washington and wintering in Arizona. I’d started in Washington and found a class in Arizona where I could continue. It was the same one Jim was taking. The instructor put us together for my first dance…and we’ve been together ever since. By the spring of 2005, when classes ended, we were engaged and in August, we married.

We eventually decided to live in Jim’s home in Arizona and travel to Washington in the summers to avoid the heat. Our spare room was filled with boxes of fliers that the LBDA had ordered in a large quantity—to save money. When we needed a bed for an overnight visitor, we moved the boxes together and laid a twin mattress on top of them. Less than a year later, information had changed so much that the LBDA published new brochures even though there were still enough boxes filled with the out-dated brochures to support the mattress. We tossed them and bought a real bed.

Just as Jim’s mission was to spread the word about LBD, my dream was to travel and teach. A perfect match! We bought a used RV and began traveling from our home in Arizona to Washington for the summer. Along the way, we talked to care facility staff and caregiver support groups and anyone who would listen. I’d also been a writer for years, for fun and work. Eventually, those annual trips eventually resulted in the book, On the Road with the Whitworths. It’s an entertaining book, not a resource book. However, caregivers need to relax now and then and so we believe it is worthwhile.

But there was a need for a resource book too. A recurring refrain from caregivers was that they wished the people who cared for their loved ones knew more about LBD. This led to our self-publishing Riding a Rollercoaster with Lewy Body Dementia in 2009, targeted towards care staff. When we submitted it to Demos Health Publishing, their editor said, “Care staff don’t buy books, family caregivers do.” and asked us to rewrite the book for that audience.

In the meantime, we took the Rollercoaster book and took it on a summer tour and proved the editor right. Between our tour and the internet, we sold 500 books—mostly to family caregivers. In October, 2010, A Caregivers’ Guide to Lewy Body Dementia was published and began receiving good reviews immediately. In 2012, it received a Caregiver Friendly Award from Today’s Caregiver magazine and website. To date, over 5000 copies have been sold, but more importantly, we’ve heard from many, many caregivers about how helpful the book has been. Jim feels blessed that his ongoing mission is so successful and I am honored to be a part of that journey.

Now we are reaching out to other people dealing with Lewy body disorders, especially to those with Parkinson’s. Our new book, Managing Cognitive Issues , helps families recognize the symptoms that warn of encroaching cognitive symptoms, explains the dangers of drug sensitivity and provides some alternative methods for dealing with the disorder’s troublesome symptoms.

Who knows what will happen next!

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

For fun and to learn more about us, read On the Road with the Whitworths.

Dealing with Doctors

A caregiver's life includes many visits to a variety of doctors. There's the primary of course, then there are all the specialists. In the past, we have discussed how to choose a doctor. (The most important thing is to choose one who listens to YOU, the person who is directly involved in your loved one's care!) This blog is about how to deal with the doctor you've chosen.

Getting an appointment. What do you do if you feel your loved one needs to see a doctor sooner than an offered appointment date? You can always go into the hospital ER, but that isn't necessarily a good choice for someone with LBD. You really need someone who is familiar with your loved one's unique responses to drugs and other issues.

Barry started waking up and staying awake most of the night and then sleeping a lot during the day. Darla called his PCP but the earliest appointment was in two weeks. I asked to speak to a nurse who told her nothing could be done until the doctor saw him. Darla didn't accept this. She was polite but voiced her concern about having to wait so long. "I'll see what I can do and call you back," the nurse finally said. She called back in an hour with an appointment in two days.

Caregivers have to step up and make themselves heard. You will be surprised to find that usually, you WILL get results.

Preparation. Your visit will be better if you come prepared. What do you want to ask? What are the specific symptoms and behaviors? This is where your daily journal comes in. This doesn't need to be a lengthy thing. In fact, you can use a calendar to jot down pertinent information in a few words, along with a time of day.

Darla had been using her calendar to record when Barry got up and when he when he went back to bed (as best she could remember in the morning), and the times he napped during the day. This record, along with a list of the drugs he was taking and their times provided his doctor with the information he needed to adjust Barry's medications so that his sleep cycles were better regulated. 

Getting the doctor's attention. Doctors are busy, with little time between appointments. Keeping a daily journal is great for helping the caregiver to collect information, but it needs to be boiled down into a more easy-to-read format for the doctor. Darla's calendar list of sleep behavior worked better than detailed journal entries, a long email or a drawn out verbal narrative would have. Barry's doctor asks caregivers to use a 3x5 card to write out their chief complaint, with as few words as possible, while still being clear about what the problem is.

Darla's card read, "Barry has started waking up and staying awake most of the night. Even though he sleeps a lot during the day, he doesn't feel rested." 

These two short sentences gave the doctor a jump start towards knowing exactly what issue was bothering Darla and Barry most.

Working with other specialists. Don't expect your loved one's internist, podiatrist, cardiologist, or sleep specialist, etc. to know about Lewy's unique symptoms, even those related to their specialties. They may, but don't expect it. A doctor will make the best diagnosis they can and then move on to treat that issue. At that point, they often stop looking for clues that might connect it with another disorder.

Prior to seeing a dementia specialist, Barry saw a sleep specialist for his disrupted sleep cycle. The specialist diagnosed sleep apnea, based on Barry's thrashing of limbs while asleep. He prescribed a mask for breathing assistance. Barry was unable to understand how the unfamiliar mask could help him sleep and refused to leave it on.

While sleep apnea can occur with any dementia, REM Sleep Behavior Disorder (RBD or Active Dreams), is a unique symptom of LBD. A Lewy-savvy doctor would have considered active dreams first. Not only is RBD more likely, its treatment will be easier for Barry to accept.

Drug sensitivity. Don't expect any doctor not specializing in dementia to know about Lewy's drug sensitivity. Or they may know, but need a reminder. Always mention your concern about  Lewy's drug sensitivity and tell the doctor of any personal issues. They will usually respond with a safer alternative if necessary.

The sleep specialist offered to prescribe a sleep aid for Barry when he wasn't able to wear the sleep apnea mask. Darla reminded him of Barry's LBD and voiced her concern about sensitivity, adding that he had reacted poorly to Haldol in the past. "This isn't nearly as strong as Haldol," the doctor said, "but let's try melatonin instead. I've read that LBD patients can tolerate it." 

For the LBD caregiver, doctors visits are a cooperative experience. You know your loved one best, while the doctor has valuable specialized training. Speak up, voice your opinion and ask questions. If a doctor asks your opinion about various treatments, consider this a sign of good doctoring, rather than a lack of knowledge. Be willing to share honest impressions--and be glad you have a doctor who includes you in the treatment team. Your loved one is likely getting the best possible treatment!

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

How PD Drugs Interact with Cognition

Many people with LBD start out with Parkinson’s. They may have been using PD drugs successfully to improve mobility for a long time. Then as the disorder progresses into LBD, these drugs can begin to cause more problems than they solve.

To understand why, it helps to know how dopamine (DO) and acetylcholine (ACh) interact. These chemicals are both neurotransmitters (NTs) that pass messages from one nerve cell to another. Different NTs in different parts of the brain pass different messages. For instance, dopamine in the midbrain controls small motor function. ACh is in several parts of the brain, but in the cerebral cortex, it controls cognition. These two NTs operate on a ratio system. Think of a teeter-totter. When dopamine levels go up, ACh levels appear to go down even when they haven’t really changed. Conversely, when ACh levels go down, dopamine levels appear to go up, even when they haven’t really changed. It’s the ratio that counts, not the actual amount. We call this the DO/ACh balance. (See the 8/23/13 blog for some photos and another discussion of this same subject.)

Parkinson’s occurs when Lewy bodies invade the midbrain and decrease dopamine. However, no neurotransmitter can cross the blood brain barrier (BBB), and so doctors can’t just add more dopamine. Instead, PD drugs work around this problem in several ways: by using: a precursor to replace dopamine, enzyme inhibitors to preserve dopamine, dopamine agonist to mimic the NT, or an anticholinergic to maintain the DO/ACh balance. The drugs named below are not necessarily the only ones in that class, but are examples of those most commonly used.

1. Replace. These drugs end up replacing or adding dopamine.

Sinemet: (carbadopa/levadopa) Levadopa,is a precursor to dopamine. Unlike dopamine, it can cross the BBB. Once in the brain, levadopa is converted to dopamine. However, in practice, the large doses required can cause unwanted side effects. Adding carbadopa, which inhibits the enzymes that break down levadopa, allows the use of smaller doses. Sinemet is drug most commonly used to manage PD. It tends to become less effective with long use, and its effect on physical symptoms can become erratic.

Symmetral: (amantadine) is an anti-viral drug thought to increase dopamine levels while inhibiting its breakdown. Tolerance to the drug develops quickly, making it less effective. It is seldom useful for very long.

Cognitive issues. As Lewy bodies migrate into cognitive areas where acetylcholine is the active neurotransmitter, Sinemet can tip the DO/ACh balance so that cognitive dysfunctions may occur. Research has shown that early hallucinations and confusion in PD patients are most often drug-related. A reduction in Sinemet dosages frequently decreases or stops these symptoms. However, PD is progressive. The symptoms will probably reappear at a later date, at which time dementia drugs should be considered.

2. Preserve. These drugs work by inhibiting the enzymes that break down levadopa or those that break down dopamine.

Drugs like Comtess (entacapone) inhibit the enzyme, catechol O-methyltransferase (COMT). They act much like carbadopa to reduce the breakdown of levodopa before it becomes dopamine. This allows more dopamine to be manufactured and released into the system. This drug might be used to assist the action of carbadopa.

Drugs like Azilect (rasagiline) inhibit the enzyme Monoamine-oxidase B (MOAB). This decreases the breakdown of dopamine after it is manufactured. They are often used as an adjunct to Sinemet. They can greatly improve and smooth out the functioning of Sinemet.

Cognitive issues. As with Sinemet, these drugs will tip the DO/ACh balance and appear to decrease the level of ACh. They often work well until the disorder progresses into the cognitive areas of the brain, at which time cognitive symptoms can appear or increase. The MOAB inhibitors tend to cause fewer problems than the COMT inhibitors.

3. Mimic. These drugs are dopamine agonists (chemicals that act like another chemical.)

Drugs like Requip (ropinrole) mimic the action of dopamine and allows better control of PD symptoms. This drug can be used alone in early PD or as an adjunct to Sinemet as it begins to show fluctuations in effectiveness.

Cognitive issues. As the disorder progresses in the cognitive areas of the brain, these drugs tend to increase dementia symptoms but the effect is seldom permanent. Symptoms disappear when the drig is stopped.

4. Balance. These drugs change DO/ACh balance ratio by decreasing acetycholine. They are called anticholinergics. LBD caregivers learn early on to avoid all anticholinergics because they trigger LBD drug sensitivity symptoms, where a drug acts adversely or as an overdose.

Artane (disipal) has been used with PD to increase the ratio of dopamine to ACh. These drugs are not used much anymore because they cause too many side effects.

Cognitive issues. The direct reduction of ACh by these drugs is the most likely of all to cause cognitive problems and to cause them earlier than other PD drugs do.

The bottom line is that for any PD drug to work, it must in some fashion change the DO/ACh balance ratio so that there is, or there appears to be, more dopamine in the system—and thus, less ACh. This process usually works work well until there is cognitive involvement. Then the lack of (or apparent lack of) ACh causes an increased loss of cognitive functioning. The good news is that this drug related loss lasts only as long as the drugs are in the body. At this point, doctors work to help their patients balance mobility with cognition. For instance, benign hallucinations might be tolerated for better mobility, but scary ones might justify fewer PD drugs even though mobility will be greatly decreased.

References:
Family Caregiver Alliance Fact Sheet: Parkinson’s Drug Therapy & Drug Research.

Klein JC, et al. (2010) Neurotransmitter changes in dementia with Lewy bodies and Parkinson disease dementia in vivo. Neurology. 2010 Mar 16;74(11):885-92.

For information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia


Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

How to Help a Caregiver, Part 2

Last week, I posted the first half of Lisa Cooke’s blog, “Ways to Help a Caregiver.” For those who are coming here first, Lisa polled her LBD support group for ideas about how to help and shared their responses in her blog, Lewy Warriors. In that first half, she suggested some nice things to say, and some things to do that didn’t include taking responsibility for the loved one, such as helping with chores, bringing a meal, and visiting. This is the final half of that wonderful blog.

Include the caregiver and their LO in social activities. As stated before, caregiving is very lonely. Day after day goes by with routines that never let up. We can’t just decide one day that we’re not going feed or dress our LO. We can’t take a break from taking them to the bathroom. Providing some social interaction can give a much needed change.

When my father reached the point with Parkinson’s that he could no longer be left alone, three of his sisters came to my parent’s house every Wednesday evening so my mother could go to choir practice. Mom would usually bake a cake or pie before they came, and the sisters had a couple of hours to visit with my father and each other. They loved the time reminiscing, and my mom’s desserts were an added bonus (she’s a good cook) and it gave my mother a couple of hours each week where she didn’t have to worry about him. It was a win-win for everyone.

Now that my husband is no longer capable of going out to dinner, his brother, sister, and their spouses come to our home occasionally for pot-luck or pizza. My husband gets to stay in his favorite recliner and still visit with his family. It’s an easy way to enjoy each other without moving him from his comfort zone.

If the LO is still able to leave the house, plan a small gathering with friends. Talk to the caregiver to find out if there are special needs (Example: foods that are eaten easily, a comfortable place to sit, and easy access.) Keep in mind that those with dementia tend to get anxious easily. No loud music, large crowds or frolicking children unless you know those things will not stress the patient.

For the brave ones. The number one request by far dealt with giving the caregiver a break, even for a few hours. One of the moderators of our support group said, “I wish someone would call and say, ‘I’ll be over on Sunday from 1-3 to sit with your wife, if you have anything you’d like to do.’” He said he needed the friend to be specific with when and how long, and to give him an opportunity to plan. He also mentioned how much he would appreciate if someone would call and offer to help with the next doctor’s appointment. Transporting our LOs is tough to do alone.

“If someone could just come one night and take care of night issues so I can get some sleep, that would be great.” Even one night in a month can make a huge difference to an exhausted caregiver. And knowing the primary caregiver is asleep in the other room should relieve some of the fear of being in the situation of dealing with nighttime issues.

One caregiver had a friend that would come to her house one Sunday a month to fix breakfast and visit with her husband so she could go to church. Another caregiver said her husband had a friend that takes her husband to get a haircut and out to lunch once a month. For those caregivers, those days are a treasure they can count on.

For those who live out of town. What if the caregiving situation is for your loved one and you live out of town? Maybe, you have a sibling or close family member taking care of your parent and you don’t know how to help. There are things you can do long-distance that can make a big difference.


One caregiver said her brothers and sisters got together and hired an aide so she could get a much needed vacation after 7 years of having no break in caregiving duties for their parents. “It was less than $100 for each of them and I needed that vacation desperately.”

Sending text messages to both the LO and the caregiver can brighten each of their days. Phone calls to ask how they’re doing and offer moral support are always helpful. Even flowers sent to let the caregiver know you appreciate his duties lets him know he’s not forgotten.

In summary
•Helping out doesn’t have to mean providing physical care for the patient. Offering to do chores or bring dinner is always welcomed.
•Phone calls, hiring an aide for a couple of days, or even sending flowers or cards are thoughtful ways to help.
•Please visit, but call first and ask for a specific time that would work well.
•Offer to sit for an hour or two so the caregiver can get out.
•If you have several friends or family members that are close to the caregiver, work as a team to take turns bringing meals, doing chores, or sitting with their LO. Things like that are often easier in a group and letting the caregiver know there’s a team supporting her is priceless.
I hope you enjoy Lisa’s blogs as much as Jim and I do. Expect to see her here about once a month because she’s agreed to trade blogs.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia