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The financial and emotional toll of America’s Alzheimer’s problem

Nicole Sinclair
Markets Correspondent

One-third of individuals over age 85 have Alzheimer’s disease and 1 in 9 over age 65 have the memory-crippling disease, according to the Alzheimer’s Association. This is a startling demographic story as the American population ages.

“As the first baby boomers are turning 70 this year, we have a cohort of aging Americans that are aging into the time of highest risk,” Ruth Drew, Director of Family and Information Services at the Alzheimer’s Association, told Yahoo Finance. “So without effective treatments, the number is going to skyrocket.”

More than 5 million Americans are living with Alzheimer’s disease, according to the Alzheimer’s Association. By 2050 that number is projected to triple without any significant medical discoveries.

Rosita Perez, whose mother recently died of Azheimer’s, joined Yahoo Finance to tell her story as a caregiver. Rosita took care of her mother over 14 years until her death this past January at age 74. Rosita managed this while caring for her three children and working full-time.

And while the majority of those with the disease are over 65, roughly 200,000 Americans have been diagnosed under 65 with what’s known as “early onset Alzheimer’s.” Just this week, famed coach Pat Summitt died at age 64, five years after being diagnosed with Alzheimer’s disease.

Jeff Borghoff, 52, joined Yahoo Finance to share his journey after having recently receiving an Alzheimer’s diagnosis in March. Jeff was a team leader for a software company when he starting struggling with job responsibilities. He was forgetting things and having trouble keeping up with the younger people he managed. Eventually, he asked for a lesser stress job, but even that became overwhelming. On the advice of his physician, he went on long-term disability. He went from a high-paying job to social security. He has three kids in college and has had to make steep sacrifices. Currently, his wife is his primary care-giver and his parents also moved in (his dad also has the disease).

The crippling cost of the disease

Alzheimer’s disease is the most expensive disease in the US, costing taxpayers $18.3 million each hour. The total national cost of caring for those with Alzheimer’s and other dementias is estimated at $236 billion a year, with $160 billion from Medicare and Medicaid alone. The Alzheimer’s Association estimates that as the number of Americans with the disease grows, the total annual payments for health care and long-term care will increase to $1 trillion by 2050.

Researchers have also found that the incremental health care and nursing home costs for those with dementia is $32,781. In 2015, more than 15 million caregivers provided an estimated 18 billion hours of unpaid care valued at over $221 billion. Nearly half of caregivers go back to work, work more hours, take a second job, or postpone retirement.

“The enormity of the Alzheimer’s crisis is felt not only by the more than five million people in the United States living with the disease today, but also by their more than 15 million caregivers, friends and family,” Drew said in a statement.

Family caregivers spend more than $5,000 a year to care for someone with Alzheimer’s. And it is estimated that 250,000 children and young adults between ages 8 and 18 provide help to care for someone with Alzheimer’s disease or another form of dementia. In addition, 23% of Alzheimer’s caregivers are part of the “sandwich generation,” meaning they care not only for an aging parent, but also for underage children.

Understanding the disease

Alzheimer’s, which is the most common type of dementia, can be difficult to diagnose.

“A diagnosis of Alzheimer’s is a complicated diagnosis,” Drew told Yahoo Finance. “It’s not just a simple blood test. It includes a number of different components.” These include screening tests, blood tests, brain scans, and other tests.

Drew added that Alzheimer’s changes memory in a way that disrupts everyday life. And it also impacts executive functions, moods and personalities.

“The pathology of Alzheimer’s has been studied for a long time and so we understand that there are plaques and tangles that attack brain cells and that that is what causes Alzheimer’s disease. But we don’t understand fully what causes those plaques and tangles to develop. There’s still a lot of research is needed.”

Alzheimer’s is more prevalent in certain groups, Drew said. Almost two-thirds of those with Alzheimer’s are women. Additionally, African Americans have double the risk of other Americans and Latino Americans have 1.5 times the risk.

Additionally, there is sometimes an inherited component, she added.

“The greatest risk for Alzheimer’s disease is advancing age,” Drew said. “But there are a few families that carry an inherited form of Alzheimer’s and so for those few families, there is a strong genetic tie.”

The large numbers Alzheimer’s affects

"Everyone who has a brain is at risk of developing Alzheimer’s,” said Drew in a statement. “Misunderstanding crucial facts about the disease can have devastating consequences for people living with Alzheimer’s and their caregivers, families and friends.”

Drew added that greater understanding is urgently needed, given the large impact of the disease.

“Alzheimer’s disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 that cannot be prevented, cured or even slowed,” she added.   

From 2000-2013, the number of Alzheimer’s deaths increased 71%, while deaths from other major diseases decreased. Alzheimer’s disease is fatal; there are no survivors.

Drew emphasized that Alzheimer’s disease is not normal with aging.

“Alzheimer’s is a fatal and progressive disease that attacks the brain, killing nerve cells and tissue, affecting an individual’s ability to remember, think and plan,” she said. “Brain changes associated with Alzheimer’s may begin 20 or more years before symptoms appear. Although age is the greatest known risk factor, Alzheimer’s is not a normal part of aging.”

The lack of understanding surrounding the disease is significant.

June marks Alzheimer’s & Brain Awareness Month, with a special event that was held on June 20, a sunrise-to-sunset event to honor those facing Alzheimer’s disease. The Alzheimer’s Association has focused this month to debunk harmful misconceptions that keep people from seeking an Alzheimer’s diagnosis and reduce access to needed resources, clinical trials and support services.

“Early diagnosis allows better access to quality medical care and support services, and provides the opportunity for people with Alzheimer’s disease to participate in decisions about their care, including providing informed consent for current and future plans,“ Drew said. "Knowing the diagnosis early enables the person with Alzheimer’s to get the maximum benefit from available treatments, and may also increase chances of participating in clinical drug trials that help advance research.”

For more about drugs in development to treat Alzheimer’s, see here: These companies hope to deliver a blockbuster Alzheimer’s drug