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Previously published as part of THE ALZHEIMER’S ACTION PLAN.
What would you do if your mother was having memory problems?
Five million Americans have Alzheimer’s disease, with a new diagnosis being made every seventy-two seconds, with millions more at risk. Although experts agree that early diagnosis and treatment are essential, families ...
Previously published as part of THE ALZHEIMER’S ACTION PLAN.
What would you do if your mother was having memory problems?
Five million Americans have Alzheimer’s disease, with a new diagnosis being made every seventy-two seconds, with millions more at risk. Although experts agree that early diagnosis and treatment are essential, families don’t know where to turn for authoritative, state-of-the-art advice and answers to all of their questions.
Now, combining the insights of a world-class physician and an award-winning social worker, Living Well After an Alzheimer’s Diagnosis tells you the truth about Alzheimer’s treatment, living well with early-stage Alzheimer’s, finding peace of mind during the middle years, and answers the 40 most common questions.
Clear, compassionate, and empowering, Living Well After an Alzheimer’s Diagnosis is a must-read.
Few Alzheimer’s patients get state-of-the-art care.
—HEADLINE, PSYCHIATRIC NEWS, 2001
In the past decade, we have made tremendous progress in developing treatments for the symptoms of Alzheimer’s disease. Researchers have completed more than a hundred clinical trials testing various treatments for Alzheimer’s, which have taught us a great deal. Just as in cancer or heart disease, Alzheimer’s treatments are based on the latest science and are tested rigorously using standards set by the U.S. Food and Drug Administration, as well as by worldwide government agencies. Older treatments are being replaced with newer and better ones.
Despite all these advances, many people still see Alzheimer’s as a part of normal aging. People say a relative or friend is “senile” or that he or she has “old-timer’s disease.” Even doctors (trained prior to the advances in treatment) and insurance companies can share this fatalistic view. That may be one of the reasons why about half of the people with mild-stage or moderate-stage Alzheimer’s are not taking any of the FDA-approved medications.
We want to correct misperceptions about Alzheimer’s in a way that helps people with the disease and their families the most. The two most important points about Alzheimer’s treatment:
1. Early treatment is important.
2. Treatment can help people at all stages of Alzheimer’s.
THE TEN BIGGEST MYTHS ABOUT ALZHEIMER’S
Here are ten of the most common fallacies and their antidotes (the true story).
Myth 1: Dementia is just old age, so it is best
to leave the person alone.
Truth: Because dementia, especially Alzheimer’s, was traditionally viewed as “senility” or normal aging, physicians and families long held that dementia was untreatable or not worth treating. As we discussed in the beginning of the book, we now know there are numerous dementia copycats, including depression, vitamin deficiencies, and thyroid problems, that can be improved or even halted through treatment.
Myth 2: Alzheimer’s is untreatable.
Truth: Alzheimer’s is incurable, but it is not untreatable.
Myth 3: There is no need to start treatment
early—it’s all downhill anyway.
Truth: Studies suggest that people who start treatment early usually remain better off than those who start treatment months later (more on this topic below). That is why most expert doctors begin treatment right after a person is diagnosed.
Myth 4: Treatment will stop the course of the
disease or bring someone back to normal.
Truth: Unfortunately, the available medicines cannot do this, but they can help people with Alzheimer’s to think more clearly and function better and longer than they would have without the medication.
Myth 5: Memory pills should be stopped after
a few weeks if there aren’t any clear benefits.
Truth: It may take from several months to a year or longer to tell if a memory drug is working.
Myth 6: Drugs for Alzheimer’s work only in the early
stages, so there is no use treating people in the
moderate or severe stages.
Truth: These drugs are effective for treating moderate and severe Alzheimer’s. They may help people in the moderate stage even more than those in the early stage. People at every stage should have access to any treatment that helps.
Myth 7: Vaccines and stem cells to cure Alzheimer’s
will soon be on the market, so let’s just wait until
Truth: It will be years, if ever, before vaccines and stem cell therapy are available. To date, researchers have found no experimental treatment that improved thinking and memory better than the four drugs already in use: Aricept, Exelon, Razadyne, and Namenda.
Myth 8: It is worth trying a memory supplement
or herbal pill before trying these drugs.
Truth: It’s best to make a choice such as this after you discuss it with your doctor. Supplements or herbal treatments vary widely in their benefits and risks, and none are as well studied for Alzheimer’s as are the four prescription drugs.
Myth 9: Not seeing any change after treatment
means the drug is not working.
Truth: The course of untreated Alzheimer’s is a progressive decline. So not seeing a change is usually a good sign that the disease has stabilized, at least for the time being.
Myth 10: The side effects of the current drugs
are too strong to justify taking them.
Truth: Most beneficial drugs have side effects, and most people generally tolerate Aricept and Namenda quite well.
WHAT YOU CAN EXPECT FROM THE MEDICATIONS
In general, the drugs allow people with Alzheimer’s to function at a higher level for a longer period. Depending on the stage of the disease, you may see one or more of the following:
• Actual improvements and stabilization in the person’s mental functioning are more likely in the earlier stages of the disease. In one study of people with mild and moderate Alzheimer’s, 82 percent of patients on medication improved or stayed stable for six months, compared to 59 percent on placebo. Of participants on medication, 58 percent showed a meaningful improvement after six months, as did 28 percent of the placebo recipients.
• Among people who are in the moderate to severe stages, the chance for actual improvement is lower than for people in the mild stages, but symptoms may stabilize or get worse more slowly. In one study, about 40 percent of people on medication improved or stayed the same for six months in their cognitive abilities compared to about 22 percent on placebo.
• People who take medications are less likely to develop behavioral problems than those who don’t.
• Care providers may find that the person with Alzheimer’s requires less time to care for.
• The brain’s memory center shrinks less quickly, though researchers have yet to prove that.
Side effects vary among the various drugs;
Finally, as much as we wish you could, you cannot expect the following from the medications:
• A complete reversal of the disease, that is, “getting back to normal”
• No further decline
• Dramatic or overnight benefits. This is possible but not likely, and if it happens, it won’t last more than a few months.
FAMILIES KNOW BEST
Family members see benefits in their relatives taking Alzheimer’s medications. The reported benefits include:
• More alert and motivated
• Less forgetful, less frustrated
• “Holding her own”
• In a better mood, less depressed
• Worrying less, is less pessimistic
• More interested in life and derives more pleasure from it
• Easier to get going, gets ready more quickly
• Not as repetitive
• More able to chat on the phone and carry on conversations
• Not hallucinating or imagining things
• Less suspicious
• More likely to remember to flush the toilet
• More likely to rely on memory aids
• Better able to handle themselves at a restaurant or a friend’s house
People who developed Alzheimer’s at an unusually young age and took Alzheimer’s medication said that they could continue to do the following (especially if they could do these things before treatment):
• Engage in hobbies such as painting or knitting
• Play musical instruments
• Appreciate art, music, and humor
• Read books, watch television and films
• Give speeches
• Work part- or full-time
• Send e-mails and use the computer
• Use most devices around the house
• Socialize with family and friends
• Go to church, pray
THE IMPORTANCE OF STAGING
When your doctor starts talking about staging, she’s probably not digressing to discuss her interest in theater. She’s talking about how to determine if the disease is in the mild, moderate, or late stage of Alzheimer’s. It requires evaluating day-to-day functioning, memory ability, and general behavior. Rating scales developed for this purpose take between fifteen and forty-five minutes.
Unfortunately, staging still hasn’t caught on with many doctors, though it’s becoming more common because insurance companies ask the doctors for this information. When done correctly, staging has several benefits:
• Gives doctors and families a good baseline for tracking progress or treatment benefits over time
• Helps the doctor choose the best initial drug, since different drugs are approved for different stages
• Allows doctors to better predict what benefits or risks to expect from treatment. For example, for a person in the very early stage of Alzheimer’s, a doctor may choose to use a slightly lower dose of a drug to minimize nausea or diarrhea.
• Gives doctors and families a better sense of what to expect over the next few months or years. We know that for some, thinking abilities and test scores on the Mini-Mental State Exam (MMSE), for example, decline slowly at first, then more quickly in the moderate stage, then slow down again in the later stage. (Behavioral and speech problems don’t follow this same pattern of decline.)
At a minimum, most doctors will perform the Mini-Mental State Exam, which provides a good clue about the stage of the disease. Here is how MMSE scores translate in terms of stages:
Very mild: 27–30
MMSE cannot be used actually to diagnose Alzheimer’s. People with MCI and mild Alzheimer’s have very similar scores, so doctors who rely solely on the MMSE may mistake MCI for mild Alzheimer’s. In addition, the MMSE is not a perfect staging tool because it doesn’t assess behavioral problems or a person’s functioning in daily life, and a person’s education level can affect scores.
SHOULD YOU START TREATMENT
IN THE EARLIEST STAGES?
Truthfully, there are pros and cons to starting early. Most experts agree that the pros strongly outweigh the negatives, but below we give you both sides of the issue so you can judge for yourself. Note that our “pro” list is a lot longer than the “con” list!
Understanding how Alzheimer’s spreads in the brain reveals the importance of early treatment: It starts in very small regions and then spreads over a period of years to damage more and more of the tissue. Although it has not been proven that current drugs stop this deadly march, doctors hope that starting treatment early gives patients their best chance of preserving their independence.
• Alzheimer’s relentlessly damages nerve cells and mental abilities and causes brain tissue to begin shrinking even in the early stages.
• Mental decline is slow in the early stage and then speeds up dramatically in the moderate stage, when the ability to function independently decreases and wandering, suspiciousness, and other serious problems emerge. Starting treatment early offers the best chance to keep people in the early stage for as long as possible.
• Medications have shown modest but consistent benefits on mental and functional abilities in early Alzheimer’s. Some studies suggest that people who start treatment early retain better mental ability longer than those who start treatment months later.
• We hope the drugs may protect against Alzheimer’s-related harmful effects, such as neurochemical imbalances and possibly even against brain shrinkage.
• Alzheimer’s treatment may delay the emergence of behavioral problems and possibly reduce caregiving time by protecting people’s ability to care for themselves.
• In people with moderate Alzheimer’s, treatment offers added hope to keep them functioning better (and possibly longer) in the community.
• Last but not least: The available drugs are not miracle drugs and they don’t cure the disease. But they are the best we have, and from the vantage point of a scientist who sees the broad trends in Alzheimer’s studies, there is no better treatment on the horizon for the next several years. So at this point, no one can afford to wait for the perfect pill.
Henry is a fifty-four-year-old doctor who was diagnosed early in the course of the disease. He had to stop practicing after a colleague discovered he was forgetting important details that could have hurt his patients. Once diagnosed, Henry began taking Aricept. He also took up new activities he’d always wanted to do, such as singing in a rock band, and he became an active advocate for Alzheimer’s charities. He attended lectures and managed most of his daily activities for a couple of years after treatment began. He even delivered four lectures to large groups about his memory-loss experience. The disease eventually progressed and gradually reduced his independence, but he had several good years.
Ample scientific evidence illustrates the value of starting treatment early, as these studies of Aricept, Exelon, and Namenda show.
• When researchers gave either a placebo or Aricept to people with mild or very mild Alzheimer’s, the thinking of 20 percent of the placebo recipients and 40 percent of the Aricept recipients improved by about 15 percent over the course of the six-month study.
• In a one-year study of people with mild- to moderate-stage Alzheimer’s, the people taking the placebo declined steadily right away. However, it took almost nine months on average for the people who took Aricept to decline below their baseline. Such results underscore the value of starting treatment early and staying on it for at least one year.
• Another study showed that by about twelve months, approximately half of the people who received Aricept had not declined in their ability to manage day-to-day tasks, compared to about 35 percent of people on the placebo.
• Researchers gave Exelon to one group of Alzheimer’s patients, then gave it to another similar group six months later. Those who started Exelon earlier performed at a much higher level mentally for two years longer than the late starters.
Good to Know: In our experience, it is wise to stay on an Alzheimer’s medication for at least one year. Most of our patients stay on them for years.
• There is no definite proof that early treatment extends life, keeps nerve cells alive longer, or slows the buildup of plaques and tangles in the brain.
• Not all studies have been positive. For example, long-term studies of the effects of Aricept, Exelon, and Razadyne on people with MCI have yielded mixed or negative results. Likewise, studies of giving Namenda to people with mild Alzheimer’s were not positive enough to meet the FDA-approval standard.
• There is no strong proof that the drugs’ effects last beyond two or three years.
• The drugs can have side effects in some people.
• Critics feel the benefits may be too small to justify their cost to society.
UP AND RUNNING: PUTTING A TREATMENT PLAN
IN PLACE AND KEEPING IT USEFUL
you read about how doctors diagnose Alzheimer’s. After a diagnosis of Alzheimer’s, you should expect more than a pat on the back and a prescription.
First, let’s talk about where to find the best doctor for long-term treatment and care. You may be able to stay with the doctor who made the diagnosis. Some doctors, however, specialize in diagnosis and want you to see your general practitioner for ongoing care. (Doctors get reimbursed less for ongoing care and treatment.)
In general, for ongoing memory care in the early stage, your best bet is to go to a neurologist, a geriatric psychiatrist, or a specialized memory clinic. In the later stages, more health and behavioral problems emerge. Then it’s wise to find a geriatrician or primary-care physician who will treat the physical health problems, and you may also need a psychiatrist to help you handle the emotional and behavioral issues. What’s most important is that you find a doctor who will spend time with you and really focus on your needs and concerns.
An important factor to consider in choosing a doctor for long-term care is the doctor’s approach to medications. In general, we see three types of approaches:
1. More is better. These doctors like to prescribe the newest medication, regardless of the cost. They favor combining medications for maximum effect and using drugs for purposes not yet approved by the FDA if some evidence exists to support such use. For example, they may recommend an imported drug from Europe to treat mild Alzheimer’s, even though it’s not approved by the FDA to do that. They also usually are more likely to recommend that patients stay on medications for longer periods of time.
2. Less is more. These doctors avoid medications that don’t meet their own criteria for success, wean you off any that aren’t absolutely necessary, and give medications for the shortest time possible. They declare failure quickly. They may work in a managed-care system where doctors benefit by keeping prescription numbers down and the HMO’s profits up.
3. Follow the rules. These doctors adhere to the formal evidence. If a study showed that a drug worked for six months, these doctors will use the drug for six months. They live and die by the clinical studies. However, the studies they live by may include some innovative or alternative approaches.
Our advice? Find a doctor who suits your philosophy of care, recognizing that you need innovative approaches when dealing with Alzheimer’s.
How to Recognize a Good Doctor
• Establishes treatment targets. Documenting the MMSE, as well as any specific problems you have now, will help the doctor gauge the effectiveness of treatment later on. For instance, you may have trouble remembering names, repeat yourself, misplace objects, or have difficulty keeping your finances in order. On subsequent visits, the doctor will assess how treatment is affecting these behaviors.
• Reviews all medications. The doctor should ask about psychological problems, such as anxiety, or other medical conditions, such as heart disease, and how these are being treated. It is important for the doctor to have a complete list of medications, because some drugs, including those for incontinence and depression, can nullify Alzheimer’s medications.
• Thoroughly explains the treatment options. You are entitled to a complete explanation of the diagnosis and prognosis, along with the overall treatment plan, available medications, and possible side effects of drug treatment. This is the time when you should expect the doctor to discuss the possible usefulness of taking at least one of the four FDA-approved medicines for Alzheimer’s disease that are described in the next chapter.
• Helps you choose a friend or relative who will serve as your official assistant. Your assistant may be a family member who will be able to keep an eye on you, observe any changes, and fill the doctor in as needed. Ideally, your helper lives with you or close by. An adult child who lives two hours away and visits you once a month, for example, wouldn’t be a good helper for your doctor visits. Your spouse, who knows you the best, would be.
• Helps your family set up an integrative treatment plan. More than just helping to pick a helper, a doctor should discuss ways that you and your family can monitor medication use and keep track of changes and responses to medication. The best doctors will help you enhance the positive effects of drugs, such as by getting family support, educating yourself on the disease, and trying nonpharmacologic strategies. They will also help keep your family’s expectations of treatment realistic. None of these drugs is a magic bullet, so a doctor should help you appreciate any small improvements.
When to Wait
Most doctors will recommend that you start treatment immediately after diagnosis. However, on occasion, a doctor isn’t sure of the diagnosis. If that’s the case, it’s better to err on the side of caution. She may have you come in again and undergo a few more tests, or even watch you for a few more months to be certain of what she’s seeing. If you trust and like your doctor, go with her judgment.
Joe, fifty-five, was labeled with possible Alzheimer’s, and his family urged his doctor to start him on Razadyne and Namenda as soon as possible. Joe started taking the drugs, but in the next two years, he got so much worse that the doctor decided to order a special spinal fluid test to make sure the diagnosis was correct. The test showed that Joe didn’t have Alzheimer’s after all, but Creutzfeldt-Jacob disease, a rare infection that these drugs are unable to help.
What Your Doctor Should Do at Follow-up Appointments
• Review your medication and any other health issues that may need monitoring. Drugs affect people differently, and both primary and secondary effects must be monitored regularly.
• Weigh the risks and benefits of your medication in relation to the stage of Alzheimer’s and health status.
• Consider combining or switching drugs, based on the latest data concerning the risks and benefits.
• Discuss any changes in your condition (or that of a loved one), including safety-related concerns such as driving skills and wandering.
• Periodically administer tests to see how the disease is progressing over time. At the minimum, he should perform the Mini-Mental State Exam (MMSE), a quick measure of brain function. If he isn’t doing this, ask him to.
• Discuss whether you need to consult with other specialists.
In general, it takes at least six months and several visits to judge whether a medication is working well or not. For instance, people’s memory may fluctuate a lot in a short period of time for reasons ranging from getting a poor night’s sleep to battling a flu bug. For this reason, expert doctors rely more on patterns they see over several visits than on a single visit.
TREATMENT MISTAKES AND WHAT
TO DO ABOUT THEM
Not all doctor’s visits to treat Alzheimer’s are optimal.
“The doctor saw my mother for thirty minutes and gave her some pills. Since I live so far away from her, I can’t check on her daily. She took the pills he gave her for four weeks, but we didn’t see any improvements. When I called the doctor, he said we could stop the pills since they didn’t seem to be helping, but then my mom’s memory got a lot worse when she did stop.”
This scenario is all too typical when a doctor is not well versed in Alzheimer’s or is simply not doing a good job. The doctor tried unsuccessfully to assess over the phone how the mother was doing and whether her medication was working. He didn’t counsel the family about what they should expect from treatment. (In this case, counseling the mother wouldn’t have been very useful because she was too forgetful.) He should have taken the time to call and speak to the daughter herself and warn her that it usually takes several months to determine how a medication is working.
The mother’s memory got worse when she stopped the medication, probably because the drug was actually helping. Remaining stable may well indicate that the medication is doing its job. Unfortunately, she lost the benefits she could have seen from the drug.
The Top Ten Mistakes and How to Avoid Them
1. Delaying treatment. As mentioned, starting treatment early may preserve mental skills longer.
2. Documenting the person’s baseline status and stage incorrectly or incompletely. If the doctor doesn’t fill out the forms correctly, patients and their families will have difficulty assessing how the treatment is working (and the family is likely to have problems with insurance). Ask the doctor how he or she is documenting the baseline status.
3. Not counseling families about side effects or evaluating the person for drug interactions. If families and patients don’t know about possible side effects, they may respond inappropriately when side effects occur—either too alarmed or not alarmed enough. Make sure you ask for this information if the doctor doesn’t volunteer it. (As with all drugs, the list of possible side effects is long, so the best doctors focus on the most common and dangerous ones.)
4. Having unrealistic expectations. This can lead families to stop their relative’s medications when they don’t see dramatic improvements.
5. Increasing the dose too fast. Drug companies’ recommended dosages are based on the average amounts used in studies. Doctors should sometimes deviate from the package inserts if newer research has come out on how much to prescribe, or if they need to modify the dosage to fit the patient’s unique needs.
6. Stopping a drug too soon. This can lead to loss of future benefits and exacerbate symptoms for a few days to a couple of weeks. Restarting the drug after a few months may not make up for lost time.
7. Not fully assessing symptoms at follow-up visits. Seeing a patient only briefly or not assessing all of the different aspects of the person’s mental and functional status can lead to poor decisions such as stopping a drug or giving a person the wrong dose. If you encounter this, speak up and ask for more time or a follow-up visit if necessary.
8. Sticking with the tried-but-not-so-true. If a drug doesn’t appear to be working as well as it should, a doctor should switch to another one or add a second medication. Likewise, being too aggressive and adding a second drug when it is not indicated can lead to unwanted, avoidable side effects.
9. Mistaking disease symptoms for drug side effects, and vice versa. For example, if a doctor or family member thinks agitation is a drug side effect when it is actually part of the progression of Alzheimer’s, he or she may mistakenly stop the drug instead of trying to raise the dose or add a second medication to treat the agitation.
10. Being too aggressive. Some doctors combine two Alzheimer’s medications for every single patient, while others routinely overshoot the recommended dose limits. Clearly one dose does not fit all, but such aggressive strategies must be well justified.
TAKE THIS LIST TO THE DOCTOR
Questions to Ask Before Starting Treatment
• What is the stage of Alzheimer’s? What is the MMSE score?
• Why did you choose this specific drug instead of the others, and what are the expected benefits?
• What are the expected risks? Will treatment interfere with any current drugs or illnesses? Is there anything in the EKG (heart rhythm) that would suggest a problem with using one of these drugs?
• How much does treatment cost? If needed, can you sign us up for a Prescription Assistance Program, and do you provide free samples?
• How often do we need to come for follow-up visits? (At least every three months is ideal.)
• Will my insurance pay for the medications, and if so for how long?
Questions to Ask at Follow-up Visits
• What kinds of tests did you do? How does the MMSE score compare to her prior scores? What kinds of improvements or decline are you noticing?
• Is the diagnosis still Alzheimer’s? Could it be vascular dementia or Lewy Body Dementia?
• Is treatment working? Is this the best dose? Would changing drugs or adding a second drug help?
• Can I continue to get free samples?
• Is there any suggestion that the drug is adversely affecting the liver or heart rhythm? What about weight loss?
• Has any new information come out about the risks or benefits of the drug(s) since the last visit?
• Has the FDA approved any new drugs that might be helpful? Have any new drugs become available in Europe but not here? If so, should we try them?
• Are there any worthwhile new clinical trials to consider?
• Should we get the second opinion of a specialist?
THE ALZHEIMER’S ACTION PLAN Copyright © 2011 by MuraliDoraiswamy, M.D., and Lisa P. Gwyther, M.S.W., with Tina Adler.