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.
Friday, November 25, 2016
Friday, November 11, 2016
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:
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.
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.
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.
Friday, November 4, 2016
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.
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.
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