NPR Story on Delirium (from Hospitalization)

There’s a 5-minute NPR story today on delirium.  Apparently 2 million seniors a year (or about one-third) who go into the hospital are affected by delirium.

Here’s an enlightening excerpt:

“My father wound up getting delirious even when I was there at his bedside,” [Dr. Sharon Inouye, a geriatrician] says. “I’m an expert in delirium, and I couldn’t prevent it from happening.”

Dr. Inouye attributes it to hospital care that has become complex and fragmented:

“There were just so many physicians taking care of my father, so many medications,” Inouye says. “It was really hard for me to keep track of everything. You know, I knew there were certain medications he couldn’t tolerate, and I told one group of physicians, and then another group of physicians would prescribe it. And so it really just was quite eye-opening for me.”

If one of the world’s leading researchers on delirium couldn’t protect her own father, the average American might feel helpless, too.

Here’s the link and most of the story (the introduction isn’t available in text form).

Robin

—————

www.npr.org/templates/story/story.php?storyId=111623212

Treating Delirium: An Often Missed Diagnosis
NPR Morning Edition
by Joseph Shapiro
August 10, 2009

Virginia Helton says her husband is a “brilliant” man. He’s a scientist who can explain complex chemistry and physics. But when he was in the hospital last February, she didn’t recognize the man acting so bizarrely — talking wild nonsense and taking off his clothes.

Earle Helton, 79, was diagnosed with delirium, a sudden and frightening onset of confusion. A common but often unrecognized problem in hospitalized elderly people, delirium is estimated to affect more than 2 million seniors a year.

“I was feeling very scared,” his wife says. “It was very disturbing to see him in all this confusion with disordered speech.”

“I remember quite vividly my desire to escape, and [I] was proposing all sorts of fantastic schemes, according to the kids, as to how I could get out and get out of the hospital,” Earle Helton says. “As a matter of fact, I ended up executing that on at least one occasion and managed to get through the hospital and underneath one of the surgical beds.”

Virginia Helton says staff at the hospital “tied his hands down because he kept trying to get out of the bed, and that made him furious. And they did that several times when he was in this state of delirium.”

Dr. Sharon Inouye was working at the Boston hospital where Helton was a patient. She recognized he was on an anti-seizure medication that could cause confusion. She stopped the medicine, but it took a few days for the drug to clear his system and the delirium to stop.

Inouye, a geriatrician at Harvard Medical School and Hebrew Senior Life, says it’s easy for doctors to miss delirium. Most of the time, a person with delirium is inattentive and may have trouble following a conversation. Sometimes, the symptoms are more obvious.

“What we look for is a person who is having a lot of difficulty answering questions,” Inouye says. “They often will not make sense. They may hallucinate. They may be very agitated. They may have a totally different personality. You know, very often family members will say to me: ‘He’s nothing like that at home.’ ”

Inouye saw delirium in her own father, who was also a physician.

“My father wound up getting delirious even when I was there at his bedside,” she says. “I’m an expert in delirium, and I couldn’t prevent it from happening.”

Inouye attributes it to hospital care that has become complex and fragmented.

“There were just so many physicians taking care of my father, so many medications,” Inouye says. “It was really hard for me to keep track of everything. You know, I knew there were certain medications he couldn’t tolerate, and I told one group of physicians, and then another group of physicians would prescribe it. And so it really just was quite eye-opening for me.”

If one of the world’s leading researchers on delirium couldn’t protect her own father, the average American might feel helpless, too.

Still, there are precautions a patient’s family can take. Family members can start by becoming more aware of the drugs that cause delirium, says geriatrician Malaz Boustani at Indiana University School of Medicine.

One class of medications that can be a big trigger is anti-cholinergic medications or common prescription and over-the-counter drugs such as some sleeping pills, asthma medications and antidepressants.

It’s also important for older patients in the hospital to keep using their eyeglasses and hearing aids and be allowed to sleep through the night, says Boustani. Delirium can be triggered by a state of confusion, and these things help maintain a more consistent environment.

Boustani recently studied 1,000 senior citizens who came to an Indianapolis hospital. One-third developed delirium. And those who spent more time in the hospital had a higher risk of going to a nursing home or of dying.

Doctors often dismiss delirium, Boustani says, because they think it’s just dementia in older people. The two are different. Delirium is a temporary form of cognitive impairment, whereas dementia is a more long-term problem that involves issues with at least two brain functions, such as memory loss along with impaired judgment or language.

Still, there’s a link between dementia and delirium.

“What we found [is] that if you develop delirium in the hospital and we follow you up to five years, the odds of developing dementia or Alzheimer’s disease is five times more,” Boustani says. “And the question is: Is it the delirium itself that caused toxic insult to the brain and then triggers spiral evolution to develop dementia? Or was the delirium simply a positive stress test for dementia?”

Boustani suspects that an episode of delirium shows dementia that already exists or is developing. But other researchers suspect that getting delirium in the hospital can cause long-term dementia.

That’s one more reason why it’s important for researchers, doctors and patients to better understand delirium that occurs in the hospital — and how to avoid it. Boustani says studying delirium appeals to him because it’s one condition in the elderly that can be reversed, not to mention something he just might encounter in the future.

“It’s a fulfilling feeling as a doctor,” Boustani says. “At the same time, I want to live as long as possible.”

He says that if he lives that good, long life, the chances are that he’ll be an elderly man in a hospital one day. “I want to be proactive and make sure the system is ready for me.”

Overview of Lewy Body Dementia (2006, AlzOnline)

The University of Florida runs the “AlzOnline” program, online caregiver support for Alzheimer’s caregivers.  From time to time, an article in their “Reading Room” catches my eye.  Tonight, I ran across their 2006 overview of Lewy Body Dementia.

Check it out:

alzonline.phhp.ufl.edu/en/reading/lewybody.php

Lewy Body Dementia
by Leilani Doty, PhD, McKnight Brain Institute, Gainesville, FL
AlzOnline.net
2006

This section is particularly good — “Family Education and Planning Ahead After the Diagnosis.”

Robin

Speech/voice exercises (by Rose Chable, SLP)

A couple of years ago these oral exercises were posted to one of the MSA-related Yahoo!Groups. These three documents were written by Rose Chable, a speech language pathologist. I suspect they were written several years ago.

Document #1
Oral Exercises
By Rose Chable, Speech Language Pathologist

Three things to keep in mind for oral exercises; strength, flexibility, and coordination.

Here are some examples.

For STRENGTH:

Use a tongue depressor, popsicle stick or small spoon for resistance.

1. As you’re trying to stick out your tongue, press against your tongue with the depressor, etc. You can use this same idea in all positions for your tongue—

2. trying to stick your tongue out beyond the corners of the lips and pressing back for resistance, etc. You can use this with the lips too.

3. Pucker hard and press back for resistance. Another for the lips,

4. blow lots of air into the cheeks; don’t let air escape through the lips. If trouble loosing liquid from lips,

5. press lips together firmly (no red of the lips showing) and hold for one minute intervals. Try holding thin objects with lips only (no teeth) for longer periods of time (ie. use straw, tongue depressor, thermometer).

6. Make the loudest kissing sound you can (the louder, the stronger your lips are).

7. Say Coke, cake, cook…. each word with strong “c/k” sounds to get the tongue to go up in back (this is usually good for swallowing too).

For FLEXIBILITY:

The goal here is to get your tongue and lips to move to the FULL extent possible.

Examples:

1. Stick tongue straight out way beyond the lips; hold for 3-5 seconds. If you have trouble doing this, wrap a piece of gauze or similar material around your tongue and GENTLY pull out, stretching slightly and hold. Like any muscle, don’t stretch to a point of pain. (This one’s usu. good for swallowing too).

2. Stick tongue tip into each corner of the mouth. If easy, stretch beyond the corners, as if getting peanut butter (or whatever) from the sides of your mouth.

3. Stick tongue up to top lip then down beyond bottom lip as far as possible.

4. “count your teeth with your tongue”; try to reach every tooth in your mouth with your teeth.

5. Stick tongue into each cheek and push the cheek out as far as possible with the tongue. Try to go farther back in your mouth towards back teeth. (Good for swallowing if the person has difficulty getting the food out around the teeth)

6. Lick lips all the way around, not missing any part of the lips while keeping your mouth open slightly. Try to get your tongue beyond the red border of your lips.

7. For lips, Alternate hard pucker with WIDE smile.

8. Alternate Open mouth WIDE, press lips together firmly.

For COORDINATION:

The goal here is keeping consistently strong movements while speeding up the movement in a repetitive fashion.

1. Move tongue back and forth into each corner of the mouth (make sure you touch each corner). Speed up as quickly as possible. Keep your tongue moving consistently, like to the beat of drum that’s getting faster.

2. Pretend to lick a popsicle; open mouth sligtly and keep it open. Put tongue down on chin then “lick” up to top lip. Do as quickly as possible but make sure the movement is accurate.

3. Lick lips all the way around but speed up as quickly as possible with mouth open slightly. Don’t miss any part of the lips. Change directions.

4. As some have mentioned, repeat sequences of syllables (mama or Puhpuh=for lips, Lala or Tuhtuh= tongue tip up, Kaka or Kuhkuh=raising back of tongue).

Do sets of sequences quickly but accurately; all sounds must be heard. This is an example of one set to do:
“Puh Tuh Kuh, Puh Tuh Kuh, Puh Tuh Kuh”

To INCREASE SENSATION AND FLEXIBILITY if difficult to do above:

1. Use a toothbrush’s flat side and press firmly down in the middle of your tongue then try the “c” words…cook,etc.

2. Run the toothbrush back to front on your tongue…..then stick out your tongue as far as possible.

3. Run the toothbrush down the sides of your tongue diagonally. Do one side then try to get your tongue to the corner of the lips in the direction you were rubbing.

You can also use a “Nuk brush” or oral sponges sold in pharmacies. Any of these things can be put in the freezer or add lemon to them to get even more sensation.

Pick and choose based on what you have difficulty with, then do the exercises that you’ve chosen ten times each, two times each day and see where that leads. Work on exercises that are somewhat challenging but not frustrating and try to work up to the ones that are the most difficult if you can.

Document #2
Exercises for Clearer Speech
By Rose Chable, Speech Language Pathologist

Here are some things to keep in mind for clearer speech:

When talking, concentrate on the following:
1. Open your mouth wider
2. Separate your words and syllables (Examples: Mi-am-i Flor-i-da or I’ll see you to-mor-row).
3. Pronounce EVERY sound (overexaggerate)
4. Take a deep breath prior to speaking
5. Take a breath after every 4-5 words
6. Be LOUD

Most people who have weakness/decreased coordination of the tongue, do best using #1 and 2.

If it’s mostly a voice problem (too soft), concentrate on #6 and 4.

Have someone else listen to you during a short conversation with them and have them give you feedback on if you’re really using the strategies or need to do more of them.

Or, you could tape record yourself for your own feedback.

Document #3
Lee Silverman Voice Therapy
By Rose Chable, Speech Language Pathologist

This is an overview of the Lee Silverman Voice Treatment Method:

Contact speech therapists in your area and ask if they have been trained to do LSVT. The CONSTANT reminder to the patient is to “BE LOUD” Some of the basics are:

1. Take a big breath and hold the “e” sound as long as possible on a comfortable pitch level and LOUDLY (above conversational level speech).

2. Do a scale on the “o” sound, gliding from lowest to highest pitch LOUDLY.

3. Make a list of 10 sentences that the person says on a daily or regular basis and have them repeat or read the sentences LOUDLY.

Do each of the above three times daily.

People who have Parkinson’s usually think they are yelling when they first do this so it’s important to give feedback that the loudness level is good. The practice LOUDLY is very hard to start carrying over into conversation. After doing the above exercises for two weeks, 3 times a day, then add.

4. Talk for 5-15 minutes in conversation and speak LOUDLY (the patient ot the listener).

The research was found to have the best results when the above items are done daily for at least 4-6 weeks.

It’s really best to have a speech therapist directly work with you at least on a consult basis so you will have feedback on how loud is appropriate and if other adjustments need to be made.

Caregiving Webinar with John Burhoe – Notes

Today, CurePSP (psp.org) hosted a wonderful webinar on caregiving with John Burhoe.  The presentation was a personal view of dealing with progressive supranuclear palsy (PSP) through the eyes of a veteran caregiver, John Burhoe.  John and his wife (Mary) Lou were married almost 45 years, “with the last five under the cloud of PSP.” He shared his story today because he wants to help prepare others going down this path.

Here are my notes.

Robin

————————————

John had two “advantages” not all have:
* ability to generate income while being home 24/7
* he is 6’3″, 225 lbs while Lou was 5’5″, 130 lbs.

The PSP journey began with Lou falling in the bathroom in 2002. They visited an MD at Scripps in San Diego. The MD’s diagnosis was “Parkinson’s Plus.” An MD at Mass General in Boston saw Lou three times; on the third visit, the diagnosis of PSP was given.

“The journey is much like a flight of stairs as opposed to a declining ramp with periods of relative stability punctuated by sudden and permanent drops.”

Example: In January 2007, Lou lost the ability to speak literally overnight. This ability never returned.

Lesson learned: Find multiple sources of support. These may not necessarily be where you would expect them.
* SSI (Sports, Spine & Industrial) is a facility in Greer, SC providing a combo of sports training, workout, and PT. Lou went twice a week. John could also work out at the same time.
* Church.
* Hospice.

Great aids:
* Portable aspirator ($250) – useful for choking spells
* Writing board is a great help in communicating. Also, ask yes/no questions (thumb up/down, or squeeze the finger).

Lesson learned: Educate yourself.
* curepsp.org: This website is being revised later this year and will be even better.
* Find other websites for info
* Support groups are a great source of info and comfort. Often caregivers get more out of these groups.

Lesson learned: Maintain the relationship.
* Look for and share the humor, albeit sometimes dark. John told the story of the “toilet tango” – dancing to the bathroom.

Lesson learned: Make sure others know the person behind the mask that you know. Introduce them to that person. NEVER let anyone refer to your loved one in the third person when he or she is sitting right there. (eg, “Does she want this?”) Nothing is more dehumanizing or degrading than that.

Lesson learned: Look out for “compassion stress and fatigue” and do something about it if this occurs.
* Short temper
* Depression
* Feeling sorry for yourself
* Social withdrawal
* Resentment towards your loved one
* Tears

Lesson learned: Take action.
* Ask for help. People want to help but you MUST tell them how.

Lesson learned: Take a “breather” to get away from the situation. And give your loved one a breather from you!
* You will lose your temper and say things you regret. You’re human – forgive yourself. Sounds easy, but it’s not.

Lesson learned: Don’t wait – do it now and for as long as you can. Examples: put a porch on the back of their house. Took car trips. Took airplane trips to visit grandchildren. The airlines are very helpful with wheelchair-bound passengers. Every day up until December 2007, John and Lou were in a car. They went to church up to the week Lou died.

Lesson learned: find a good local neurologist with whom you are both compatible.

Lesson learned: Allow yourself to have diversions.
* Three businesses with partners
* Promoting the concept of hospice
* Building awareness of PSP
* Reaching out to sister organizations for ALS, AD, and PD.

Lesson learned: Don’t feel sorry for yourself. What good will that do?
* Count your blessings and treasure the times you’ve had and still have together. John had a kitchen table filled with pictures of Lou and family and friends. Every time John walked by the table, he’d pause, look, and count his blessings.
* Right now focus on your loved one’s happiness.

Lesson learned: Be willing to fail. Whatever it is, try it. If it doesn’t work, and some won’t, at least you gave it a shot.

Issues you need to decide for yourself:
* whether to stay at home or utilize an extended care facility. This is often decided based on the physical size of the care giver and care recipient.
* whether to insert a feeding tube or not. Thoroughly research this, including having discussions with your MD. He recommended this website for some info on this decision: neurosy.org/disease/psp/psp-swallowing.html

Lesson learned: Don’t wait to get hospice involved! Get them involved early! John and Lou had hospice for 18 months.
* visit your local hospice organization and discuss the certification criteria
* major source of information, support, compassion, and experience
* Medicare covers this
* provides medical info, personal care, caregiver support, spiritual support
* you need an MD’s prescription

One day, Lou said: “I want to go home. Are you OK?” She said this after not having spoken for a year. The family gathered. Once the family was gathered, Lou died peacefully. (In 2008.)

John said that he felt relief in Lou’s passing. He pointed out that no one talks about this. Relief is “a natural phenomenon that everyone feels because a great load has been lifted from your shoulders and you now have your life back. No one talks about this but everyone experiences it.” After Lou died, for the first time in five years John had his own life back.

The five-year journey brought John closer to God.

Feelings and memories of his wife Lou are triggered by all sorts of things.

John established the “Mary Lou Burhue Scholarship Fund” to honor his wife and provide assistance to young people who mirror Lou’s core values of dignity, character, grace and humor in the face of adversity. Awards totaling over $20K have been made to 12 students.

John got married again about a year after his wife died. His new wife is Carolyn, Lou’s best friend of over 25 years. John responded to those who wondered about the “quick” re-marriage. John made two points. First, he had been grieving for Lou long before she died.

Second, John provided this quotation: “Your love for one person will never diminish your love for another. Love never divides, it always multiples.” — The late Dr. W.A. Criswell of Dallas

“Life goes on…honor your loved one by participating in it.”

Questions and Answers: (answers are by John Burhoe, unless indicated)

Q: Do PSP patients understand what is happening to them?
A: Yes – for Lou. This is not true for everyone.

A by Janet Edmunson: We need to act as if the loved one hears and understands everything.

Q: Since PSP and CBD are degenerative, what is the point of regular visits to the neurologist?
A: This is a dark view of things – saying “what’s the point?” Never give up. Never stop searching.

Q: Can you talk a little about your experience with sleep patterns and PSP/CBD?
A: John and Lou slept together throughout the disease. Neither John nor Lou had problems sleeping.

A by Janet Edmunson: Her late husband Charles (with pathologically-confirmed CBD; died at age 51) had terrible problems sleeping. Charles woke up hourly and he also moved around in bed a lot. The only medication that allowed him to sleep was Seroquel, an antipsychotic. Janet used TylenolPM for herself. Janet also slept on the floor next to the bed.

Q: Will you elaborate on your use of the portable aspirator?
A: It cost about $250. It took a long time to feed Lou. Liquids were thickened. Lou experienced one or two hour choking spells. These were more episodes of gagging, not coughing. The aspirator could be used to get some of the food out that had lodged in the throat.

Q: If you feel incompatible with your neurologist, what is the best way to find another one?
A: John did fire a neurologist from Duke. He found a local neurologist that both he and Lou liked.

A by Janet Edmunson: Use the PSP Forum to ask if anyone knows a neurologist.

A by Kate DeSantis, CurePSP: People can do a Google search on “movement disorder specialists.” Search on WeMove.org for MDs. Email Kate ([email protected]) for an MD referral. She has a list of MDs associated with the Movement Disorder Society.

A by participant: Referrals to local movement disorder specialists can be obtained through the APDA (American Parkinson Disease Association) Information & Referral Centers, apdaparkinson.org.

Q: Does/can hospice involve giving up therapies? PT, OT, speech? And meds?
A: Hospice doesn’t normally cover therapies. They

A by Janet Edmunson: If a therapy involves comfort or safety, hospice should cover it. You might get occupational therapy because they want to make sure the patient is safe in the home. Every hospice is different.

Q: Did Lou take antidepressants or other meds that you found helpful?

Q: What is the best way you found to prevent falls?
A: He’s not a good reference for this question. Lou’s first fall was her last fall. John is large enough that he was always able to prevent her falls.

A by Janet Edmunson: “Impulsivity” happens. Charles would get up on his own, despite being told that this was unsafe.

Q: What were your warning signs that Lou was nearing the end?
A: In Lou’s case, she decided when it was time to throw in the towel and she decided the time of her own death. In the last week, hospice put her on morphine. “People can very much pick the time and place of their death.” Lou “fought the good fight…and finished the course.”

Q: How did you communicate with Lou once she was unable to move her hands well?
A: John and Lou had been married a long time, he usually knew what she wanted. Lou was able to squeeze John’s finger up until the very end.

Q: What is your experience with vision problems?
A: Lou lost the ability to read very early. John and Lou got out a lot and attended many social events.

Q: What do you think is the best way that family members living away from the patient can be of help to the caregiver?
A: Visit, if you can. Sometimes giving money can be helpful. Let the caregiver and patient know that you care and you are there.

Q: A participant stated that a “transfer platter is helpful for moving patients between bed and chair, etc.” It was later described as a 12-14″ disc.
A: Neither John Burhoe nor Janet Edmunson were familiar with a “transfer platter.”

Q: Will you speak to how to handle inappropriate behavior in social situations?
A: Lou never behaved inappropriately. John feels blessed.

A by Janet Edmunson: Charles went through a stage of yelling, which was very uncharacteristic. He sometimes got agitated in public places. Humor might help. Sometimes they would just have to leave the restaurant or public place.

Janet told a story about Charles’s love for frozen yogurt. He would end up with frozen yogurt all over his face and clothes. They would just laugh about it. It was a special treat. So what if she had to wash his clothes after each outing?

Q: How did you explain the disease to your grandchildren?
A: His 5-year-old granddaughter didn’t require an explanation. The granddaughter just gave love to Lou, and Lou gave love back. Kids have wisdom and behavior beyond their years. Even the older grandkids didn’t require an explanation.

Any way to prevent father from getting up?

I received this email today:

“I’m sorry to mail you individually, but I created a topic and couldn’t get a reply from anyone, so I deleted it.

My father was diagnosed in 2002. The disease has progressed fast and led him almost to his final stage now. His situation is:

– Difficulty in swallowing (mom and I are still ignoring the feeding tube option, and feed him well in puree form..)
– Not even his one word is now understandable. (best way we have found is that he tries to write letter-by-letter on his palm with his finger. After first few letters, we guess what he tries to tell.. Funny, but works..)
– Breathing seems to be very difficult nowadays, mostly disordered.. He makes a sound like he’s whimpering. But when I ask him if he has a pain somewhere, he says no..

At this stage our biggest problem is that he wants to move very often. He can’t sit down even for a minute, and tries to get up (can’t) and go somewhere. Almost obsessed with some issues (like he wants to go see a friend etc..) The fact that he wants to get up very often is a very high risk for him, as he can’t stand or walk without help, and falls. We are walking with him most of the time, but sometimes it is extremely exhausting to follow him. I would be grateful if you have any ideas or solutions that could help.”

Here’s my reply:

I remember seeing your first post and I’m sorry neither I nor anyone else responded.

I think you only have one choice — be with him 7×24 and assist him when he does want to walk.

You can treat the obsessive impulses with an antidepressant or other medication. This may lead to drowsiness. You might give that route a try, in consultation of course with the MD, and see if that improves your father’s restlessness (akithisia) and obsessive thoughts.

Is there any way you could tire your father out through exercise? In the US, they have pedalers that can be placed on the floor. Sounds like he could also get on an exercise bike.

Or would taking your father outside in a wheelchair for some fresh air resolve his need to move around?

I wouldn’t consider your father to be in the final stages.

Robin