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

Friday, May 26, 2017

Dopamine: For More than Mobility

About half of those dealing with LBD also have Parkinson's disease (PD). Anyone dealing with PD soon learns about the need for adequate dopamine.

Dopamine has several functions in the brain, including:
  • Facilitating mobility. This is the function that PlwPD are most aware of. Without adequate dopamine, symptoms such as slowness of movement, tremor and stiffness occur.
  • Reward-based behavior. Anything we consider a treat will increase the secretion of dopamine which facilitates positive emotions. Certain drugs also cause an increase of dopamine, which can make them addictive.
  • Executive functions. In the cortex of the brain, dopamine and acetylcholine play a delicate balancing act that is seldom a problem until cognition becomes an issue.
  • Pain management. In multiple areas of the brain, dopamine acts to decrease pain. Too little dopamine results in more pain, as in restless leg syndrome and an increases susceptibility to pain for PlwPD.
Drug issues. The body protects the brain with a barrier that prevents most substances from passing from the general blood stream into the brain. This is called the blood brain barrier (BBB). Dopamine by itself cannot cross the BBB and so doctors have to find ways around it.
  • Levadopa is a precursor of dopamine that can cross the BBB. Once it is inside the brain, it transforms into dopamine. While levadopa works well for mobility, its effect on mood is limited. Thus, depression is a common PD symptom not treated well with levadopa.
  • Cognition. When PD advances to PDD, with decreased acetylcholine levels, levadopa further interferes with the acetylcholine-dopamine balance and increases already present cognitive issues like hallucinations and slow thinking.
  • Dopamine agonists are drugs that mimic the action of dopamine and can cross the BBB. These drugs appear to have a better effect and may improve depression. However, when dementia is already present, they can increase cognitive dysfunction and compulsive behaviors.
Outside the brain, dopamine has many other functions. It regulates:
  • In the cardiovascular system and kidneys, dopamine acts to increase sodium and water retention, increase heart rate and constrict your blood vessels. Inadequate dopamine can cause low blood pressure and sluggish circulation.
  • In the pancreas, dopamine's job is to regulate insulin production. Too much insulin triggers the release of dopamine, which may also may find its way into the brain where it functions as a reward. Eating high carbohydrate "comfort food" is an example of eating to produce higher levels of dopamine.
  • In the immune system, dopamine retards lymphocyte activity, acting as a brake for when the immune system gets out of control and attacks healthy cells. Inadequate dopamine would result in increased levels of diseases such as arthritis.
  • In the GI tract, dopamine again acts as a brake, reducing gastrointestinal motility and protecting intestinal lining. Too much dopamine can cause constipation. Too little might cause diarrhea and sores on the gut lining.
And so the bottom line is that when a person has PD or PDD, any of these other issues may come into play.  (Reference) (Reference)

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
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, May 19, 2017

The 2017 Arizona Alzheimer's Consortium Conference

Yesterday we attended the annual Arizona Alzheimer's Consortium Conference. We started out on a rather negative note. We left in plenty of time to enjoy the advertised pre-session Continental breakfast. But, long story short, we went to the wrong place MILES away from the right one! By the time we finally arrived, the speaker had already started. At our age, such incidents always end with us asking ourselves, "Is this a sign of impending dementia?"

But on to serious stuff. This is a conference directed at scientists, which we definitely are not. It is also strongly focused on Alzheimers rather than LBD. Nevertheless, we always come away from this conference in a hopeful frame of mind. This wonderful group of nine Arizona institutions collaborate to do research that a single one would find difficult if not impossible, reaching out to other institutions in the country and the world as well. Every year, they have a special focus for their conference. Several years ago, it was actually Lewy body dementia and other less common dementias. Another year, it was caregivers. This year it was students. Most of the presenters this year were students and they were great.

Of course, much of what we heard went over our heads. But we did learn that there are some amazing minds out there working on learning how to identify Alzheimer's early on. That's exciting because what they learn about AD will be translated to others like LBD very quickly. Here are some highlights of the conference:

Precursors: Several presenters talked about trying to discover what the precursors of Alzheimers. They weren't looking at external things like toxins, but on changes in the molecules themselves and what they do to other proteins that turns them into the plaques and tangles of AD. What seems to drive the changes? How common are they? Which changed molecules are present in people known to be at risk for AD and which ones aren't? And so on. The idea is that if they can discover these precursors, then they can find a way to stop them. Further, r researchers can use the methods they develop to look for precursors of LBD and PD and other neurogenic diseases in the same way.

Drugs. Most of us are aware of the damage anticholinergics can cause for anyone with LBD or even at risk for LBD. There's also a lot of the research that shows that the elderly who use these drugs are at greater risk than those who don't. A young researcher (a high school student!!) reported on his findings that middle aged people (40-50 year-olds) who used anticholinergics are at low risk for dementia. This was a primary finding and needs a lot more research, but quite interesting! Another researcher reported on findings that antidepressants like Prozac are fairly safe to use with dementia and in fact, may retard the development of AD.

Clinical trials. One of the roadblocks to research is the need for participants. Naturally they need people with the disease but they need healthy folks too, for their controls. We'd recommend that everyone who can should sign up for the Alzheimer's Prevention Registry. We also learned about the GeneMatch program that they have to help researchers working at the gene level. If you are 55-75 years old, live in the US and don't have a diagnosis of cognitive impairment, you are eligible to sign up for this too.

Caregiver care. Finally, we talked to a group called H.O.P.E. for building Health, Optimism, Purpose and Endurance in family caregivers and people with dementia. We were so pleased to see such a caregiver-oriented program represented at this conference. Their focus for the conference was anticipatory grief...which anyone dealing with LBD knows about...or should. They recommended the book, Loving Someone Who Has Dementia by Pauline Boss. "It's the book every dementia caregiver needs to have. It helps you deal constructively with that ambiguous loss that happens as your loved one gradually disappears in mind but is still there in body." Yes! We agree. It's a book you need in your library.

Oh, and we did get something to eat besides the muffins that we stealthy nibbled on while listening to the first speaker. They had a great lunch buffet with lots of healthy food and some decadent little desserts. Interestingly enough, they also had sodas. Have you heard about the latest research that people who have just one carbonated diet soda a day are three (3!!) times more at risk for dementia? And there's more research showing that drinking sugary sodas is linked to dementia too. Scary, huh? (More about this later.)

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
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.

Saturday, May 13, 2017

Helpful Sites for Care Partners

We recently received two lists of links of for care partners that we believe are worth passing on. The first is from Natalie Kelly, who represents a group of educators and librarians called Forever Curious. The commentary is mine:

Transportation Resources for Older Adults
A very thorough brochure from always helpful Eldercare.gov that lists many suggestions for tranportation once a person can no longer drive. It also lists some agencies to contact for more suggestions in your area.

Selling a Home with Modifications for Older Adults
This valuable group of articles offered by Home City Real Estate are about so much more than selling a handicap-modified home. Anyone with a loved one whose daily living skills are challenged living at home needs to read this. It covers the types of modifications a person can do to make living easier, how these modifications will affect resale value in different areas of the country and how to do these modifications to avoid damaging resale value.

Fall Prevention
A brochure from the National Council on Aging that offers lists of programs to prevent falls by area and several lists on tips for preventing falls. The information is good but the links require patience--they are slow to load.

Assistive Technology Buying Guide
This extensive list of articles was compiled by RetailMeNot for their online shopping advisor, The Real Deal. They accurately advertize it as "Everything you need to know for buying assistive technology smartly." The articles cover everything from what is Assistive Technology and the equipment involved to where to find the best deals, and even how to get at least part of the cost covered. A great read before you buy any of this kind of equipment.

Special Needs Seniors: Planning for the Future of this Vulnerable Population
Retiring Wise is a blog by OneReverseMortgage of Quicken Loans. This particular blog entry discusses financial, medical, communication, and other concerns that seniors face as they age, with an extensive list of links to national, state and private agencies that offer assistance. This article also addresses the advantages of planning ahead, with information about Special Needs Trust, Long Term Care Insurance, and other things to consider early on. A must read, the earlier in the dementia journey the better.

Legal Guide for Newly Disabled Seniors
This article by Just Great Lawyers discusses the issues that every person with a disability and their care partner faces, including dealing with the change to being disabled, applying for services, protecting one's legal, financial and medical rights and more, with links galore for each subject. Every dementia care partner should read this no matter where they are on their journey.

Brain Support Network Blog
The second list comes from Robin Riddle and the Brain Support Network. I've written about their work in helping people donate brains, but now they have a blog that offers lots of information for care partners. Check it out. If you'd like to have the blogs emailed regularly to you, join their email list for LBD and general caregiving. Here is a list of some of the recent blogs:
* "Living Guilt Free" - notes from a one-hour talk
* "Respite Care: Finding and Choosing Respite Services"
* "Grieving Before a Death: Understanding Anticipatory Grief"
* "How do we cope with anger as a caregiver"?
* "13 Secrets That Make Caregiving Easier"
* Urinary problems in Parkinson's - webinar notes
* Complementary and alternative medicine in Parkinson's - webinar notes
* "Beyond Alzheimer's Disease" (including LBD) - webinar notes
* Overview of LBD symptoms and treatment - webinar notes
* Johns Hopkins Overview of Dementia with Lewy Bodies
* Five E’s of empowered living with chronic illness

Happy reading!

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
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, May 5, 2017

The Value of Exercise

We've all heard and read about how exercise is so important as we age, and how it continues to be important for anyone dealing with dementia, both the PlwD and the care partner. Exercise increases blood flow...and oxygen...to the brain, increasing general functioning. But there is so much more!

Exercise is a great stress reliever. It immediately increases the levels of serotonin, noradrenalin, dopamine and endorphins.
  • Serotonin is a feel good chemical that fights depression, common with most dementias, most chronic diseases--and most caregivers.
  • Noradrenalin improves awareness and increases the ability to focus. Apathy, inattention and a short attention span are common dementia symptoms, all involving awareness and focusing.
  • Dopamine facilitates small motor function and decreases depression. Dopamine is one of the chemicals targeted by Lewy bodies, making depression a chronic LBD symptom. (And of course, dopamine also facilitates small motor function, decreasing the tremors, slowness of movement and stiffness of PD.)
  • Endorphins are natural pain relievers. Dementia is mostly a disease of the elderly, who have other illnesses such as arthritis. However, traditional pain relievers are often not recommended due to gastric discomfort or drug sensitivities. And there's more yet! 
Exercise increases cognitive function. It immediately increases the level of Brain Derived Neurotrophic Factor (BDMF), a growth factor chemical that facilitates new brain cells and maintains long term growth.
  • BDMF increases a person's ability to maintain focus, or to switch their attention to something else. Most PlwD have a very short attention span unless they obsess, in which case, they can't stop easily.
  • BDMF may also increase a person's ability to access abstract thinking, allowing them to move out of the here and now and to imagine new situations, and to be more creative. (This hasn't yet been tested on people.)
Finally, research has shown over and over that regular exercise decreases the risk of cognitive dysfunction in the future. That is, it won't stop the dementia that's present, but it may prevent dementia from showing up in the future...and it may slow down any that's present. It doesn't really matter what kind you do. Just exercise. Do whatever type you enjoy most. Do it with the PlwD. Do it with family. Do it with friends. Do it by yourself. Just do it!

Thanks to Wendy Suzki for this information.

* Acronyms:
BDMF: Brain Derived Neurotrophic Factor
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, April 28, 2017

Dealing with Shadowing

One of the behaviors that can be very difficult for a care partner to deal with is shadowing, that is, constantly following, often very closely, and getting very anxious if the care partner goes into a different room, outside, or shuts the door to use the bathroom.

Charlie follows me everywhere. I can't even go to the bathroom by myself anymore. I hate it--it actually makes me feel claustrophobic. I tell him to stop, but he just ignores me. Marion

To deal with shadowing effectively, Marion needs to recognize the cause and address it. Like most BPSD, shadowing is driven by negative emotions: anxiety and fear. Charlie is not trying to irritate or control her. Address the fear, not the behavior! All of the suggestions in last week's blog on defusing negative emotions are applicable.

As Charlie's memory and perceptions become faulty, Marion becomes the one safe and known aspect in Charlie's life...his life raft in a sea of uncertainty. Anything she can do to maintain structure and stability will help. Last week's blog names several of these, such as establishing rituals and routines. In addition a care partner can:

Develop some alternative means of orientation such as identifying notes on furniture and doors.

Install white board for daily updates and messages so that the PlwD will be used to using these when calendars and clocks become useless. Using this can help to maintain orientation: "Today is Wednesday, June 1" or "I'll be at golf until 2pm."

Use distractions such as a favorite snack, a meaningful activity or looking at family photos. When the PlwD is past doing these, she can offer him a squeeze ball or a brightly colored scarf to hold, with a "Please hold this for me, honey."

Play recordings of the PlwD's favorite music or of the care partner speaking reassuring words.

Ramp up verbal reassurance and physical touching. Do this all day long, not just when the PlwD is hovering.

Try using an egg timer for short absences. Set the timer in front of the PlwD, and give them something to hold, like a book or a napkin. Say, "I'm going to the bathroom and I'll be back when the bell rings. Your job is to watch the clock." Don't say anything more--that is confusing! Set the timer and go. Make sure to maintain trust by being back on time! Then, reinforce: "See, I'm here even before I said I'd be back!"
If you still leave the PlwD alone, program a simple cell phone with your number on an easy dial button and give it to them before you leave. This will help the PlwD feel less isolated and deserted. (Even so, expect lots of calls...)

Marion also needs to take care of herself so that she doesn't radiate negative emotions that Charlie will mirror with increased shadowing. As care partner you need to:

Watch your attitude, and work to avoid your own negative feelings. "It's the disease, not my loved one" is a good mantra. So is "It's a symptom, not an intentional irritant."

Give yourself a time out if you begin to feel irritable, even if it is just turning your back or closing your eyes. Take a deep breath, repeat your mantra to yourself and then come back and give the PlwD a hug.

Build free time into your schedule, using the friends/family/daycare routines, the timer, white board and phone. Maintain routine and rituals religiously--for your sake, as well as the PlwD's!

Use some of that free time to attend a support group, and use it to vent and ask for help.

* 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, April 21, 2017

Dealing with BPSD: Hallucinations

Last week's blog was about how to defuse negative emotions. That's an important basis for dealing with most behavioral and psychological symptoms of dementia (BPSDs).
  • These emotions often drive the resulting acting-out behaviors such as aggression or withdrawal.
  • Without these energy-robbing feelings, the PlwD has more personal reserves for dealing with the dementia symptoms themselves, such as hallucinations.
There are also ways to deal with each symptom as well. Today's symptom is hallucinations.

My dad, Hank, has LBD. Lately, he's been having a lot of hallucinations. Most of them are harmless and manageable--workmen in his house or on his property. But some aren't. How do I convince him that there really isn't a man in his house holding a gun to his head? He thinks I'm nuts when I tell him it isn't real. Someone suggested that I use a spray bottle to get rid of the hallucinations, but that didn't work. Dad just thought it was silly. His doctor suggested Namenda. I plan to research Abilify too. -- Maude

LBD tends to attack a person's thinking skills even before it affects memory. When Hank first started getting hallucinations, he may have known that they weren't real. But as his ability to think abstractly fades, he can no longer tell the difference between hallucinations and reality. They are HIS reality and he is stuck with them.The more Maude tries to convince him of HER reality, the more frustrated, hurt, or angry he will get. (Think about how you'd feel if someone tried to convince you that you didn't really live in your home. Sounds absurd, doesn't it? Insulting, even, for them to even think they could do this. Well, that's how Maude's father feels when she tries to spray away his reality. "How silly and insulting!" he thinks. Maude has tried some things that don't work well.

These is what you can do:
  • Ask if the people are bothering your loved one. If they aren't, they are not the one with problem. YOU are. Relax. Let it go. Learn to deal with the hallucinations by accepting them as a part of the disease. (See previous blogs on hallucinations and delusions.)
  • Be willing to join the PlwD's reality and "play along" enough to get rid of an annoying or frightening hallucination. (See previous blogs on improv theater.) Do more or less what you would do to get rid of the situation if it were real. For instance, Maude can tell the man to take his gun and leave. Stand at the door and usher him out. Close the door. (Understand that this just takes care of this time. The "man with a gun" can show up again. Even if you took the gun away, her dad wouldn't remember that.)
  • Do consider dementia drugs like Aricept, Exelon, Razadyne and Namenda. They address more than just cognition. If your father also has Parkinson's, ask his doctor to review his PD drugs. They can also cause hallucinations. But your accepting attitude will help more than anything.
  • Be careful with antipsychotics like Abilify. Research shows that while it is not as dangerous for a PlwD as Haldol, it is more dangerous than Seroquel and about as dangerous as Resperdal, Zyprexa and Geodon. All of these drugs except Haldol are "second generation" antipsychotics often prescribed for BPSDs. All of them should be monitored very carefully to assure that they don't cause more problems than they solve. (reference)
  • Do take care of yourself. The PlwD mirrors your feelings. A calm, healthy, happy caregiver means fewer dementia symptoms, including hallucinations. (See previous blogs on dealing with emotions and on caregiver care.)
Future blogs about dealing with BPSD will be on shadowing and being in the moment,

* 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.

Saturday, April 15, 2017

Defusing Negative Emotions

Last week's blog was on emotions in general. If you haven't read it, or the previous one on thinking, please do so before you continue. Emotions are usually either negative or positive. The stronger negative emotions drive evasive behavior--often acting out behavior. The more subtle positive emotions bring comfort and peace. The goal is to avoid or defusing the negative emotions while encouraging the peaceful ones.

Negative emotions include anxiety, anger, confusion, frustration, fear. As dementia progresses the ability to judge more or less decreases and so a PlwD tends to feel most emotions at their highest level. I'm not just a little frightened; I'm AFRAID. I'm not sort of anxious; I'm FILLED WITH ANXIETY. I'm not irritated; I'm ENRAGED. The longer my feeling lasts, the more intense it gets. These are the feelings that drive the behavioral and psychological symptoms of dementia (BPSD). Therefore, it is in everyone's best interest to avoid triggering these feelings whenever possible, and to defuse them quickly when they do occur.

Negative emotions are usually a response to stress. The problem is that the PlwD may no longer be able to connect cause and effect--this requires abstract thinking. Thus, they may not know why they are acting angry, or frightened. Thus, the care partner's job is to recognize and avoid such stresses whenever possible and to end them as quickly as possible when they do happen.

You can't use reason or time-related solutions. Dementia takes away a person's ability to reason and which requires abstract thinking. It also keeps them in the here and now--they don't understand "later." But there are many things you can do. Start preparing as soon as you have a diagnosis...or sooner! Don't wait until the PlwD's abstract thinking is all gone to start.
  • Add structure to the PlwD's life by establishing daily and weekly routines and rituals. Structure promotes positive the feelings of comfort and safety and limits negative feelings of confusion and fear. The sooner in your journey you do this, the easier it will be to do.
  • Routines should include events that encourage sociability such as visits from family and friends (one at a time). Start adult daycare before it is needed, so that it can be accepted and even enjoyed.
  • Routines should also include meaningful activities, such as folding clothes, doing dishes, working jigsaw puzzles or playing a card game.
  • Add simplicity. Remove clutter, unnecessary knickknacks and furniture. Like structure, simplicity replaces confusion and fear with feelings of comfort and safety.
  • Develop a play list of the PlwD's favorite music. Music is very calming and thereuptic.
  • Learn what things are most likely to cause negative emotions for the PlwD, and avoid these whenever possible. (These will be different with each person. Dave may be afraid of dogs, Mary may get upset when she is rushed, June may do very poorly in crowds.)
In the present:
  • Continually use verbal reassurance. "I love you. You are safe. Everything is/will be OK." Compliments and positive messages need to be voiced over and over to be really effective. (It takes 6--or more--positives to counteract a negative.)
  • Practice hugging and loving touch. (Custodial touching doesn't count. That is, helping them onto the toilet, into a chair or into bed don't count. The touching needs to be volunteered because you want to, not because you need to. (Remember the 6 to 1 rule.)
  • Maintain routine and rituals religiously. Always have friends in on the same day at the same time. Always make folding clothes, or doing dishes, or whatever, the PlwD's job. Always ...
  • Make no unnecessary changes of furniture or decor. Replace old clothes with similar ones. Don't offer "new" foods. Variety is no longer fun!
  • Recognize acting out as a stress-related response, and look for the trigger, then deal with that, not the behavior.
  • Use music as much as you can, starting with that play-list of favorite songs, and going on to others that the PlwD enjoys. Music in the house is soothing and brings about positive emotions.

Finally, take care of yourself. An overextended, sleep-deprived, ill, or unhappy caregiver is a strong stressor for the PlwD. They will mirror your feelings and add their own feelings of inadequacy and fear of desertion. (See other blogs on caregiver care.)

Next week, we start talking about using your knowledge about emotions with specific symptoms.

* 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, April 7, 2017

Emotions Drive Behavior

Last week's blog was about thinking skills. Because we use abstract thinking to evaluate and make decisions about emotions, it is important to know about the different kinds of thinking. If you haven't already read last week's blog, please scroll down and read it now.

This week's blog is about emotions in general. Understanding how they work can help the care partner deal better with the often frustrating behavioral and psychological symptoms of dementia (BPSD).

Emotions drive behavior. This is the case with everyone. We run away or relax, depending on the emotions we have and how we chose to respond to them.

Negative emotions are motivators, and can be quite stressful. These emotions cause the body to secrete those "fight or flight," stress-increasing hormones. They are usually intense, drawing and holding one's attention, and demanding change, and pressing for movement away from the discomfort they cause.

Positive emotions are calming. They cause the body to secrete "feel good," stress-reducing hormones. These emotions are centering, bringing about relaxation and calmness. They are seldom intense; instead their mildness allows a person to stay in a comfortable space.

The ability to feel emotions does not fade. It lasts to the end of life. Apathy can weaken emotions, but they never completely disappear. As the ability to think abstractly fades, emotions take a greater part in a person's decision-making. That is, the PlwD acts on feelings without considering their validity.

It takes about six (6) positive events to counteract one (1) negative event. This is because positive emotions tend to be subtle and negative emotions tend to be intense. Ex: Six complements to counteract one complaint. Because in our culture, we tend to discount positives, it could take even more!

There are drugs that can affect emotions, but they usually have other actions too. Therefore, try non-drug options first. Even if they don't work alone, they will often decrease the amount of drugs needed for the effect you want.

With these principles in mind, a care partner can work to avoid or remove anything that might cause negative feelings while preserving or bringing about anything that might cause positive ones. The more comfortable and relaxed a PlwD is, the fewer BPSD they will have. That's actually the basis for stress management: decrease negative feelings and increase positive feelings.

Of course, it isn't always easy to identify what will elicit the negative feelings. As cognitive ability fades, emotions become more important as they replace reasoning. Normally, a person filters emotions through a variety of thought processes:

An event or thought causes an emotion, followed by an action based on the emotion. Mary, Joe and Dana see a tiger chasing a child on TV.
  • Mary, who does not have dementia, has an automatic fear response to the virtual event, but she immediately uses abstract thinking to determine that the tiger is not real and then to makes the decision to reject the fear and relax.
  • Joe, a PlwD*, has lost the ability to tell the difference between virtual and real event. He perceives the tiger as real--and becomes very frightened and agitated.
    Helpful hint: An understanding attitude, reassurance that the situation on TV had a happy ending, and lots of TLC is in order. Don't tell the PlwD that is isn't real. That just makes the situation worse. In the future, avoid exciting TV shows.
  • Dana, with MCI*, is able to identify the tiger as virtual, but can't get rid of the fear. It was the first piece of information she had about the tiger and she is stuck with it. The fear becomes free-floating agitation, an unpleasant negative feeling that is hard to defuse.
    Helpful hint: This is why even a person with even mild dementia should avoid exciting TV shows.
Interactions are often emotional. Someone says something that feels insulting to Mary and Joe.
  • Mary uses her thought processes to determine that she isn't sure about what the person said and so she asks for more information. The new information shows that the comment was meant as a compliment.
  • Mary may also decide that her first feeling was accurate, but didn't need action. For instance, the comment was meant to be insulting. She can FEEL insulted without acting on it. She can choose to ignore the feeling and move on.
  • Joe hears the insult and is stuck with it. He accepts what he hears literally and reacts automatically. He is unable to evaluate its validity, consider the need for additional information, or choose to ignore the feeling.
    Helpful hint: Distraction can often be a good tool for helping a loved one drop a negative feeling and move on.
Next week, more on emotions.

* 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, March 31, 2017

What Dementia Does to Thinking

Thinking can be divided into two types: abstract and concrete. Good thinking requires a balance of both. Children start with concrete thinking and as their brain develops, they learn to add abstract thinking.

Abstract thinking uses executive skills (judgment, reasoning, organizing, etc.) to develop concepts and ideas, and to reason. Abstract thinking expands into things that aren't material-- like time, possibilities, generalizations or comparisons. When a person becomes too abstract, they lose clarity. Politicians are good at being abstract--at saying a lot without saying much at all! Abstract thinking is about concepts, ideas built in the mind.

But as dementia progresses, executive skills are lost. This is especially true with LBD, where the loss of these skills often occurs before memory loss. When this happens, the PlwD is left with concrete thinking. Concrete thinking is based on information derived from the senses, what the person can see, hear or touch this minute.
  • Is literal: Idioms and generalities don't compute. A "hot potato" is just a very warm vegetable and "man" is about a specific man, not men in general.
    Application: Be careful how you word your requests or comments. What you actually say is what the PlwD gets, not what you may mean.
  • Is two-dimensional. Something either is or isn't. It is here or not here (i.e., nowhere), now or not now (i.e., never), mine or not mine (no one's).
    Application: Word your communications so that they are in the present, not the past or the future. "Let's go to the car." not "If we leave now, we can get home in time to watch your video."
  • Is single-minded. Can only focus on one issue at a time. Leads to obsession.
    Application: Distraction, deflection and bribes work well. If you can get the person to change their focus, they will let go of the obsession, at least for the moment. With LBD, memory may still be intact and so they may return to an obsession however.
  • Is closely connected to emotions, which aren't material, but can be felt. Unlike thinking, emotions remain.
    Application: Take careful notice of emotions, both yours and the PlwD's. Residual emotions, those left over from past events, will be the first piece of information a PlwD receives about an event.
  • Is based on the FIRST information received. If a person sees a dog and experiences fear, the dog is the cause of the fear--and thus, dangerous. The fear is often residual, i.e., from a past experience, but that doesn't matter.
  • Application: Try to discover the residual feeling that led to the conclusion, and work with that, not the conclusion itself.
    Is inflexible. Once something is decided upon, that's the way it is; there is only "what is," not "what might be."
    Application: Do not try to change a PlwD's mind. This is futile. Instead, align with the residual feeling, join the person's reality and move the action from there.
    Is impulsive. Without the ability to see cause and effect, there is no consideration of future consequences. If the thought arises, the action follows.
    Application: Refuse to be upset by inappropriate words or actions. Distract and deflect instead.
    Is about instant gratification. Without the ability to see the value of future benefits, now is all that counts. A spoonful of ice cream now is better than the promise of a whole bowlful later.
    Application: This can be used a distraction or bribe. Bribes work well with PlwD. With children, bribes can backfire when the child learns to manipulate. But dementia has decreased the ability to learn and so the bribe simply serves as a distraction.
    Lacks empathy. Without the ability to consider other ways of seeing an event or to oneself in the other's place, it's all about "me."
    Application: Don't expect the PlwD to be able to see that their behavior or words are painful to you. They are not trying to hurt you. In their view, they are the only one affected, the only one in pain.

Friday, March 24, 2017

Driving, Part Two: Making Quitting Easier

Last week’s blog was about how to know when it was time for the PlwD* to quit driving. This week’s blog is about how to make that happen when the time comes.

Right after John’s diagnosis, we talked about how LBD* would gradually erode the abilities he needs to drive safely. Once a month we’d go through those red flags and see how he was doing. The first time I answered “yes” to a question, he didn’t. But the second time, he did…and then he handed me his keys. “I guess it’s time,” he said.  - Janice

This is the storybook answer that we all hope for and seldom get. It usually goes more like this:

Don loves to drive but I’m getting worried. He takes chances and doesn’t see things. Yesterday, he ran a stop sign. “Don’t worry,” he told me. "We were the only ones there, weren't we?” I tried to tell him it was time to quit driving, but he won’t listen. I’d tell him I won’t ride with him anymore, but I’m afraid to let him drive without me. How can I make him quit?  - Marsha

Or even like this:

We talked about this early on, but now Hank can’t see that his driving is no longer safe. He says “Everyone makes mistakes now and then and I’m as safe as the next guy on the road…safer than most of these morons, in fact.” Yes, that’s one of the red flags I checked: He’s always getting mad at the “other guy” when he drives. -  Beverly

John and Janice did their homework early on and continued to address it regularly as a symptom of his disorder, not unlike poor balance. This made it possible for John to make “an adult” decision to quit driving when it became an issue. Don and Marsha didn’t talk about his driving until his dementia was so far advanced that he couldn’t see cause and effect…he only saw his need to continue driving, to continue to “be a man.” Hank and Beverly did their homework, but Hank avoided his problems by blaming them on others…a common ploy when dementia takes over and we don’t like to admit we aren’t as able as we used to be.

What are some of the ways a care partner can help the PlwD to make that crucial decision to stop driving?

Avoid reasoning, explaining or anger. It’s probably too late for these to work and they will simply make things worse. You are now dealing with someone who sees only the immediate positives and none of the possible negatives.

Mention grandchildren. “The grandkids are scared to ride with you” might do the job, when you saying you are scared doesn’t.

Make someone else the bad guy. Talk to the doctor and ask them to tell the PlwD that it is time to stop driving. Often this is all it takes. Of course, the PlwD may forget, and so you must act quickly to remove temptations.

Remove temptation. Hide the keys—or “lose” them, let the driver’s license lapse, and even disable the car if necessary. If you have more than one vehicle, get rid of the extra one. “We need the money,” or “grandson wants wheels” often work for explaining this.

Use physical disabilities: As we age, other physical disabilities, such as poor mobility, poor eyesight or poor hearing can play a part in one’s ability to drive. These are often more easily accepted by the PlwD as reasons for stopping driving than mental issues. Get a doctor’s support to identify these problems as physical hazards that make the PlwD’s driving unsafe.

Develop a “love of driving.” Make it a point to get into the driver’s seat first. Sometimes, this unspoken taking over of the driving task is easier for the PlwD to tolerate than discussing it.

When a PlwD vents about not being able to drive, avoid expressing your own relief or how their driving was unsafe—this makes you the bad guy again. Instead speak to their feelings and commiserate about how awful it is to lose one's driving privileges. This feels supportive and helps them to accept what is.

Finally, find as many alternatives to driving as possible. Of course, the most common one is that the care partner takes over the driving. But there are other options as well. Care facilities often provide transportation for adult day care. Most communities have handicap busses that can be scheduled for doctor’s visits and other events. Some volunteer organizations offer driving services for people who can’t drive. Talk to the local senior center staff. They will likely know who to contact.

* 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 foreducational purposes only. It should never be used instead of a physician's advice.

Friday, March 17, 2017

Driving Part One: When to Quit

When is it time for a person living with dementia (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.

Friday, March 3, 2017

Marijuana and LBD, Part 2: Preparation.

Here it is! The missing Part 2 of this 3-part series. Sorry I got it mixed up. (And no, it wasn't because I was sampling the MJ!)

OK, you've decided that medical marijuana (MMJ) may be just the right medication for your loved one, or at least worth a try, it is legal in your state, and you want to give it a try. But how do you do that? You can't just walk into a pharmacy and buy some. You can't get a prescription for it from your regular doctor and you know you don't want to buy the street stuff. (PLEASE, don't buy the street stuff for anyone with dementia or any other disorder where hallucinations, delusions and paranoia are common!)

As with any doctor's visit, it will some preparation. Each state is different, with different regulations, costs and requirements. Marijuana Doctors.com. is a good place to start. It provides needed information for each state for:
  • The laws specific to your state, and other state specific information such as a website, phone numbers and registration requirements.
  • The specific illnesses your state has stipulated to qualify for MMJ treatment. Check to see if your state covers any of your loved one's illnesses. If it doesn't, you may not qualify for use.
  • Obtaining a Medical Marijuana Registry Card. Some states allow you to get this online. Most require a personal visit to a marijuana doctor. Registration can cost from $25 to $150, depending on the state. It may cost less for persons on SSDI, or other specific groups. This just gives the patient, their caregiver or other legal representative the privilege of buying the MMJ. States that allow recreational marijuana may not require registration.
  • Choosing a marijuana doctor. Your state may not allow your regular doctor to recommend MMJ. Or, it it does, your regular doctor may not feel comfortable doing so. "Marijuana doctors and clinics" are listed for each state by community. Most states require at least one visit to this doctor to acquire the registration card and get a recommendation for the type and amount of MMJ to use for the specified illness. The initial visit can cost from $85 to $200. Renewal or followup prices are usually lower. This doctor "recommends" the MJ (vs. prescribe which is still illegal under federal law).
Find a dispensary where the medical marijuana is sold. Once you have your registration and recommendation, you must go to a dispensary to buy the drug. You can probably get a list of local dispensaries from your MJ doctor. The websites listed below this paragraph provide lists of dispensaries by location, as well as other information such as information about the various strains and their THC/CBD content. These sites and clinics are usually directed towards the recreational as well as the medical user. When you buy your MJ, remember that you want as high a CBD content as possible in most cases. Discuss this with the doctor, of course. Different strains also may work better for different problems and so be ready to explain just what you want the MMJ for. Is it to decrease anxiety? Or pain? Or....?

Websites that list local locations and other information:



Before the visit to the doctor:
  • Forward the medical records. Well before the visit, sign a release and ask the staff at your regular doctor's office to forward the medical records. Do this with each doctor your loved one sees, and for any doctors seen in the past for the illness you want to use the MMJ for. Wait a week and then call the MJ clinic to see if the information has arrived. Follow-up if it hasn't.
  • Forward records of x-rays, and other tests. Perform the same follow-up procedure as above.
  • Complete a medical history form. When you make the appointment, ask if you can obtain a copy of the medical history and fill it out at home. If a copy of their form isn't available, you can find a good, inclusive form at BestMedicalForms.com  (Keep this website handy, it has a good list of forms to use for other needs too!) You may need to fill out another form at the clinic, but you will at least have the info handy and it won't take as long.
  • Make a list of the therapies used and doctors visited for the illness you want to treat with MMJ.
  • Update your ER Kit. If you don't already have one, see our 7/15/16 and 5/29/15 blogs for what should be in your kit. Is the list of current drugs, doses and times accurate? Do you need to add anything new to the "avoid this drug list"? Have you found a helpful, short article to share with clinic personnel?
What should I bring with us to the marijuana doctor's visit?
  • Your ER Kit. Besides the fact that it has needed lists of presently used drugs,etc, you are probably going to be talking to someone who knows little about LBD.
  • The medical history form you completed
  • Your list of therapies and doctors pertaining to the present illness
  • Your loved one. Although a caregiver, spouse or other legal representative may obtain the marijuana once it is recommended, the doctor will want to see the patient. (Yes, common sense, but worth mentioning, just in case!)
Go back a couple of weeks for Part 3. Next week, will be a new subject.

* Acronyms:
MJ: Marijuana
MMJ: Medicinal marijuana
LBD: Lewy body dementia
THC: cannabinoid in marijuana that causes the high
CBD: cannabinoid in marijuana that has antipsychotic properites
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, February 24, 2017

Two Types of Lewy Body Dementia

Last week the blog was about the symptoms leading up to LBD. This week is about the two different types of LBD. Last week's blog mentioned that LBD can show up either before or after movement issues. This is important because how it originally shows up determines its name.

If the Lewy bodies follow that path described in last week's blog, and travels from the midbrain into the cerebral cortex, then the dementia that follows will be called Parkinson's with dementia, or PDD. However, about 50% of the time, the Lewy bodies start in the cerebral cortex and spread out from there. When that happens, the disorder is called dementia with Lewy bodies. In each case, symptoms depend on the area of the brain affected. That is, when the Lewy bodies are in a certain area of the brain, the symptoms will be similar, no matter where they started. Therefore, Lewy body dementia has become an umbrella term that refers to both kinds.

Dementia with Lewy Bodies (DLB): This describes the type of Lewy body dementia that starts without motor symptoms. Diagnosed onset is from age 40 through 80, with the average in 70's. It is not uncommon for a care partner to say later that they remember certain symptoms starting much earlier, especially RBD and anger management issues.

First symptoms are often not recognized because they seldom include memory loss:
  • Active dreams (RBD) can start many years before any mental problems are noticed. Jim's first wife, Annie, had these. They just laughed about them, and considered them an idiosyncrasy that didn't really cause any problems.
  • Executive skills gradually fade. These include skills such as decision making, doing sequences, planning, and thinking in general. One woman, a supervisor in a busy office had to take an early retirement. She had became unable to file reports; her ability to alphabetize in a sequential manner was damaged. People with LBD tend to loose these skills well before losing the ability to remember names and events.
  • Anger management issues are common, due to diminished impulse control and damaged thinking skills. That is, a person may perceive a slight or other problem where there is none and then become angry when others don't see the same issue. In the workplace, this can be serious. One man, a well-loved school counselor began angrily accusing his work-mates of lies and such. When his irrational behavior spread to his students, he was warned that unless he changed his behavior, he would be fired. Luckily, he had a driving accident that required him to see a doctor. The doctor diagnosed him with LBD and he was allowed a medical retirement.
  • Hallucinations are another early symptoms. They are common with most dementias, but tend to show up much earlier with LBD than others such as AD. In fact, they are often the first symptom recognized as a true problem, and the one that drives a couple to the doctor.
Parkinson's with Dementia. When person with Parkinson's (PD) begins to have mental issues, this is called Parkinson's with Dementia (PDD).We believe that everyone with PD will eventually develop some dementia symptoms...if they live long enough. That usually starts about 15 years after a PD diagnosis, but it can be much longer. Onset for PD can be as early as 30 but is more likely in the 60's. (However, people with early-onset PD are less likely to experience early dementia.) The person who arrives at dementia via Parkinson's, has some advantages and some disadvantages.

The advantage is that most people are aware that dementia can be a symptom of PD. Therefore, when the odd behavior starts, people around them are more likely to recognize it for what it is and not, as in the example above, a behavior issue that needs to be changed. With PDD, the first symptoms are usually attributed to PD alone because they occur so often with it. Active dreams and slower thinking both fit this category. But when hallucinations appear, a doctor will usually start considering the possibility of dementia. By then, executive skills will likely have been affected as well.

The disadvantage is that that PD doctors are movement, not dementia, specialists. Preserving mobility is their primary goal. However, PD meds are anticholinergics. That isn't a problem until the Lewy bodies get into areas of the brain where they begin causing cognitive symptoms. Then the PD meds may increase cognitive symptoms. With PDD, a person needs a doctor that understands that treatment is a balancing act, with some mobility forfeited for better cognition, and vice versa.

Mixed Dementia. When types of LBD are discussed, mixed dementia also needs to be addressed. The truth is that people usually don't have just one kind of dementia. Even if a person is only diagnosed with LBD, they are likely to have Alzheimer's as well. Or maybe they have vascular dementia. Each of these will have different early symptoms and this cause a doctor to have difficulty with the diagnosis. The bottom line is that if there is a possibility that a person has LBD, that is the one to be concerned about because of the drug sensitivities involved. If you treat a person as though their dementia is LBD, they will do fine, no matter what kind they have. If you don't, they could be given a drug that LBD doesn't tolerate well, with possibly dire results.

For a much more involved description of all of the above read our books (below).

Next week's blog will be more about the two types of Lewy body dementia...the kind that starts with PD and the kind that doesn't.

Acronyms:
LBD: Lewy body dementia
AD: Alzheimer's disease
RBD: REM sleep behavior disorder (also called Active Dreams)
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
MCI-AD: the form of MCI that precedes AD
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, February 17, 2017

Lewy Body Dementia Precursors

Last week the blog was about how dementia is a symptom of many different cognitive, or mental, dysfunctions, with the main players being Alzheimer's, Lewy body, Vascular and Frontotemporal dementia. Readers also learned that dementias like to hang out together and that even if a person is diagnosed with one kind, an autopsy will likely show that there was at least one more.

This week's blog is about the symptoms leading up to Lewy body dementia.

Like Alzheimer's disease (AD), LBD is caused by normal proteins that become damaged, and then, cause more damage. In the case of LBD, it is the alpha-synuclein proteins that "misfold" into Lewy bodies. These round sticky masses then attack certain neurotransmitters, the chemicals that pass information from neuron to neuron. While AD proteins tend to stay in the cerebral cortex, Lewy bodies migrate, and can spread throughout the nervous system. Thus, they cause a great variety of symptoms. What these symptoms are depends on where in the body the Lewy bodies are located.
One question we often hear is "What causes the proteins to misfold and turn into Lewy bodies?" Well, the answer to that appears to be two-fold. First, a person has to have the genetic tendency. And then they have to be exposed to an environmental toxin. (See the 11/7/14 blog, Genes and Environment, for a more thorough answer to this question. I'll also be talking about it again in a future blog about something called "telomeres.")

Chronic Constipation. Annie, Jim Whitworth's first wife, and his original reason for being on this journey, had chronic constipation as a young woman. Her more conventional LBD symptoms of hallucinations and poor thinking skills didn't appear for almost a half century later. One thinks of LBD being a "brain disease" but it is more a "nerve" disease. Since there are more nerves in the gut than anywhere else in the body, except for the brain, it makes sense that one of the first places Lewy bodies may show up is in the intestinal tract, which isn't nearly so well protected.

REM Sleep Behavior Disorder (RBD). The chemical switch that prevents movement during sleep is situated on the brainstem in the pons. When Lewy bodies find their way here, they damage the switch and people act out their dreams. They can be very active, hence the very accurate description of "Active Dreams." About 50% of those with RBD go on to develop LBD eventually. See our 11/02/12 blog, Active Dreams, for more about RBD.

Parkinson's disease (PD). PD is a movement disorder that occurs when Lewy bodies in the midbrain attack dopamine, a neurotransmitter instrumental in fine motor control. From 60% to 80% of those with PD will eventually go on to experience dementia symptoms. Many people with PD also have Chronic Constipation and or RBD. The more of these "precursor symptoms" a person has, the more likely dementia is. See our books (below) for more about PD.

Hallucinations. When the Lewy bodies travel a little further into the brain, they find the cerebellum, which has a lot to do with making sense out of what a person sees. Here, Lewy bodies interfere with this process and cause a person to hallucinate, or see (or feel or hear) things that aren't really there. These hallucinations can appear very realistic. Even so, a person can usually understand that although they see the little bugs or green men or lady on the sofa, no one else does--at first. Then as the Lewy bodies move into the thought processing parts of the brain, they begin to believe their hallucinations are real. See our books (below) for more about hallucinations.

Mild Cognitive Impairment (MCI). The Lewy bodies have found the cerebral cortex, the area of the brain where the ability to think clearly and do tasks is stored, causing poor decisions or the fumbling of familiar tasks (MCI-LB). If Alzheimer's is involved, MCI may start with memory loss (MCI-AD). In either case, a person can still function and take care of themselves.

Dementia: MCI becomes "dementia" when it interferes with a person's ability to provide adequate and safe self-care. In the case of AD, symptoms usually have to do with memory about things: words, dates, events and such. With LBD, they have more to do with task memory: the ability to perform once easy tasks. Lewy bodies also mess with one's thinking skills and delusions become common. People with hallucinations now believe they are real.

Now, the thing to remember is that with LBD nothing is firm. Every person experiences LBD differently. Any one of these symptoms can occur without the other, or in almost any order, although at least one of them usually occurs prior to the dementia. Lewy bodies tend to travel in the way I've described, but they often don't. They may skip a symptom, such as PD, and move on to the next, or they may travel in a different order. In fact, about 50% of the time, a person with Lewy body dementia will NOT have experienced PD first, although eventually, they will usually have some motor issues. When this happens, it is called Dementia with Lewy bodies.

For a much more involved description of all of the above read our books (below).

Next week's blog will be more about the two types of Lewy body dementia...the kind that starts with PD and the kind that doesn't.

Acronyms:
LBD: Lewy body dementia
AD: Alzheimer's disease
RBD: REM sleep behavior disorder
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
MCI-AD: the form of MCI that precedes AD
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.

Next week's blog will be more about the two types of Lewy body dementia...the kind that starts with PD and the kind that doesn't.

Saturday, February 11, 2017

What's the Difference?

We are often asked "What's the difference between Alzheimer's (AD) and dementia." Or between Lewy body dementia  and Alzheimer's. Or less often, between LBD and Parkinson's. The latest one was between LBD and Multiple System Atrophy. Today's blog is a list of definitions, along with how these conditions relate with each other. It is very basic and for many regular readers, the information in this blog and the next will likely be redundant but sadly, new people are joining the ranks of dementia care partners every day. I hope these blogs will help you sort out what dementia is and isn't.

Cognitive abilities: Skills we use to learn, remember, problem solve and pay attention, control impulses and communicate.

Syndrome: A collection of symptoms that occur together and characterize a condition but the underlying cause is not necessarily known.

Dementia: A syndrome, where there is a decline of at least two cognitive abilities severe enough to interfere with daily life. There are over seventy (70!) underlying causes of dementia. About 95% of these causes are Alzheimer's, Lewy body dementia, vascular dementia, and frontotemporal dementia. These dementias tend to occur together and a person seldom has only one kind. There are other causes, such as brain injury, hydrocephalus, brain cancer or HIV. Most dementias are not reversible but some, such as vitamin deficiencies, thyroid abnormalities and medical interactions, are. This makes obtaining a diagnosis important. Most dementias are progressive, but some are episodic.

Progressive vs. Episodic: Damage from progressive dementias causes a gradual degeneration. Damage from episodic dementias is an individual event and doesn't change. However, many events may occur closely in time to each other, making the dementia to appear to be progressive. An important difference is that episodic dementia can be kept from increasing if the cause is removed.

Most Common Types of Dementia:

Mixed dementia: The percentages for each dementia below add up to much more than 100% because most dementias are mixed. Where one kind dominates, or where a doctor is more familiar with one kind, that's what will be diagnosed. As all dementias progress, most symptoms will eventually be affected and they dementias become very similar.

Alzheimer's Disease (AD): Progressive. Up to 80% of all dementias. It attacks and kills brain cells and the brain actually shrinks in size. Early symptoms are cognitive--mainly memory loss.

Lewy Body Dementia (LBD): Progressive. Progressive. Up to 30%. It attacks certain messenger chemicals called neurotransmitters and weakens or kills them. It is more invasive than AD and has many more symptoms. Early symptoms vary from constipation to hallucinations to mobility issues and more.

Vascular dementia (VaD): Episodic. Up to 30%. Occurs when the brain doesn't get adequate oxygen, usually from a stroke. Many small strokes can cause the dementia to look progressive. Symptoms depend on the area of the brain deprived of oxygen. Lifestyle changes can often prevent further episodes and stop the dementia from progressing.

Frontotemporal dementia (FTD): Progressive. Up to 5%. It affects the frontal temporal of the cortex, where empathy is generated. Memory, and other cognitive skills may remain, but one's ability to see another's view or pain fades.

Next week the blog will be about the differences between LBD and other conditions such as PD and MSA. It will also discuss further the different types of LBD.

* Acronyms:
LBD: Lewy body dementia
AD: Alzheimer's disease
VaD: Vascular dementia
FTD: Frontotemporal dementia
MSA: Multisystem atrophy
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PD: Parkinson's disease
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, February 3, 2017

Marijuana and LBD, Part 3: Ways to Use it

The last two blogs have been about marijuana (MJ). Wow! I didn't know I'd need three blogs to cover this subject! This one is about the different methods of ingesting the drug. Again, there are a lot more than I'd have thought. Let's start with the most common:

Smoking: Recreational users like smoking because, besides being about the easiest and cheapest way to go, it is the most likely to facilitate its psychoactive properties. Smoking also exposes lungs to many risks. For these two reasons, we can't recommend smoking for the person with LBD.

Vaping: This is a process similar to that used by electronic cigarette smokers. It is much less risky to the lungs than smoking, but just as likely to foster psychoactive properties. (Of course,  a lower THC content predicts less psychoactivity. Thus, vaping MJ with a high CBD/low THC content might be considered. However, other forms of use are still likely better.

Edibles: You can add MJ to your own baking or teas, or you can buy products from cookies to popcorn to sodas with the MJ already added. Edibles do not irritate the lungs and have low psychoactive properties, making them good candidates for use. They can be very attractive to the sweets lover, and easy to use. With edibles, the effects are slow to arrive, although once present, they are long lasting.

Tinctures and sprays: These are alcohol extractions of the cannabis (marijuana) plant. Place a few drops under the tongue, or in a liquid like coffee, or even directly to the skin. (I interviewed a local doctor who advocates marijuana use for a variety of symptoms. He suggests this method as the best for a person with dementia.) These provide the instant relief similar to smoking when used sublingually, with a very low risk of psychoactive effects. Try out a small area first if you apply it directly to the skin, to test for allergies or irritations.

Topical applications: Marijuana dispensaries offer a variety of lotions, salves and creams, used to relieve localized pain and reduce inflammation. As with edibles, there is no risk to the lungs and limited if any psychoactivity. There's also some evidence that these topicals can provide better local relief than smoking. As with tinctures and sprays, test a small area for allergies and irritations first.

Capsules: Usually, the capsule contains CBD oil, which is neither water soluble nor easily metabolized. Therefore, the capsules should also contain turmeric oil, which facilitates metabolization. Hemp CBD oil is legal everywhere, but is a much lower quality than that from the MJ plant. Capsules are convenient if your love one can take pills easily. However, dose sizes are limited. Unlike the tinctures or the edibles, you can't cut the dose from a capsule in half.

Aromatherapy: Cannabis flower oil is high in CBD and can be used in a regular distiller. This method is probably not the best for pain relief, since the effect is mild and of course, it will affect everyone in the room. But it can create a calm, relaxing atmosphere.

This is a very broad overview of the ways to use MJ. Like most drugs and their use, it is really much more complicated and varies greatly with the individual and what you want it to do. Thankfully, the people in marijuana clinics are very helpful. They are especially used to questions from "new users," that is from people who likely never considered using what was, until lately, considered an illegal substance. Do ask lots of questions. You want to feel comfortable with whatever you choose to do and use.

* Acronyms:
MJ: Marijuana
MMJ: Medicinal marijuana
LBD: Lewy body dementia
THC: cannabinoid in marijuana that causes the high
CBD: cannabinoid in marijuana that has antipsychotic properites
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.

Sunday, January 22, 2017

LBD and Marijuana, Part 1

Now that marijuana (MJ) is legal in many states, we are beginning to get questions and comments about its use.

Bottom line, medical MJ is probably safer for the person with LBD than most pain, anxiety, or behavior management drugs and is therefore worth considering. It is not a cure and probably won't work to improve cognition, even short term.

MJ is NOT an anticholinergic. This is perhaps its biggest attraction for LBD families. It doesn't block acetylcholine,  the main brain chemical that LBD attacks. Thus, MJ starts out being more compatible with LBD than many drugs, including most of those for pain, anxiety and psychosis.

But what about MJ's high? Couldn't that cause more problems instead of fewer? Well, it turns out that there are two types of MJ: Recreational and medicinal. MJ is a naturally grown plant, that produces several "cannabinoids" or chemical compounds, the two main ones being THC* and CBD*. In nature, these two compounds balance each other.

  • THC is psychoactive, and can trigger a high, with hallucinations, paranoia and other psychotic behaviors. If a person is already displaying psychotic behaviors, such as hallucinations or anxiety, it may increase them. Although it is only mildly addictive chemically, it can be psychologically addictive. That is, it doesn't change body chemistry to where it requires more and more of the drug to get the same result the way alcohol does. However a person can become psychologically attached to the process of its use and the enjoyment of the high.
  • CBD is an antipsychotic that acts to counteract the high caused by THC. In some cases, it may decrease already present BPSD* such as hallucinations, delusions, depression and anxiety. However, we believe that CBD's value in this area is more about what it isn't than what it is: it isn't psychoactive and it isn't addictive.

Plants can be bred selectively to produce varying amounts of each compound.

  • Recreational marijuana is produced by cannabis plants bred to have such a high ratio of THC to CBD that the latter cannot stop the psychoactive qualities of the drug.
  • Medicinal marijuana is produced by cannabis plants bread to have such a high ratio of CBD to THC that it prevents any psychoactive effects.
  • Marinol, a synthetic marijuana, is mostly THC with no CBD at all.
  • CBD oil is oil made from low-THC, high-CBD plants. So far as we know, there is no straight CBD product. That is not a bad thing. While both THC and CBD act to treat a variety of issues, THC, with its psychoactive qualities buffered, is often the most effective of the two.

Marijuana has long been used as an effective treatment for:

  • Pain, including chronic nerve pain which is common with Lewy body disorders.
  • Poor appetite
  • Intestinal upsets, such as nausea.

Research is showing that it may also be useful:

  • As an anti-inflammatory agent. It appears to block the release of cytokines, substances that signal the production of inflammation. Thus, it may help with autoimmune diseases such as arthritis.
  • To decrease motor symptoms, such as tremor, rigidity and bradykinesia. The research for this is still very limited, but side effects appear minimal and so it might be worth a try. It only treats symptoms--its effect stops when the drug is no long used.
  • For maintaining circadian (sleep) rhythms. CBD works to improve alertness, especially in lighted areas. Medical MJ may help with excessive daytime sleeping, but it should not be taken before bedtime. THC tends to promote nighttime sleep, but medicinal MJ probably won't be effective and the recreational MJ's psychoactive qualities make it a poor choice for someone with LBD.

Next week, more about marijuana, how to find it and how to use it.

Reference:
Medical cannabis. Wikipedia. https://en.wikipedia.org/wiki/Medical_cannabis

* Acronyms:
MJ: Marijuana, or cannabis. A plant grown for its psychoactive and medicinal qualities.
RMJ: Recreational marijuana
MMJ: Medical marijuana
THC: tetrahydrocannabinol, the cannabinoid or chemical compound in marijuana that provides a high.
CBD: cannabidiol, the cannabinoid in marijuana that does not provide a high.
BPSD: behavioral and psychological symptoms of dementia

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

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, January 13, 2017

Treat? Oh Yes! Cure? Not Yet.

We love comments. Agree with us or disagree. That's great. But recently, we've been receiving comments from people advertising cures by this miracle herbal therapy or that patent drug. We cannot support such claims of a cure and no such comments will be published.

We support alternative and complementary therapies. We believe that such non-drug and drug-accompanied treatments can decrease symptoms and the need for drugs and increase quality of life. However, neither they nor any drug can, at this time, CURE diseases like Parkinson's, Lewy body dementia or Alzheimer's. These disorders are hidden for many years, with little or no symptoms, while the damage-causing proteins, such as Lewy bodies, grow and spread. By the time there are enough symptoms present for a diagnosis, the proteins are so numerous and widespread that a cure is as likely as one for Stage IV cancer.

A cure is coming, and some of the clinical trials now in the works sound very hopeful. For starters, researchers are working on ways to identify the presence of disease-causing proteins early on. This will mean that people who feel perfectly healthy will need to be tested...remember there are no symptoms for years!

Researchers are also working on ways to eradicate the damaging proteins, once they are found in the body. Started soon enough, there is hope that these treatments may actually provide a cure. Started after diagnosis, these same treatments could not promise a cure-- but they might decrease symptoms and improve quality of life. However all of this research has many years to go before it is available to the general public.

In the meantime, we will not publish comments advertising "cures." To do so is to encourage our readers to spend hope, money and effort uselessly. Instead, we urge you to investigate all the well-researched ways that non-drug therapies can improve the effectiveness of traditional drugs to decrease symptoms and increase quality of life for both the person with the disorder and their care partner.

* 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, January 6, 2017

LBD and Football: How Do You Vote?

Last week's blog was about how repeated concussions from playing football can cause LBD symptoms to show up sooner and be more aggressive. But even if LBD isn't involved, CTE* is very likely to occur, causing its own type of dementia and an early death. I believe this is a cultural issue. By making football a national sport, by making the players heroes and stars, we show that we care more for our entertainment now than we do for their future health. As a culture, we are encouraging our sons to unwittingly trade their old age and their very lives for our entertainment. We've become a nation of people joyfully sending our own sons out into the arena to fight the lion of football.

And that's why I boycott football. I believe it is the individual person, you and I, who will eventually make the difference. Not the players, whose short term vision is on the adulation and money the get now, not on the, to them, unlikely chance that they will eventually have CTE. Not the NFL, that makes the big bucks on game. Not the coaches, who need to keep winning to keep their jobs. No, it is up to each of us. When we stop supporting the game, it will either change drastically or it will stop being worth playing.

One of the questions I get is, "Well, what about other sports. Boxing, for instance." Well, boxers use their fists as weapons. Football players use their heads. Even when the player leads with his shoulder, the head will absorb some of the impact. A recent article in our local newspaper reported that the average impact speed of a football player tackling a stationary player is 25 mph, compared to a professional boxer's punch of only 20 mph. If you deduct several mph for the average boxer's punch, the difference will be even greater.

One way that many of our local schools are trying to reduce concussions is by providing better helmets. This is no small thing; these helmets cost from $400 to $600 each! But the consensus is that even with the better helmets, concussions are likely to be an ever-present issue. It will continue to be an issue as long as players use their head as a weapon. The article suggests better education of coaches and players about the risks and coaching proper techniques, but it goes on to say that support for this is poor because "People are used to playing the way it is played."

Spectators are used to the violence and expect (demand?) it. I've never been a spectator sports fanatic. And so I'm at a disadvantage now, in my effort to boycott football. I can't say I used to love it but stopped when I learned how it damaged our children. But Jim, now, he really enjoys a good football game. He still watches. Yes, you can see how well my boycott is working. Even my husband, who has been active with Lewy body dementia since 2003, still watches football! But that means I can use him as a guinea pig. "Why do you watch?" I ask.

"It's exciting," he says.

"But, knowing what you know, how can you continue to watch?" I ask.

He shrugs. It's there. It will be there whether he turns the TV off or not. And so he turns it on.

I remember back to the 1980's when smokers were in the majority and it was considered bad form for non-smokers to complain. That changed when researcher found that smoking was bad, not just for the smoker, but for anyone around them. Non-smokers became more verbal. Restaurants started banning cigarettes. We voted higher taxes on cigarettes. People began to quit, one by one. Eventually, smokers became a minority.

I think we have to do the same with watching football. We have to accept our responsibility just as smokers had to accept theirs. Each person who watches football on TV or in a stadium helps to turn our young men into eventual dementia patients.

That's pretty extreme, you say? You say that this is the life they chose? That they get paid good money for it? Besides, I'm not responsible for these men. This is America. They have the right to choose to play or not. Who am I to stand in their way?

True. But, what young man really thinks about their old age at 18 or 20? Or believes that in a few years they will have dementia? Or turns down big bucks now because in 10, 20, 30 years they may have major health problems? We make it much too attractive!

Ah, you say. We aren't doing anything. It's the NFL that makes it attractive. That pays the big bucks.

Yes, but would they pay those big bucks if the TVs stayed off and the stadiums were empty? What are YOU going to do? How are you going to vote? Will you vote for more dementia, or less? You vote one way or the other every time you watch or don't watch a football game. You can't opt out. You DO vote. How are you voting?

Reference: Decker R: Better helmets still not solution to concussions. Cronkite News. Arizona Republic. The Weekend. 12.31.16.

* Acronyms:
LBD: Lewy body dementia
CTE: chronic traumatic encephalopathy

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.