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

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.