8
Treating Alzheimer’s
At the beginning of this book, I told you that I am neither a medical doctor nor an Alzheimer’s specialist. But one cannot write a book about caring for those who have Alzheimer’s without also offering up at least some information about the disease itself, as well as offering advice from others who are involved in the medical care of this disease. So, in this second part of the book, I’m going to pass on to you the information I think is important for you to have.
As we age, our mental function diminishes. That shouldn’t surprise anyone, as the rest of our body starts to slowly decline from its peak performance once we get past our twenties. Once we hit our fifties, the changes become more and more noticeable. But most of these changes don’t prevent us from going forward with our lives, even if we must do so a bit more cautiously. (That I had to give up skiing a few years ago still bothers me!) As to our brain functioning, almost everyone notices at a certain stage in life that trying to recall certain pieces of information, like the name of that person walking up to you at a cocktail party, can be difficult. The cutesy term for this is “having a senior moment.” We all have them. I certainly do at age eighty-four, but in my case, and in the case of most people, it’s not a very dramatic shift and doesn’t really interfere with my day-to-day activities. However, that’s not true for the millions of people who suffer from dementia.
Dementia is defined as a loss of brain function that causes problems with our memory, thinking, and behavior. In the days when medicine was less informed about dementia, it was usually labeled as senility. Today, we know there are many causes of dementia, one of which is a disease called Alzheimer’s. The disease is named after Dr. Alois Alzheimer, the doctor who discovered certain changes in the brain of a patient he autopsied, way back in 1906.
It is impossible to say for certain whether someone has Alzheimer’s without doing an autopsy of the brain after the person has died, though nowadays an MRI might detect signs of possible Alzheimer’s, and, in the near future, brain scans will be able to detect damage occurring within the brain long before any symptoms materialize. When scientists look at the brain tissue of people who have had Alzheimer’s, they find a variety of evidence, including “neurofibrillary tangles” (twisted fragments of protein within nerve cells that clog up the cell), “neuritic plaques” (abnormal clusters of dead and dying nerve cells, other brain cells, and protein) and “senile plaques” (areas where products of dying nerve cells have accumulated around protein). It seems that in people susceptible to Alzheimer’s, a genetic trait doesn’t allow them to put the brakes on the process of plaque buildup. But while the patient is still living, a specialist in dementia can usually make the diagnosis based on behavioral evidence.
There are two basic types of Alzheimer’s, early-onset, which means the person begins showing symptoms before the age of sixty, and late-onset, which is much more common and which begins after the age of sixty. The older you are, the more likely it is that you will get Alzheimer’s. In fact, the instance of Alzheimer’s doubles every five years beyond age sixty-five. There are an estimated 5.4 million people living with Alzheimer’s in the United States, and Alzheimer’s is the sixth-leading cause of death in this country, and, of the top ten causes, it is the only disease that currently cannot be prevented, slowed, or cured. Of those with dementia, the cause in 60 to 80 percent of these cases is considered to be Alzheimer’s. (Remember, there is no way to know for sure whether Alzheimer’s is the cause until after the person has died, and then only if an autopsy is done.) Some of the other causes include vascular dementia, Parkinson’s disease, Creutzfeldt-Jakob disease, and Huntington’s disease, as well as a whole laundry list of diseases with various acronyms that I won’t bore you with. However, interestingly enough, it’s also possible that what may appear to be dementia is not dementia at all.
IT MIGHT NOT BE DEMENTIA
Some of the symptoms of dementia, like memory loss, can be triggered by other conditions that are treatable and reversible. Some medications to treat conditions such as high blood pressure can cause memory loss or other signs of what appears to be some malfunction of the brain. The same is true of kidney failure, depression, and anemia. (The latter causes the brain to get less oxygen and so perform more poorly.) A lack of sleep can cause symptoms and so can the medications to help one fall asleep. A small stroke, often caused by diabetes, which is very common among older people, can be behind the symptoms. Surgery can sometimes cause memory loss. Approximately 30 percent of those who have open-heart surgery suffer from some memory loss (and for many of these, it is not reversible, though it also doesn’t continue to worsen). Chemotherapy can also affect the brain. And, if someone is suffering from hearing loss or has vision problems that haven’t been addressed, what may appear to be memory loss might be nothing more than an inability to process certain information in the first place. For example, if an older person can’t hear someone’s name, naturally she won’t remember it later. Another very common occurrence is that a person may be affected by several of these factors at the same time, multiplying the effect.
So as you can see, deciding for yourself (like self-diagnosis) that certain symptoms are Alzheimer’s can be a big mistake, particularly if information about these symptoms is withheld from a doctor who is treating the patient for some other ailment. If you notice any symptoms of what may be dementia in someone else or in yourself, don’t delay in seeing a doctor. (See the Eleven Warning Signs later in this chapter.) This is especially important if the cause is something other than Alzheimer’s, because the underlying problem may not only be treatable, but may cause other damage if it is not treated.
If Alzheimer’s is the cause of someone’s symptoms, it’s also important to see a doctor, as the medications that can be prescribed to slow the disease might give the patient added time to live an almost normal life. So, whatever you do, don’t make the mistake of diagnosing what’s happening as Alzheimer’s and just giving up. (By the way, if you have a strong genetic disposition towards Alzheimer’s, you may want to begin taking medications against the disease long before you show any signs of it. This idea is only now being given serious consideration in the medical field, but if you think you might be a candidate for such early preventive treatment, ask your doctor any time after your fortieth birthday.)
At this point I’d like to quote further from the article written by Robin Leckie (mentioned earlier in the book), as I think it’s quite appropriate:
It seems like just a few days, not three years, since I called to my wife, asking her to sit beside me while I shared some news. The winter sun was filling the room with warmth, and rainbow colors streamed through the stained-glass window. I had just returned from a doctor’s appointment and now what I had expected for some time had been confirmed—I had Alzheimer’s.
Earlier, as I returned home that morning, I remember feeling somehow relieved, even though this was what I had anticipated. All those isolated moments of memory loss, confusion, and indecision now had a reason—in the same way as when we have a complaint and make a doctor’s appointment and part of us hopes the complaint will still be there when we arrive. I was the same person before the appointment as after; I still looked the same. But now I knew I was faced with an uncertain future.
No one wants to have Alzheimer’s, but as Robin so admirably demonstrates, if you’ve been struggling with what you’re worried might be dementia, you’ll be better off with a diagnosis than remaining in the dark.
PLAYING DOCTOR
Sometimes it may be obvious to a medical professional what is going on with a patient, and sometimes it won’t be. So if someone you know is given a diagnosis of, say, depression, and this doesn’t make sense to you, don’t be afraid to question such a diagnosis. Seek out a second, third, or fourth opinion, if necessary. Understandably, no one wants to hear a diagnosis of Alzheimer’s, but as I’ve said, since the correct medication may slow down the progress of the disease, the sooner you discover the truth, the better.
The difficulty for you is how to navigate these waters, given your lack of real medical knowledge. You are certainly not capable of telling the difference between depression in a loved one (or in yourself for that matter) and the early signs of dementia. And, given how scary a diagnosis of dementia is, are you really going to be motivated to find the truth? Pursuing a second opinion can involve a number of costs, in terms of time, money, and energy, which make going on a wild goose chase problematic. I would suggest asking close relatives for their advice. Whether or not they can actually help you, I don’t know, but by asking the opinions of people who know the person in question, you may reach a consensus. At the very least, if you’ve involved other people in the decision-making process, you’ll feel less guilty if your intuition is incorrect.
There’s another reason to ask others who know your loved one what they think. Sometimes, the signs of Alzheimer’s are more pronounced in certain circumstances. Let’s say your husband loves to play cards, but you don’t, so you never play with him. His friends may have begun to notice some definite changes in his playing abilities that you would never know about. They might not come to you with this information on their own, but if you ask them, they probably will tell you the truth. So, rather than hide your suspicions, if your loved one is at the stage where he or she hasn’t yet been diagnosed, start asking questions.
While the detectable symptoms of Alzheimer’s generally don’t appear until after age sixty, the disease actually takes a long time to develop. Damage to the brain can begin ten to twenty years before any symptoms make themselves known. At the moment, that window of opportunity doesn’t offer any ways to stop the disease’s progress, but hopefully one day, early detection might allow doctors to medically intervene before too much damage is done. There are drugs available today that have a limited ability to do that. (More on these drugs later.) Thus, if you suspect that someone you know has the very beginnings of dementia, don’t put off seeing a doctor. Obviously, it’s not a diagnosis anyone wants to hear, but if hearing it sooner allows you to slow down its progress, why would you ever wait to get an evaluation?
ELEVEN WARNING SIGNS
Most of you reading this book are dealing with someone who has already received a diagnosis of Alzheimer’s, so I’m not going to go into the eleven warning signs too deeply, but I also don’t want to leave this information out of the book, so here they are in brief:
| 1. | Memory loss that disrupts daily life, especially asking the same question over and over. |
| 2. | Challenges in planning or problem solving, such as no longer being able to follow a recipe or taking much longer than usual to do routine tasks. |
| 3. | Difficulty completing familiar tasks, like driving to a destination the person knows well or forgetting how to play a simple game. |
| 4. | Confusion with time or place, so that they may not be able to keep track of what day it is or where they are. |
| 5. | Trouble understanding visual images or spatial relationships, so that activities like driving or reading may become difficult. |
| 6. | New problems with speaking and writing that go beyond just forgetting the occasional word. Some may be unable to continue a conversation. |
| 7. | Losing things and not being able to find them because they can’t remember enough to retrace their steps. |
| 8. | Decreased or poor judgment, particularly over money matters, but this may also be visible via changes in grooming habits. |
| 9. | Withdrawal from work or social activities, often because of embarrassment. |
| 10. | Changes in mood and personality. They may be moody, become suspicious even of people they know, and become easily upset. |
| 11. | Finally, here’s a new symptom that has recently been discovered: an inability to tell truth from untruth, including everything from outright lies to mere sarcasm. |
One reason to become familiar with these signs, even if the person in your care has already been diagnosed, is that, as a caregiver, you’re a source of knowledge for friends, relatives, and neighbors on the subject of Alzheimer’s. You’re likely to be asked questions, so knowing these eleven signs will probably come in handy.
THE STAGES
When I began writing this book, there were said to be seven stages to Alzheimer’s. But in the middle of the writing process, an announcement was made by the National Institute on Aging and the Alzheimer’s Association that redefined the stages. The reason behind this was to reflect the fact that Alzheimer’s begins to develop much earlier than was previously thought, and there are important reasons to recognize this. The newly reported first stage is one where changes are occurring in the brain but there are no apparent symptoms. At this stage, the person has no idea that Alzheimer’s is developing within the brain and the disease is beginning to go on the offensive. The second stage can be described as early Alzheimer’s, when there are some symptoms but the victim can still function on his or her own to a great extent. The third stage is when dementia has set in, and the person is no longer fully functional.
Why is it important to give greater recognition to the first stage when there are no symptoms? (I know I’m repeating this message, but since there’s no cure, this aspect of Alzheimer’s bears repeating several times.) It is important because if Alzheimer’s can be detected early enough, either existing drugs or new drugs yet to be developed may be able to thwart the disease from doing major damage. Often, by the time either the person with Alzheimer’s or his or her relatives or friends notice changes significant enough to warrant sending this person for a medical diagnosis, it is too late to do much about arresting the course of the disease. Thus, early testing will become more and more important, and therefore it is vital that the public be made aware of the importance of early detection.
BASIC TESTS
The American Academy of Neurology recommends two basic tests for early signs of Alzheimer’s:
Mini Mental Status Exam: A short, untimed test that quantifies cognitive function and screens for cognitive loss by testing a person’s orientation, attention, calculation, recall, and language and motor skills. There are eleven sections in the test, including naming common objects, writing a sentence, and copying a design of two intersecting shapes. Patients receive one point for each correct answer.
Memory Impairment Screen: A four-item recall test that assesses memory impairment. Patients are given the names of one item in each of the following categories: animal, city, vegetable, and musical instrument. After a short delay, the individuals are asked to recite the four items in any order. If the patient misses an item, the physician cues the individual by telling him or her the category.
The other key message that these scientists want to convey is that memory loss is not necessarily the first indication of Alzheimer’s. Mood changes or problems with language, spatial perception, or reasoning might also be indications of the onset of Alzheimer’s, and the more people are aware of these signs, the more likely it is that early detection will occur.
There are physical markers that the medical world is just now learning how to detect. As this aspect of Alzheimer’s treatment is developed, it will be possible to screen more people at an earlier age with good results. Those with a family history of Alzheimer’s, for example, would need to be screened early, similar to how patients with a family history of breast cancer are screened early.
There remains a lot of work to be done. One third of those who develop some of the physical markers of Alzheimer’s, such as amyloid plaques, never develop the disease. However, diagnostic testing, such as X-rays, is important to employ in early detection efforts, as two thirds of those with these markers do develop Alzheimer’s.
While I certainly agree with how important it is to publicize the message that early diagnosis is key, I also think that the old seven stages serve a purpose to those who know that they or a loved one has Alzheimer’s. When communicating with the physician taking care of the patient, for example, it can be useful to use these stages as a way of indicating where on the Alzheimer’s scale a person currently falls. So, while these seven stages may soon fall out of favor, at this time they should be used to whatever degree seems valuable.
THE STAGES OF ALZHEIMER’S
The old Stage One is the same as the new Stage One, as there are no visible signs of impairment or obvious symptoms, but damage is taking place inside the brain. Since there are no signs of this damage, the ordinary tests that a doctor might use, such as the most common battery of memory tests, won’t reveal anything. However, X-rays or brain scans might reveal physical damage occurring within the brain. As already noted, such damage may not end up leading to Alzheimer’s, but perhaps, combined with other factors, like the carrying of certain genes, treatment with drugs might be initiated as a precautionary measure. So, if you notice changes in yourself or a loved one that seem minor, don’t ignore them. It’s better to be tested and find nothing than not be tested and risk further damage if the disease goes unchecked.
In Stage Two, there is very mild cognitive decline. The person may say to himself or herself that it’s becoming harder and harder to remember certain things, but no one else around the person would be able to detect any differences. What you might notice is a change in personality or behavior as this person reacts to the changes he or she is feeling. Again, rather than ignore them, or allow this person to shrug them off, try to explore what is occurring.
Let me repeat here that some of these changes may be the result of another medical problem, one that is treatable, so this is another reason to see a doctor, even if you are afraid the diagnosis might be Alzheimer’s.
In Stage Three, those around the person will begin to notice changes. The person will have noticeable difficulty coming up with a word or someone’s name, even if they’ve just been introduced. If the person is still employed, he or she may have difficulties with tasks that were once easy to perform. Planning and organizing skills weaken or disappear. The person will lose track of objects, even those that are valuable.
MILD COGNITIVE IMPAIRMENT (MCI)
Stage Four has been labeled Mild Cognitive Impairment, and the symptoms at this point will allow for a diagnosis of Alzheimer’s. This stage would now be called Stage Two. In this stage, forgetfulness becomes more apparent. Tasks that require mathematical skills, like paying bills, may become difficult or impossible to perform. Medical tests will include using those skills, such as asking the person to count backwards from one hundred by increments of seven. Accompanying these changes in memory skills will be changes in the person’s emotional behavior. He or she is likely to become moody or withdrawn, especially in social settings.
MODERATELY SEVERE COGNITIVE DECLINE
Moderately Severe Cognitive Decline is the label for Stage Five. While someone at this stage can still feed himself or herself and go to the toilet on their own, they are going to need help in many other ways. They won’t remember what day it is, or what month it is, and they will need help dressing in clothing that is appropriate for the season. They’ll become confused about where they are. They won’t remember important information about themselves such as their address, phone number, or what high school they attended.
SEVERE COGNITIVE DECLINE
Stage Six is considered to be Severe Cognitive Decline, though this is actually mid-stage Alzheimer’s disease, as the patient may continue to decline for some time. As the patient’s memory continues to worsen, they will need more and more help in performing everyday activities. They’ll remember their own name but may have difficulty remembering that of their spouse or daily caregiver. They can distinguish between people they know and don’t know but may not know who each individual is. They will lose the ability to dress themselves, forgetting to take their clothes off and putting on their pajamas over their clothes, for example. They will require help using the toilet, as they’re likely to forget to wipe themselves or flush. Or, they may forget to go to the toilet altogether and lose control of their bowel or bladder.
Their sleep pattern may change so that they’ll be too restless at night to sleep and then sleep during the day. Their personalities may also change so that they may become suspicious, thinking that their caregiver is an imposter, or they may experience delusions. They may also exhibit compulsive repetitive behavior, like handwringing or rubbing certain articles over and over. There is also a tendency to wander off, which is why constant supervision at this stage becomes necessary. (I’ll include tips on how to handle some of these behaviors in the next chapter.)
THE FINAL STAGE
Stage Seven is called Late-stage Alzheimer’s or Very Severe Cognitive Decline. In this stage, the patient is going to need help with everything, including eating and going to the toilet. They won’t say very much, maybe a word or two if you try to initiate conversation. They may also lose the ability to smile, to sit without support, and to hold their heads up. Reflexes become abnormal. Muscles grow rigid, and swallowing is impaired.
Of course, there are no clear lines of demarcation between these stages. Some people with dementia exhibit all of the symptoms of a certain stage, while others may not. Is it important for you to know the stages? The first and last stages are particularly important. As I’ve been saying, the earlier you spot Alzheimer’s, the more helpful the current drug therapy may be. Also, you won’t want to waste a second making the proper legal and financial plans if your loved one appears to be developing Alzheimer’s. (See Chapter 12 for more information.) As your loved one moves into the last stages, you are probably approaching the time when you are going to have to send your loved one to a facility. Some of the factors in that decision will be entirely personal, but recognizing that he or she is in the latter stages will be a consideration.
PERSONAL STAGES
Apart from the official stages, you are going to find that your care recipient will go through some personal stages. In other words, there are stages that some Alzheimer’s patients undergo, but not all patients progress in the same way. For example, your mother may become very argumentative. Or your father may become paranoid and accuse you of stealing his belongings. Not every patient with Alzheimer’s exhibits such behavior, but for those who do, whether this development happens during Stage Three, Four, or Five is irrelevant to you. All that matters is that for a time you’re going to have to find a way to deal with this “stage,” and the key phrase here is “for a time.”
Some of these personal stages can be quite difficult for you to handle. If your mother is constantly blaming you for things that you’ve done or not done and there’s no truth to these accusations, you are going to want to argue with her, yet that is useless, as she is suffering from a delusion. Instead, you have to not take her accusations to heart and try to divert her attention to something else. Now, if this behavior were to become permanent and go on for years, this would be hard to take. But in most cases, it’s just a stage your care recipient is going through, much the way toddlers go through stages. At some point, this behavior will change. I can’t promise you that it will be a change for the better, but just knowing that a change is coming and you’ll no longer be accused of stealing, for example, will make hearing these charges again and again more bearable.
WHAT CAN BE DONE
As I’ve said repeatedly, there is no cure for Alzheimer’s, but if it’s caught early enough, there are drugs that can slow the process down. In fact, in talking to people about this subject, someone reported having an uncle who was diagnosed with early-onset Alzheimer’s, and after being put on these medications the uncle reported that he felt more mental clarity than he had in years. I hope for his sake the effects of these drugs last for him, but as I said, in general, all that can be hoped for is a slowdown in the progression of the disease, and the difference between being on such medication or not will usually not seem to make much of a difference in the symptoms of your loved one. (Again, if you believe you are genetically inclined to get Alzheimer’s, being put on medication long before you show any signs of the disease may delay the onset.)
To date, the drugs that are being used are prescribed in what is called off-label use, meaning the drugs were developed for some other medical reason, but have been found to help with Alzheimer’s. With an ever-growing need, and thus market, the pharmaceutical industry is busy trying to come up with drugs that will specifically target the symptoms of Alzheimer’s. Hopefully, positive developments will happen sooner rather than later.
Since there are different symptoms that come with Alzheimer’s, there are different drugs available that may be effective in treating some or all of them. The main symptom is, of course, memory loss, and right now there are two types of drugs that have been approved by the Food and Drug Administration with regards to memory loss: cholinesterase inhibitors (Aricept, Exelon, Razadyne, Cognex) and memantine (Namenda), which treat the cognitive symptoms (memory loss, confusion, and problems with thinking and reasoning) of Alzheimer’s disease. These drugs may help the brain to continue to communicate within its cells, thus stemming the damage caused by Alzheimer’s. Some doctors prescribe only one or both together. Some doctors may also add high dosages of Vitamin E. (While writing this book, I found an article in a medical publication that said that memantine was no more effective than a placebo. As we all know, the science of medicine seems to change all the time and it is very difficult for a lay person to comprehend exactly what is going on, yet we all have a responsibility to try to understand because there doesn’t seem to be one path to follow. So, you can either trust your doctor and hope for the best, or you can do your own research and ask a lot of questions. See the Appendix for websites that will help you out if you follow the latter approach.)
You need to understand how these drugs work to be able to have a good picture of your care recipient’s overall level of treatment. Since you’re ultimately in charge, it’s up to you to make sure that the person in your care is getting the best that modern medicine has to offer. But there are also aspects of drug therapy that you need to keep at the back of your mind. First of all, understand that drug therapy does not work for every Alzheimer’s patient. In fact, these drugs have been found to work in less than half of those to whom they are administered. And the effects may be so limited that you won’t even notice a difference, or the effects may be short-lived, so that a drug slows down the progress of the disease, but only for a limited period of time.
The point I want to make is that drugs are not a panacea. They can be useful, but in the end, your loved one is not going to escape the full ravages of the disease. I don’t want you to place your hopes in the idea that the currently available drugs are going to rescue you, because that will only lead to disappointment. You don’t want to get too excited by any progress you see, you don’t want to become complacent about the preparations you need to make, and you don’t want to live in a fantasy world that is one day going to come crashing down. Why not? Picture yourself in a hot air balloon sailing over some beautiful countryside. You’re enjoying the view, but you know that you only have so much gas in your tank. If you fly too high up, so that when you run out of gas you’re thousands of feet in the air, you’re going to come crashing down. But if you’re only a few hundred feet up, you can make a gentle, controlled descent when the time comes.
If you take a realistic view of what drugs can do for you and your loved one, you can enjoy the extra time you’ll have at a lower stage of Alzheimer’s, but your world won’t come to an end if or when the drugs prove ineffective. If you can keep your care recipient under your roof for an extra six months, that’s a wonderful plus, and just accept it as that, rather than getting angry at the drug for failing to completely halt the progress of the disease. Hopefully, the day will come when drugs prove more effective, but in the meantime try to recognize their limitations.
DRUG THERAPY
As mentioned, there are two types of drugs. The cholinesterase inhibitors are used in the early stages of the disease. Your brain naturally produces a chemical messenger, acetylcholine, and in patients with Alzheimer’s, the production of this chemical decreases, which leads to memory loss. The cholinesterase inhibitors both increase the production of this chemical and increase its effectiveness. However, as the brain produces less and less acetycholine, the effect of the drug is reduced and eventually stops altogether, which is why these drugs work only in the early to mid-stages. Which type of cholinesterase is going to be right for your care recipient depends. Some may work better or have fewer side effects on a particular individual than others. So, if you’re caring for someone who is using this drug, you’ll have to monitor them as best as you can and make a detailed report to the prescribing physician so that a decision can be made whether or not to stay with a particular inhibitor or make a switch. Since the person in your care cannot communicate adequately, it is going to be up to you to maintain a steady flow of information between yourself and the doctor. Feel free to ask questions, and, if necessary, obtain a second opinion.
Memantine is a drug prescribed to patients with later stages of Alzheimer’s, though often it is not substituted for a cholinesterase inhibitor but rather given as an additional drug. Again, you’re going to be the one most likely to notice whether this drug is having a beneficial effect, especially in light of any ill effects it might have. Somebody is going to have to weigh the pros and cons, and if you spend the most time with the patient, then your opinion will count the most.
Bear in mind that since the most these drugs can do is slow down the rate of the brain’s deterioration, it can be difficult to say for certain whether or not they are helping. If the side effects seem to outweigh the benefits and you and the doctor decide to stop giving the patient medication, but then you notice that the patient is starting to deteriorate rapidly in terms of memory loss after the drug has been stopped, don’t hesitate to call the doctor and ask to resume the medication. It’s understandable that since you don’t have any medical training, you may hesitate to make such decisions, but the fact is that no doctor or scientist can predict exactly how these medications may act upon a specific patient. Since in this case you know the patient best, your input carries considerable weight, and don’t hesitate to throw your weight around if it means that the person under your care will be getting the best possible treatment.
LATEST EFFORTS
Scientists are working on an assortment of other medications and treatments that will either prevent Alzheimer’s or slow down its progress significantly once it is diagnosed, but these are still on the horizon. One that seemed promising had some serious side effects that made it impractical. On the other hand, I read about the concept of using electronic brain stimulation, which has worked to some extent with Parkinson’s disease, on people with Alzheimer’s, though this is still being tested.
One change that is on the horizon is that soon doctors will be able to perform a brain scan that will be able to distinguish the type of damage associated with Alzheimer’s. Since there is no cure, there are some people who are not going to want to know. But as I’ve been saying, finding out sooner gives you more time to prepare. It’s going to be a tough decision whether or not to go forward with this test, but I think the best choice, especially if a doctor recommends it, is to go forward.
DRUG ALTERNATIVES
I’m going to present more about what you can do to help your care recipient in the next chapter, but let me at least mention here that someone with Alzheimer’s can often be helped with alternative treatments such as aromatherapy, yoga, pet therapy, massage therapy, etc. You may be skeptical about this, but such therapies have been tested in clinical settings and have been found to be helpful. So, don’t skip reading about this in the next chapter.
DOCTOR’S VISITS
I’ve explained that because you spend so much time with your care recipient, and because he or she won’t be able to communicate adequately, you’re going to be the point person at each doctor’s visit. (If you need to use someone else to perform this task, you’re going to have to write down a very complete report on the state of your charge, both physically and mentally, as well as a list of questions to ask.) In order to make these doctor’s visits as fruitful as possible, the following are some tips that I’ve gathered from various sources. (And polls show that most caregivers follow such suggestions, though there are still far too many who do not, which I think is a mistake.)
| 1. | If the person in your care doesn’t have a lot of patience, try to schedule appointments when there is less of a chance of having to endure a long wait. Don’t hesitate to ask the receptionist when that might be. |
| 2. | In case there is a wait, be prepared. Many Alzheimer’s patients can be distracted with food or drink, so bring some cookies and juice (or whatever they like best and is on their diet). Also, bring any activities that might entertain them. A portable DVD player with headphones might work for some. |
| 3. | If your care recipient is very difficult when taken out of the house for a doctor’s visit, see if you can find a doctor who will come to your house. They do exist, and there are even dentists who make house calls. |
| 4. | Bring a detailed list of everything your loved one takes in terms of drugs and supplements. Medications are certainly the most important (and you can bring the actual pill containers so that you can be absolutely certain of the names and dosages), but vitamins and other supplements need to be on that list, and in what amounts. If your loved one has any health problems, it wouldn’t be a bad idea to describe to their doctor their basic diet, because an allergy might be the cause of a problem. |
| Tip: If you keep a daily log of all the medications and supplements you give your loved one, not only will that serve as a list to bring to your doctor, but it will also help you to be certain that all medications have been given every day. You can download from alz.org sample forms of the various logs that you might keep, such as a medication log and appointment log. |
| 5. | You also should make a list of any health issues, so that you don’t forget to ask the right questions. Your list should be in the order of most important first, just in case your doctor has to cut the visit short, or your loved one is acting in a manner that means you can’t stay. That way, you’ll at least get your most important questions answered. If you want to type them up and give them to the doctor, that’s OK too. (Many doctors will accept such lists via fax ahead of time, though rarely via e-mail because of malpractice issues.) |
| 6. | If this is an early visit, where a diagnosis is still being made, you definitely should bring a family history of the various conditions that your loved one may have inherited, and not just dementia, but all diseases, as this will help the doctor in making his or her diagnosis. If you don’t know the family medical history all that well, ask any siblings or your aunts and uncles to fill in any gaps in your knowledge. A good medical history is an important tool to a doctor, and it’s something only you can provide. |
| 8. | If your loved one is taking medication, make note of any side effects that you suspect are being caused by the medication, like an upset stomach. Your doctor may prescribe a different medication that will be just as effective but won’t cause this side effect. |
| 9. | Many people have a hard time remembering exactly what the doctor said after they leave the office. It’s not your brain that’s going, it’s just that you are a bit nervous. It happens to lots of people, so bring a pad and pen, or even use your phone to record what the doctor says. Later on, you’ll be glad you did. |
| 10. | If your loved one can answer questions, make sure that you sit in a place so that when the doctor is speaking to your loved one, you’re in the doctor’s line of sight. This will enable you to communicate silently with the doctor, with a nod or shake of your hand, as that will help the doctor to better understand what is going on at home. |
| 11. | Your doctor might not be able to help you solve every problem that you might run into while taking care of someone with dementia, but he or she might be a good source of referrals to other people or organizations that can offer help in these other areas, especially if he or she is a specialist and treats many people with dementia. So, don’t be afraid to ask about non-medical issues. |
Tip: If your next doctor’s visit is weeks away and you notice a sudden change in your loved one’s health, don’t wait for your scheduled appointment—call your doctor and make a new one.
WHERE ELSE TO GO FOR HELP
You probably went to your family doctor, or primary care physician as they’re now called, when you first noticed that something was wrong. At some point, however, you may need a specialist in order to make sure that you’re getting the best possible care for your loved one. The following are some specialists that you might want to consider:
| • | A Geriatric Nurse Practitioner, or GNP, is a nurse who has been certified by the American Nurses Credentialing Center, a certification that requires the nurse to receive a master’s degree. Such nurses have a thorough knowledge of all the medical and behavioral issues your loved one might encounter and can make an excellent substitute when you cannot see your doctor. |
| • | A Geriatrician is a medical doctor who has taken additional training in treating older adults. If you have one available to you, your loved one’s geriatrician will probably be the main doctor he or she will be seeing for treatment. |
| • | A Geriatric Psychiatrist has taken special courses in geriatrics and can both evaluate your loved one and prescribe medication. Having such a doctor as part of the team taking care of your loved one may prove essential, as behavioral issues are bound to crop up, and having the right person to help you will be crucial. |
| • | A Gerontologist is not a medical doctor but has had special training so that he or she can lead support groups and help in the care of those with early-stage Alzheimer’s. |
| • | A Geropsychologist is a psychologist with the training and experience to deal with the mental health challenges of older people. |
| • | A Neurologist is a medical doctor who specializes in certain diseases, including Alzheimer’s and Parkinson’s, as well as the aftermath of strokes. Because these diseases tend to hit the elderly, many have special training for this population, though not all do. |
| • | A Neuropsychologist has had special training in the way the brain affects behavior and so is able to run tests to diagnose Alzheimer’s and to judge the stage of the disease. |
ALTERNATIVE MEDICINE
Alzheimer’s must be treated by a doctor of medicine, but that doesn’t mean that others in the healthcare profession can’t also be of service. Nutritionists can assist with ailments, such as constipation and digestive issues, and may offer guidance on the course and dosage of a vitamin regimen. There are those that believe vitamins, particularly B12, can help with Alzheimer’s (for more on this subject, read the book Could It Be B12?). There have also been some studies that show Vitamin D may be helpful. If your loved one is suffering from backaches or other pains, a chiropractor may be of assistance. And, of course, massage therapy can help your loved one to feel more relaxed. (I love massages and have at least one a week.)
Acupuncture is known to have positive effects on the nervous system, and since agitation, anxiety, and depression are major problems among those with Alzheimer’s, you may choose to reach out to an acupuncturist. I am far from an expert in this area, but if it’s possible that your loved one might find some relief, and not become too agitated by the treatment, why not consider it?
As I mentioned earlier, if your alternative therapy route involves taking some sort of supplement, you must inform your doctor. You don’t have to say why you are giving your loved one some specific vitamin or herb, but since such products could interfere with the way any pharmaceutical medication works, your doctor needs to be informed. For a treatment where nothing is ingested, like chiropractic manipulation or acupuncture, you need not tell your doctor if you think he or she is not going to respond positively to such news, though, of course, you can if you are unsure about the effectiveness of the treatment and would like to get your doctor’s opinion.
HOSPICE
Alzheimer’s is not like cancer, where doctors sometimes tell a patient that they have X number of months left to live, but as someone with Alzheimer’s gets into the later stages, there may come a time when a recommendation that hospice care is available will be presented to you. Normally, hospices won’t accept patients without a diagnosis that he or she has six or fewer months to live, but if hospice care is available, it might be an option you should consider.
Hospice care is gentler than hospital care, as the staff isn’t trying to prolong life, but is just trying to make this last phase in a person’s life as comfortable as possible. Many patients with dementia become more agitated in a hospital because of all the noise and activity, while a hospice will be more soothing. Medicare will cover most of the costs, and if you are at your wit’s end, putting your loved one in a hospice may be the right solution for you. You can even use hospice care as a respite, as you can always ask for your loved one to return home to you after you’ve regained your strength.
Because a patient with severe Alzheimer’s cannot legally consent to hospice care, this option will be open to you only if you have had the proper forms (healthcare proxy, durable power of attorney, living will) signed while your loved one was still able to do so.
DEATH
Alzheimer’s is the sixth leading cause of death in this country. The cause of death for most people with Alzheimer’s is malnutrition, as eventually they can no longer eat. Their brain loses so much function that the person can no longer chew or swallow. However, if a feeding tube is inserted, someone with Alzheimer’s can continue to live for quite some time. But in many cases, it is the family, usually the caregiver, who must make the decision regarding life and death. The doctor will offer the option of a feeding tube, and if the decision is not to have this procedure, the patient will probably pass away within a week.
As if it weren’t bad enough that a caregiver has to devote years to fighting the ravages of this awful disease in someone they love, Alzheimer’s gets in a last blow by handing the decision to end this person’s life to the caregiver. Once again, the only way to soften this blow is to talk about this at the very beginning and have the person with the disease proactively decide the terms of their final days. The caregiver may still feel bad when giving the order not to insert a feeding tube, but at least this person will be able to take some consolation in the fact that they are carrying out their loved one’s wishes.
Alzheimer’s is a disease and, like any medical condition, it’s natural to turn to the medical community for help. But there’s no cure for Alzheimer’s and, in fact, the few options for slowing it down aren’t very effective. So, the reality is that you, the caregiver, are mostly on your own. The best piece of advice I can give you with regards to medicine and yourself is to make sure that you do whatever is necessary to maintain your own health. Yes, you have to do everything you can for your loved one, but the real health priority is for you to stay healthy so that you can continue to function effectively as a caregiver.