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

Friday, June 24, 2016

Using Improv with Dementia, Part 3

The previous two blogs have been about using improvisational theater, or improv, as a tool for dealing with irrational statements or behavior. But it can also be used by the person living with dementia (PlwD) as a way to stimulate the mind while being creative and social. As other creative activities do, participation in improv acting increases a person's feelings of accomplishment, self-worth and enjoyment. These pleasant feelings last and improved mood--and thus, behaviors--for hours after the experience is over.

"Improv is all about being in the moment, which for someone with memory loss, is a very safe place to be." says Mary O'Hara, a social worker involved with an improv project for people with early dementia. When a person with dementia feels safe, they are less stressed and their symptoms decrease. This in itself, makes improv a valuable stress management tool. But improv seems to improve mood for an extended period of time as well.

Improv players collaborate to create the action, which unfolds in present time, without a script. It plays out in the here and now, with no memorized lines, and no experience required. Since the story goes wherever the players take it, there is no set story line and no special sequence to follow. This makes it perfect for people whose memory is failing, who live in the present, and who have difficulty following sequential steps to a goal.

Research supports the use of improv. People who participate in cognitively stimulating activities and are socially engaged have a better quality of life and suffer less depression. In fact, social interactions may be as important for maintaining cognitive abilities as exercise, long known to be "more effective than drugs" for dementia care. This is especially important with LBD, where a degeneration of thinking leads to delusions and other BPSD (behavioral and psychological symptoms of dementia) and where LBD's drug sensitivity makes using BPSD drugs a concern.

Guidelines for using improv with PlwD are similar to those for any other improv acting:
  1. At least two people participate in an impromptu skit. One says something and the other responds, and so on. Physical action, such as dancing or pretending to throw a ball, is fine, but so is simply sitting in a wheelchair and talking.
  2. Say yes. Whatever your partner says, you accept it at face value. You never disagree. Be positive--negativity blocks.
  3. Encourage. This is the "Yes, and..." part of improv. Always support your partner by taking what was said--or done--and adding something to it that keeps the conversation going and moves the action on.
  4. Go with the flow. Always just move on, no matter how zany the idea is or how weird the conversation gets. Nothing is scripted and so there are no "wrong" responses.
  5. Accept failure. As dementia encroaches, failure becomes a full-time resident. Failure at things you used to be able to do well, failure at remembering the right word, failure at understanding what's said, and so on. In improv, failure is expected and celebrated with laughter and another attempt, or a twist in the action. You are responding on the fly and don't have time to worry about if it is right or not.
Participants in the eight-week improv project reported feeling more confident and able to cope with their diagnoses, as well as less isolated and depressed. Players commented:
"I don't know what I'm doing, but it's freeing."
"I've learned that I am imaginative, playful and creative...I can be funny."
Care teams can do improv by themselves--it only takes two people. However, it might be more energizing and fulfilling if a group of people with early dementia get together and interact. Talk to local improv groups and see if they would be willing to sponsor such an event. That way, you get knowledgeable people to guide the action.

For an example of PlwD using improv, view "Improv and Alzheimer's: Helping patients remember." 

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

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

Sunday, June 19, 2016

Using Improve with Dementia, Part 2

Last week the blog was about using improv with hallucinations and delusions. This week, it is about other helpful ways we can adapt improve guidelines for use with caregiving. If you didn't read last week's blog go back and do it now...or at least watch the video.

Accept offers and gifts. When an improv actor offers another one an imaginary gift, the second actor takes it and runs with it, adding information and action. Take what your loved one offers, be it a hallucination, memory (real or false) or a comment (pleasing or not) and find some value in it. Show appreciation, talk about feelings, ask for more information.

Develop options. People with dementia respond with knee-jerk actions because their brains don't give them a choice. Caregivers can consider responses and choose the best one. Like improv actors they can go from "I don't like what just happened," to "What can I do with what just happened? How can I make it work for us?" This takes knowing what doesn't work as well as what does. With that, they can reject explaining, defending and arguing as ineffective and choose a more positive action like joining their LO's reality and moving the action away from negative feelings.

Don't force an agenda. Improv actors may start out with an agenda, but they work to make it acceptable to their audience. Caregivers often have an agenda too. Some things that make an agenda more acceptable are small steps and suggestions that are more of an invitation. "Do you need to use the bathroom?" Then, "While we are here, how about a shower?" Take time, and if they don't respond well, pull back and create another invitation. Leaving the room often helps. Then return with a different invitation, "The bathroom's toasty warm. Let's do that shower, OK?"

Commit 100%. Improv actors have to be willing to commit to BEING their character. For that moment, they ARE whoever they portray and they speak as their character would speak. Caregivers must do this too. When you accept a role in their LO's drama, you must play the part with conviction. For example, if the LO accuses you of infidelity, think of how you would feel if it were really true and you really did want to be forgiven. Speak with that conviction. After all, you want to be believed so that the negative feelings will go away.

Touch is powerful. You don't always need words to set a scene. You probably touch your LO a lot, just getting work done. You touch while helping with dressing, bedtime, and bathroom duties, eating, sitting, etc. That's not the same as meaningful touching, like hugging, holding hands or a pat on the back as your pass. These touches show you care, that you really want to be in this relationship.

Accept change. Improv acting requires that an actor can respond to changes quickly and move on. So does dementia caregiving. Dementia is progressive and will continually change your LO. Demanding that things stay the same will only bring stress and frustration. This can be especially difficult in early stages when your LO often looks and acts the same as in the past. But the quicker you can accept change, the less stress there will be.

Collaborate. Improv acting is usually done with a couple of actors, sometimes more. It only works if everyone works together. Caregiving is like this too. Surround yourself with other "actors." Don't try to do this alone. Join a caregiver support group. Have a "phone buddy," someone you can phone and vent with, etc. Get someone to help a few hours a week at least. I know, you hear this a lot. But have you done it? Are you still trying to do it all?

Give yourself permission to fail. When improv actors make mistakes, they laugh and move on. Everyone fails. No one is perfect. Trying to be the perfect caregiver is a setup for failure and stress. Give yourself permission to fail. See it as a gift of learning, a "learning experience." I tried that. It didn't work. How else can I do this? Then forgive yourself and move on.

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.

Friday, June 10, 2016

Using Improv with Dementia, Part 1

Improvisational theater, or improv, is where the dialogue, action, story, and characters are created collaboratively by the players as the improvisation unfolds in present time, without a script. Sounds a lot like real life, doesn't it, where we don't have a script and we make up the conversation as we go along. It is actually a lot like dementia caregiving too, where the LO lives always in the here and now, and the caregiver doesn't know what will happen next. Just as with improv, caregivers have to take what's offered and run with it. We don't get to chose WHAT we get, but we can choose how to react.

The following video compares improv acting to working with dementia. They talk about Alzheimer's but it works with LBD too.

 from TEDMED

When your loved one presents you with a hallucination, a delusion, or a false memory, what do you do? In improv, there are some guidelines. It doesn't take much adaption for them to work for caregivers too.

Listen. This is the first requirement. Easier said than done, especially when LO's reality doesn't match yours. Take a deep breath, and just listen. Listen with your ears, eyes and heart. Be especially careful to "hear" the emotions involved. People with dementia become driven by their emotions.

Say "Yes, and..." That is, agree, in action if not in words, and add something non-conflicting that moves the action on. An improv actor accepts what's offered and goes with it. When Annie saw children coming out from behind the TV, Jim let his actions show that he accepted Annie's reality when he looked to see where the children were coming in, and then he moved the action on by ushering them out the door.

Accept the reality given to you. Your LO's reality is the only one that counts. Don't explain, defend or argue for YOUR reality. This is not YOUR play, you don't get to set the scene; your LO does. When Jake's wife accused him of infidelity, he didn't defend himself. She had set the scene and cast him in the role. Like a good improv actor, he went with the flow and told her, "I'm sorry, I won't do it again."

Be in the moment. Improv is all about what is happening this minute--and the feelings involved. So is dementia. Your LO lives in the here and now. When Jake's wife accused him of infidelity, he knew that all that mattered was that moment, when his wife was fearing abandonment, and voiced it her delusions. It didn't matter that they'd been married for 50 years and he had never been unfaithful. That's in the past. He knew that she could only deal with right now. And so he entered her reality and then, like Jim with the children, ushered out her fears, "I won't ever do it again."

Focus on the emotion. A lot of acting involves making emotions believable. As dementia progresses and thinking becomes more difficult, it is replaced with a focus on emotions. If you, like Jake, pay less attention to the words and more to the feelings that led to them, you will probably be more successful.

This isn't all! Next week's blog will be about some more ways that we can use improv acting guidelines with dementia caregiving.

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.



Saturday, June 4, 2016

Some Websites and Blogs Worth Following

Last week's blog was about how useful the internet is for caregivers. What wasn't mentioned were some of my favorite blogs and websites. I've posted blogs/articles from the first two (with their permission, of course) and  used the information from all of the others for my own blogs at various times.

Lewy Warriors by Lisa Cooke. An active caregiver, Lisa doesn't post very often but when she does, it is well worth reading. The thing that I really love about her posts is that she gets her whole support group involved. She asks them to complete a sentence like "The biggest mistake I ever made in my caregiving duties was ..." and then posts a composite of the answers. (The most common answer to that question was "not getting help soon enough.") Her latest is "Caregiving has taught me..." I can't wait to see the results of this one!

Learning to Live with Lewy Body Dementia (lewybodydementia.ca) by Timothy Hudson. This Canadian does a wonderful job collecting all kinds of interesting information about LBD caregiving. The novice to the old hand will both find value here. One of my favorites is his "Top 10 Priorities After Lewy Body Dementia Daignosis. (These are non-medical...the ones people often wish they'd considered when it is too late to do them anymore.)

Aging Care.com. This site is apparently run by volunteers. It isn't just about LBD, but many of its articles are applicable. For instance, its latest newsletter listed an article about "6 Ways o Prepare for 'The Talk' About Moving to Senior Living." They also offer ideas about nutrition, and just about anything else that concerns us seniors. Besides articles, they offer readers the opportunity to be a part of their community by asking questions, participating in forums and joining discussion groups.

Next Avenue.com, published by Twin Cities Public Television. This site advertises itself as "public media's first and only national service for America's booming older population. They have some good, usually quite short articles. A recent one, called "One Simple Word Holds the Key to a Simpler Life" was a good reminder for me to re-evaluate how much I take on and consider if I really want to do it. The downside of this site is that it is littered with ads. Be careful what you click on--it may be an ad instead of an article.

Grandparents.com. This site is sponsored by the American Grandparents Association, and is of course, another non-LBD, non-caregiver specific site. But there are lots of very apt articles here. One of the great things about this site is that it really IS designed for seniors. It's easy to read, even with my failing eyes, and there are lots of graphics. Like Next Avenue, it does have ads however.

Barking Up The Wrong Tree (http://www.bakadesuyo.com) by Eric Barker. This site isn't even elder-specific. But it is one of my favorite go-to sites when I want to learn more about living a more positive life--something pretty important for caregivers. Eric says his site "brings you science-based answers and expert insight on how to be awsome at life." He does a great job of this. I've recently used his site to learn about the value of laughter, gratitude, and relationships. He doesn't just tell us what works, he goes into the nitty-gritty and tells us why. For instance, laughter is helpful because it triggers dopamine, a "feel good" hormone. Uh, oh, no wonder a person with PD might have difficulty finding something funny: Lewy bodies steal their dopamine! (No, Eric didn't mention LBD. I just put what he said with what I know. That reminds me of PD's Big and Loud exercises. I wonder if laughing a lot, even if you don't think it is funny would help? It helps others. Eric told me so.

If you have a favorite site, be sure to comment and let us know about it and why.

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

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

Friday, May 27, 2016

The Internet: A Useful Tool

I’ve been using the internet for more than 25 years. In the early 1990’s, it was a place where I made friends via chat groups. Then friends and family began to get email addresses and I began emailing them instead of writing letters or phoning. By now, it is my telephone book, my cookbook, my research library and my encyclopedia. I tend to communicate via email instead of phone, and I visit my distant loved ones via Skype.

Many seniors aren’t as comfortable with computers or the internet. They might look recipes up in favorite cookbooks and go to the library or ask a doctor or other expert for information. Even so, most do have email mainly, they say, “to keep up with the grandkids.” Many go on Facebook for the same reason. So do I! But for caregivers especially, there is so much great information and support available on the internet, that it is worthwhile making the effort to learn a bit more about how to use these resources. Here are some of the ways the internet can help caregivers:

Support groups. Probably the most important way that the internet can help caregivers is through the growing number of support groups available online. I just can’t say enough about the value of being in a support group. Local groups, where you can talk face-to-face—and share hugs!—with others who have had similar experiences, troubles and joys are definitely wonderful. There are now over a hundred LBD support groups in the US and hopefully, one is close enough for you to be able to attend.

Then there are the virtual groups. Even if you do have a local group, you may need to vent or ask a question at 3am. That’s when these virtual groups come in handy. You get the same “we are in the same boat” feeling and the same caring responses. Most of these groups are closed, i.e., you must apply for membership and be accepted before you can see the posts or post yourself. Most are open to anyone who applies, but some have limits. I’ve only listed our favorites here:

  • Facebook Lewy Body Carers Group. Of all the FB groups, this one reminds me most of a local group with very supportive caregivers, ranging from new to those who’ve been around for years.
  • LBD Caregivers Yahoo Group—the first virtual LBD support group and still going strong. Jim was one of this group’s first members and he still monitors it.
  • LBD Caring Spouses Yahoo Group—open only to spouses of loved ones with LBD. “We not only care for our loved ones, we care for each other as well.” Jim considers this his home group. He has been with it since it started.
  • LBDA Forums, discussions on a variety of subjects--open for reading, but you must sign up to comment. These forums are one of my go-to resources for information about LBD from “the horses’s, uh, caregiver’s mouth.”

Drug Information. Because LBD is such a scary disorder where drugs are concerned, every LBD caregiver needs to be well-educated about these drugs. There are many places on the internet where you can find out about drug side effects and interactions. A warning: Use these sites in addition to asking your pharmacist, not in place of. Your pharmacist can be much more specific with you. There’s a long list of drug information resources in our Managing Cognitive Issues book, but start with the three drug lists on LBDtools.

LBD information. LBD is a baffling disorder and can appear in many forms. A well-informed caregiver can do a much better job of caregiving. You will have a better idea of what to expect and more importantly, how to deal with the symptoms—which ones to adjust to and which ones to be concerned about. You will learn ways of dealing with frustrating situations that won’t make them worse instead of better. Again, use these sources in addition to what you get from your physician, not in place of.

Documentation. Although many still use a simple spiral notebook to keep track of a loved one’s symptoms and medications, consider trying out a free site like CareZone. It allows you to a journal, a calendar, and a contact list all in one place. A computer, if not the internet, is also helpful in keeping track of your loved one’s symptoms and medications. It is also accessible by mobile devices so if you use a smart phone or ipad, you can take it with you to the doctor’s office.

You may be able add other ways the internet has been helpful to you. Please feel free to comment!

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

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

Friday, May 20, 2016

A Quick Way to Know if LBD is Likely

It is not unusual for a person to receive several diagnoses before they are finally diagnosed with Lewy body dementia (LBD), resulting in months, and sometimes, years between recognition of a problem and a diagnosis that fits. Primary doctors still may not recognize the cardinal differences between LBD and Alzheimer's. Even some neurologists aren't up to date on this disease, which Dr. James Galvin calls "the most common disease you've never heard of." Dr. Galvin has been working with LBD for a very long time. He was already a known expert on the subject when he joined Jim (Whitworth) on the LBDA board in 2008. We were honored when he offered to write the back page review of our book, A Caregiver's Guide to Lewy Body Dementia, published in 2010.

After these many years of research combined with clinical practice, Dr. Galvin has come up a very simple, but surprisingly accurate, list of ten questions that help physicians discriminate between Alzheimer's and LBD. When compared to standard tests, Galvin's diagnostic test shows the difference between Alzheimer's and LBD with a whopping 98.6% accuracy. Even imaging tests seldom do that well!

Dr. Galvin warns that a screening test, in itself, is insufficient for dementia diagnosis, but says that this test can suggest a strong possibility that LBD is present. The beauty of this test is that anyone can do it, including caregivers. While a formal diagnosis of LBD should always be done by a qualified physician, this test can provide a caregiver with information to take to the doctor and a basis for questions to ask. And hopefully, it will decrease the time before an accurate diagnosis.

The Lewy Body Dementia Diagnosis Questionnaire

Allow 1 point for each of the following that has occurred at least three times over the past six months?
  1. Have slowness in initiating and maintaining movement or have frequent hesitations or pauses during movement?
  2. Have rigidity (with or without cogwheeling) on passive range of motion in any of the 4 extremities?
  3. Have a loss of postural stability (balance) with or without frequent falls?
  4. Have a tremor at rest in any of the 4 extremities or head?
  5. Have excessive daytime sleepiness and/or seem drowsy and lethargic when awake?
  6. Have episodes of illogical thinking or incoherent, random thoughts?
  7. Have frequent staring spells or periods of blank looks?
  8. Have visual hallucinations (see things not really there)?
  9. Appear to act out his/her dreams (kick, punch, thrash, shout or scream)?
  10. Have orthostatic hypotension or other signs of autonomic insufficiency?
Add up your score. A total of three or more points indicates a very high likelihood of Lewy Body Dementia.

Copyright 2015 The Lewy Body Composite Risk Score, James E. Galvin

If you do this at home and take it to your doctor, consider bringing along your journal with dates and descriptions of events such as hallucinations, to support your answers.

Some of the words in this test are fairly clinical--it's for doctors after all. Here are some definitions:
  • rigidity: Stiff or inflexible muscles
  • cogwheeling: a tremor that accompanies rigidity, usually characterized by a "stop and go effect" during range of motion
  • tremor at rest: a tremor that appears only when the extremity is not being used.
  • passive range of motion: when a person's extremities are moved through range of motion exercises by another person.
  • letharagic: sluggish, apathetic
  • incoherent: unclear, confusing, disjointed
  • orthostatic hypotension: low blood pressure on rising
  • autonomic insufficiency: ineffective functioning of one's automatic functions including digestion and elimination
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.

Friday, May 13, 2016

When You Have To Go To The Emergency Room

This week, Timothy Hudson is our guest blogger again. (Yes, HUDSON, not Hutton. Sorry, Timothy about the typo last week!) He is caregiver for his parents, one of which has LBD, often posts on the Facebook Lewy Body Carers site and operates a website that is worth bookmarking. See what he says about it at the end of this blog.

Last week's blog was the first part of Timothy Hutton's great suggestions for hospital emergency room (ER) visits. If you haven't read it yet, be sure to read it before you read this. This week is simply a list of all the things you need when you do have to take a loved one to the ER. As I read it, I realized that almost every item could be a blog in and of itself! But Timothy's goal was to make a thorough, but short as possible list that carers could refer to and use. I think he succeeded!
  1. Accompany LO unless impossible. Travel in ambulance with LO. Arrange return-trip later (make a standing arrangement in advance, if possible)
  2. Bring your hospital kit ready with baseline notes, medications, clothes, phone AND charger, pen, paper, contact list, money, etc
  3. Stay with them in Emergency Room, and if they are admitted.
  4. Rigourously attend to hygiene: MRSI and C-Diff, etc., are potential killers, and can frequently be avoided. Apply even greater rigour for yourself. Disinfect, wear a mask, etc.
  5. Provide frequent close physical contact with your loved one to provide comfort, continuity and connection, reassure frequently, apologize and promise to do what you can to remedy (even if that is overly optimistic).
  6. If Trauma: advocate for sedatives and local anesthetics. Avoid general anesthetics.
  7. Pain medications: use Tylenol whenever possible rather than opiates.
  8. Ask early if the situation could be managed as an out-patient: inform staff that risks and downsides increase the longer you stay.
  9. Try to prevent hospital-induced delirium as much as possible. Try to recognize the difference between their dementia, a Lewy swing, and the onset of delirium.
  10. Ask for a quiet place, and try to keep LO and staff calm.
  11. Open or close door/drape depending on LO’s preference and reactions.
  12. Ask for alert-sounds from equipment in room to be silenced or quieter. This is usually done easily, but is rarely offered.
  13. Use “noise-cancelling” headphones and play something they like: they can be comfortable, will diminish the chaotic racket and be peaceful, if headphones tolerated.
  14. Bring something of interest to occupy your loved one.
  15. Quickly establish that they need to maintain medication schedule or a decline and difficult behaviours will likely emerge.
  16. Bring 24hrs of medications, pre-made in dosettes. Even if they will not allow your medications to be used (some will), the sooner you can administer them once discharged, the better (possibly as soon as you get out the door of the hospital).
  17. Advise them that persons with Lewy Bodies commonly have severe neuroleptic sensitivity. Avoid traditional anti-psychotics whenever possible.
  18. Accompany LO to all tests. Both as an advocate, and to ensure Showtiming doesn’t convince the technicians that LO is fine, or can stand/walk, or is not who they believe ‘em to be
  19. Request a paid-carer if you have to be away, depending on LO’s cognition. Some hospitals will have “sitters” that will be assigned without you having to pay for it (but they’ll never advise you of that, and they are frequently clueless about dealing with dementia and delirium).
  20. Always insist that someone help in the bathroom to prevent falls.
  21. If discharge is a potential, ask for details of what risk factors would be if you returned home.
  22. Carefully make notes, and ask for things to watch for once discharged.
  23. Carefully read the discharge instructions before you leave, digest the details, and ask questions while still at hospital with knowledgeable people available.
  24. Get them home as soon as viable – often will recover faster there.
  25. Don’t underestimate recovery times and relapse potential: almost always more difficult with LBD.
Thank you, Timothy, for sharing this. You will be able to find Timothy's complete article on the LBD Care Partner's page within a few weeks. (We are revamping the website to meet Googles mobile requirements or it would be sooner...)
Timothy Hudson operates LewyBodyDementia.ca -- a Canadian website providing tips and techniques to make life better for LBD carers and those they care for. Information is prioritized to provide the biggest benefit, and as early as possible in the process.

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. (Nor is Timothy Hudson.) As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.