LBD and Football

I boycott football. I don't watch it. I don't feel that I can work with people who deal with dementia and support a sport that causes it.

I tell this to people who start talking about football and they will usually nod. They've heard the statistics. "But it's the player's choice to be out there," they tell me. And, "The game will be played whether I watch or not," they say.

I say, "No, it is our culture's choice to lionize the game, to make it so profitable for the players, the NFL and the media. If we didn't watch, it would not be so attractive to our young men. Our boys would be less likely to want to play it in middle school, or high school."

I seldom convince anyone. They usually nod, and keep talking. But at least, I've made them think about what they are promoting.

They also tell me, "Yes, but, the NFL has changed a lot of rules and the repeated head injury trauma resulting in CTE* isn't as likely now."

But even with the new regulations, there were more concussions in 2015 in than in previous years. Besides that, nearly a third may not have been reported because during training camp and certain other times, injury reports aren't required. (Injuries are less dangerous if it they occur during training?) Also, concussions aren't always recognized until there is another bump that increases the first injury.

So why am I talking about this on my blog? Well, CTE is a man's disease...not because women can't get it but because they usually don't play such violent sports. Men are also at higher risk for LBD*. And so, as children or as young men, football players increase their already higher chances of developing LBD, or of developing it earlier than they otherwise would--in addition to any CTE they also develop. This is supported by a 2013 study that showed that CTE advanced the progression of Lewy bodies. That is, it doesn't cause LBD, but it sure can make it show up sooner and advance more quickly.

Now, we believe that LBD is caused by a combination of genetics and environment. That is, we all start out with a susceptibility to certain diseases.

If you have a family history of LBD, Alzheimers or other dementia in your family, you may have the genes for that tendency. That doesn't mean you will get it. That depends on the other half of the equation: the environment. You will likely never experience it...unless it is triggered by something like toxins in our air or food--or repeated head trauma.

Some of these we can control for. We can be careful of the insecticides we use. We can choose organic food. We can also choose the sports we play, and the sports we encourage our children and young men to play.

We have more power than we think. If we all turned off the TV set on football night--or switched the channel, what would happen? Why don't you try it and find out?

References:
Frontline. (2014) Shocking statistic: 96% of pro football players suffered from brain disease before death. October 1, 2014. RT Question More. https://www.rt.com/usa/192316-frontline-football-brain-cte/

Knowles B. (2016) 15 Shocking Statistics About Concussions in the NFL. The Sportster. http://www.thesportster.com/football/15-shocking-statistics-about-concussions-in-the-nfl/

Leung C, et al. (2013) Accelerated Protein Deposition in Individuals affected with both
Chronic Traumatic Encephalopathy and Lewy Body Dementia. Boston University.
http://www.bumc.bu.edu/enrichment/files/2013/01/leung-christopher.pdf

* Acronyms:
LBD: Lewy body dementia
CTE: chronic traumatic encephalopathy

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Happy Holidays

 Jim and hope that all of our readers have a Merry Christmas and a Happy New Year. I am under the weather today, with a bothersome cold, at just the wrong time of the year (but is there a RIGHT time?) and so there won't be a blog this week.

Even so, we will be visiting with family on Christmas. We hope you all can get some family time in too. Remember though, keep it simple, no arguments, and lots of room for down time...for you as well as for your loved one!

Holidays, Feasting, Families and Fun

Feasting is a common part of our holidays, starting with that turkey and all the fixin's at you probably had for Thanksgiving. 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.

Feasting: While this can still be a part of the agenda, consider changes in the kinds of food and the times it is eaten. Holiday food tends to be filled 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. Don't forgo these traditional foods entirely.

• Just use smaller helpings and resist seconds. 
• Then balance them with other more healthy foods that are also traditional, like fresh fruit, nuts, and winter vegetables like squash.

The proteins and saturated fats (think “animal fats”) that play a prominent part in holiday meals can leave a person feeling sluggish, fatigued and can interfere with normally effective medication. 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.

• Administer medication away from meal time, with a small amount of food to avoid nausea. 
• 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.

Families, friends and socializing are important but they can also be huge triggers for stress. We all know that the person with a Lewy body disorder has a low tolerance for stress. So do their care partners, not because of the disorder but because caregiving is already stressful. When families come to visit, stress can occur when expectations end in disappointments, spending leads to financial pressures, or unresolved family-of-origin issues pop up. To limit holiday related stress:

• Diffuse some soothing lavender or rosemary into the air. 
• Practice deep breathing or add some soothing massage sessions, for you and your loved one.
• Ask family members and visitors to focus on pleasant subjects and avoid anything that could lead to arguments.

Fun. The holidays are times of parties and family gatherings and activities that you may not do at any other time. As physical and mental abilities fail, these activities can become more stressful than fun. As a persons reactions to sensory sensations increase, certain activities can become not only stressful but can incite unwanted behavior.

• Think ahead and find ways to adapt. Thinking ahead can make all the difference where fun is considered.
• Instead of the traditional gathering and big meal at your house, consider ordering prepared meal or sharing the responsibilities with other family members. (Having it at your house is still a good idea because your loved one will be most comfortable there. Just make sure there is a quiet place somewhere for when things become too confusing.)
• If you are used to doing something challenging after the meal, like board games, or distracting like watching an exciting game on TV, consider something else, such as reviewing old family photo albums.

Self-care. Above all, take care of yourself. If you are too stressed to enjoy the holidays, you loved one won't either.

• Review your expectations and make them realistic, given your present situation.
• Get adequate rest. Take a nap when your loved one does!
• Limit your activities to what you know you can tolerate. 
• Be willing to reach out and ask for help. 
• Look for the little things to enjoy. 
• Consciously think of the things that you are grateful for. 
• Hug, smile and laugh. Enjoy!

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 foreducational purposes only. It should never be used instead of a physician's advice.

Making the Holidays Fun

This is a reprint from a blog several years ago. What it says is still true:

The holidays can be a difficult time for anyone with dementia. Change is scary and so as home décor changes, it adds tension instead of peace. Visits from family and friends can be overwhelming and tiring. For someone with sound and vision sensitivities, it can be even more difficult. Bright tree lights may be painful instead of fun. Loud music may be more stressful than enjoyable.

This doesn’t mean you should not celebrate nor that family and friends shouldn’t visit. Here are some tips to make your holiday season more enjoyable.

Strange places and too many people are both stressful. Therefore, forgo parties and large dinners that include your loved one. Instead, encourage family and friends to come visit—a few at a time.

Time visits for when your loved one is most alert. It is common for them to display “Showtime” (be unusually alert) with family, especially with those they do not see all the time. Enjoy this but expect them to crash and be very tired afterwards. Showtime is hard work!

Utilize respite care or adult day care to give you some free time for errands. If you do take your loved one out on an outing, plan ahead, avoid crowds, make sure it is something well loved, and don’t be gone a long time.

Play soft, soothing holiday music. Music has a different path to the brain and people can remember it when they can’t remember other things. Remember that music played too loud may be distracting and stressful.

Variety and change are no longer fun; sameness feels much safer and more comfortable. Therefore, don’t overdo the decorating. Keep your home looking and feeling familiar.

Get your loved one involved in the holiday preparations. Repetitious activities that are tedious for others are soothing for someone with cognitive impairment and can stroke feelings of accomplishment and pride. Enlist the help of older grandchildren and make this a family activity.

String garlands. All that’s needed is a long heavy thread and a darning needle. Try stringing cranberries, popcorn, even O-shaped cereal (Fruit Loops are cheerfully colorful). Extend the enjoyment by hanging edible garlands outside a window to attract birds.

Make paper chains. This takes some dexterity. It may be that a child can supervise while your loved one helps as able. Use construction paper, or even heavy foil wrapping paper.

Make pomanders. (aromatic balls) Stick cloves into oranges. These make lovely hangings or bowl displays and their scent may evoke calming, happy memories. Again, these require a little dexterity, but not much. Remember to throw them away after the holidays.

Crack nuts. Put your loved one to work with an old-fashioned nutcracker and a big bowl of walnuts, pecans and Brazil nuts. The ability to separate nuts from shells will depend on how much sequential ability is left. This may be another chore best done with a grandchild.

And finally, give yourself the challenge of matching the tempo of your loved one. Release some of that holiday generated stress by slowing down. Think about all the things you can leave undone instead of all those that need to be done.

Thanks to Independence4Seniors.com for many of these ideas.

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 foreducational purposes only. It should never be used instead of a physician's advice.

Capgras Syndrome, Part 4.

Happy Thanksgiving. We are traveling, visiting with family and enjoying the time away from home. We are also thinking about all the things and people we are so thankful for. Our lives overflow with gratefulness. For our loved ones, for our friends, for those of you who read our work, for those of you who comment, tell their stories and ask questions. We are so grateful for you all.

Here's one of those overheard comments, from Carrie:

"John was experiencing an episode of Capgras, (believing I was someone else) and accused me of trying to put one over on him. I really considered telling him I was sorry, but I was afraid that it would just make things worse the next time."

Yes, we do recommend that Carrie say she’s sorry. If one is being totally reasonable, it does seem to be a setup for John to believe that if Carrie has done it once, she will do it again. The difference is that someone who is experiencing Capgras, or any delusion, is NOT reasonable. What they really want is validation. They want you to know that they are feeling vulnerable, hurt, afraid, worried…all those negative feelings that make the delusions worse. The more negative feelings a person has, and the stronger they become, the more likely the person is to remember an event.

Therefore, Carrie’s job is to help John let go of those destructive negative feelings as quickly as possible. If she can let him know that she hears him, that she recognizes his fear, he can let go of it. Then, he probably won’t remember the incident. The next time will be a totally separate event. However, if Carrie resists and doesn’t calm his fears, those negative feeling will increase and John probably WILL remember next time. What he’ll remember is that Carrie lied to him. That he accused her of something he KNEW was true and she didn’t own up, that she resisted. Obviously, she isn’t to be trusted.

So, do try saying you are sorry when your loved one accuses you of something, even if it is ridiculous, even it it gauls you to do so. Give it a try. See how it works. But don’t do this half-heartedly. You have to say it like you mean it. Remember, your loved one is also very perceptive about feelings and if you don’t mean it, it isn’t going to work. And you ARE sorry. You are sorry about the whole incident, that he feels that way, etc. So focus on that and “play your part.” See what happens.

Of course, we don’t promise that it will work, even if you do everything right. Everyone is different and what works for one person may not work for another. Nevertheless, this works for more care partners than not, and so it is definitely worth a try, or even a couple of tries before you give up.

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 foreducational purposes only. It should never be used instead of a physician's advice.

Capgras Syndrome, Part 2 of 3

In last week’s blog, Tom talked about Donna’s Capgras syndrome. “Donna often thinks I’m ‘that other man’ and keeps asking where Tom went. Leaving and coming back sometimes works, especially if I change my shirt before I return. Taking her out for a treat works even better. She always knows who I am when she wakes up in the morning, but she’ll ask where I’ve been.” If you haven’t read last week’s blog, read it now, and then come back to learn what Tom can do to deal with Donna’s Capgras.

Do not try to re-orient. If Tom tries to tell Donna that he really is “Tom,” it will only lead to frustration and anger—for both of them. A PlwD* is unable to change their mind, once it has been made up.

Instead, Tom must provide Donna's neural pathways between her visual and mental templates of Tom  a chance to relax and re-connect, with the hope that this time the connection will be correct. (See last week's blog for definitions of templates.)

Decrease stress. Tom needs to do a survey of their surroundings, Donna’s health, his attitude, etc., and do what he can to reduce any stress he finds. Stress and anxiety greatly increases the likelihood and persistence of Capgras.

Accept. Tom must let go of his expectation—and hope—that Donna can be what she used to be. Yes, with LBD, Capgras is usually temporary, but Tom cannot make it go away. Donna will pick up his resistance and experience it negatively, which adds stress. Tom’s goal must always be to:

• avoid negative feelings, which increase BPSD* and
• foster positive feelings, which decrease BPSD.

Validate. Avoid  words and actions that invalidate, belittle, or discourage. Respond more to the feelings than the words. Instead of saying, “I’m Tom,” Tom can tell Donna, “Tom will be right back,” or even “Tom asked me to help you out.” This validates her view that "Tom" isn’t there now. Seeing an impostor can be scary. “I’ll keep you safe” offers support.

Use time. The PlwD operates in the present and so what happened even a few moments ago may not matter. Tom can leave the room and return a few minutes later. This may be enough to allow Donna’s neural pathways to relax and give them another chance to connect properly.

Change the environment. If Tom also changes his shirt, this changes Donna’s visual environment and her neural pathways may now connect properly. When Tom takes Donna out of the house entirely, as when they go for a ride, this even greater change has an even better chance of working.

Distract and redirect: Going for a ride also distracts Donna and gets her mind on the ride. If Tom suggests getting ice cream, that redirects her mind to the treat. With less attention on her perceptions of who Tom is, her neural pathways will often automatically connect properly.

Use an auditory connection. With Capgras, Donna must see Tom to misidentify him. Tom can call her on the telephone and connect that way. Or Tom can leave the room and talk to Donna, being careful to stand where she can’t see him. Or, from out of Donna’s sight, Tom can open and close an outer door, and announce that he is home, then enter into her sight. This auditory “preparation” may be enough to cause a good connection of Donna’s neural pathways.

Be an Improv player. (See 6/10/16 and 6/19/16 blogs) If Tom sees himself as an Improv player in a skit where Donna has set the scene, it is sometimes easier to let go of his expectations. Then he can play along, moving the action forward using the above techniques.

Next week's blog will be about dealing with Capgras in a care facility and using medication with Capgras.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Capgras Syndrome, Part 1 of 3

Heard at a support group:

Tom: Donna often thinks I’m “that other man” and keeps asking where Tom went. I’ve tried leaving and coming back. That works better if I change my shirt before I return. Taking her for a ride works, especially if we get a treat. She always knows who I am when she wakes up in the morning, but she’ll ask where I’ve been.

Elmer: Alice keeps wanting to “go home.” I tell her we ARE home, but she can’t seem to accept this. She gets her purse and stands at the door, telling me to “take me home.” Sometimes, I can take her for a ride and “return home” and it works. At other times, she says, “Why did you bring me here, Elmer? This isn’t home.” But she always knows she’s home in the mornings when she wakes up.

Tom and Elmer are both talking about Capgrass Syndrome. Usually this is where the PlwD* believes that someone close to them is a look-alike imposter, as with Donna. It can also be a misidentified place or thing, as with Alice. (In this blog, we are going to talk only about misidentified people, just to keep it simpler, but everything applies to things and places as well.)

What causes people to experience this phenomenon of mistaken identity?

We identify people by comparing them to templates or patterns that we develop in our brains. There are visual templates for what a person looks like, audio templates for what they sound like, and other mental templates for less easy to explain characteristics like emotional connections, beliefs, preferences, behaviors and so on.

As a young woman, I once walked up to a strange man in a parking lot and asked, “Have you seen my husband?” Before I could say more, the man laughed at me and asked, “Who do you think this is?” I had viewed my husband of ten years as a stranger because a barber had removed his beard. He no longer fit my physical template of him, but as soon as he spoke, I blushed. With the additional information, I made the adjustment from “stranger” to “husband.”

But I didn’t have dementia. When a person’s reasoning ability has degenerated enough for Capgras to happen, their brain doesn’t have the elasticity to expand and use new information. It’s like trying to manipulate dried clay. The PlwD may be able to see that the “new” person coming through the door is you, but they will still believe that the “old” person was a look-alike imposter.

My experience with my husband was external. HE had changed, so that he no longer matched my physical template for him. Neither my neural pathways nor my internal templates for him had changed. With Capgras, the change is internal. Donna’s neural pathways between her templates are damaged. Capgras is a neurological dysfunction, like Active Dreams or hallucinations. Donna sees a person who fits her physical template for “Tom.” But if the neural pathways between her visual and mental templates for Tom are broken, Donna will not recognize him as “Tom” but as a look-alike imposter.

Capgras usually occurs only in relation to what a person sees. If Tom talks to Donna on the phone, or even just out of sight, she will recognize him as “Tom.” The connection between her audio template and her mental templates are still functional. Likewise, when she wakes up in the morning, Donna is able to perceive the person lying beside her in bed as “Tom” because pathways between her tactile and mental templates are also functioning.

Ruby: Jason was diagnosed recently with LBD*. We have been married for two years, but now he doesn’t recognize me at all. He asks me when Ruby is coming back, but when I tell him I’m here, he shakes his head. “You are a nice woman and all, but I don’t know who you are,” he tells me. I asked him to help me identify people in a family photo. He named everyone but me. He pointed to me in the photo and said, “I don’t know who that woman is. I wonder why she is in the picture.”

The situation with Jason is different. With Capgras, the physical template is still accessible. The PlwD sees someone who looks familiar even when they don’t recognize that person otherwise. Because Jason’s memory of Ruby appears to be totally erased, he probably has Alzheimer’s in addition to his diagnosed LBD. Alzheimer’s destroys the pathways between a person’s short term memory and their long term memory. Since his “Ruby” memories are much shorter term than his “other family members” memories, the Ruby pathways are less engrained and more easily erased. Unlike Capgras, these pathways do not come and go. They are usually permanently gone.

Why does Donna sometimes recognize Tom and at other times not? With LBD, Capgras tends to fluctuate just as other symptoms do. Like a light switch with damaged wires that connect only part of the time, the pathways function properly some of the time—and sometimes, they don’t. Like other LBD symptoms, the likelihood and severity of Capgras increases with stress and time. Then again, it may leave entirely and be replaced with another symptom.

So what can you do about it? The main thing is to accept it and flow with it. The next two blogs will be about some specific ways to deal Capgras and to help a loved one become better oriented if possible, or to be comfortable and well cared for anyway even if the Capgras persists.

Cornwall G (2014) Questioning Capgras. The Phantom Self, April 30, 2014. http://phantomself.org/questioning-capgras-2/#more-938

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Is it Dementia. Part 2: Delerium

Delirium is a word we’ve started hearing in the last few years. “It’s delirium, not dementia.”

Well, what does THAT mean? Delirium is a group of symptoms that can include almost any BPSD* as well as mental confusion and autonomic dysfunction—in other words, most LBD* symptoms. The two major differences between it and dementia are that

• It usually starts and builds quickly and
• It is almost always reversible.

Who is most likely to experience delirium? The people most at risk are those who already have dementia, any debilitating illness—and the elderly in general. Any elderly or infirm person recovering from major surgery will often experience a few hours to several months of delirium.

The more of these precursors you have, the more at risk you are—and especially with post-surgery delirium, the longer the symptoms may last. Therefore, an elderly person with dementia is more likely to experience delirium after surgery than someone who is elderly but does not have dementia. Further, if the person already has LBD, or is at risk for LBD, the delirium may turn into true dementia and become permanent.

What besides surgery can trigger delirium? The most common culprits are drugs, usually antipsychotics or anticholinergics. (See the 2013 July and August blogs about drugs and LBD.) Other triggers include dehydration, alcohol and stress.

What can you do to prevent delirium?

• Maintain hydration.
• Use non-drug methods for behavior management whenever possible.
• Work closely with the doctor so that any drugs are started out very low and stopped at the first sign of abnormal behavior or increased symptoms.
• Start new drugs in very small doses, monitor carefully and stop with the sudden advent of dementia-like symptoms.
• Review drugs with doctor regularly. Check for new drug sensitivities that can develop as the dementia progresses, or for drugs no longer needed.
• Monitor alcohol use very carefully. The amount tolerated will depend on the person, but seldom more than a very small amount per day.
• Chose non-surgery solutions whenever possible. Even milder, non-inhaled anesthetics can lead to some delirium. 

What can you do to stop the delirium once it is present?

• Look for an underlying cause, the trigger. Has a new drug been prescribed? Has the person become sensitive to a previously “safe” drug? Is the person getting enough fluids? Are they stressed more than usual?
• Correct the underlying cause, and usually the delirium will go away. It may not if the person is very frail, or has severe dementia. It can also sometimes improve but the dementia symptoms will be worse than they were before the delirium episode.

Reference: Knott L. (2015) Delirium. Patient, Professional Reference.
http://patient.info/doctor/delirium-pro

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Is it Dementia? Part 1: Natural Aging

Our 3 for 2 book special honoring the 2016 World Parkinson's Congress is
good until Nov, 1, 2016. 

Buy Now!

Is It Really Dementia?

“I feel like I have dementia!” This is a caregiver’s lament we hear often. And not only caregivers. We are seniors, living around seniors, and it’s not unusual to hear someone in their 70’s or older complain about their failing memory. Rose told me, “I can’t remember her name, but I will. I’ll wake up in the morning and tell Jack.” Jack nodded. “Yeah, she wakes me up to tell me!”

What we seniors are really concerned about is MCI*, not dementia. We know we don’t have “dementia.” We know it isn’t that severe. But we do get concerned that maybe, just maybe, we are headed that way. That what we are experiencing has passed from normal aging into MCI, the stage between normal aging and dementia. MCI can be defined as a decline in cognitive function greater than expected by normal aging but not great enough to significantly impact daily functioning.” It can involve problems with memory, language, thinking and judgment that are greater than normal age-related changes.

So when does it stop being “normal aging” and become MCI? Just like there’s no clear line between MCI and dementia, there really isn’t one between normal aging and MCI. It’s all on the same scale with normal aging at one end, MCI in the middle and dementia at the other end. But let’s give it a try: With normal aging:

• Rose’s inability to remember a name, but remembering it later is a prime example. Forgetting about the person entirely would be sliding into MCI.
• Thinking is slower than it once was. It will likely take longer to make up your grocery list, or make plans or decisions. With MCI, thinking becomes even slower. You can still make decisions and plans if the choices are limited and you can take your time.
• You can still learn new things, given the time to do so. With MCI, it usually isn’t worth the effort, if you can do so at all.
• You’ve begun to appreciate how routines and things that stay the same make your life easier. With MCI, these things become so important that without them, you flounder and become anxious.
• Your visuospatial abilities tend to weaken. That is you have to use more care when you walk because you misjudge just where that stone is—or you reach for the table to steady yourself and miss it by an inch or so. MCI might be where you lift a glass of water to your mouth and it goes to your ear.
• You forget more easily.

The above Teepa Snow video talks about the difference between the forgetfulness of normal aging and that of dementia. She says that a person can remember about eight things at a time, but that as we age, that number decreases to about three. When it goes lower, then MCI is showing up.

With normal aging:

• You can go back in time. If you got sidetracked and forgot what you were doing, you can replay recent events and trigger the memory. If you lose something, you can think back to where you last had it and start looking for it there. A person with MCI has begun to live more in the here and now, and is losing the ability to go back in time. The thought or item is likely just gone.
• You may misplace or forget things, but a person with MCI can begin to forget whole events. This is the here and now issue again. The deeper into MCI and dementia a person gets, the less they may be able to remember events in the recent past.
• Your ability to reason doesn’t change. It may take you longer to figure things out, and to make decisions or plans, but you are as rational as you ever were. A person with MCI-LB* may begin to use delusional thinking to make things like a lost purse more understandable to them. They may think they saw someone “steal” a purse they can’t find.
• Your vocabulary doesn’t change. You may not be able to think of a word, but when you do—and you usually will eventually, you know as much as you ever did about what it means and how to use it in a sentence. With MCI, your vocabulary begins to become more basic.

Next week, the blog will be about the differences between dementia and delirium.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
BPSD: behavioral and psychological symptoms of dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Some Helpful Links

Our 3 for 2 book special honoring the 2016 World Parkinson's Congress is
good until Nov, 1, 2016.

Buy Now!

Some Helpful Links

This month is Lewy Body Dementia Awareness month. And so we’ve compiled a list of links to resources that you might want to keep handy. We actually started with several of the links suggested by Lisa Cooke, in her Lewy Warriors blog, and then added a few others. https://lewywarriors.wordpress.com/helpful-links-and-groups/

Finding The Right Lewy Body Dementia Specialist…someone who is familiar enough with LBD* to be able to diagnose it vs a different dementia can sometimes be difficult. Most people get at least 3 other diagnoses before they are diagnosed with LBD. (excerpt from  A Caregiver’s Guide to Lewy Body Dementia.)

Is it LBD or something else? The Lewy Body Composite Score is a test was developed by Dr. James Galvin and his team for doctors to use to determine if a person has Lewy Body Dementia. It takes about 3 minutes. Dr. Galvin is on the LBD Scientific Advisory borad.

The Phases of Lewy Body Disorder  Describes seven stages or phases identified by caregivers for a basic description of progression followed by many with Lewy Body Disorder. Unlike Alzheimer’s, LBD isn’t easily categorized. This attempt by the Caring Spouses online support group is the best we’ve found.

5 Communication Tips for Dementia Caregivers.  PlwLBD* tend to have many communication issues, and these tips can help.

Driving Guidance.
At the Crossroads is a booklet published by auto insurer, The Hartford, about when to quit driving. It ends with a checklist of danger signals.

Dementia and Driving Resource Center. Another thorough review of how to deal with this issue.

Residential Placement:
Choosing a Memory Care Center. Memory Care Checklist: What to Look for, What to Ask. There are actually a lot of these questionnaires on the internet. To look for others, just Google “questionnaires about dementia care.”

Residential Placement Without Guilt: This blog also covers some LBD specific issues that most questionnaires don’t cover.

How long do we have? This Time to Nursing Home Predictor tool was developed based on the decline of hundreds of dementia patients. It helps predict how long a patient will have before nursing home placement and death based on their symptoms and the progression of others with similar symptoms. Always remember that this tool only tells you what the average person will do. Your loved one could last much longer…or not as long. But it does give you a guideline to go by.

A progression scale: The Quick Dementia Rating System (QDRS), with its 10 basic questions are a quick and easy way for doctors, and caregivers as well, to keep track of progression.

Another progression scale: The Fast Scale is used for developing the hospice criteria below. It was developed for Alzheimer’s patients as a way of following their progression with the disease. Many doctors use it for all dementias in order to keep track of progression.

Hospice criteria. This is a printable card that gives the criteria for Hospice as well as a breakdown on the FAST level for dementia. It shows how difficult it is to go onto hospice with only dementia. However, PlwLBD have so many physical problems that they will often qualify via them rather than the dementia.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

FDA Fast Track and LBD Drugs

Our 3 for 2 book special honoring the 2016 World Parkinson's Congress. Good until Nov, 1, 2016.

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FDA Fast Track and LBD Drugs

Axovant is requesting FDA Fast Track status for their experimental drug, RVT-101, for use with DLB.* This drug enhances the release of acetylcholine and has already been tested for use as an add-on treatment with Aricept for AD patients, with positive results. Axovant is presently looking for people diagnosed with DLB to participate in clinical trials. Contact them here if you are interested.

The FDA Fast Track program is a government program designed to facilitate the development, of drugs to treat serious conditions. This program can cut years off the time before a drug is ready for the market. Drugs to treat Alzheimer’s and Parkinson’s have been placed on Fast Track but so far, none to treat LBD.* RVT-101 would be the first.

Even with Fast Track, the time between the discovery of a new drug and its appearance on the market can be long. For example, Biogen’s aducanumab (BIIB037-bib-037) is a special human antibody designed to target amyloid plaques in Alzheimer’s patients. Antibodies are a part of the body’s natural garbage removal process. Researchers hope to prove that this drug safely facilitates the early removal of these plaques. The studies so far are showing this to be so. However, clinical trials have been going on since 2005. Results from Phase 3 trials, which started in 2015 aren’t in yet....i.e, it has been ten years since the first clinical trials and it is still not ready for market.

Unlike BIIB037, which attacks the cause of the problem, RVT-101 attempts to slow down a disease process that has already gotten such a head start that it cannot be stopped. While this has obvious value for those patients presently dealing with LBD, I wish we could see more focus on, and even Fast Track status, for LBD drugs such as Nilotinib (Tasigna—Tah-sig-na).

Like BIIB037, Tasigna works by improving the function of the body’s natural garbage disposal system, thus decreasing the production and spread of Lewy bodies. With intervention coming much earlier in the progression of the disease, there is hope for better results and even the possibility of an eventual cure. Because this is a cancer drug, already approved by the FDA for use with humans, the testing period is shorter. However, don’t expect it to be available for several years. Researchers are planning a double blind clinical trial to test safety and efficacy with Parkinson’s and DLB patients, to begin in 2017. Contact the Michael J Fox Foundation if you are interested in participating.

There are some concerns about Fast Tracking new drugs. Serious side effects may not be discovered before they are being used by the general public. With LBD's already serious drug issues, that could be a concern. And so, it is an ongoing conflict: We'd like to see these drugs that address the initiating problems in use as quickly as possible...but we don't want to see more drug sensitivity problems either. What do you think?

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Driving, Part 1:When to Quit

When is it time for a PlwD* to quit driving? How do I convince my loved one to quit driving? What can I do to keep my loved one from driving? Why is this so difficult? These and more are all questions that care partners ask as dementia takes its toll and they can see that their loved one’s driving isn’t safe anymore, but their loved one still persists.

Chapter 49 of our book, Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia, discusses this issue in depth, calling it possibly “more traumatic than asking someone else to handle financial decisions or even transitioning into assisted living.” Highlights from that chapter include:

Deciding that the time to stop driving has come is a very adult decision. It requires that a person can still see past the present, recognize cause and effect and deal with the emotions aroused by the thought of losing one’s freedom to drive.

Discuss this issue early in the journey, before the dementia has eroded the above skills. Don’t wait for others to be concerned, or even for a dementia diagnosis. If you do this as soon as you know there is even the possibility of dementia in your future, you both can be more objective.

Agree upon some red flags that warn that driving has become unsafe and discuss what you will do when you begin to see them. Set up a routine of reviewing the red flags regularly. It is often easier with couples to review the driving of both couples…this takes the sting out of the exercise and it becomes “one more way we take care of ourselves.”

Red flags: Both the PlwD (or even a person at risk for dementia) and their care partner should answer the following questions:

Does the person:

• Avoid driving with grandchildren in the car?
• Drive fewer miles than s/he used to?
• Avoid driving at night, or in the rain, or in busy traffic, or in other situations that feel less safe?
• Get mad at other drivers easily, and do things like honk the horn, gesture or drive close to them?

Has the person:

• Been the driver in an auto accident in the last three years?
• Received a ticket for a traffic violation like speeding or running a red light in the last three years?

Any “yes” answers mean that driving may have become unsafe. The more yeses, the more unsafe it probably is. It is human nature to be biased towards preserving one's driving rights, and so the care partner's answers should usually carry more weight. This is especially so as the PlwD loses the ability to think clearly, which will increase the bias.

The sad fact is that if you wait until driving has truly become unsafe, the PlwD may not remember the prior discussion about red flags. Stuck in the present, they may see only the immediate rewards of being free to drive, but not be able to comprehend what might happen. “Safe driving” will have little meaning and a decision to quit will seem irrational.

Another sad fact is that families often choose to put off this difficult decision until something happens and someone other than the care partner can be the “bad guy” who insists that the driving must end. Since no one can know if the precipitating event will be a mild fender-bender or a more serious accident, this isn’t a very safe choice.

And so what can you do to help your loved one make this decision in the least painful way? Well, that early discussion and the regular review of red flags really do help. The memory of these remains in the person’s subconscious even when they don’t actively remember. (That’s one difference between LBD* and Alzheimer’s. With LBD, the information does get stored in one’s long term memory. The person just has more and more difficulty retrieving it.) This helps to soften the blow and makes it more their own decision.

For more discussion about helping a PlwD quit driving, see next week’s blog.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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.

Be a Better Storyteller

Our 3 for 2 book special honoring the 2016 World Parkinson's Congress. Good until Nov, 1, 2016.

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***

Be a Better Storyteller

In Eric Barker’s blog, Neuroscience Of Mindfulness: How To Make Your Mind Happy, he talks about how our brain is divided into two parts: The right brain, which collects facts, and the left brain, which interprets these facts. Thus, your right brain sees a person glance at their watch. Your left brain tells you, “She’s bored” or even more likely, “I’m boring her.”

We all do this. But in most cases, we also check our interpretations against facts.“Oh, yes, she has an important appointment and needs not to be late.” If I have dementia, I’m not going to be able to do this. I accept my left brain’s interpretation without question. I live in the moment and can’t apply such information, even if I remember it, to what’s happening right now.

Eric Barker suggests that we become aware of how our brains work…that we understand how creative, and often incorrect, the left brain can be in its interpretation of the facts that the right brain collects. Well, that’s fine for the average person, but it doesn’t work for me if I have dementia. I can’t do that. I’m stuck with what my left brain tells me. So how can you help me avoid this?

First, if I come to a conclusion, flow with it. I’m not going to change. Explaining the facts, arguing or defending isn’t going to work. Accept, agree and deflect or distract. But maybe there are some things you can do to help me avoid some of these conclusions before they happen.

Eric Barker suggests that you help the left brain build better stories. Now, there’s a thought! What can you do to help me build better, more positive stories?

Make me comfortable. As discussed in the March 12, 2016 blog, Emotions, it is human nature to pay more attention to negative messages. They are more intense and get our attention more easily. We need them to motivate us to move away from danger, or often, just from being uncomfortable. Being uncomfortable and danger are on the same plane, only danger is just more intense. Dementia takes away my ability to judge intensiveness, and so I respond similarly to both. The more comfortable you can help me to be the better I will react to my environment, i.e., the more positively I will interpret what my right brain feeds me.

Improve my self-esteem. As my condition worsens, as my ability to think, remember, or do things for myself diminishes, so does my self-esteem. Thus, I’m more likely to think I’m boring, or that I’m not good enough for you to hang around, or that I’m too much trouble, or…. To counteract this, use lots of physical reassurance on a regular basis: hugs, kisses, anything you can do or say to show me that I’m important to you. This won’t work during an event when I’m convinced of something negative…then I’m stuck. Your actions must happen at times when I can accept them at face value, not as an avoidance of my, to me, accurate statements.

Help me to feel useful. The better I feel about my contributions to our daily life, the happier I will be and the fewer negative emotions my left brain will have to build into its stories. Look around. What can I do? It doesn’t matter if I can do it well. Can I help with the dishes? Fold the laundry? Sweep the floor. I don’t need to hear that it is good for me to be keeping busy. I need to hear that I’m helping you, making your job easier. OK, so maybe I’m not. But that’s what I need to hear. So, if you want me to feel useful, tell me that!

Help me to feel creative. Creativity is very uplifting, and adds all kinds of positive feelings. What did I do before dementia? Was I a photographer? An artist? A musician? A seamstress? A carpenter? A cook? I don’t me professionally, but how did I express my creativity? What was important to me? Family? Work? Hobbies like dancing, or golf or knitting? How can you help me to continue to do some form of this same thing? Even looking at photo albums can be helpful if that is all I can still do. Ask questions about the photos, but don’t push for names, etc. or anything that makes me agitated. Music can be very helpful. So can art work like finger painting. Use your own creativity to come up with ideas and try them out.

None of these suggestions are likely to keep my left brain from telling negative stories altogether. But they may help enough that I may need less medication…and that’s a real plus!

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Mindful Listening

Our 3 for 2 book special honoring the 2016 World Parkinson's Congress. Good until Nov, 1, 2016.

Buy Now!

***

Mindful Listening

We all know that LBD* slows a person’s thinking. We learn quickly to take our time and wait for an answer. Do you get impatient when your loved one takes so long to process thoughts? Do you ever have trouble accepting that your loved one needs so much time? Do you find yourself wanting to roll your eyes or sigh—and sometimes these might even escape? Or do you just look around or close your eyes and wait, PATIENTLY? Everyone does something like this at least once in a while, so it’s OK to say “yes.” It’s boring to just wait and wait and wait.

Try Mindful Listening. That means that instead of just waiting, which is pretty boring, you put your whole mind into respectful listening, while providing encouragement and support. When you do this you will be so busy doing your part of the job that you may forget to be bored! Here are some things that can get you started:

Put yourself in a good listening position:

• Be close enough so you can hear easily. A PlwD* and especially a PlwLBD*, will often have a very low voice. You can ask them to speak up if necessary, but make it as easy for them as possible.

• Try to be face to face. You may have to squat or sit to do this. No one feels comfortable talking to someone who is looming over them. And it will help the PlwD* to be able to see your face so they can read your lips, and even more, your facial expressions.

• Situate yourself a little to the person’s dominant side. We all feel safer that way and for the PlwLBD, this is even stronger because they feel more vulnerable to start with.

• Offer to hold their hand. Start with a handshake if you aren’t the primary care partner. Touch is an important part of communication. You may find that you want to hold the hand with both of yours, and that is fine.

Use good body language. Non-verbal cues are often more important than what you say.

• Smile and be friendly, and be sure you mean it. Don’t fake it.

• Keep your eyes on the person’s face. Don’t go looking around, or down, or close your eyes. The eyes are communicators too. Use yours to show you are interested and really want to hear what the PlwD wants to say.

When a person is having difficulty finding the right word:

• Avoid trying to help. Think of a time when someone did that for you and it was the wrong word.You had to stop searching long enough to reject the one they suggested. For the PlwLBD, it is even more annoying. It stops their thought process and gets them off on a different track. They will probably have to start over—if they can get back to where they were.

• Encourage the person to continue processing without interruption. Squeeze their hand, smile, nod, keep looking at them expectantly and wait. Put your whole effort into doing this supportively.

• Listen for feelings more than words. Sometimes the words just won’t be correct. Don’t try to correct the words but respond to the feelings. You will usually be right.

With this kind of attention and encouragement, you will find that the person is able to talk much more clearly, with fewer problems. AND you will be surprised that how more interesting it will be for you than when you were just waiting. Listening is an art. Practice it. You may find yourself practicing it with others with good success too! It isn’t only the PlwD who wants to be listened to with respect and interest!

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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 foreducational purposes only. It should never be used instead of a physician's advice.

Honoring the 2016 World Parkinson's Congress

The 4th World Parkinson's Congress (WPC) is in Portland Oregon, from September 20-23, 2016 and we are there! If you see us, do stop and say “Hi.” We are also excited that all three of our books will be on display in their Book Nook.

Parkinson’s disease (PD) and Lewy Body Dementia (LBD) are very closely related. Well over half of those with PD go on to develop LBD, and the percentage increases the longer a person lives with PD. For a long time, PD was considered a “movement disorder” but now there’s a lot of interest in its “non-movement symptoms,” symptoms that are also symptoms of LBD, like hallucinations, active dreams, low blood pressure on rising, drug sensitivity and of course, cognitive problems.

In honor of the WPC, we are offering you this great 3 for 2 special:

Purchase both of our published, award-winning, books and get a FREE manual for staff. 

Just click "Buy Now" below! 

Offer good til November 1, 2016 or until our limited supply of books runs out!

Award Winners:

“A Caregivers Guide to Lewy Body Dementia”

and

“Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia”

are paired with our staff manual,

“Riding a Roller Coaster with Lewy Body Dementia”

in this special TRIO Pack WPC offer.

Bought separately these books cost $62.50
The Trio Pack regulrly sells for $49.95
This month only, get it for $42.90

Buy Now!

For more about 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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Planning a Respite Trip

Last week’s blog was about respite care in general. This week’s blog is about travel, and especially about using respite while the caregiver travels. Just for fun, I’ve presented it as from someone with dementia, but with the insights we’ve learned over the years…insights that a person with dementia probably wouldn’t be able to tell you.

One of travel’s main attractions is experiencing something different—which, as someone with dementia, is what I fear most. How can I maintain control of my fading life if I don’t have my familiar moorings? At home, my favorite chair, the familiar floor plan, and normal routines give me structure and feelings of control. Travel takes these away.

I used to love to travel. Early on, we traveled and I could still enjoy it. The 6/27/14 blog, Summer Travel, offers some good guidelines that made travel easier for me…and my care partner.

But now, change has become very difficult for me. This makes travel downright scary. And when I get scared, I get irritable, paranoid, and irrationally angry. My symptoms increase, with more hallucinations, more active dreams, and less mobility. With little or no impulse control, I can’t control any of this. I probably can’t even tell you that I’m frightened. I can only express my feelings with actions. The more distressed I am by change, the less I’ll be able to enjoy travel. And if I don’t enjoy it, I guarantee that you won’t either!

But caregivers have rights and needs too. If you want to attend a family event, do you give it up and stay home to protect me? Do you take me along and spend the whole time dealing with my problems? Is there any place in between, where we can both get our needs met? Well, sort of.

Let me warn you, I want my same caregiver (you) always. And with little ability to empathize, I can’t understand that you need time away. No matter how you do it, I’m not going to be happy, so accept this and move on. However, with a caring home caregiver or respite center, I won’t be as devastated as I tell you I’ll be. The goal, as always, is to find a happy medium between my comfort and your needs.

Plan ahead. Having you take time away is going to be much easier for me to deal with if we have developed routines that include respite (see last week’s blog). However most caregivers don’t see a need to do this until the need for respite, for whatever reason, is urgent. Even so, do try to plan far enough ahead for some gradual visits while you are still around to cut down my feeling that I’m being left with strangers. We’ll both be a lot happier that way.

Consider pharmaceutical help. I will probably tolerate this change in my routine better if I have the help of a short-term, low-dose regimen of an antipsychotic like Seroquel, (if I can tolerate it) starting about a week before you leave and ending no more than a week after you return. While the Whitworths are not advocates of drugs when there are other options, they know that there is a time and place for them. This is one. No matter how you try, this will be a time of high stress for me and I need that extra help.

Keep it a secret. Many care partners, spouses, especially, hate to keep secrets. “We never have,” they say. But the rules have changed. My comfort is much more important to me now than your need to be up front. As soon as you tell me about firm plans to leave me, I’ll start stressing and I’ll continue to stress until you leave…if you do. I may get so bad you won’t feel you can. Wait until several days into the Seroquel regimen and then tell me—or even wait until right before you leave. I will be able to handle it better then and won’t have so long to stress.

Set the scene. This is as close as you should come to telling me “the truth,” until right before you leave. About a month before you go, you can mention your plans. Don’t give me any actual dates and keep it all low key… “just something I’m thinking about for the future.” I probably won’t remember, but it will be in my subconscious and that will keep it from being such a surprise. If you get specific, I’m going to stress for that whole month!

Don’t abandon me. Set up a way for me to have contact with you. This will decrease my feelings of being abandoned. Maybe you can call every day at the same time. Or you can leave a cell phone with me. If you do, however, expect continual calls. I need a lot of reassurance!

Add familiarity. If I’m going to a respite center, take as much of “home” with me as you can. Photos of family, a familiar pillow or bedspread, etc. The more of my home environment I have the happier I’ll be.

Expect me to adjust once you are gone. Like a two-year-old, once it is a done deal, I will probably stop fighting and will begin to adjust. I still won’t like it, but I won’t be so stressed.

Arrange for dealing with minor emergencies. Ask someone we both know and trust to be available for minor emergencies and make sure that person knows how to contact you for things that they can’t handle.

Finally, LET GO. Once you’ve done everything you can do, let go of your caregiving job and enjoy your vacation!

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Making Respite Happen

All caregivers know they need to take care of themselves. They know that includes respite. But when things are going well, they say, "I don’t need it." And then, when they aren’t, it's, "I don’t have the time or energy to add respite into an already too full schedule."

We recommend that you give serious consideration to starting a short respite routine well before it is needed, not because YOU need it but because your loved one does. They need to have this routine developed:

• While they are still able to adjust. As the disorder progresses, your loved one will find it much harder to adapt and will resist any change as too scary in their changing world.

• While they can still socialize with others. As communication skills decrease socializing becomes more difficult and isn’t worth the effort, especially with stranger.

• Before they become too dependent on you. As their world becomes more confusing, they perceive you as their stability and they will become very dependent and will have difficulty accepting even a temporary caregiver, especially one they don't know.

Bob started taking Maude to adult day care once a week for two hours while she was still able to enjoy the outing. It became a part of her schedule and she looked forward to it with pleasure. Bob even noticed that the added socialization made her more aware. As Maude’s condition degenerated, Bob added an extra day per week and arranged for them to give her a shower. “It is well worth the extra $20,” he told his support group. “And I really needed that extra time. Most of my free time has been taken up just running errands and such for Maude. I haven’t been able to just sit and read a book for months!” He added, “Maude knows the staff there and gets along well enough with them that I’m planning an overnight visit to our son next month.”

Maude has a routine she not only accepts but looks forward to with people she feels comfortable with. That makes extending the visits, even to overnight, much less difficult for Bob to do than if he were starting from scratch.

The other reason for starting respite well before it is actually needed is that it will be much easier for you to do when you aren’t already stressed. Then, with it is already in place, expanding it for your increased needs won’t be nearly as stressful—for either of you—as arranging for a first time respite event when there is a real need for it. Then you both will likely be so stressed that no one will deal well with this change in routine. You probably won’t feel you really need respite until your loved one’s condition worsens. Just making the step to leave your loved one with someone else is never easy. When you already have a routine of short respite periods in play, that step, at least, will be out of the way.

Trying to figure out how you are going to do respite will also be less stressful if you do it before it is really needed. Remember, this needs to be a respite period that you can count on. One where you make an appointment to get your hair done, or go to lunch with a friend, and know you can keep it.

One of the simplest is to find a facility that offers Adult Day Care. One facility calls their program a “Day Club” which takes stigma away from the name. In other cases, loved ones have talked about going to “work.” Staff often encourages this by giving them jobs that help them to feel needed. Many facilities offer transportation along with the day care.

Another option is to ask friends or family to come sit with your loved one. If you do this, work to make it a regular event, not just a happy visit. The disadvantage of this is friends or family may not be able to extend their care as your needs change and your search for respite services will then have to staranew.

A third option is to arrange for a paid caregiver to come regularly. Find out ahead of time if they can do overnight stays if and when you need it. Individual caregivers often charge less than those hired though an agency. However, agencies add the security of having vetted their employees. This can definitely help to relieve worry.

Then, of course, you also have to figure out what to do with your respite time. The main goal of respite is to refresh the caregiver. You may have needed errands, but do make an effort to keep time free for something that takes you away from caregiving for a while…a lunch out with friends, going for a manicure, sitting and reading that book you’ve been wanting to read, or even taking a nap.

Once you have a routine developed, step it up and do as Bob is planning to do and do an overnight. The first time, this can be leaving your loved one in a respite center and staying home, or going somewhere close by while your loved one stays home with an overnight caregiver. This “dry run”, allows you to feel more secure about leaving…you can return if you are really needed... while it builds on the routine. Adding this less stressful overnight will make taking a trip to your grandchild’s graduation much easier to do later on.

Next week’s blog will be on how to make taking a trip less stressful.

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 foreducational purposes only. It should never be used instead of a physician's advice.

Living Life

For us, summer is the time when we are refugees from our Arizona home, driven away by hotter temperatures than we want to endure. We live 24/7 in our RV, finding space to do most of the things we do at home, but not nearly as comfortably. All of our books have been written at least partially, while we lived in our RV. However, we don’t spend much of our time or efforts thinking about what we don’t have, for summer is also full of treats for us and those are what we try to focus on.

Summer is when we see more of our kids, grandkids and great-grandkids. What with a reunion and smaller family get-togethers, meeting up with old friends, spending time on the family farm and getting to meet my newest great grand baby, 3 month old Shilo (a real beauty already!) we've been more focused on family and friends this summer.

We took a weekend to visit my brother's family...and to drop in on my nephew Tom's dementia support group. His wife has LBD, and they've been dealing with it for several years. He's a very quiet man, but he's learned to use his group. He shared his experiences and ideas and nodded in camaraderie with others as they shared theirs. "This group has been such a great help to me," he told us, and the group. "It keeps me from feeling so alone." We hear that a lot, but it was especially wonderful hearing it from family, and from this usually so reticent man. One of the topics under discussion was respite time. We were impressed at how they all seemed to understand how important that is and how each of them had developed ways to have some.

Visiting support groups is usually a very important part of our lives...for a different reason than Tom's. We are not living with LBD; but we are listeners. It is true that we always try to share information when we visit a group, but we also listen. We listen, and hear about issues and joys, concerns and successes, questions and answers about what has worked and what hasn't. It is where we get most of our ideas and information for our blogs and books, and to pass on to other groups. But we are really in vacation mode this year and Tom's is the only group we've visited.

Summer is mostly camping time for us. It’s when we live in RV parks and visit with other campers. Most of them have connections with people with PD or dementia, but we don’t talk about it a lot. After all, for most of these people, this is also vacation time. Unlike us, they aren’t living in their RV 24/7. They are more into having fun than into learning about illness. And so it becomes vacation time for us too. We visit, play cards and pick blackberries. I made blackberry jam, blackberry shortcake, blackberries and cereal, blackberries and… Ugh, I’m sick of blackberries.

Anyone who's read our On the Road with the Whitworths book knows how frugal we both are. The local casino's Senior Monday Buffet ($3.95 each!) is just up our alley. Then we get to play the slots with the $10 they give us, hoping that we’ll get hooked and play a lot more. Last time, I came home with $23. Jim left his 3 cents on the machine. In the same frugal spirit, we toured a park-wide garage sale and came home with a couple of finds. There were other things I liked but living in an RV makes us pretty choosy…no room for things we can’t use right now. And we did some sightseeing although we’ve already toured this area and so it was more something to do than exploration. Again, living in a small space makes getting out (even in the smaller space of the car!) pretty attractive.

 And so this blog is not really about LBD. But it is about living life and making the most of it. You have to do that no matter what else is going on. Like Tom's group members,find some time to live your own life and find the positives even with LBD causing its usual havoc.

For a fun read about the first year we RVed and taught about LBD,:
On the Road with the Whitworths.

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 foreducational purposes only. It should never be used instead of a physician's advice.

Dealing with Agitation

My husband, Jerry, had to have surgery…and the surgeon said he’d need more than a mild anesthesia. I was naturally worried, but the surgery wasn’t optional; Jerry was in pain. Naturally, I was overjoyed when he awoke after the surgery acting happy and “normal.” But then he started to be very agitated and angry…and he couldn’t urinate. I called the doctor who had me bring him in. They inserted a catheter and now Jerry is really mad at me. He doesn’t remember the surgery, or not being able to urinate. He thinks I’m doing this to him and keeps trying to pull the catheter out. What do I do? Was it the stronger anesthesia after all? Will this be permanent? 

Marie, LBD support group member

Was it the anesthesia? There are no sure answers here, but it sounds like he weathered that well. But then he started having physical problems. With only a limited amount of reserves, some of Jerry’s internal army of protectors were pulled off the task of controlling the Lewy bodies and put to work dealing with emergency issues. Even after the doctor fixed that with a catheter, he continued to be agitated because of this foreign, likely uncomfortable and  definitely unwanted thing in his body.

Will this be what Jerry and Marie can expect from now on? Again, that’s hard to tell, but hopefully, when his body begins to function better, his mind will too, especially once the catheter is removed. The goal is always to make a person living with dementia (PlwD) as comfortable as possible. The more comfort, the less agitation and fewer dementia-related symptoms in general.

What can Marie do?

• Avoid arguing, explaining, defending or denying. That’s the cardinal rule when dealing with people who can’t reason. What Jerry believes is what he believes and Marie can’t change that. Instead, she can accept, speak to the feelings and apologize. When Jerry accuses Marie, she might say, “Oh, honey, I am so sorry. That must be very uncomfortable.”

• Use touch. Marie can give Jerry a hug or a kiss--or both, hold his hand, or give him a massage. All of these have a very calming effect. Touch causes the brain to release feel-good hormones like serotonin, and both Jerry and Marie will feel better.

• Use temporary help from drugs. Marie can contact Jerry’s doctor and ask about a temporary regimen of a mild antipsychotic such as pimavanersin (Nuplazid), clozapine (Clozaril) or quetiapine (Seroquel). The first of these is fairly new but has had excellent reviews. The second is a mild antipsychotic often tolerated by PlwD, but is at risk for causing liver damage in a small number of people, thus requiring regular blood tests. While the third has been the drug of choice for dealing with agitated dementia patients for many neurologists for years, a few people with LBD don't tolerate it well and so it must be monitored carefully. We don’t advocate for drugs as a general rule, but there are times when they are appropriate, such as helping a PlwD over episodes like this.

• Make someone else the “bad guy.” Marie can ask Jerry’s doctor to become the “bad guy” and tell Jerry he has to keep the catheter in. Jerry may listen to the doctor when he won’t to Marie. He’d probably respond better to a male than a female, and he’d probably respond better to someone he knows, like his primary care physician than his surgeon, whom he may not recognize. A male family member, a grown son, for instance, can sometimes be helpful here. Or even a daughter who has been able to reach her father when no one else can. Call in the reserves!

• Take care of the caregiver. Asking for help is as much a part of good caregiving as knowing how to calm a loved one. If Jerry won’t quit trying to pull out the catheter or becomes so belligerent that he becomes dangerous, Marie needs to call 911. We want a primary care physician who knows what he/she doesn't know, and knows when to refer. It is the same with caregiving. As a good caregiver, Marie needs to be able to recognize when she is no longer able to keep Jerry, or herself, safe and call for help. Admitting that you need help can sometimes be very painful, but it can't be emphasized enough how important it is. Make it sooner rather than later!

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 foreducational purposes only. It should never be used instead of a physician's advice.

Eleven Years Today!

Today is our 11th Anniversary. Although neither of us, nor any of our loved ones presently have LBD, it has always played a big part in our relationship, right from the first. Jim is a quiet man, unless he’s talking about a subject he’s passionate about. I got him talking by asking him about his license plate: LBDA.ORG. He told me about how his wife had died with LBD. He told me about the problems trials he’d had getting the right care for her. And he proudly told me about how he and four other caregivers had started the Lewy Body Dementia Association. After we married, I told him that although I’d support him in his mission, it wasn’t MY mission. But then, I made the mistake of commenting about how the LBDA was not doing well with volunteers—and became their volunteer coordinator. Jim’s mission became mine, and has been ever since.

In our eleven years of marriage, we’ve traveled a lot. From the first, we lived in Arizona and traveled every year to Washington state. At first, Jim also traveled to Georgia for LBDA board meetings. When, in 2009, he completed his six year term on the board, we were already going in a different, but compatible direction, teaching about LBD as we traveled, and at home. Over the years, we’ve attended many conferences and participated in several. We’ve also attended uncountable caregiver and Parkinson’s support groups. This year, we plan to attend the World Parkinson’s Congress in Portland Oregon. We find these events extremely important because that’s what keeps us in contact with people who are living with LBD and Parkinson’s. Your experiences are what drive our work. We take what we hear you talking about, do some research and present the results with our own slant.

Along the way, we’ve co-authored three books. The first one, Riding a Roller Coaster with Lewy Body Dementia was initially directed towards staff. When we tried to get it published commercially, editors were interested but told us, “Staff don’t buy these books. Family caregivers do.” The editors were right, and our next book was directed towards family caregivers. We are honored to say that A Caregiver’s Guide to Lewy Body Dementia is now a staple in every LBD caregiver’s library. But we had more to say and so last year, we published Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia. It focuses on those symptoms where Parkinson’s transitions into Lewy body dementia and on ways to deal with these with fewer drugs. We also re-published the Roller Coaster book because many family caregivers want something to give to the people who care for their loved ones. You can now buy the set of three, the “Trio” on our website at a discounted price.

I was a writer before Jim and I ever met. My first book, Betsy, is an historical romance novel based in Missouri in 1850. The heroine is my grandfather’s step-mother, who was only four years older than him. If I ever stop writing about LBD long enough, I have a sequel half-written that will actually be about my grandparents.

Then, in 2013, I wrote On the Road with the Whitworths, a memoir of our first year of traveling in an RV and the start of our teaching about LBD. Unlike the books about LBD, this book is fun to read. Especially if you are dealing with this baffling disorder, reading about it can be difficult. We recommend that you only read a few pages of our LBD books at a time and digest that before you go on. Even take a break and read something lighter. Reading this book provides a good break. It keeps everything light and is designed to make you laugh.

Since 2011, I’ve been writing this weekly blog. It has actually provided a lot of the content for our second LBD book. We now have another LBD book in the works and hope to have it published by this time next year.

For information about Lewy body disorders, read our books:

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 foreducational purposes only. It should never be used instead of a physician's advice.

Transitioning Jobs

You’ve made the decision to place your loved one in residential care. You know it’s time. You did the research and you know you’ve chosen the best place you can afford. You made the move, painful as it was, and now, your loved one and you have different homes. For many of you this will be the first time in decades that this is so. Others, such as adult children, may have committed to caring for a loved one to the end. For most caregivers, no matter what the relationship, the transition from full care to sharing the load with residential staff can be traumatic.

You may feel loss, as though you had lost a job…a job you may not have wanted in the first place, but still, one that has taken most of your attention, energy and time for a long time. And as you go from being overburdened with too many tasks to surprisingly long periods of free time, you may feel lost and not know what to do with it all. You may go from feeling needed to feeling left out of the loop. You may feel guilty, as though you reneged on a job you committed to do. All of this is very normal.

You may know, intellectually that your job isn’t done. Last week’s blog was all how your loved one still needs you to provide emotional and social care, coordination of services, and general overseeing. However, it may take a while to “get” this emotionally. As with any loss, you may go through phases of feeling guilt, anger and depression before you get to a place of acceptance where you can pick up and move on, in this new situation. Give yourself permission to feel these. Trying to stifle them simply makes them last longer.

Guilt can often make a caregiver super critical of the way the staff cares for their loved one. The underlying feeling (often, unrecognized, of course) is that if I can’t do anything personally, I can at least try to control how others are doing it. This is seldom helpful. While it is true that no one is going to do the physical care like you did, most care staff do a pretty good job. Naturally, if there really is a problem, you should to address it. But pick your battles! Don’t criticize unless there’s a real need. They may not do it just your way, but if it works, accept it. Instead, look for things to like, and compliment, compliment, compliment. It really will improve your loved one’s care!

Then there’s the depression…As you caregiving job changes, your whole feeling about yourself may change. You have been so invested in caregiving for so long that that’s how you defined yourself. Now, you ask, “Who am I?” Yes, you are still a caregiver, but even that has changed so much you really don’t know who you are anymore. Now is the time to think back to what made you happy “bc”…before caregiver. One spouse had always been good at “fixing things.” His daughter got him involved with Habitat for Humanity. Now the family has to make an appointment to see him, he is so involved!

Donna commented, “I just put my husband in memory care and now, I’m lost. I don’t know what to do, or even what I should be doing. I don’t know what I can do for him. I don’t know what to do with all the time I seem to have now.” We talked about how her husband still needs her, about the supportive care she still needed to provide. But then, I added, “Now is the time to start some of that self-care you haven’t had time or energy for in the past.” It turned out Donna liked to travel but of course, hadn’t been able to do for years. She has children in the area who are willing to stand in for her in the memory care center so that she can be gone for several weeks. She’s getting excited about planning her trip, “I know I’ll miss my husband, but the kids are there for him and they will keep me in the loop.”

You may not want to do something as involved as Habitat for Humanity or as drastic as a long trip, but this is still the time to do something just for you. Do you have hobby you miss? Friends you haven’t connected with for a long time, or only minimally? A book you’d like to read, if only you could find an uninterrupted hour? Or even a full night’s sleep? None of this is selfish…it will improve your physical and emotional health and make you a better caregiver. Go for it!

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.