The Alzheimer’s Challenge

Though he never suffered from the disease that would later bear his name, Dr. Alois Alzheimer, a teacher of microbiology, was notoriously forgetful. A heavy cigar smoker, while looking in students’ microscopes he would leave his cigar on the table, forget where he put it and go back to his desk to retrieve another. At the end of one class, a student reported there were 20 smoldering cigars lying on the laboratory tables.

When Dr. Alzheimer met 51-year-old Frau Auguste D____ in 1901, he found her confused, disoriented and forgetful. As she deteriorated, she told her doctor, “I have lost myself.” 1 After her death in 1906, Alzheimer studied Auguste’s brain. In a textbook published in 1910, Dr. Alzheimer’s colleague, Dr. Kraepelin, named the disease after its founder and diagnosed Auguste with Alzheimer’s disease. Because of her failing memory, no one ever knew her full name.2

Dementia may be defined as “an acquired, generalized and often progressive impairment of cognitive function that affects the content…of consciousness.”3 Only 10% of dementias are considered reversible. Alzheimer’s is not one of them. According to The Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, signs of Alzheimer’s disease include: memory impairment, aphasia (language disturbance), apraxia (impaired motor function), agnosia (failure to recognize otherwise-familiar objects) and disturbance in executive function (failure to plan, organize and think abstractly).4 The odds of developing Alzheimer’s are 1% at age 60; the rate doubles every five years afterward.5

Age is the strongest risk factor. Alzheimer’s before age 60 (known as “early-onset Alzheimer’s”) is rare. The risk from a family history is debatable. The percentage of cases proven to be familial is small. Down syndrome, in itself, is a painful reality without the complication of Alzheimer’s. Unfortunately, nearly 100% of those with Down syndrome will develop the disease. Female gender is also a controversial risk factor. Though Alzheimer’s is more prevalent in women than in men, women do live longer. After this variable is controlled, women still have a greater risk of developing the disease. The reason is uncertain.

The Stages of Alzheimer’s6

Alzheimer’s is a progressive disease and its stages are loosely defined:

Mild

• Problems with short-term memory
• Asking questions repeatedly
• Getting lost in conversation
• Problems with abstract thought
• Unpredictable mood
• Misplacing everyday items (like putting a wallet in the refrigerator)
• Disorientation to time and place
• Getting lost easily

Moderate

• Compromised ability to read and write
• Feelings of agitation
• Difficulty communicating
• Presence of hallucinations or delusions
• Disruption in typical sleep patterns
• Difficulty recognizing relatives
• Inappropriate behavior

Severe

• Near complete absence of memory
• Difficulty speaking and understanding
• Expressing little or no emotion
• Incontinence
• Difficulty swallowing
• Randomly grasping for objects or people.

The disease may persist for 20 years or more. Some neurologists have found that an average of seven years elapses between its initial symptoms and the diagnosis.7 While EMTs are not responsible for knowing or diagnosing the stages, knowledge of the disease’s progression may give a better perspective when treating a patient.8

The pathologic signs of Alzheimer’s are: neurofibrillary tangles, amyloid plaques and shrinkage of the hippocampus. Amyloid plaques—deposits of protein on the surface of the brain—are the hallmark sign of the disease. These plaques appear as dark spots on the brain, surrounded by an area of inflammation.6 As the name suggests, neurofibrillary tangles exist in brain tissue.5 The hippocampus is the center for memory delegation in the brain; it is like the distributor of memory to other parts of the brain.9 The hippocampus is typically affected first in the course of the disease, which is the reason memory problems are often the first sign.

EMS providers often have a limited understanding of Alzheimer’s patients and may feel uncomfortable treating them. This perception is based, in part, on the difficulty of communicating with these patients. Taking histories can be challenging, especially if caretakers are not knowledgeable about the patient’s condition. EMS providers may be bothered by the patient’s use of repetitive or apparently nonsensical language. The patient may grasp for objects, or even the EMT, which can be frustrating. Our perspective of this disease can be modified. EMS providers can make a difference through communication, patient assessment and operating with a broader background in dementia.

Create the Right Environment

We can only speculate on what it is like to have Alzheimer’s. In The Moral Challenge of Alzheimer’s Disease, Stephen Post explains, “It is useful to realize that persons with a diagnosis of Alzheimer’s seek meaning in the same way that we all do, and their struggles to make sense of loss are akin to our own.”10 People with the disease may be unable to speak, but that doesn’t mean they lack ideas or things to say. They may try to communicate in other ways: They may shout or use a word repeatedly, stand up suddenly as if to walk away or try to hold your hand. These actions are best interpreted as attempts to communicate. Patients’ families often know what the patient needs because they have learned the signs. Though it is difficult, we must try to listen and interpret.

Alzheimer’s patients are highly sensitive to their surroundings: Lighting, sound, voices, noise level, physical position and physical sensations heavily influence Alzheimer’s patients. There are a few important changes we can make to improve the patient’s environment:

• Avoid TV and radio

Alzheimer’s patients are easily confused by the presence of voices in the absence of people.

• Keep the lights bright

Though most people consider dim lighting more soothing, for an Alzheimer’s patient, it is just confusing. Their ability to properly perceive objects, compromised from the outset, is exacerbated by poor lighting.

• Keep your voice down

Unless you know the patient is hard of hearing, there is no reason to assume he is. Calmer voices yield calmer patients. 11

Once the environment is appropriate, the challenge of communication begins.

No one knows how much patients with advanced Alzheimer’s understand. When in doubt, assume they understand everything. Do not speak about them as if they aren’t there. Transporting a demented patient is not a good time to catch up on conversation with your partner. Demented patients respond more readily to touch than to voice. As explained by one source, “‘The gift of touch’…short-circuits the need to think of mind and communication as only renderable in words and sentences.”2 Touching the patient’s shoulder or holding her hand may do wonders to alleviate a patient’s anxiety (which, in an ambulance, will be considerable). Make eye contact as much as possible. Patients with dementia find this comforting. When uncertain, assume the patient can speak until proven otherwise. Unlike the rest of your patients, this population requires concrete, closed-end questions. “How are you feeling?” will not mean much to someone who has trouble with abstract thought. Instead, you may ask (depending on the complaint), “Does your arm hurt?” or “Is it hard for you to breathe?” Remember to maintain physical contact and eye contact, and ask simple questions in a calming voice.

Behaviors may be unpredictable. Many patients suffer from delusions and hallucinations. A patient may say, for example, “They’re going to come after me at the hospital.” Delusions sometimes bother healthcare providers more than they do those who suffer from them. Do not try to correct a delusion or a hallucination by saying, “No one at the hospital is going to come after you.” Delusions and hallucinations are real to those who experience them. This is the patient’s reality, and you will not be able to correct their perceptions. Instead, recognize that this patient may be anxious. A better response might be, “It must be difficult to feel that way. I am going to help you feel better.” Notice that these statements recognize the emotion, but not the content of what the patient said. The statement, “I am going to help you feel better” involves only you and the patient.12 This is easier to understand and more helpful to the patient.

Many preconceived notions about people with dementia can be overridden. To varying degrees, many patients can listen and communicate in some form. Dementia patients are a special population that challenges the skills and empathy of all healthcare providers.13

Treatment

Alzheimer’s treatment limits the production of acetylcholinesterase and thereby increases the amount of circulating acetylcholine. The acetylcholinesterase inhibitors currently available are: tacrine (Cognex), donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl). Of these, Aricept is the most commonly prescribed.5 These drugs may have one of three effects: They may temporarily improve cognitive functioning; they may maintain the current level of cognitive functioning for some time (approximately one year); or they may slow the rate of cognitive decline. None of these medicines work indefinitely. They are intended for mild to moderate sufferers. Until recently, people were on these medications for three to five years, at which point the drug was stopped. However, there is some evidence that these drugs may help if given for a lifetime. As time goes by, the improvements may be subtle. Some evidence shows that signs of severe Alzheimer’s, such as incontinence, may be delayed in those who continue these drugs.14 In Alzheimer’s disease, victories are small.

The Food and Drug Administration (FDA) approved memantine (Namenda) in October 2003. This drug is for individuals in moderate to late stages of Alzheimer’s disease. It appears that memantine works by regulating the activity of glutamate, one of the brain’s specialized messenger chemicals involved in information processing, storage and retrieval. Glutamate plays an essential role in learning and memory by controlling the amount of calcium to flow into a new cell, creating the chemical environment required for information storage. Similar to acetylcholinesterase inhibitors, the effects of memantine are modest. Research data have shown that individuals who take both memantine and an acetylcholinesterase inhibitor do not experience significantly greater benefit in cognition or overall function than those who just received the acetylcholinesterase inhibitor and a placebo.

As the disease progresses, secondary problems often develop. Some frequent medical problems associated with early and middle-stage Alzheimer’s include: depression, anxiety, psychosis and insomnia. These are all treatable problems, but are often treated conservatively. Depression tends to occur early in the onset of the disease. Psychosis (including delusions and hallucinations) is another part of the disease, but patients with these symptoms are not considered schizophrenic. Insomnia is nearly a universal part of the disease.5 Secondary problems and symptoms are treatable. The commonly used antidepressants are selective serotonin reuptake inhibitors, such as Prozac, Paxil, Zoloft and others. Anxiety is frequently treated with benzodiazepines. Possibilities include clonazepam or Ativan. Psychosis is often treated with a class of medicines known as atypical antipsychotics, which include clozapine (Clozaril), risperidone (Risperdal), and olanzapine (Zyprexa). Patients with insomnia may be given a modified benzodiazepine, zolpidem (Ambien), or an antidepressant with sedating effects (trazodone) to help them sleep and regulate their diurnal rhythm.15 Treating Alzheimer’s as a whole is a great challenge, but treating accompanying symptoms and medical problems is effective and important to the quality of life of its sufferers.

ALS providers often treat Alzheimer’s patients conservatively. The dilemma is understandable. Nearly all patients who present with dementia may qualify as “altered mental status.” However, Alzheimer’s patients should have the same treatment options as other patients. A common reason caretakers say they’ve called an ambulance is, “he just isn’t acting right.” People who have chronic diseases may have acute or emergent conditions. Demented patients who are also diabetic and are said to be acting differently should have a glucose-level determination. ALS providers may be less likely to check the sugar on a diabetic with Alzheimer’s than on a diabetic without the disease. Depending on the patient’s ability to communicate and the knowledge of his caretakers, we may need to base nearly all of our information on the physical exam. If a patient with Alzheimer’s has chest pain or difficulty breathing, he may not be able to tell you. Consider applying a cardiac monitor if you feel the clinical situation warrants it.

Summary

We underestimate our ability to communicate with and treat patients with Alzheimer’s. Knowledge about the disease’s origin, progression and symptomology can help EMS providers effectively communicate and treat patients with dementia.

References

1. Shenk D. The Forgetting: Alzheimer’s, Portrait of an Epidemic. New York: Doubleday, 2001.

2. Whitehouse PJ, Maurer MD, Ballenger JF, eds. Concepts of Alzheimer’s Disease: Biological, Clinical, and Cultural Perspectives. Baltimore, MD: The Johns Hopkins University Press, 2000.

3. Simon RP, Aminoff MJ, Greenberg DA. Clinical Neurology, 4th Ed., p. 50. Stamford, CT: Appleton and Lange, 1999.

4. American Psychiatric Association. Diagnostic Criteria from DSM-IV, pp. 85–87. Washington D.C.: American Psychiatric Association, 1995.

5. Geldmacher DS. Contemporary Diagnosis and Management of Alzheimer’s Disease. Newton, PA: Handbooks in Healthcare Co., 2001.

6. Peterson R. Mayo Clinic on Alzheimer’s Disease, Mayo Clinic, Rochester, MN, 2002.

7. Victor M, Roper AH. Adams and Victor’s Principles of Neurology, 7th Ed., New York, NY: McGraw-Hill Medical Publishing Division, 2001.

8. Nixon RG. Geriatric Prehospital Care. Upper Saddle River, NJ: Prentice Hall, 2003.

9. Haines DE, ed. Fundamental Neuroscience. Philadelphia, PA: Churchill Livingstone, 2002.

10. Post SG. The Moral Challenge of Alzheimer’s Disease. Baltimore, MD: The Johns Hopkins University Press, 2000.

11. Gruetzner H. Alzheimer’s: A Caregiver’s Guide and Sourcebook. New York, NY: John Wiley & Sons, Inc., 1992.

12. Santo Pietro MJ, Ostuni E. Successful Communication with Alzheimer’s Disease Patients. Boston, MA: Butterworth-Heinemann, 1997.

13. Cummings JL, et al. Guidelines for managing Alzheimer’s disease: Part I. Assessment. American Family Physician. American Academy of Family Physicians, June 1, 2002. www.aafp.org/afp/20020601/2263.html.

14. Personal interview with Oded Gerber, MD, associate professor of neurology, Stony Brook Hospital, NY, May 29, 2003.

15. Kaplan HI, Saddock BJ. Kaplan and Saddock’s Synopsis of Psychiatry, 8th Ed., New York, NY: Lippincott, Williams and Wilkins, 1998.

16. Gillick MR. Tangled Minds: Understanding Alzheimer’s Disease and Other Dementias. New York, NY:?Dutton, 1998.

A President Is Diagnosed

In 1983, when well-known actress Rita Hayworth was diagnosed with Alzheimer’s, her daughter wrote to first-term President Ronald Reagan asking for help. His response was eloquent: “For too long, this insidious, indiscriminate killer of mind and life has gone undetected while the families of its victims have gone unaided.” Reagan increased the budget for Alzheimer’s research—a surprising move in what proved to be difficult economic times.16

In 1994, five years after his departure from office, former president Reagan publicly admitted that he had been diagnosed with Alzheimer’s and was no longer making public appearances. In 1999, his eldest daughter, Maureen Reagan, appeared on the Today Show with Ann Curry. When Ms. Curry asked Maureen, “Does [your father] remember being president?” the president’s daughter refused to answer.1