Alzheimer’s disease continues to baffle neuroscientists around the world. This year, the disease was listed by the Alzheimer’s Association (AA) as the sixth leading cause of death in the United States; just 20 years ago it was 13th. Experts generally agree that there is a lack of progress in determining a cause, providing individual treatment protocols and, eventually, finding a cure.
Alzheimer’s Disease International reported last year that nearly 44 million people worldwide suffer from the disease. More alarming, it is estimated that only one in four people with the disease have been diagnosed. In the United States, one in nine Americans over age 65 have the disease, and it is predicted by the AA that when the first wave of baby boomers reach age 85 (roughly 2031) more than 3 million of these individuals will either show the symptoms or will have been fully diagnosed with the disease. More than 5.3 million Americans are living with Alzheimer’s and unless a cure is found, another 16 million Americans will have the disease by 2050.
Diagnosis is often death sentence
The typical life expectancy for an Alzheimer’s patient is 4 to 8 years after diagnosis. Last year, the population of patients 85 years and older included about 2 million people with the disease (or 40 percent of all people with Alzheimer’s age 65 years and older). The disease tends to be more pronounced as you get older: 85 years and older (38 percent), 75 to 84 years (44 percent), 64 to 74 years (15 percent) and persons younger than 65 years at four percent.
The disease cuts across all racial and ethnic lines, but not with the same percentage. For instance, three percent of Whites between 65 and 74 years are diagnosed with the disease, increasing to 11 percent between the ages of 75 and 84 years, then 30.2 percent for ages 85 years and older. African Americans diagnosed, based on the same age groups, are 9.1 percent (65-74 years), 20 percent (75-84 years), and finally 58.6 percent (85 years and older). Latinos have a lower rate than African Americans for an early diagnosis at 7.5 percent (65-74 years), but these cases rise significantly to 27.9 percent (75-84 years) and then skyrocket to 70 percent for Latinos 85 years and older. These numbers indicate an ensuing epidemic of Alzheimer’s cases. Seven years ago there were 4.7 million Americans 65 years and older who were diagnosed. According to the AA, expect that number to increase to 5.8 million in 36 months, then 8.4 million by 2030, 11.6 million by 2040 and up to 16 million by 2050.
Disease more pronounced in women
Women, based on the above age variants, either more frequently demonstrate the symptoms or are more likely than men to be diagnosed with Alzheimer’s. To place these numbers into better perspective, a woman in her 60s is now about twice as likely to develop Alzheimer’s as breast cancer within her lifetime. Researchers are racing to figure out why women are at an increased risk. Women generally live longer than men, but mounting evidence suggests that longevity may not account for the unequal disease burden women face. Some studies have suggested that distinct biological and genetic factors shape how the disease strikes and progresses in women. In 2015, Dr. Roberta Diaz Brinton, a neuroscientist with the University of Arizona Health Services, and her colleagues investigated whether the loss of estrogen in women in mid-life who carry a known risk gene for Alzheimer’s (APOEe4), leads to more significant brain cell damage, specifically in the brain’s white matter, compared to those who are not at this increased genetic risk. This so-called “mind gap” has led to a focus on white matter within the brain which acts as a “relay station” for communication between different areas of the brain. Brinton and her team suggested that these combined factors can increase a woman’s susceptibility to Alzheimer’s later in life.
Lifestyle factors may provide clue
The same study looked at stressful events in a woman’s life and found that women who had lived through difficult periods (e.g. divorce, widowhood, loss of a child, work problems) had an increased likelihood of developing dementia later in life. Brinton explained that these and other studies only suggest a link, and that it is important to advance such research in larger and more diverse populations.
For women, Alzheimer’s can evolve into a life-altering struggle without a personal diagnosis. Compared with men, 2.5 times more women will be charged with providing 24-hour care for an affected relative. The AA in 2016 took a look at who is caring for these individuals and it was women or, specifically, 19 percent of those wives, sisters and daughters surveyed, who said they had to drastically alter their daily schedule, borrow money or quit work to care for a relative with the disease.
Researchers are exploring potentially modifiable lifestyle factors, such as education, occupation, exercise, diet, stress and sleep—all of which may, some believe, hold greater sway over a woman’s risk of developing Alzheimer’s. They’re looking at formal education of which increasing evidence suggests may boost resilience to cognitive decline and dementia in both sexes. Findings from the 2015 Alzheimer’s Association International conference suggest that individuals who completed high school had a 28 percent lower risk of developing dementia compared to those with only an elementary school education.
Race an independent predictor
Additional research conducted in 2010 at UC San Francisco suggests that race may be an independent predictor of survival among people diagnosed with Alzheimer’s disease. Apparently, African Americans and Latinos who have been diagnosed tend to live longer than do Whites. Dr. Kala Mehta, an epidemiologist, and her team looked at 31,000 patients from more than 30 Alzheimer’s centers around the country and found that, compared to Whites, African Americans were 15 percent and Latinos were 40 percent less likely to die from the disease during the same study period. Four out of five (81 percent) of the study participants were White, 12 percent were Black, four percent Latino, 1.5 percent Asian, and 0.5 percent Native Indian. The patients were followed for an average of 2.4 years, and they had a median survival rate of 4.8 years since their first visit to an Alzheimer’s disease center.
Clinicians conducting the San Francisco study took autopsy results from 3,000 persons who had Alzheimer’s and found no significant difference in the disease progression at death by racial group. But while Asians and Native Indians lived about as long as Whites with the disease, Blacks and Latinos lived significantly longer. The ethnic differences were seen even after researchers accounted for other factors known to influence survival, including education level and age at symptom onset. The San Francisco study cautions, however, that it only used patients treated at Alzheimer’s disease centers, therefore the findings may not be an accurate indicator of what is happening with the Alzheimer’s population at large. Because White patients are more likely to be treated at an Alzheimer’s center than African Americans or Latinos, Mehta said they started out with the hypothesis that Whites lived longer with the disease, but came away realizing they were wrong.
Duke University study
“It is possible that these ethnic differences persist, but we can’t say that from this study,” Mehta said. “Our goal is to try to understand the racial differences with a view toward improving the health of all people with Alzheimer’s disease.”
Last year, the Journal of Neuroscience published a study conducted at Duke University which suggested that when Alzheimer’s develops, certain immune cells called microglia that normally protect the brain from disease instead start a pattern of activity that dampens the immune system. The scientists are considering the possibility that two of the main suspects in the disease—amyloid plaques and tangles of tau proteins in the brain—are not acting alone. Dr. Jon LaPook, chief medical examiner with CBS News, reported on the study and said the scientists are definitely looking at something new.
“In mice, anyway, there was found to be an increase of an enzyme called arginase that comes out of these microglia cells,” LaPook explained. “Arginase lowers the level of an important amino acid called arginine, which is important for the health of neurons in nerve cells. More research is needed, of course, but this study could provide a target for future research and potential drug treatments.”
Alzheimer’s disease is not the same in every person, but the symptoms tend to develop over the similar stages. Most often, the symptoms begin to appear when a person reaches his/her mid-60s. The three stages—“early” which is a pre-clinical stage with no symptoms, “middle” identified by mild cognitive impairment, and “final” marked by acute dementia—cannot be prevented nor anticipated by doctors. For many people, decline in non-memory aspects of cognition (e.g. word-finding, vision/spacial issues, impaired reasoning) can sometimes signal the very early stages of the disease or can be associated with any number of health issues such as Post Traumatic Stress Disorder or the onset of a stroke.
The telltale symptoms
Physicians report that as the disease progresses, people will experience greater memory loss and other cognitive difficulties. These problems can include but are not limited to: wandering and getting lost, trouble handling money and paying bills, repeating questions, taking longer to complete daily tasks, losing or misplacing items, and changes in personality and behavior. In the moderate stage, damage has occurred in areas of the brain that control language, reasoning, sensory processing and conscious thought. These symptoms usually include: increased memory loss, difficulty recognizing relatives and friends, difficulty carrying out multi-step tasks such as getting dressed, delusions and/or paranoia, and impulsive behavior. In the late stage, Alzheimer’s patients cannot communicate and must rely solely on others for their care. Very often there is weight loss, difficulty swallowing, skin infections, increased sleeping, and lack of control of bowel and bladder.
Perhaps of all the health disorders, Alzheimer’s demands constant caregiving especially in the final stages of the disease. Many relatives and friends of an Alzheimer’s patient must dip into their savings or retirement accounts, cut back on spending or even sell assets to pay for expenses tied to the disease. In fact, the AA reported in 2015 that many people face staggering financial ills—some even going hungry—because they don’t have enough money to care for the patient and to satisfy a typical household budget. In 2014, Alzheimer’s and dementia caregivers had $9.7 billion in additional health cares of their own. The American Association of Retired Persons essentially states that the caregiver has no choice in the matter, noting that 74 percent of caregivers—most often a senior—reported that they were “somewhat” concerned or “very concerned” about maintaining their own health since overseeing someone else’s wellbeing.
“Everything changes, and I do mean everything,” said Dan Gasby, a caregiver in his early 60s whose wife, B. Smith, a former model, actress and restaurateur, was diagnosed with early on-set Alzheimer’s in 2013. Gasby and Smith recently received the American Brain Foundation Public Leadership in Neurology Award. They released a book last year, “Before I Forget: Love, Hope and Acceptance in our Fight Against Alzheimer’s,” that shared their journey and how the disease is having a devastating impact on African American families.
“Alzheimer’s is a very ‘unforgiving’ disease in that you must do everything for the person that up until recently they naturally did for themselves,” Gasby said. “Each party must relinquish their independence. It is most sad, though, that both of you know that it will not get better—only worse—and your loved one will never be the same.” Gasby explained that some people have gone bankrupt providing care for an Alzheimer’s patient. And don’t expect much help from Medicare, he added. It will only pay for 100 days of care during the late stages of the disease. At that point, the patient must have 24-hour care either at home or at a skilled nursing facility.
“The cost adds up really fast,” Gasby continued. “Besides the emotional impact, the financial cost is tremendous in caring for someone with Alzheimer’s. It is an outright shame that the United States is not safeguarding healthcare. You hear a great deal about ‘infrastructure’—fixing our roads and highways—but healthcare is another aspect of American infrastructure that is not provided for. I’ve said before physicians, neuroscientists, politicians and healthcare advocates that it is evil for our government leaders not to provide money for the future care of this afflicted community.”