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

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good until Nov, 1, 2016. 

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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.

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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.