(Editor’s note: The following statistics and information have been provided by the Alzheimer’s Association Greater New Jersey Chapter.)
As the most common form of dementia, accounting for about 70 percent of all cases, Alzheimer’s disease affects 5.3 million people. This loss or decline of memory and other cognitive abilities is newly diagnosed every 70 seconds, and has become the sixth-leading cause of death across all ages and the fifth-leading cause of death for those over age 65.
With Alzheimer’s disease, information transfers at synapses, or the connections where healthy nerve cells in the brain, begin to fail. Starting with 100 billion of these nerve cells, or neurons, Alzheimer’s patients eventually lose these synapses, and their brains show dead and dying neurons.
Normal memory loss includes forgetting part of an experience, remembering events later on, being able to follow written or spoken direction, being able to use notes and being able to care for oneself.
The difference with Alzheimer’s is that a person forgets whole experiences, rarely recovers the memory later on, is gradually unable to follow directions or use notes, and is eventually unable to care for themselves.
As damage spreads, individuals experience confusion, misplace items, have disorganized thinking and impaired judgment, have trouble expressing themselves, experience disorientation in time, space and location, have difficulty remembering names and recent events, suffer from apathy and depression, have a loss of initiative, and have trouble speaking, swallowing and walking.
Memory loss is diagnosed by a physician, who can suggest a neuropsychological examination to check memory, language function, problem solving and visuospatial skills. An MRI scan of the brain tests for causes of cognitive impairment such as a thyroid or vitamin B12 abnormality.
Once diagnosed, there are several stages of memory loss:
Stage one is no impairment, where function is normal.
Stage 2 is a very mild decline that could be memory lapses due to normal age-related changes.
Stage 3 of mild cognitive decline could be early-onset Alzheimer’s where memory or concentration problems are detected by a medical doctor, such as trouble remembering names or words, forgetting material that was just read, misplacing a valuable object or having trouble planning or organizing.
Stage 4’s moderate cognitive decline includes forgetfulness of recent events, impaired arithmetic ability, difficulty performing complex tasks, forgetting one’s own personal history and becoming moody or withdrawn.
In Stage 5, there is a moderately severe cognitive decline where patients cannot recall their own address or phone number, become confused about where they are or what day it is, have trouble with less challenging arithmetic and need help choosing proper clothing, but can still remember significant details and do not require assistance with daily functions.
Stage 6 represents a severe cognitive decline in mid-stage Alzheimer’s. A person may lose awareness of his or her surroundings or personal history, have trouble remembering names, need help dressing properly and need help with the restroom.
Stage 7 is severe Alzheimer’s, where patients lose the ability to respond, carry on a conversation and control movement. They need help with much of their daily personal care and could lose the ability to smile and sit up without support. Muscles grow rigid, and swallowing becomes impaired.
Those patients with highly advanced stages of the disease lose their ability to communicate, fail to recognize loved ones and become bed-bound and reliant on 24/7 care.
They tend to wander or become lost, which is why the Alzheimer’s Association has set up a registry program database for emergency responders, and the Comfort Zone computerization tracking system to monitor patients in their homes and along perimeters.
Yet many patients must move into a nursing home or professional care facility to further protect their safety.
The greatest risk factor is advancing age, as most sufferers of the disease are over age 65. Inheriting one or two forms of the three common forms of a specific gene that provides the blueprint for a protein that carries cholesterol in the bloodstream increases the risk of developing Alzheimer’s but does not guarantee it.
“Younger-onset” or “early onset” Alzheimer’s does occur in less than 5 percent of cases, and is caused by rare genetic variations.
African Americans are affected more, as are women because women tend to live longer than men. White females have the highest death rates, while there are lower death rates in non-Hispanic blacks and those of Hispanic origin.
In New Jersey, the estimated number of people with Alzheimer’s in 2000 was between 101,000 and 200,000, with New York, Pennsylvania, Florida, Illinois, Texas and California reaching up to 499,000 cases. By 2025, the estimated number in New Jersey remains about the same, with less than a 24-percent increase rate, while numbers in Florida and California could exceed 500,000 patients. The Midwest typically has fewer than 50,000 patients. Across the United States, the upper Midwest could see increases of anywhere from 81 percent to 127 percent.
Patricia Lombreglia, the president and CEO of the Alzheimer’s Association Greater New Jersey Chapter, said that since the greatest risk factor for Alzheimer’s is age, the statistics reflect a high number of diagnoses in Florida because of the elderly population there and a low number of diagnoses in the Midwest because of a lower population density.
By next year, the overall number of new cases is expected to increase from 411,000 in 2000 to 454,000, and the estimates are 615,000 by 2010 and 959,000 by 2050.
By 2030, 7.7 million people over age 65 will have it, a more than 50-percent increase than those 65 and older currently suffering. By 2050, there could be up to 16 million Alzheimer’s patients over age 65 unless medical breakthroughs prevent or treat the disease; if not, more than 60 percent of Alzheimer’s patients will be over 85 years old.
Across the board the mortality rate tends to be high because severe dementia frequently causes complications such as immobility, swallowing disorders and malnutrition, which can increase the risk of developing pneumonia, which is the most commonly identified cause of death among elderly Alzheimer’s patients.
In relation, in New Jersey, as of 2005 statistics, there were 1,815 deaths, or about 17.6 deaths per 100,000 patients.
On a more positive note, there have been five new drugs approved by the U.S. Food and Drug Administration to slow the worsening of symptoms for up to a year for about half the patients prescribed them.
Yet studies have shown that using available treatment options, integrating coexisting conditions into the treatment plan and using counseling, activity and support group services can improve quality of life while dealing with the disease.
“There is a prolonged functionality when [medications are] given at the earliest point in the diagnosis,” Lombreglia said.
Also, since the health of the brain is closely linked to the overall health of the heart and blood vessels, some data indicate that managing high cholesterol, type 2 diabetes, high blood pressure and weight gain may help avoid or delay cognitive decline. Other evidence cites regular physical exercise and a low-fat diet rich in fruits and vegetables, as well as mental stimulation, may support brain health.
For those affected by the caregiving aspect of Alzheimer’s, Lombreglia said a wealth of information and support is available, such as resource connections, a 24-hour helpline, care consultations, training for support group facilitators, a respite care assistance program and health and wellness promotion.
“It is important [caregivers] take care of themselves, getting a break and understanding how stress works and the need to recharge their batteries,” Lombreglia said.
She said that coping with Alzheimer’s is “very much like any other type of grieving process,” but Alzheimer’s is worse because of the slow, gradual progression of the disease.
The Alzheimer’s Association Greater New Jersey Chapter offers caregiver support groups each month in various towns.
“People don’t realize how ravaging and horrific this disease is as it progresses. It is a total loss of self,” she said.
There is currently no cure for Alzheimer’s, and there is no treatment available to slow or stop the deterioration of brain cells. Yet research is constantly being conducted on ways to prevent, treat and cure the disease. One important component of the research is clinical drug trials for medicines that attempt to halt the progression of the disease.
“There is a lot of really promising medical research going on right now,” Lombreglia said.
There is also a study being conducted to determine the hereditary nature of Alzheimer’s. The National Cell Repository for Alzheimer’s disease study through the Department of Medical and Molecular Genetics at Indiana University School of Medicine studies blood samples of people who have two relatives diagnosed with Alzheimer’s to obtain DNA and cell lines for research purposes. There are also memory tests given, and questions asked about family history. For information, call 1-800- 526-2839 or email AlzStudy@iupui.edu.
However, a major obstacle Alzheimer’s patients face is the lack of funding for research. Therefore, the Greater New Jersey Chapter holds several fundraisers throughout the year. In May there will be the “Legendary Links Golf Raffle,” where courses are donated for threesomes and foursomes to play. On June 19 there will be a Polo charity classic at the Hillsborough Country Club. And every year from September to November, nationwide, the “Memory Walk” is held to raise money and awareness.
The chapter will also hold a professional education and research conference April 15 and 16 in Somerset to discuss cutting-edge research, treatments and care options geared toward physicians, nurses, social workers, hospitals, nursing homes and assisted living facilities.
“We really do feel there is more momentum, more understanding of this disease than there ever has been,” Lombreglia said.
For more information, call the chapter’s helpline at 1-800-883-1180 or visit www.alznj.org.
For more information about Alzheimer’s in general, visit www.alz.org or call 1-800- 272-3900.
Contact Jennifer Amato at
jamato@gmnews.com.