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

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.

Friday, October 14, 2016

Some Helpful Links

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good until Nov, 1, 2016.

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Some Helpful Links

This month is Lewy Body Dementia Awareness month. And so we’ve compiled a list of links to resources that you might want to keep handy. We actually started with several of the links suggested by Lisa Cooke, in her Lewy Warriors blog, and then added a few others. https://lewywarriors.wordpress.com/helpful-links-and-groups/

Finding The Right Lewy Body Dementia Specialist…someone who is familiar enough with LBD* to be able to diagnose it vs a different dementia can sometimes be difficult. Most people get at least 3 other diagnoses before they are diagnosed with LBD. (excerpt from  A Caregiver’s Guide to Lewy Body Dementia.)

Is it LBD or something else? The Lewy Body Composite Score is a test was developed by Dr. James Galvin and his team for doctors to use to determine if a person has Lewy Body Dementia. It takes about 3 minutes. Dr. Galvin is on the LBD Scientific Advisory borad.

The Phases of Lewy Body Disorder  Describes seven stages or phases identified by caregivers for a basic description of progression followed by many with Lewy Body Disorder. Unlike Alzheimer’s, LBD isn’t easily categorized. This attempt by the Caring Spouses online support group is the best we’ve found.

5 Communication Tips for Dementia Caregivers.  PlwLBD* tend to have many communication issues, and these tips can help.

Driving Guidance.
At the Crossroads is a booklet published by auto insurer, The Hartford, about when to quit driving. It ends with a checklist of danger signals.

Dementia and Driving Resource Center. Another thorough review of how to deal with this issue.

Residential Placement:
Choosing a Memory Care Center. Memory Care Checklist: What to Look for, What to Ask. There are actually a lot of these questionnaires on the internet. To look for others, just Google “questionnaires about dementia care.”

Residential Placement Without Guilt: This blog also covers some LBD specific issues that most questionnaires don’t cover.

How long do we have? This Time to Nursing Home Predictor tool was developed based on the decline of hundreds of dementia patients. It helps predict how long a patient will have before nursing home placement and death based on their symptoms and the progression of others with similar symptoms. Always remember that this tool only tells you what the average person will do. Your loved one could last much longer…or not as long. But it does give you a guideline to go by.

A progression scale: The Quick Dementia Rating System (QDRS), with its 10 basic questions are a quick and easy way for doctors, and caregivers as well, to keep track of progression.

Another progression scale: The Fast Scale is used for developing the hospice criteria below. It was developed for Alzheimer’s patients as a way of following their progression with the disease. Many doctors use it for all dementias in order to keep track of progression.

Hospice criteria. This is a printable card that gives the criteria for Hospice as well as a breakdown on the FAST level for dementia. It shows how difficult it is to go onto hospice with only dementia. However, PlwLBD have so many physical problems that they will often qualify via them rather than the dementia.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
BPSD: behavioral and psychological symptoms of dementia

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

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

Friday, October 7, 2016

FDA Fast Track and LBD Drugs

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FDA Fast Track and LBD Drugs

Axovant is requesting FDA Fast Track status for their experimental drug, RVT-101, for use with DLB.* This drug enhances the release of acetylcholine and has already been tested for use as an add-on treatment with Aricept for AD patients, with positive results. Axovant is presently looking for people diagnosed with DLB to participate in clinical trials. Contact them here if you are interested.

The FDA Fast Track program is a government program designed to facilitate the development, of drugs to treat serious conditions. This program can cut years off the time before a drug is ready for the market. Drugs to treat Alzheimer’s and Parkinson’s have been placed on Fast Track but so far, none to treat LBD.* RVT-101 would be the first.

Even with Fast Track, the time between the discovery of a new drug and its appearance on the market can be long. For example, Biogen’s aducanumab (BIIB037-bib-037) is a special human antibody designed to target amyloid plaques in Alzheimer’s patients. Antibodies are a part of the body’s natural garbage removal process. Researchers hope to prove that this drug safely facilitates the early removal of these plaques. The studies so far are showing this to be so. However, clinical trials have been going on since 2005. Results from Phase 3 trials, which started in 2015 aren’t in yet....i.e, it has been ten years since the first clinical trials and it is still not ready for market.

Unlike BIIB037, which attacks the cause of the problem, RVT-101 attempts to slow down a disease process that has already gotten such a head start that it cannot be stopped. While this has obvious value for those patients presently dealing with LBD, I wish we could see more focus on, and even Fast Track status, for LBD drugs such as Nilotinib (Tasigna—Tah-sig-na).

Like BIIB037, Tasigna works by improving the function of the body’s natural garbage disposal system, thus decreasing the production and spread of Lewy bodies. With intervention coming much earlier in the progression of the disease, there is hope for better results and even the possibility of an eventual cure. Because this is a cancer drug, already approved by the FDA for use with humans, the testing period is shorter. However, don’t expect it to be available for several years. Researchers are planning a double blind clinical trial to test safety and efficacy with Parkinson’s and DLB patients, to begin in 2017. Contact the Michael J Fox Foundation if you are interested in participating.

There are some concerns about Fast Tracking new drugs. Serious side effects may not be discovered before they are being used by the general public. With LBD's already serious drug issues, that could be a concern. And so, it is an ongoing conflict: We'd like to see these drugs that address the initiating problems in use as quickly as possible...but we don't want to see more drug sensitivity problems either. What do you think?

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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

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


Driving, Part 1:When to Quit

When is it time for a PlwD* to quit driving? How do I convince my loved one to quit driving? What can I do to keep my loved one from driving? Why is this so difficult? These and more are all questions that care partners ask as dementia takes its toll and they can see that their loved one’s driving isn’t safe anymore, but their loved one still persists.

Chapter 49 of our book, Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia, discusses this issue in depth, calling it possibly “more traumatic than asking someone else to handle financial decisions or even transitioning into assisted living.” Highlights from that chapter include:

Deciding that the time to stop driving has come is a very adult decision. It requires that a person can still see past the present, recognize cause and effect and deal with the emotions aroused by the thought of losing one’s freedom to drive.

Discuss this issue early in the journey, before the dementia has eroded the above skills. Don’t wait for others to be concerned, or even for a dementia diagnosis. If you do this as soon as you know there is even the possibility of dementia in your future, you both can be more objective.

Agree upon some red flags that warn that driving has become unsafe and discuss what you will do when you begin to see them. Set up a routine of reviewing the red flags regularly. It is often easier with couples to review the driving of both couples…this takes the sting out of the exercise and it becomes “one more way we take care of ourselves.”

Red flags: Both the PlwD (or even a person at risk for dementia) and their care partner should answer the following questions:

Does the person:
  • Avoid driving with grandchildren in the car?
  • Drive fewer miles than s/he used to?
  • Avoid driving at night, or in the rain, or in busy traffic, or in other situations that feel less safe?
  • Get mad at other drivers easily, and do things like honk the horn, gesture or drive close to them?
Has the person:
  • Been the driver in an auto accident in the last three years?
  • Received a ticket for a traffic violation like speeding or running a red light in the last three years?
Any “yes” answers mean that driving may have become unsafe. The more yeses, the more unsafe it probably is. It is human nature to be biased towards preserving one's driving rights, and so the care partner's answers should usually carry more weight. This is especially so as the PlwD loses the ability to think clearly, which will increase the bias.

The sad fact is that if you wait until driving has truly become unsafe, the PlwD may not remember the prior discussion about red flags. Stuck in the present, they may see only the immediate rewards of being free to drive, but not be able to comprehend what might happen. “Safe driving” will have little meaning and a decision to quit will seem irrational.

Another sad fact is that families often choose to put off this difficult decision until something happens and someone other than the care partner can be the “bad guy” who insists that the driving must end. Since no one can know if the precipitating event will be a mild fender-bender or a more serious accident, this isn’t a very safe choice.

And so what can you do to help your loved one make this decision in the least painful way? Well, that early discussion and the regular review of red flags really do help. The memory of these remains in the person’s subconscious even when they don’t actively remember. (That’s one difference between LBD* and Alzheimer’s. With LBD, the information does get stored in one’s long term memory. The person just has more and more difficulty retrieving it.) This helps to soften the blow and makes it more their own decision.

For more discussion about helping a PlwD quit driving, see next week’s blog.

* 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. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.