The Whitworths of Arizona, bringing science to you in everyday language.

Friday, December 9, 2016

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 d├ęcor 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.

Friday, November 25, 2016

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.

Friday, November 18, 2016

Capgras Syndrome, Part 3 of 3

Capgras Syndrome is a delusional belief that someone close is a look-alike impostor. Although literature says that this occurs in only about 15% of PlwLBD*, it is a common topic in the caregiver support groups that we visit. The last two blogs have been about Tom’s experiences at home with his wife, Donna. Today’s is about Judy and her husband Ron, who is in an assisted living facility. We've also added some information on medication.

Judy: When Ron has attacks of Capgras, he thinks I’m an impostor who is trying to poison him. He becomes very aggressive and I just can’t handle him. I had to put him in assisted living. I hated to do it, but it just wasn’t safe for us at home.

Caregivers have experienced broken bones and other injuries in situations like Judy’s. People experiencing Capgras may also become resistant and unwilling to cooperate with their impostor, making it difficult to provide needed care.

Residential care. Like Judy, no care partner wants to consider residential care, but the time may come when it is the best answer. When a caregiver’s health or safety is threatened, so is the health and safety of the PlwD*.

Providing social interaction. This is important for both Ron and Judy, but becomes even more important—and more difficult—after Ron enters a care facility. For best results, Judy should visit during the times when Ron is most aware and relaxed—and least likely to be experiencing Capgras. Naturally, she can still use many of the techniques discussed last week, such as talking before entering the room, or visiting via phone calls.

If Capgras persists when Judy visits in person, she can help Ron to feel safer by visiting with family members or friends whom Ron still recognizes and trusts. She may also find that she can visit as a concerned stranger. Of course, if he becomes agitated, she should leave. And remember, even in a residential facility,

Medication

No drug can cure Capgras, few can improve it and some actually make it worse. Non-drug methods should always be tried first, but if the symptoms are severe or persistent, medication may help these methods work better.

Dementia drugs will often decrease BPSD* like hallucinations and delusions. However, there is some evidence that they don’t work well with Capgras. Most PlwLBD take these drugs. Ask the doctor to re-evaluate and see if a lower dose may decrease Capgras episodes.

Parkinson’s drugs tend to increase hallucinations and so they may also increase Capgras episodes. There’s some research that shows that a person with movement issues is less likely to experience Capgras. However, if a person experiences Capgras while taking Parkinson’s drugs, report this to the doctor and ask if the dose can be decreased. (Expect a decrease in mobility, however.)

Anti-anxiety and psychotropic drugs have been used for years to manage BPSD. However they should be used as a last resort because of the many sensitivities and side effects that occur with anyone with LBD*, any other dementia or the elderly. Literature did not show much success in using these drugs with Capgras anyway. If used, they should be used in the smallest doses possible, monitored carefully and stopped at with any unwanted symptoms.

Depression drugs are often helpful in controlling BPSD symptoms with fewer side effects than the above drugs. Depression and Capgras have not found to be connected, but even so, these drugs might be worth a try in small doses.

An article on Capgras Syndrome

* Acronym list:
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 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:
  • 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.

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.

Friday, October 28, 2016

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.








Friday, October 21, 2016

Is it Dementia? Part 1: Natural Aging

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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.