The sixth leading cause of death
Throughout human history, there has been recognition of dementia – alterations in the brain leading to loss of memory, intellectual skills and social skills. In the period around 600 BC, the Athenian statesman, Solon, connected alterations in judgment to aging. Ancient Greeks and Romans considered the deterioration of cognitive skills to be a normal part of aging.
In 1901, the German physician, Alois Alzheimer, began to follow a 51-year-old patient living in an asylum in Frankfurt named Auguste D. Mrs. D exhibited symptoms including memory loss, paranoia and agitation. He followed her until her death in 1906. When she died, he performed an autopsy and recognized changes in the structure of her brain and shrinkage in the size that were beyond the normal changes of aging. Over the next five years, more patients with similar symptoms and autopsy results were recognized and reported, and the disease began to be referred to as Alzheimer’s disease. Initially, the diagnosis was limited to those between 45 and 65 years of age, though by the late 1970s, it was broadened to any age. In the later 1970s, Alzheimer’s disease was recognized as the most common form of dementia.
When Symptoms Start
Today we recognize Alzheimer’s disease as the sixth leading cause of death in the United States. The NIH refers to it as an irreversible, progressive brain disorder that slowly destroys memory and thinking skills, and eventually the ability to carry out the simplest tasks. Typically, symptoms may start in the mid-60s with mild impairment to cognitive function and progress over time to become so severe that the person is entirely reliant on others for all of the basic activities of daily living. It is estimated that over five million Americans may be affected by this disease. Depending upon the age at onset, progression to time of death is sometimes as short as three to four years (for those over 80) to 10 or more years for those who are younger.
Let’s review some basics. I noted earlier that Alzheimer’s is the most common cause of dementia, a group of disorders making it hard to remember and think clearly. The common symptoms this can cause are forgetfulness, confusion, difficulty “finding” words, trouble concentrating, reasoning or performing calculations. As it progresses, patients may show signs of anger, aggression, delusions or hallucinations and eventually an inability to independently eat, bathe, or control bowel and bladder functions. Although Alzheimer’s disease is the most common form of dementia, other forms may be related to vascular issues (such as a prior stroke), other brain “degenerative” diseases or head injuries.
Looking Into Causes
The causes of Alzheimer’s disease are not yet clear. Genetics plays some role, especially in many of the early onset cases, but there are also clearly environmental and lifestyle factors that influence the disease. Its effects on the brain are far clearer. As Dr. Alzheimer noted over a century ago, there are clumps of protein (“plaque”) in the brain that damage and destroy brain cells leading to the decrease in brain volume. There are also proteins in the brain responsible for support and nutrient transport that become twisted and tangled, resulting in damage to the transport system and cell death. However, despite millions of dollars of research, it remains unclear whether these amyloid protein plaques are the cause of Alzheimer’s disease or a byproduct of some other cause.
The most significant risk factor for Alzheimer’s disease is age. Dementia affects one in six people between the ages of 80-85, but almost half of all people over the age of 90. Studies also indicate that high blood pressure, tobacco use and diabetes may be risk factors for dementia. Down Syndrome and head trauma also increase the risk of Alzheimer’s disease. Clinical trials are seeking to identify any positive effects and decreased risks that may result from lifestyle factors, such as diet, exercise, social engagement and the pursuit of mentally stimulating activities.
Is It Age or Something Else?
As we age, many of us become concerned whether memory issues we note, or a slowing in our ability to learn or process information, may be a sign of pathology. The normal aging process may result in some frustrations with our inability to function as we did at younger ages, but is often not a sign of dementia. The distinction between the two and the pursuit of further evaluations is best left to a discussion with your PCP, hopefully with reassurance of a normal aging process.
Currently, there is no diagnostic test available to confirm Alzheimer’s disease; it is a judgment based upon symptoms and the ruling out of other causes for dementia. The only completely accurate way to make the diagnosis is by microscopic examination of the brain at autopsy. There are brain imaging tests that show promise for the future. There are also other tests being evaluated to look at proteins in blood and spinal fluid. However, there is no imaging study or lab result or other test which is diagnostic to date. Even if early diagnosis were possible, there is no currently available treatment to prevent or significantly alter the progressive course of this devastating disease.
Treatment Is Complex
The treatment of Alzheimer’s disease is a complex issue. The first broad area to influence is to help the patient maintain mental functions and slow deterioration such as memory loss. There are medications approved that may help slow the cognitive decline in some patients. They work by regulating the chemicals used to transmit messages between neurons (brain cells). Unfortunately, they do not work for all patients and even for those they do help, they may only help for a limited amount of time. Managing behavior issues such as insomnia, wandering, anxiety and aggression is the other area of primary focus. Some of the medications mentioned above that affect neurotransmitters may be helpful as well as some other more commonly used anti-anxiety and sleep medications, though these are used with caution because of potential risks such as increased confusion and risks for falls.
Research does support, however, that these, as well as working to establish (or create) routines and habits, may make life more comfortable for both patients and their caregivers. Exercise can be an important component that may also impact cognitive decline and improve mood. In fact, exercise is the only medical intervention to date which has been shown to increase memory function, both in “normal” individuals as well as those with mild dementia.
Patients with Alzheimer’s disease and their caregivers face a series of emotions including fear, anger, confusion and grief. The stress associated with the decline of a loved one may seem insurmountable at times. We are fortunate here on Cape Cod that the Alzheimer’s Association has a donor funded Dementia Care Coordination (“DCC”) Program that we have partnered with for the next three years. This program has an outreach by the DCC to the caregiver to schedule a consultation. This consultation is to review safety, communications, behavior, community resources, legal and financial concerns as well as other topics. After the consultation, an individualized care plan is sent to the caregiver and the health system contact. This also provides a 24/7 helpline for caregivers to call. This can be accessed through our inpatient or outpatient case management teams. Our Cape Cod Healthcare neurologists will be working closely with this DCC Program among other community resources to provide comprehensive care for our dementia population.
Learn more about Alzheimers Disease.
Finally, I would be remiss if I didn’t remind you that a family discussion around end of life wishes at the earliest question of diagnosis is paramount in this population. This is a progressive disease that will end in death. All too often we have families who are unclear whether a patient in the advanced states of this disease would want dialysis, a feeding tube or other intervention. The time for the discussion and clarity is when the patient is still capable of discussion and clarity. Then the family, at a very stressful time, can, at best, feel comfortable that they are acting as the patient would want.
Please visit the Quality of Life Facebook page for information on this important aspect of your healthcare.