Joy A. Glenner Read online

  The Specifics of Alzheimer Disease and Other Dementing Illnesses

  The History of Alzheimer Disease

  Alzheimer disease is a neurological disorder or disease most common in older adults. It destroys vital brain cells, causing a global decline in the ability to function.

  In 1907 a German psychiatrist, Dr. Alois Alzheimer, discovered abnormal “plaques and tangles” in the cerebral cortex, or “gray matter,” the outer layer of the brain. It was called “presenile dementia” because the brain damage was first seen in patients under age sixty-five.

  In 1968 three British pathologists determined that AD was not a rare disease of younger patients, but was most often, in fact, what was then termed senility.

  The Pathology of Alzheimer Disease

  There seem to be several different genes causing AD. Sometimes AD is familial (runs in families); other times it occurs randomly but more commonly with age.

  In 1984 Dr. George Glenner identified a body protein associated with a gene on chromosome 21, called beta-amyloid protein. It is found in the brains of all patients with AD. The beta-amyloid and another protein called “tau” are responsible for causing the brain damage. Tau protein is found in the tangles (see fig. 1-1).

  Statistics

  • AD is the most common cause of dementia, accounting for 65 percent of those with a dementing illness.

  • More than four million adults have AD.

  • One out of five people over age sixty-five is affected. The rate increases to nearly half of those age eighty-five and older. The disease is costing more than $100 billion a year in the United States.

  Fig. 1-1. The brain damage of Alzheimer disease. The beta-amyloid protein is taken up by the cells of blood vessels in the brain (1). A small portion of this protein breaks through blood vessels and is the primary component of abnormal plaques exterior to brain cells (2). The tau protein is the primary component of amyloid fibers in brain cells (3).

  • AD is the cause of more than 50 percent of nursing home admissions.

  Other Dementing Illnesses

  There are other dementias too, and a good diagnosis can determine if a patient has one of them. A person can have more than one type of dementia. Some types of dementia are treatable, so a good diagnosis is essential.

  Other illnesses that cause dementia are numerous but are rarer than AD. More than 50 percent of persons with dementia have AD. Patients with other dementing illnesses have similar symptoms. Also, a person may have more than one type of dementia at a time, making the differential diagnosis more complex. The suggestions and techniques in this book can be used with anyone with dementia.

  Other progressive and untreatable dementing illnesses include:

  • vascular dementia

  • frontotemporal lobe dementia and Pick disease

  • Creutzfeldt-Jakob disease

  • Lewy body dementia

  • dementia associated with Parkinson disease

  The primary symptom or a common symptom of all dementias is cognitive decline. Other symptoms may also be present. A differential diagnosis will determine whether the disease is AD or another cause of dementia.

  There are also treatable, or nonprogressive, dementias. It is very important to obtain an accurate diagnosis so that your partner can receive appropriate treatment. Treatable conditions include:

  • Drug side effects or interactions: This is very common, so look at multiple drug use or improper dosage of prescription drugs as a first cause of the dementia. Be sure to bring all medications (including nonprescription and herbal remedies) to your partner’s diagnostic evaluation.

  • Poor nutrition: Frail older adults without someone to monitor their condition and provide care may have symptoms of dementia caused by poor nutrition.

  • Depression: Sometimes a person will deny feeling “down” or “sad” but may experience symptoms of depression such as apathy, sleeping long hours, or having trouble sleeping. The person may express anxiety or withdraw. There is no actual brain tissue damage, so it is referred to as a “pseudo-” (false) dementia. There may, however, be a chemical imbalance. Depression is also common with any diagnosis of dementia or another debilitating disease and can easily be treated with medication.

  • Alcoholism (a severe form is Korsakoff syndrome): Alcoholism is often combined with depression and can lead to serious health problems, even death. It can be more serious with poor nutrition, if the person is weak due to illness or is taking certain types of prescription medications. If the person stops drinking alcohol, the dementia will at least not get worse and may improve.

  • Hypothyroidism: The person may have unexplained weight gain, puffy face or eye areas, slowed speech, or increased sensitivity to cold. It is easily treated with medication.

  • Vitamin B12 deficiency: Pernicious anemia is a result of the body’s inability to absorb vitamin B12 in the diet. The person may become weak and pale and may lose weight. Injections of B12 will help very quickly (but not taking vitamin B12 by mouth).

  Remember, if you see signs of dementia in daily life with your partner, be sure to tell your physician because the condition may be treatable.

  Seeing the Difference: A CAT Scan

  Figure 1-2 shows the difference between normal aging, AD, and vascular dementia. Cerebral atrophy (loss of cell fluids causing death of the cell) in the brain’s gray matter characterizes AD. Cell atrophy occurs first in the hippocampus. Ventricles also become enlarged due to the loss of the gray matter. In vascular dementia damage is more random and occurs in other areas of the brain besides the cerebral cortex.

  Fig. 1-2. CAT scans showing the difference between a normal brain, a brain with Alzheimer disease, and a brain with vascular dementia.

  Diagnosis, Treatment, and Prevention of Alzheimer Disease

  More and more progress is being made in diagnosing, treating, and even possibly preventing AD.

  Diagnosis

  Admitting to a problem is difficult, so getting a comprehensive evaluation and diagnosis for your partner is a big step. If you use a reputable clinic that does a thorough differential diagnosis, you can rely on that opinion. Sometimes the diagnosis will be “probable Alzheimer disease” or “progressive dementia.” This is okay if you know the diagnosis was thorough and eliminated the possibility of treatable symptoms.

  Good clinics can be found nationwide. The Alzheimer’s Association has a referral list of chapters across the United States, or check with the National Institute on Aging, Alzheimer’s Disease Education and Referral (ADEAR) (see Resources page).

  Getting a differential diagnosis is the best way to determine that a person has AD. It differentiates the symptoms from other diseases, so the process is complicated, and it takes more than one visit to a clinic. The differential diagnostic process is so dependable today that the accuracy rate as measured against evidence from an autopsy is 90 percent. Nevertheless, AD can only be positively diagnosed at autopsy.

  It is very important to get an accurate diagnosis. There are treatable dementing illnesses. Once you make the commitment to get a diagnosis, be sure to follow through. It is time-consuming but worth it.

  Treatment and Prevention

  Medications in tablet form which can temporarily slow the dementing process are now frequently prescribed, but even with these medications the disease will eventually get worse. Alzheimer disease is always progressive and lethal (fatal)—it always results in death.

  The best treatment to date is the use of cholinesterase inhibitors. These are medications that keep the enzyme acetylcholinesterase from breaking down an important chemical, acetylcholine, needed to make connections between brain cells.

  • Aricept (donepezil) is a commonly used cholinesterase inhibitor. Physicians are now prescribing it not just for early-stage AD but also for mild cognitive impairment.

  • Other cholinesterase inhibitors are Excelon (rivastigmine) and Reminyl (galantamine). Namenda (memantine) has been approved for the treatment of moderate to s
evere AD. It is believed to work by regulating glutamate, an important brain chemical that may lead to brain cell death when it is produced in excessive amounts.

  The inhibitors slow the progress of AD symptoms, but even with them patients’ conditions do eventually deteriorate.

  Vitamin E and anti-inflammatory drugs such as aspirin are being studied for their effectiveness in preventing and treating AD, with mixed results.

  Herbal remedies such as ginkgo biloba are being studied also. But ginkgo biloba has a blood-thinning effect and can be dangerous when combined with other blood thinners, even common aspirin.

  Reminder: Herbal remedies are medicine also. Always report any herbal remedy when your physician asks what medications you or your partner are taking.

  A vaccine to block the beta-amyloid protein segment that forms plaques shows promise as a way to prevent and treat AD. Clinical trials on gene replacement therapy in human beings are under way.

  Accepting the Diagnosis

  Once you have a reliable diagnosis of your partner’s dementia, it is important that you accept it. You must understand and work with your partner the way the person is now.

  A good relationship with your partner depends on you. The person cannot be retaught. You cannot “reason” with him or her. The person is not “just being difficult” or trying to “get back at you.” Because the person cannot change, your approach toward him or her must change.

  You are now the one in charge, the lead partner, and this may be a new role for you. Even if your partner appears normal most of the time, you cannot depend on him or her to use good judgment anymore. The person’s safety and well-being depend on your acceptance of the caregiver’s role.

  Whether you tell your partner the diagnosis depends on his or her temperament and level of understanding. If the person is already very anxious or seems completely unaware of or denies symptoms, it may be best to avoid the subject. If the person asks, try saying “You are more forgetful than you used to be” or that he or she has “trouble with memory.” See how this goes. If your partner responds well and asks for additional information, you can say more. If the person becomes extremely anxious and dwells on your remark, it would probably be better to stop there.

  Accepting the diagnosis is essential to your relationship with your partner. Keep in mind that trying to make your partner relearn or remember things he or she has forgotten will not work. It will only upset the person and harm your relationship—your partnership. You will learn how to avoid or redirect your partner from difficult behaviors in this book, but you cannot make the person “better” or “normal.”

  Going On Together, Day by Day

  Becoming and staying close—communicating naturally—is easier once you accept the diagnosis. It is the key to smoother sailing as a caregiver.

  If you are new at this (an adult child now living with a parent or a sibling caring for a sibling, for example), you must get to know your relative better and learn to communicate effectively. He or she will not be quite the same person you knew in the past. You will probably need to develop a different way of relating to the person.

  It may become difficult to keep your relationship positive and to keep communicating well, even if you have been together a long time. You will now have to work at what used to come naturally. The method and nature of communication may need to change.

  Suggestions: A person with mild dementia may be able to tell you how he or she feels and to understand what is happening. Many have written thoughtful accounts of what they experience. It is also very common, unfortunately, for a patient to deny that anything is wrong.

  Regardless of your partner’s awareness of the problem, set aside time each day to visit, observe your partner closely, and assess how he or she is doing. If your partner has severe dementia, the communication may be all nonverbal, but that is important too. You need to stay positive and receptive. The goal is to understand how your partner feels that day and to maintain your connection as the disease progresses. Pick a time with few distractions—a daily walk, afternoon tea, a drink before dinner, or drying dishes together.

  You can’t remember everything, so it helps considerably to keep some sort of an assessment diary. This could include notes on changes you see in your partner and how you deal with difficult situations. If your partner is able, his or her insights will help too. This diary will be useful at doctors’ appointments and, most important, can guide you in understanding and dealing with your partner effectively as the disease progresses.

  Daily talks and a diary will also be helpful if you are concerned about changes in your partner but are not sure there is a problem. They can help you (and your partner if he or she is aware of changes) decide if the patient needs an evaluation.

  What if a difficult past cannot stay “in the past”? If your relationship with your family member was poor in the past, you need to decide if you can leave that history behind. Some issues can be put aside, some cannot. You need to be able to establish a close, positive relationship, or caregiving will be very difficult for you both. It is important to be honest with yourself and other family members. Sometimes a professional counselor can help. If your past together was very painful, it may be best for you to choose another caregiving option.

  2 Preparing for the Future

  Goal: This chapter will help you decide what long-term planning you need to do, both for your partner with dementia and for you.

  Why Begin Long-Term Planning Now?

  You may feel you can put off long-term planning if your partner’s dementia is stable or is progressing very slowly. “Wait and see” is dangerous reasoning. If your partner suddenly declines more rapidly or exhibits behaviors that are too difficult for you to handle, you may need new legal, financial, or long-term care plans immediately.

  You may feel you can wait because you are “in great shape” and “can handle anything.” This can change without warning too, especially under the added stress of caregiving. Waiting could leave you and your partner in a precarious situation. Caregiving can be more stressful than you realize at the time.

  Some words of caution:

  • To stay in good health, make sure to spend time doing things that you enjoy and that have nothing to do with caregiving.

  • Make time for plenty of rest and for your own physical care. Keep your doctor’s appointments. You cannot be a good care-giver if you are tired, ill, or overly stressed.

  If you are putting off long-term planning, examine your reasons. It is difficult, painful, and sad to plan the future for someone who has dementia. It is natural to want to put off such feelings for as long as possible. Putting them off may be another way of denying that there is a problem.

  Try to keep in mind that you will feel more satisfied and less stressed once you are prepared. You will be better able to handle the future, even if it is very difficult. Reducing stress will also make you a better caregiver.

  What Plans Do You Need to Make?

  Make a list of things you know you need to do, questions, and concerns about long-term planning. Check it frequently, and revise it as needed. The clinic where your partner received the diagnosis of dementia should be able to advise you on long-term planning to some extent and to make referrals for you.

  You need to start long-term planning now, but it will be an ongoing process and may change as your partner changes throughout the course of the disease. There are three main areas you will need to address:

  1. establishing a good support system

  2. health care planning

  3. financial planning for you and your partner

  Establishing a Good Support System

  Involving Family Members and Friends: Usually but Not Always a Good Idea

  You will probably need to inform other family members and perhaps close friends of the diagnosis when the time is appropriate. Close relatives may be hurt or angry if they are not informed, but deciding when to inform them is up to you and your partner. It may help you to sha
re long-term planning concerns with at least some of them. Do not be embarrassed to state that a family member has dementia. Your life and your partner’s will be easier if you don’t try to hide it as symptoms become more severe.

  As you go over your concerns and long-range planning ideas with family members, do not let them minimize your concerns. Their claim that “Dad’s all right,” for example, may make you want to back off and address issues later or “only if we need it.” Your goal in involving your family is to gain new perspectives, helpful suggestions, and a good support system for yourself.

  You might be surprised. Family members may offer assistance. Accept it if it is offered—you cannot do it all alone. They may have new ideas or even referrals for you. Responsible relatives can be the base for a good support system, but, if their involvement is in any way detrimental to you or your partner emotionally, don’t hesitate to ask them to stay away.

  Should the person with dementia be involved in these family discussions? Depending on your partner’s level of understanding, he or she may be involved in informing others of the diagnosis. The person may also have other family members he or she confides in regularly. The patient needs a good support system too. Long-term planning, however, can be very frightening and difficult for many ill people. It may be best to discuss plans for the future when your partner is elsewhere. If the person expresses concerns about the future, what he or she needs to hear is that you will be there for help and support. Do not make promises you may not be able to keep (“I will never place you in a nursing home” or “No one will ever care for you but me,” for example).

  Caring Professionals Can Help

  There are literally hundreds of books and thousands of Web sites on AD and other dementias. There are several good dementia care journals, and conferences are held worldwide. There are also Internet chat rooms for caregivers—a support group whenever you need one.