BY CONNIE PIGNATARO
According to the 2010 U.S. census, the older population (65 years and older) increased at a faster rate (15.1 percent) than the total U.S. population (9.7 percent). The first wave of Baby Boomers reached retirement age last year, and over the next 20 years, 74 million Baby Boomers will retire. Unlike their parents, this generation will be more active. They exercise twice as much as previous generations.1 This more active lifestyle, along with improved treatment and prevention information, has already contributed to the declining mortality rates of most major diseases such as stroke, HIV, breast cancer, and heart disease between 2000 and 2008, but deaths from Alzheimer’s disease have risen to an alarming 66 percent during the same time period. Currently, one in eight older Americans (5.2 million) has Alzheimer’s disease, and it is estimated that by 2050, 16 million people in this country will suffer with Alzheimer’s.2
Emergency medical service (EMS) responders will find that more and more future patients will have Alzheimer’s or a related dementia. Not only must we understand this disease to provide quality care to our patients with Alzheimer’s, but we must also understand the burden that this disease places on loved ones, caregivers, the community, and our economy.
Alzheimer’s disease was first discovered in 1906 by Dr. Alois Alzheimer. During an autopsy, he was able to link the profound memory loss and other psychological changes in one of his patients to dramatic brain shrinkage and microscopic brain changes. The disease was not named until 1910, and it was not until 1987 that the first clinical drug trials of tacrine began in hopes of targeting the symptoms of Alzheimer’s disease. The Food and Drug Administration did not approve tacrine (Cognex) until 1993. The following drugs were then approved: donepezil (Aricept), rivastigmine (Exelon), galantamine (Razadyne), and memantine (Namenda). These medications simply treat the symptoms of the disease.3
Although Alzheimer’s disease has been studied for the past 100 years, science has not yet found a cure. This fatal disease is the sixth leading cause of death and is the only disease among the top 10 that cannot be prevented, cured, or even slowed. People 65 years of age and older diagnosed with Alzheimer’s disease live an average of four to six years after a diagnosis; some may live as long as 20 years. (2) The course of the disease depends on the age of the person and other preexisting health conditions.
STAGES OF ALZHEIMER’S DISEASE
According to the Alzheimer’s Association, people living with this disease progress through seven stages, which may overlap. In the first stage, the person is completely normal and has no symptoms. By the second stage, the person exhibits very mild cognitive decline such as forgetting the location of everyday objects or familiar words. Although memory loss is the most common sign of Alzheimer’s, forgetting information like names or appointments but remembering them later is a typical age-related change. People with Alzheimer’s will progress through the stages from mild to moderate to severe to the point where they will not be able to carry on a conversation, control movement, or take care of themselves. They may also have personality changes and lose the ability to smile, hold their head up, or even swallow.
Although researchers have not yet been able to determine the cause of Alzheimer’s disease, they do know how the brain is affected. The human brain contains 100 billion neurons. Alzheimer’s disease destroys these neurons, which disrupts the way electrical charges travel through these nerve cells and interfere with the activity of the neurotransmitters that carry signals to other cells. This attack leads to nerve cell death and tissue loss throughout the brain, causing the brain to shrink dramatically. Along with nerve cell death, abnormal clusters of protein fragments, called plaques, build up between nerve cells. When nerve cells are dead, they leave tangles, twisted strands of the protein tau in their place.4All this leads to a brain that can no longer function properly, resulting in dementia and physical disability.
INTERACTING WITH PATIENTS
As EMS responders, we all have our share of uncooperative and combative patients. Some of these patients have Alzheimer’s and require specialized care.
“If persons with Alzheimer’s are uncooperative, they are most likely scared and do not understand what is happening,” says Shelly Edwards, programs and services manager at the Alzheimer’s Association National Capital Area Chapter. “Their response time is going to be slower than an EMS responder might be expecting, so the responder may have to wait a few seconds for a response.”
Edwards also says that people with Alzheimer’s are more inclined to pay attention to tone of voice and body language than the words being spoken. Before performing a procedure on the patient with Alzheimer’s, Edwards suggests that responders demonstrate and explain what they are going to do before doing it by breaking the demonstration or instructions into small steps. If information is required from the patient, she suggests that responders ask one question at a time and wait for a response. If they do not answer or do not understand, ask the same question again without changing the words. The patient may just need to have the words spoken again to comprehend what is being said. Edwards also suggests that if responders have the extra time, they should talk to the patient and try to connect with him or her by talking about the patient’s favorite team or a hobby, or ask the patient about a family member. Remember to always treat the patient as an adult.
Use positive reinforcement such as smiles and praise, and always maintain a calm demeanor even if the patient becomes aggressive, as this can usually diffuse the situation and calm the patient’s fears.5Although Alzheimer’s patients can be combative, uncooperative, and verbally threatening, Alzheimer’s disease is not a psychiatric or a behavioral disorder; it is a medical condition in the brain. Patients requiring transport need to be taken to a medical facility for treatment.
CAREGIVERS AND RESOURCES
Caregivers, family, and friends of people with Alzheimer’s know all too well the devastation this disease creates within families. Unpaid family members provide 80 percent of care for these patients at home, estimated to be valued at $210 billion in 2011. But family caregivers often suffer from high levels of emotional stress and depression, which also has a negative impact on health, employment, income, and family finances. In fact, 61 percent of these caregivers rated their emotional stress level as high or very high. (2) Caregivers may also become patients themselves as a result of the emotional and physical stresses. The annual healthcare costs to treat caregivers in 2011 were estimated to be $8.7 billion in the United States. (2)
Overwhelmed caregivers have several resources to help them cope. The Alzheimer’s Association has a helpline (1-800-272-3900) staffed 24 hours a day, seven days a week, and can accommodate 150 languages. The Association also provides education, counseling by licensed social workers, and access to local resources (Web site: www.alz.org). The Alzheimer’s Foundation of America (1-800-AFA-8484, www.alzfdn.org) also provides information, counseling, referrals to licensed social workers, and local resource information.
PUBLIC SAFETY PROGRAMS
As the disease progresses, people with Alzheimer’s require an increasing level of supervision and care. It is estimated that up to 70 percent of people with Alzheimer’s will wander from their caregiver or place of residence.6It is also common for people with Alzheimer’s to be on routine outings and become disoriented, confused, and lost. When a person with Alzheimer’s is missing, this family problem now becomes a community problem. In the past, searches for these people have been exhaustive, expensive, and often ended tragically.
To address this issue, the International Association of Chiefs of Police (IACP) created an Alzheimer’s initiatives program in 2009 to protect this special population. The IACP partnered with the Bureau of Justice Assistance, Office of Justice Programs, U.S. Department of Justice to help law enforcement to be more effective in handling calls involving people with Alzheimer’s. The program not only includes training, education, and resources to help law enforcement to improve their interactions with people with Alzheimer’s but also provides resources for writing policy to effectively respond to missing people with Alzheimer’s.
During their training, law enforcement personnel learn that the neurological and sensory deficit that people with Alzheimer’s have contributes to their inability to recognize the body’s signals to stop, including pain, dehydration, and hunger. (6) They are also taught that missing people with Alzheimer’s do not take a logical path, will often seclude themselves, and most likely will not respond to anyone calling for them. (6)
Although 75 percent of people with Alzheimer’s leave on foot, many leave in a vehicle. To help locate these individuals, the Silver Alert program, modeled after the Amber Alert program, was designed for law enforcement agencies to broadcast information on missing people with Alzheimer’s or other cognitive disorders who become lost while operating a motor vehicle. Forty states currently have a Silver Alert or other alerting program.7 One of those states is Florida, which has the highest percentage of people 65 years old and older. Florida has been using the Silver Alert program since October 2008 and has had 493 alerts issued since its inception. The Palm Beach County Sheriff’s Office has issued the greatest number of alerts in the state. Since that time, all but 10 of those people have been found alive.8
Another program to help find lost people with Alzheimer’s is Project Lifesaver. Since April 1999, this nonprofit organization has been working with public safety organizations and providing equipment to locate missing people with Alzheimer’s, autism, and other cognitive disorders.
“Project Lifesaver was started as a result of failure in regular search and rescue operations,” says Elizabeth Kappes, director of media and communications, Project Lifesaver International. “Project Lifesaver has operated more than 2,500 successful searches, with no serious injuries or fatalities reported.”
The organization works with 1,200 law enforcement and public safety agencies throughout 47 states in the United States, Canada, and Australia. To participate in the program, caregivers must enroll people with Alzheimer’s. The enrolled individuals wear a watch-sized transmitter on their wrist or ankle that emits an individualized radio frequency. If they wander, the nearest Project Lifesaver trained and certified public safety agency will tune into the frequency and find the individual.
“Our most memorable success story was our first. The gentleman had gone missing once before for over eight hours,” says Gene Saunders, CEO and founder, Project Lifesaver International. “It took over 70 people to locate him about a quarter mile from his house in a wooded area. The next time, with Project Lifesaver, we tracked him approximately 150 yards into an apartment complex, where he had gone into a storage closet under a stairway and locked the door behind him. Recover time was approximately one and a half minutes. This showed the program could work.”
Two other programs available are MedicAlert® + Alzheimer’s Association Safe Return® and Comfort Zone® (comprehensive Web-based location management service). If an individual with Alzheimer’s or a related dementia wanders and becomes lost, caregivers can call the 24-hour emergency response line (1-800-625-3780) to report it. A community support network, including local Alzheimer’s Association chapters and law enforcement agencies, are activated to help reunite the family member or caregiver with the person who wandered. With this enhanced service, critical medical information is provided to emergency responders when needed. The Association has a 98-percent found safely rate nationally.
EMS responders are rarely involved in searching for missing people with Alz-heimer’s. They will more likely respond to an elderly person living alone. As the responders assess their patient, they notice the person appears confused, is slovenly or uncooperative, or exhibits other odd behavior. After checking for hypoglycemia, perfusion levels, hypoxia, stroke, or possible ST segment elevated myocardial infarction, the responders conclude that something else is causing the altered mental status. Responders must ask themselves if the patient possibly has Alzheimer’s. If they determine this to be a possibility, it is up to the responders to investigate further as long as the patient is stable. Is the patient wearing a Medical Alert bracelet? Is there a File of Life on the refrigerator or in another highly visible spot? Can the patient recall the names and telephone numbers of any family members or friends? If no caregiver is found, it is the responder’s responsibility to contact someone at the local Adult Protective Services office to make sure this patient receives the care needed, especially if no caregiver is around. Adult Protective Services should also be contacted if a caregiver is with the patient and responders suspect possible abuse or neglect. At the very least, contact local law enforcement.
Many resources are dedicated to caring for, protecting, and rescuing people with Alzheimer’s. The Alzheimer’s Association estimates that the cost of caring for people with Alzheimer’s will be $200 billion in 2012, which includes $140 billion in Medicaid and Medicare costs. By 2050, costs will soar to a projected $1.1 trillion if nothing is done. (2) To address this issue, the National Alzheimer’s Project Act was signed into law on January 4, 2011, to prevent and effectively treat Alzheimer’s disease by 2025. To accomplish this goal, an integrated national plan will be created, and Alzheimer’s research will be coordinated across all federal agencies. The Act also states that the development of treatments to prevent, halt, or reverse Alzheimer’s will be accelerated and that methods for early diagnosis and the coordination of care and treatment will be improved.
Promising Alzheimer’s research that offers some hope for those looking to work toward decreasing their chances of developing Alzheimer’s disease is already underway. What researchers have found is that the risk of developing Alzheimer’s appears to increase as a result of conditions that tend to damage the heart or blood vessels such as high blood pressure, stroke, heart disease, diabetes, and high cholesterol. Some autopsy studies have shown that 80 percent of the people with Alzheimer’s also had cardiovascular disease.9 The Alz-heimer’s Association suggests that keeping the heart and cardiovascular system healthy keeps the brain healthy and may lower the risk of Alzheimer’s. It also suggests regular physical exercise and a heart-healthy diet consisting of whole grains, fruits, vegetables, fish, shellfish, nuts, and healthful oils like olive oil. Another possible risk-lowering activity would be to maintain social connections and keep mentally active. Finally, research has also found that there is a strong link between head trauma and the future risk of Alzheimer’s, especially when the injury involves loss of consciousness. (9) Protecting the head by using seat belts while in motor vehicles and wearing helmets when participating in sports may lower the risk.
Until more research is done and answers are found, EMS responders will continue to be challenged with caring for people with Alzheimer’s personally and professionally.
1. The Demographics of Aging. Transgenerational.org. Retrieved May 29, 2012.
2. Alzheimer’s Association. 2012. Alzheimer’s disease facts and figures. Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association. March 2012; 8:131–168.
3. Alzheimer’s Association. Research Center. Major Milestones. http://www.alz.org/research/science/major_milestones_in_alzheimers.asp. Retrieved May 26, 2012.
4. Alzheimer’s Disease and the Brain. Alzheimer’s Association. Retrieved May 30, 2012. http://www.alz.org/braintour/3_main_parts.asp.
5. Behavioral Challenges: Strategies to Head Off or Deal with Behavior Problems. Alzheimer’s Foundation of America. Retrieved June 1, 2012. http://www.alzfdn.org/EducationandCare/strategies.html.
6. Training Key #648. International Association of Chiefs of Police, Inc. http://www.theiacp.org/portals/0/pdfs/AlzheimersTrainingKey.pdf 2010.
7. International Association of Chiefs of Police. IACP’s Alzheimer’s Initiative. http://www.theiacp.org/About/Governance/Divisions/StateAssociationsofChiefsofPoliceSACOP/CurrentSACOPProjects/MissingAlzheimersDiseasePatientInitiative/tabid/897/Default.aspx (Retrieved May 24, 2012).
8. Lade, Diane C. Driving with Alzheimer’s: Most Silver Alerts involve men. Sun-Sentinel. http://www.sun-sentinel.com/health/fl-silver-alert-alzheimers-20120531,0,7506841.story (May 31, 2012).
9. Alzheimer’s Association Research Center: Prevention. http://www.alz.org/research/science/alzheimers_prevention_and_risk.asp (retrieved May 26, 2012).
CONNIE PIGNATARO is a lieutenant for Oakland Park Fire Rescue in Florida. In 2011, she was the first female officer in Oakland Park. She has a bachelor of applied science degree in public safety administration. She was introduced to fire rescue as a volunteer for her local Community Emergency Response Team (CERT) in 1998.