The number of people with Alzheimer's disease is growing.
So is the number of Alzheimer's patients who are dying.
There are several factors for both, not least of which is that people are just living longer, growing older.
In its report titled "2022 Alzheimer's Disease Facts and Figures," the Alzheimer's Association has gathered data relating to the disease. The organization released the comprehensive report Tuesday.
It covers Alzheimer's disease prevalence, mortality and morbidity, caregiving, the demential care workforce and the use and costs of health care, long-term care and hospice. Today's story will dive into some of the science surrounding the disease, its forms, its risk factors, prevalence and mortality.
Future stories will go deeper into diagnoses, care, caregiving and the costs of care.
Jefferson City and surrounding areas have aging populations, Capital Region Medical Center (CRMC) neurologist Harathi Bandaru said.
Bandaru said age, coupled with smoking and hypertension, may make people in the area more susceptible to forms of dementia.
Forgetfulness or someone getting lost are a pair of the first signs those closest to them see. Dementia patients have cognitive changes.
"Families are the first ones to identify this," Bandaru said.
Physicians are diagnosing more patients with Alzheimer's disease, according to the association's report. It estimates -- using a 2022 U.S. Census Bureau and Chicago Health and Aging Project study -- that 6.5 million Americans (about 120,000 Missourians) suffer from Alzheimer's dementia. Seventy-three percent of those folks are 75 and older.
Estimates indicate the number of Americans with the disease could increase to 8.5 million by 2030 and 11.2 million by 2040.
Patients go through a number of tests to determine whether they have dementia, then what might be causing that condition, said Chris Paynter, a family medicine provider at the SSM Health St. Mary's Hospital clinic in Tipton. Unfortunately, before patients or people close to them observe possible symptoms, and the patient seeks help, damage has been done, Paynter said.
Alzheimer's can be a pernicious disease, according to the National Institute on Aging. It oftentimes comes on gradually. Earliest detected symptoms may be memory loss, poor judgement leading to bad decisions, loss of spontaneity and sense of initiative, taking longer to complete daily tasks, repeating questions, difficulty handling money and paying bills, wandering and getting lost, losing or misplacing things, mood changes and increased anxiety.
More advanced symptoms may include the inability to learn new things, difficulty with language, difficulty working with numbers, shortened attention span and problems coping with new situations.
Alzheimer's is a brain disease that occurs when certain brain cells (neurons) receive damage (and cause changes in the brain). Changes include the accumulation of two abnormal proteins -- beta-amyloid and phosphorylated tau. In Alzheimer's, the beta-amyloid proteins clump together, forming plaques. The clumps may block cell-to-cell signaling at synapses. They may also activate immune system cells (microglia) that trigger inflammation and devour disabled cells. Tau (proteins) may accumulate and form threads and tangles inside neurons. Tangles block neurons' transport system, harming communication between neurons.
As Alzheimer's disease progresses, plaques and tangles tend to spread through the brain cortex in a predictable pattern, according to www.alz.org. The rate and progression varies greatly. Toxic beta-amyloid and tau proteins continue to trigger immune system cells.
Chronic inflammation may set in when the microglia can't clear debris from dead and dying cells. Atrophy (brain shrinkage) occurs because of cell loss.
"Normal brain function is further compromised in Alzheimer's disease by decreases in the brain's ability to metabolize glucoses, its main fuel," the report states.
On average, a person with Alzheimer's lives four to eight years after the diagnosis, but can live as long as 20 years. Progression varies greatly on age at diagnosis, and whether the person has other health conditions.
The vast majority of people with Alzheimer's are 65 or older. About one in nine people ages 65 and older have Alzheimer's dementia.
Only 5 percent of people ages 65-74 have the disease. However, 13.1 percent of those ages 75-84 have Alzheimer's. And 33.2 percent of people ages 85 or older have the disease.
Researchers said about 200,000 Americans younger than 65 have "younger-onset dementia."
Other researchers have progressed in measuring the changes to the brain. Doctors may now identify abnormal levels of beta-amyloid and tau in spinal fluid. They can also use a recently developed scanning technique to produce images showing where the proteins may have accumulated. Accumulations of the proteins are considered biomarkers for the disease (similar to the way we use levels of glucose in blood as biomarkers for diabetes, or cholesterol levels as biomarkers for cardiovascular disease).
During the mild stage of Alzheimer's dementia ("dementia" is oftentimes used as an overall term for a specific group of symptoms, including difficulties with memory, language, problem-solving and other thinking skills), "... most people are able to function independently in many areas but are likely to require assistance with some activities to maximize independence and remain safe," the report states. "Handling money and paying bills may be especially challenging."
In the moderate stage of Alzheimer's dementia -- often the longest stage -- people experience more problems with memory and language, are more likely to become confused and have more difficulty completing multi-step tasks, such as bathing or dressing. They may become incontinent at times, may begin having difficulty recognizing loved ones and may begin having behavioral changes, according to the report.
In severe Alzheimer's dementia, patients' ability to communicate verbally is significantly diminished. And they likely require around-the-clock supervision.
Damage to the brain generally has reached areas involving movement, which causes the patient to be bed-bound.
"Being bed-bound makes them vulnerable to physical complications including blood clots, skin infections and sepsis, which triggers body-wide inflammation that can result in organ failure," the report states. "Damage to areas of the brain that control swallowing makes it difficult to eat and drink."
Patients may swallow food into the windpipe instead of the esophagus. Food may enter lungs, causing lung infections. Resulting "aspiration pneumonia" is a contributing cause of death among many people with Alzheimer's.
Morbidity and mortality
Although many deaths are attributed to Alzheimer's disease -- it was considered the sixth leading cause of death in the United States in 2019 -- it may cause more deaths than official sources recognize, according to the report.
COVID-19 was the third- leading cause of death in 2020, pushing Alzheimer's to seventh.
The brain disease is also a leading cause of morbidity (poor health) in older adults.
"It is difficult to determine how many deaths Alzheimer's disease causes each year because of how deaths are recorded. Centers for Disease Control and Prevention (CDC) data show that 121,499 people died from the disease in 2019. However, the number of deaths caused by dementia of any type (which may include Alzheimer's) was 271,872 in 2019, the latest year CDC data were available. (Preliminary data from 2021 show about a 10 percent increase, compared to the average of the previous five years, in the number of people who died from Alzheimer's disease, according to the report.)
"Severe dementia frequently causes complications such as immobility, swallowing disorders and malnutrition that significantly increase the risk of serious acute conditions that can cause death," the report states. "One such condition is pneumonia (infection of the lungs), which is the most commonly identified immediate cause of death among older adults with Alzheimer's or other dementias.
A study, the report said, found that respiratory system diseases were the immediate causes of death in more than half of people with Alzheimer's dementia.
"Death certificates for individuals with Alzheimer's often list acute conditions, such as pneumonia as the primary care of death, rather than Alzheimer's," the report states. "As a result, people with Alzheimer's dementia who die due to these acute conditions may not be counted among the number of people who die from Alzheimer's disease, even though Alzheimer's disease may well have caused the acute condition listed on the death certificate."
The challenge that comes from using death certificates to determine the number of deaths from Alzheimer's and other dementias is sometimes referred to as a "blurred distinction between death with dementia and death from dementia," the report states.
A recent study considered data about deaths of people ages 75 and older in the United States in 2010 (ages 65-74 were not available). It compared the estimated risk of deaths in those who had Alzheimer's dementia with the estimated risk of death in those who did not have Alzheimer's dementia. The study estimated 500,000 deaths within the age group could be attributed to Alzheimer's dementia.
Another study, the Health and Retirement Study, estimate that about 14 percent of deaths from 2000-09 among Americans ages 70 and older could be attributed to dementia, but only 5 percent listed dementia as an underlying cause, according to the report.
Adding to the complexity, most death certificates listing Alzheimer's disease as an underlying cause of death are not verified by autopsy, the report states, but research shows 15-30 percent of people diagnosed with Alzheimer's dementia while they are alive do not have the physical brain changes of Alzheimer's disease. Instead, they have the brain changes of another cause of dementia.
"Irrespective of the cause of death, among people age 70, 61 percent of those with Alzheimer's dementia are expected to die before age 80, compared with 30 percent of people without Alzheimer's dementia," the report said.
Women represent about 4 million of the estimated 6.5 million who suffer with Alzheimer's, in part because they live longer than men.
Again, age is the greatest risk factor for the disease.
However, the report states, most U.S. studies into whether men or women are more at-risk of developing Alzheimer's or other dementias have found little difference between the sexes.
"Gender differences may exist in the distribution of -- or even the effect of -- known risk factors for dementia, such as education, occupation and health behaviors," according to the report. "For example, lower education attainment in women than in men born in the first half of the 20th century may contribute to elevated risk in women, as limited formal education is a risk factor for dementia."
"Other societal gender differences may also be at play, such as differences in occupational attainment between men and women, with a recent study showing that women who participated in the paid workforce earlier in life had better cognitive outcomes after age 60 (than those who did not)," the report states.
Paynter, the SSM Health family practitioner, said evidence appears to show the rate of memory loss could be different between people, depending on their educational status.
Or, maybe it's just that someone with more education is more aware of how much they have lost.
More research is needed, the report notes. However, it continues, evidence supports that greater education attainment over time in the United States -- in which women have gained more than men of late -- has led to decreased risk for dementia.
Bandaru, the CRMC neurologist, said exercise can help.
"You have to use your brain all the time," she said. "You have to learn. Make sure you use the brain. If you don't use your brain, you're going to lose the brain."
There are games available that are intended to help keep brains sharp, Paynter said. There may be some truth in them, he continued.
However, evidence shows some specific things affect whether a person is susceptible to Alzheimer's disease -- like whether they smoke.
"If you affect blood vessels to your brain, areas start to die," he said.
Someone also might take steps to prevent dementia, such as exercising and keeping their blood pressure under control, he said.
"There is no harm in doing those respective things to reduce your risk," Paynter said. "It's really a long game."
Losing a loved one to dementia is slow, painful