ACCT-AD Disclosure Guidance

Script to discuss mild cognitive impairment

“Thanks so much for your patience as we have collected all the information we need to assess your complaint. Now that we have gotten a full description of the problem and we have gotten results on the blood tests and brain imaging results [can refer to MRI or CT scan, as appropriate], this is a good time to review what we have found and discuss what is causing these problems.

Before I tell you what I think about the problems we’ve been discussing, I think it would be good for you to tell me what you are hoping for in this discussion. Do you have your own theories about what is causing the problem that you would like me to address? Are there specific diseases that you are worried about? Are there other specific questions that you would like me to answer if I can?”

“These are all great questions. I think our discussion will address some of them today, but we may talk about some of these questions during future visits. To start off, the answer to many of these questions starts with trying to establish the cause of the problem. First, it’s helpful to talk about terminology. In medicine, we often use a term called dementia. The word dementia means that a person has had worsening problems with memory or thinking, and that the problem has gotten bad enough that it is preventing people from doing their normal daily functions, like working, or paying bills and similar tasks. The term dementia is important, because when a person has thinking problems that are bad enough to be called dementia, there is always some disease that is affecting the brain’s function and causing the problems. These include various types of medical problems in the body that also affect the brain, such as problems in body chemistry, vitamin deficiencies, and infections, and there could be various kinds of problems that happen in the brain specifically, like brain tumors and strokes, and also diseases that we call neurodegenerative diseases, such as Alzheimer’s disease. Neurodegenerative diseases cause the nerve cells to shrink and not communicate well with each other, and because of these problems, the brain cannot do its job as well as before. The reason that this happens is that there are proteins that are building up in the brain and injuring the nerve cells. Proteins are chemicals, or building blocks, that normally do certain jobs in the brain, but in neurodegenerative disorders they change and instead of doing their normal jobs they start to injure the nerve cells. Alzheimer’s is one kind of neurodegenerative disease that happens when certain proteins start do work badly. There are other neurodegenerative diseases, for example Parkinson’s disease, that happen when other proteins start to work badly. Each of these diseases is caused by a different protein going bad. These changes cannot be seen by most kinds of testing, including most kinds of brain imaging, but we know they occur because researchers have looked at the brains of many people who had memory problems and then died and they have seen these neurodegenerative changes.

In your case, you do have some problems with your memory that seem to be a bit worse than we would usually see in someone your age, but it’s not affecting your everyday abilities, and so it’s not severe enough to be called dementia. BUT, it was still important to do a thorough assessment to see if there is any specific explanation of your complaints from a general medical problem that we might have found through blood testing or a brain scan.“

“In your case, we identified XXXXXXXXXX, which can be associated with cognitive complaints. Hopefully, this is the main cause of your problems, and it is not a neurodegenerative disease. So, the first thing we should do is try to address this issue by XXXXXXX (referring, treating as appropriate) and then seeing if your [memory or other thinking problems] improve.”

“We did not find any evidence for a specific general medical issue that can explain your complaints. This happens a lot. When someone has complaints that are not severe enough to be called dementia, it is difficult to be sure whether this is due to a neurodegenerative disease. Research shows that some patients with these types of cognitive changes that are not severe enough to be called dementia are already accumulating the proteins associated with neurodegenerative disease. In these cases, the memory does get worse over time and people do eventually develop dementia. On the other hand, normal aging does cause changes in thinking, and many patients with milder cognitive changes do not appear to have any neurodegenerative diseases and maintain the same thinking abilities for many years, and some even improve. It is very difficult to decide which patients might have these neurodegenerative proteins and to predict who might get worse over time. This means that we have to check in with you every few months to see if the memory or thinking problems are getting worse.

Whether you have a neurodegenerative disease or not, it’s important to think about what you can do to prevent the problem from getting worse. Research shows that things that are bad for your heart, like smoking, high blood pressure, diabetes, and being overweight, are also bad for your brain. Most researchers believe that being careful about avoiding these problems, and treating them if they are affecting you, can cut down the chances that your memory and thinking will get worse, even if you have proteins in your brain that cause neurodegenerative disease. Therefore, the most important thing we can do right now is to do everything we can to lower your risks to your heart and brain. In your case, I think it is particularly important to focus on XXXXXXXXXX [recommendations tailored to the individual regarding smoking, blood pressure, weight, diet, etc.].

Another question we should talk about is whether you want to know more about whether you could have a neurodegenerative disease. We don’t have a way of knowing the answer for every one of those diseases, but we do have tests that can tell us more about the possibility that you have Alzheimer’s disease. There is now a blood test that tells us whether you have one of the proteins that causes Alzheimer’s disease building up in the brain. This test can only tell us about Alzheimer’s disease, and not any of the other neurodegenerative diseases. So if the test is abnormal, it says that Alzheimer’s proteins are building up in the brain. If it’s normal, there could still be other neurodegeneration proteins building up in the brain, but probably not Alzheimer’s proteins.

If the test shows Alzheimer’s proteins, that doesn’t mean we know everything about your future. It does mean that we have to worry that your memory and thinking abilities may get worse in the future, but we can’t know for sure if that will happen, or when it will happen if it does. Knowing that Alzheimer’s disease proteins are building up in the brain might be helpful to make sure you and your family are prepared in case that does happen, and it can also help us think about special treatments that might be possible. If necessary, we can refer you to a specialist to think more about these treatments.

Script to discuss the diagnosis of dementia

“Thanks so much for your patience as we have collected all the information we need to assess your complaint.  Now that we have gotten a full description of the problem, and we have gotten results on the blood tests and brain imaging results [can refer to MRI or CT scan, as appropriate], this is a good time to review what we have found and discuss what is causing these problems.

Before I tell you what I think about the problems we’ve been discussing, I think it would be good for you to tell me what you are hoping for in this discussion. Do you have own theories about what is causing the problem that you would like me to address? Are there specific diseases that you are worried about? Are there other specific questions that you would like me to answer if I can?”

“These are all great questions. I think our discussion will address some of them today, but we may talk about some of these questions during future visits. To start off, the answer to many of these questions starts with trying to establish the cause of the problem. First, it’s helpful to talk about terminology. In medicine, we often use a term called “dementia.” This is not really a complete diagnosis but just a description of the problem. The word “dementia” means that a person has had worsening problems with memory or thinking and that the problem has now become severe enough that it’s preventing people from attending to their normal daily functions, like working or paying bills and similar tasks. The term “dementia” is important because when a person’s thinking problems get severe enough to be called “dementia,” there is always some disease that is affecting the brain’s function and causing the problems. The process that we went through was necessary to try to find this cause. There are many possible causes of dementia. These include various types of medical problems in the body that also affect the brain, such as problems in body chemistry, vitamin deficiencies, and infections, and there could be various kinds of problems that occur in the brain specifically, like brain tumors and strokes. As you know, we have done a thorough examination, blood tests, and a scan of your brain. We did not find evidence of any general medical problems in the body that could explain your memory complaints, and the scan did not show any strokes or brain tumors.”

“Once we have considered the kinds of problems that could show up on those tests and not found any evidence of those kinds of problems, we have to ask ourselves whether there are diseases that could cause the kind of trouble you are noticing but would not show up on any of those tests, and the answer is that there are diseases like that. We generally call them neurodegenerative diseases: “neuro,” meaning it is affecting the nerve cells, and “degenerative,” meaning that it is causing more and more trouble over time. Nerve cells are tiny structures in your brain that work together to take care of all of your thinking and movement. There are billions of them in the brain. Neurodegenerative diseases cause the nerve cells to shrink and not communicate well with each other, and some of the nerve cells even die, and because of these problems, the brain can’t do its job as well as before. The reason that this happens is that there are proteins that are building up in the brain and injuring the nerve cells. Proteins are chemicals that normally do particular jobs in the brain, but in neurodegenerative disorders, they change and instead of doing their normal jobs they start to injure the nerve cells. These changes cannot be seen by most kinds of testing, including brain scans like a CAT scan or MRI, but we know they occur because researchers have looked at the brains of many people who had memory problems and then died. They have seen these neurodegenerative changes.

The most common neurodegenerative disease is Alzheimer’s disease. This is caused by the accumulation of two proteins: one called a-beta and another called tau. Even though we cannot easily see these proteins, we can know that they are there because of their effects on the brain. Researchers have shown that when these proteins that cause Alzheimer’s disease begin to affect the brain, they do not affect the whole brain at once, but they tend to start by affecting the parts of the brain that have to do with memory. That’s why the earliest changes in people with Alzheimer’s disease are usually memory problems. As the disease spreads to other parts of the brain, it can cause other symptoms. In your (or your family member’s) case, the problems you have told me about and the memory [or cognitive] tests tell us that there is a problem that began with memory difficulties, and it has slowly worsened over time. It is now affecting daily function, and therefore, it’s severe enough to be called “dementia.” When we see that kind of pattern, the cause is usually Alzheimer’s disease, and so that is why this is the most likely thing to explain your problem as well.

Before we move on to talk about treatments, do you have any questions about the information I gave you? I know it’s a lot, and it’s very complicated, but if there was anything that didn’t make sense to you, please go ahead and ask.”

If you want to know more about the possibility that Alzheimer’s disease is causing the problems, we do have a blood test that tells us whether you have the proteins that cause Alzheimer’s disease building up in the brain. This test can only tell us about Alzheimer’s disease, and not any of the other neurodegenerative diseases. So, if the test is abnormal, it says that Alzheimer’s proteins are building up in the brain, and that Alzheimer’s disease is probably at least one of the problems that is causing your [memory or thinking] changes. If it’s normal, there could still be other neurodegeneration proteins building up in the brain, but probably not Alzheimer’s proteins.

Knowing if there are Alzheimer’s disease proteins in the brain can help us be more prepared for what might happen in the future, and help us to decide what treatments we can use. If necessary, we can refer you to a specialist to think more about these treatments.

Script to discuss medication treatment for dementia

“Let’s talk about treatment options. There are medications available that can help with symptoms of dementia. While these medications help with the symptoms, it is important to realize that they do not slow down the damage that is happening to the nerve cells. They just adjust the chemistry of the brain to help the brain work better.

There are two types of these medications which target different chemicals (neurotransmitters) in the brain. You can take one type or the other or both, but it is important to start one first, see how you react to it and whether you will stay on it, and then later decide on the second type of medication. Each of these medications will require you to start slowly and build up to a final dose. If side effects prevent you from continuing to take the medication at any point, you may not be able to take them, but often side effects are relatively mild and go away once your body gets used to the medicine. I will discuss common side effects before prescribing any of the medications. It is important to know that you can stop the medications suddenly at any time (without tapering) if you need to because of a side effect, especially an allergic reaction.

Most people start with a type of medication called a cholinesterase inhibitor. The ones we use most commonly are donepezil (Aricept), galantamine (Razadyne), or rivastigmine (Exelon). All of these medicines work by boosting the level of a chemical in the brain called acetylcholine, and this helps the brain cells work a bit better. These drugs don’t usually stop memory loss or make memory better, but they can slow down the worsening of your memory. This means that when you are taking the drug, you have to know what to expect. Because they don’t make your memory better, bu it is hard to know if these drugs are helping you because you wouldn’t know how your memory would have been a few months from now if you were not taking the drug. You just have to take the drug based on confidence in the research that showed that the average patient with Alzheimer’s disease is better off on the drug than if they were not on it. Even if you are not noticing any improvement, as long as the drug doesn’t cause side effects, we recommend staying on it. Unfortunately, we have been using these drugs for many years now, and we know that even though it keeps patients a little better than not being on the drug, people still decline over time and these drugs can’t stop that. This is why we continue to do research to find even better drugs. We can talk about that in a few minutes.

The most common side effects include nausea and diarrhea; sometimes people get over this after a week or so, but other people do not. Sometimes different versions of the drug like patches on the skin are better tolerated than others but not always. Sometimes we can stop the medication and restart on a smaller dose and work you up to a full dose more slowly as your body gets used to it. These medicines can also cause slowing of the heart rate which can cause dizziness, shortness of breath, or even chest pain – if you develop any of these, please stop the medication until you contact me. Because they can cause nightmares, we recommend that you take them in the morning (though your pharmacist may put a label on it to take at night – that is because some people have mild nausea and prefer to sleep through it).

The other type of medication is called memantine (Namenda). This works in a different way and can be taken with the medications I just described, although they should be started one-by-one so that the effect of each one can be judged individually. Memantine is generally well tolerated, and side effects tend to vary from patient to patient. This is taken either twice daily (generic) or in a sustained release format once a day (brand name). Usually, memantine is added later when the symptoms are a bit more severe, so it makes sense to concentrate on the cholinesterase inhibitors now and think about memantine in the future.

There are also drugs can remove some of the abnormal  proteins that build up in the brain with Alzheimer’s disease. They can’t be used to treat any other neurodegenerative disease. These drugs have to be given into your vein at a special center at least once a month for at least several months. You have to be carefully monitored, and get MRIs every few weeks. Even these drugs don’t completely stop the disease, but they do slow it down, so that your memory would probably be better after a few months of taking the drug than it would have been if you had not been taking the drug. These treatments can have serious side effect that can even be life-threatening, but most patients taking the drug don’t have these serious side effects. Because of these side effects, the drug is not considered safe for all patients. I can give you some information about these drugs so you can read about them If you are interested. If you are, then we can send you to a specialist that would give you more information, and do decide if these drugs would be reasonably safe for you, and if they think it is, they can potentially start you on that kind of treatment.

There are also drugs can remove some of the abnormal proteins that build up in the brain with Alzheimer’s disease. These drugs have to be started early in the disease to have a change of working, and they can also have very serious side effects, including causing brain swelling and bleeding. In your case, I do not think you are a good candidate for these drugs because [your reason here, could be “the problem with your memory has been going on for a while and is too severe to be helped with these drugs”, or “your other medical problems would make it very risky for you to be on these drugs”, or other appropriate reasons].

Many people are interested in clinical trials. It can be a good way to advance research. Some studies are drug (medication) trials and others are non-drug studies. Two good resources for clinical trials are clinical trials.gov and the Alzheimer’s Association. You can see which trials you might qualify for. Please let me know if you have any questions.

That is a very good question. While there is no specific research indicating that specific brain exercises can improve dementia, it does make sense that using the brain helps keep it functioning. It is recommended that patients stay as active mentally as they can. Particularly in early dementia (and mild cognitive changes), mental activity is useful. This should not feel punishing (that is, it should not be some thing that you fail at each time you try) and should be something that you enjoy and look forward to. This can include games, puzzles, word searches, as well as discussions with friends and family or computer games.

Physical exercise is also useful not only for physical health but for mental health – brain function and mood both can get better with physical exercise. Once again, aim for something that is pleasant and brings joy. Possibilities include Silver Sneakers, dancing, aquatic aerobics (good for those with arthritis), walks with family or friends, chair aerobics, yoga.

Lastly, and most importantly, is socialization. Many patients tend to withdraw as the disease gets worse. It is important to keep contact with family and friends. This can significantly improve your mood and ability to interact with people. The mental and physical exercise above can easily be done with friends and family, which would make it even more helpful to the brain.

That is a very good question. There is evidence that a healthy diet, particularly a Mediterranean diet, lessens the chance of developing Alzheimer’s disease and is healthy for the heart as well, so it makes sense to follow that diet if possible. Supplements are more complicated. We have checked to see if you are low in specific vitamins (such as B12) and have recommended supplementation if needed. As far as other supplements go, none is currently recommended or clearly proven to be helpful. Some supplements can be harmful, and some can interfere with your medications. The best way to learn about the latest information is to visit a reliable website because these recommendations can change. Two good sources are The Mayo Clinic (https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/diagnosis-treatment) and The Alzheimer’s Association (https://www.alz.org/alzheimers-dementia/treatments/medications-for-memory)  It is important to let both your pharmacist and me know what supplements you are taking if you decide to take some.”

Script to discuss dementia related behavioral symptoms

“I wanted to review some of the symptoms that often accompany the memory and thinking symptoms we are most familiar with when we think of dementia. These are changes that tend to affect how someone behaves rather than how they think or remember. They don’t occur in everyone, but I want to mention them, so you are prepared if you observe them and aren’t surprised. Have you heard about these or noticed any of these?

It is important to recognize that these changes are due to the same brain disease that causes memory problems and are not being done intentionally by the person with dementia. In fact, it often reflects their discomfort and anxiety with interpreting the confusing environment around them. This frustration and confusion are often expressed with an increase in irritability, anger, or lack of cooperation. The severity of these symptoms can range from being annoying to being unsafe – for example, repeating stories is annoying, but it isn’t a risky behavior. However, we want you to be sure to tell us about any symptoms causing you to worry about your safety or the safety of your loved one since they may require immediate attention. We can help you figure out what interventions might improve the problem and how urgent they are. Please be sure to let us know if you notice them.

If these kinds of problems are happening, there are a few approaches we can try. Many people would think first about medications. You should know that this may not be the most useful way to deal with these problems. A lot of research has been done to look for specific medications that can help with these behavioral problems without causing a lot of side effects, and the research hasn’t identified specific medications that are very good for this. The best thing is usually to start with other ways to deal with the problem, instead of medication, and these can be quite helpful.

Often, we can look for things we can change in the place where they are staying, or ways that we can change how we deal with them, instead of expecting them to change. For example, learning new communication techniques that are calm or simple can be helpful. Simplifying the environment so it is not as busy and distracting can be helpful – like reducing background noise or clutter, and providing less complicated schedules. It is best to avoid confronting what may seem like false beliefs or misinterpretation as this can often only make the person more stubborn about the issue. Changing the subject or distracting the person with a different activity may be more successful. These solutions are not always obvious or easy to learn; sometimes they are actually the opposite of what you might think. There are classes and reading materials by experts that you might find helpful. I’d be happy to share some places for you to begin if you would find it helpful.

In general, we cannot expect anything that we try for these behavioral problems to eliminate or completely fix the problems. If we get a 25 to 50 percent improvement, that would usually be considered pretty good, so it’s important to think about that when trying to deal with these problems. We often try the non-medication things first, because they are often successful and have no risks or side effects. However, if the behaviors are causing a big problem, or endangering someone, we may consider medications or other treatments. If we have to try medications, it may take a couple of trials of different medications until we find one that works, and it is often hard to find one that quiets the problem without a lot of side effects, but we can often find something that at least allows better care for the patient and maintains safety.”

“As a healthcare provider, my job is to keep my patients healthy and safe. I also have a public health duty to keep others in our community safe. I don’t want to see you get hurt or hurt anyone else. At this time, based on what you and your family tell me and/or today’s evaluation, I have to advise you that I do not think you should be driving, and I am going to ask you not to drive until the evaluation of your memory and thinking is completed and we know more.”

OR

“I suggest you have an evaluation that shows you are safe to drive. I can refer you to a driver evaluation program, run by an Occupational Therapist who specializes in assessing driving skills and providing adaptations and other assistance to help people continue to drive safely.

I know that this is a very difficult change to even consider, and I appreciate the challenges that it may present. However, your safety and that of others have to be my primary concern. We will definitely discuss this again. Do you have any questions?”