Duh Or Stating the Obvious: Dementia Care Cost Is Projected to Double by 2040

83bddf41169ac99a4a21cfcaf64b6a41Call me bitter, heck, even disgustingly angry; but when I saw this story on my Facebook news feed, then later listened to a report about the study on NPR’s Morning Edition, I rolled my eyes and thought, “Well, DUH!”

Caregivers are MORE than aware of the ridiculous costs associated with this dementia care — financially, emotionally and spiritually. And while a report like this helps to educate those whose pocketbooks are not yet being impacted by dementia, our elected officials (at every level) must vote to allocate funds to support research initiatives.

Unfortunately, thanks to our not-so-brilliant Representatives in Washington, who bicker like children and most certainly don’t deserve their lucrative pay, health insurance and pension, funding for research has been cut as a result of sequestration.

George Vradenburg, Chairman of USAgainstAlzheimer’s, said it best in a statement his organization issue last month: “From polio to cancer and from heart disease to HIV/AIDS, we have seen that a commitment to targeted research into high-cost diseases is a proven deficit reduction strategy.”

We need a cure. We need a way to delay or stop the onset of dementia. If we don’t come up with an effective treatment plan, dementia costs will bankrupt families.

In the meantime, if you did not know that dementia is a very costly disease, you should read the article below……………………. and maybe start saving your pennies now.

Originally appeared in The New York Times:

By 

The most rigorous study to date of how much it costs to care for Americans with dementia found that the financial burden is at least as high as that of heart disease orcancer, and is probably higher. And both the costs and the number of people with dementia will more than double within 30 years, skyrocketing at a rate that rarely occurs with a chronic disease.

The research, led by an economist at the RAND Corporation, financed by the federal government, and published Wednesday in The New England Journal of Medicine, provides the most reliable basis yet for measuring the scale of the problem. Until now, the most-cited estimates of the condition’s cost and prevalence came from an advocacy group, the Alzheimer’s Association.

Although some figures from the new research are lower than the association’s projections, they are nonetheless staggering and carry new gravity because they come from an academic research effort. Behind the numbers is a sense that the country, facing the aging of the baby boom generation, is unprepared for the coming surge in the cost and cases of dementia.

“It’s going to swamp the system,” said Dr. Ronald C. Petersen, who is chairman of the advisory panel to the federal government’s recently created National Alzheimer’sPlan and was not involved in the RAND study.

If anything, Dr. Petersen said of the study’s numbers, “they’re being somewhat conservative.” Dr. Petersen, the director of the Alzheimer’s Disease Research Center at the Mayo Clinic, is part of another team collecting data on dementia costs.

The RAND results show that nearly 15 percent of people aged 71 or older, about 3.8 million people, have dementia. By 2040, the authors said, that number will balloon to 9.1 million people.

“I don’t know of any other disease predicting such a huge increase,” said Dr. Richard J. Hodes, director of the National Institute on Aging, which financed the study. “And as we have the baby boomer group maturing, there are going to be more older people with fewer children to be informal caregivers for them, which is going to intensify the problem even more.”

The study found that direct health care expenses for dementia, including nursing home care, were $109 billion in 2010. For heart disease, those costs totaled $102 billion; for cancer, $77 billion.

The study also quantified the value of the sizable amount of informal care for dementia, usually provided by family members at home. That number ranged from $50 billion to $106 billion, depending on whether economists valued it by the income a family member was giving up or by what a family would have paid for a professional caregiver.

Michael D. Hurd, the lead author and a principal senior researcher at RAND, said the team could find no research quantifying such informal care for heart disease and cancer. But he and other experts agree that given the intensive nature and constant monitoring required to care for people with dementia, informal costs are probably much higher than those for most other diseases.

Dr. Petersen said, “Clearly, dementia is going to outstrip those dramatically.”

Without a way to prevent, cure or effectively treat these conditions yet, the bulk of the costs — 75 to 84 percent, the study found — involves helping patients in nursing homes or at home manage the most basic activities of life as they become increasingly impaired cognitively and then physically.

“The long-term care costs associated with people with dementia are particularly high because of the nature of the disease,” said Donald Moulds, acting assistant secretary for planning and evaluation at the federal Department of Health and Human Services. “People eventually become incapable of caring for themselves, and then in the vast majority of cases, their loved ones become incapable of caring for them.”

Each case of dementia costs $41,000 to $56,000 a year, the study said. Researchers project that the total costs of dementia care will more than double by 2040, to a range of $379 billion to $511 billion, from $159 billion to $215 billion in 2010. Because the population will also increase, Dr. Hurd said, the burden of cost per capita will not grow quite as fast, but will still be nearly 80 percent more in 2040.

The study used information collected over almost a decade on nearly 11,000 people from a large database called the Health and Retirement Study, considered a gold standard among researchers on aging issues. All of the people followed were given detailed cognitive tests, while a subset of them were more intensely evaluated for dementia and their results used as benchmarks to rate cognitive decline for the others, Dr. Hurd said.

Dr. Hurd noted that in addition to the estimates of people with actual dementia, earlier analyses of the same data estimated that 22 percent of people aged 71 and older — about 5.4 million people — have mild cognitive impairment that does not reach the threshold for dementia. In the study, about 12 percent of those people developed dementia each year, meaning that they experienced problems with memory, concentration and daily functioning that were severe enough to meet the medical definition.

The number of dementia cases calculated in the RAND study is smaller than that from the Alzheimer’s Association, which used a different database and tended to count people in earlier stages of memory loss. The association estimates that five million people aged 65 and older have Alzheimer’s, the most common dementia.

The RAND cost estimates for current dementia care are similar to the Alzheimer’s Association’s, but the association’s future cost projections are significantly higher: $1.2 trillion in 2050.

Robert Egge, the association’s vice president for public policy, said his group’s cost projections are based on the assumption that “more and more people will be in severe stages of dementia” in the future because they will be older. He said his group welcomed the RAND study, especially its comparison of dementia to other serious illnesses. It shows that groups using different methodologies reached the same conclusion about the high costs of dementia care, he said.

Dr. Petersen, whose team at the Mayo Clinic will be analyzing costs using a third distinct data set, said he suspected that “the reality is somewhere in the middle” of the RAND numbers and the Alzheimer’s Association’s projections.

When it comes to dementia, Dr. Hurd said, his team’s study could not capture the full toll of the disease. “One thing we haven’t talked about, and it’s not in the paper, is the tremendous emotional cost,” he said. “Economists are coldhearted, but they’re not that coldhearted.”

How You Can Help Stop Alzheimer’s

Alzheimer’s Registry Aims to Wipe Out Disease

Originally from AARP Blog and posted by 

What if you could play a part in preventing Alzheimer’s disease? Maybe you can. The Phoenix-based Banner Alzheimer’s Institute (BAI) has established an online registry for those at risk of developing a disease affecting more than 5.4 million Americans.

Many signing on are adult sons and daughters involved in the caregiving of a parent with Alzheimer’s. The ultra user-friendly Alzheimer’s Prevention Registry is a national initiative that connects would-be sufferers with researchers. Participants learn the latest developments in the field and have the opportunity to participate in prevention trials. There’s also an online community.

The goal is to get 100,000 people in the registry by next July. Enrollees include Nancy Hetrick, 45, and her three sisters. Hetrick’s father developed early on-set Alzheimer’s in his 50’s. His father (Hetrick’s grandfather) was one of 14 children; all developed the disease.

Hetrick’s mother and her mother’s two siblings also have Alzheimer’s. The younger women plan to participate in any prevention studies for which they’re eligible.

The registry is part of a worldwide effort to tackle a disease that may impact 7.7 million nationwide by 2030.

Research released this month suggests there may be changes in the brain more than two decades before the first signs of Alzheimer’s surface. A study underway between the National Institutes of Health, BAI, the University of Antioquia in Colombia and Genentech is focused on cognitively healthy participants expected to get Alzheimer’s because of family history.

The group is studying 300 Colombians from an extended family who share a rare genetic mutation that usually brings on Alzheimer’s around age 45 and also will involve participants from the United States.

Two Alzheimer’s factoids:

  1. Recent research conducted by Edge Research of 1,024 adults ages 18-75 shows nearly half of American adults have a personal connection to Alzheimer’s
  2. 7 out of 10 worry they or someone they love will have memory loss or Alzheimer’s

Would you consider joining a registry for Alzheimer’s or another disease with a genetic component? What is your biggest worry about getting Alzheimer’s?

Follow Sally Abrahms at www.sallyabrahms.com and on Twitter. Take a look at her November AARP Bulletin story on the emotional side of caregiving.

The Flip Side of Detecting Alzheimer’s Disease

Interesting read about the latest news to emerge regarding the possible detection of Alzheimer’s…….. At first I was stoked, now I’m concerned about misdiagnosis and the pain one has to endure just to learn if they have one of the most horrific diseases possible—and with no cure at their disposal or medications that actually do anything to slow the progression (sorry, my opinion, but meds like Aricept and Namenda caused my mom to be very, very sick and obviously did nothing to slow the inevitable). Bottom line—if you’re dealing with someone who is already exhibiting “symptoms” of the disease, getting them to submit to a painful spinal tap is not going to be easy…… I remember taking my mom for an MRI, a non-invasive procedure, and she couldn’t stop crying…………. frankly, I have no desire to put the woman through anymore pain just to learn that she has an incurable disease……………………………….. yeah, thanks doctors, but DUH!

Of course, you decide….. article below:

Alzheimer’s Isn’t Up to the Tests

By SANJAY W. PIMPLIKAR for The New York Times

A PANEL of medical experts from the National Institute on Aging and the Alzheimer’s Association last week proposed changes in the way doctors diagnose Alzheimer’s disease — including the use of so-called biomarkers, tests like PET brain scans and analyses of spinal fluids to promote early detection of the disease. Although these recommendations are well intentioned, evidence suggests that it would be a mistake to adopt them at this time. To understand why, it’s important to recognize what these tests mean, in what context the information will be used and what experience has shown us.

First, about the diagnostic tests: A PET scan detects clumps of a deformed protein called amyloid beta, commonly known as plaques. The presence of these plaques has been a gold standard of Alzheimer’s pathology since 1906, when Dr. Alois Alzheimer first identified them in a patient.

However, we now know that roughly one-third of all elderly adults have such plaques in their brains yet function normally. And eleven clinical trials, recently made public by a group of drug companies, that were aimed at reducing these plaques in Alzheimer’s patients all failed to show cognitive improvement, even when the brains were cleared of plaques.

Thus, the presence of plaques cannot predict with any accuracy or specificity that an individual is going to acquire the disease — and researchers are increasingly looking beyond the amyloid hypothesis for an adequate explanation for Alzheimer’s.

Another test being recommended by the panel is spinal fluid analysis — which measures the relative levels of two proteins, tau and amyloid beta. This method does seem quite promising, but its predictive potential remains uncertain.

There are also practical issues to be considered, not least of all the high cost of these procedures. What’s more, the spinal tap procedure is not easy to perform and is painful to undergo, and it is a long way from becoming a routine diagnostic tool. Dr. Janis Petzel, a geriatric psychiatrist in Maine, has noted how unfeasible this test is in “nonacademic, rural or non-Western settings”: “I pray that cerebrospinal fluid findings will never be part of diagnostic criteria for Alzheimer’s disease,” she wrote.

The diagnostic tests themselves can carry a risk of side effects. General imaging scans can expose patients to radiation, for instance; an invasive spinal tap could result in infection or damage to tissue. But there is also the psychological risk of false positives and misdiagnoses that greatly distress patients, at least until further tests show they do not have the disease.

This danger of overdiagnosis is very real, as the history of treatment for prostate cancer shows. A study last year about the prostate-specific antigen test found that in the two decades after the test was introduced, prostate cancer was detected in more than 1 million additional men, many of whom were likely overtreated.

Last, the most dreadful thing about Alzheimer’s disease, next to the slow deterioration of cognition, is that we do not yet have a cure and none seems to be on the horizon. So, even if the new recommendations rendered the diagnosis earlier and unassailable, there is no therapeutic avenue to use this information to effectively treat the patient. Many individuals would simply prefer to be spared the emotional trauma of a diagnosis if no treatment exists.

Taken together, these reasons suggest that the panel’s recommendations are likely to increase the emotional burden on individuals and the financial burden on society without providing proportional benefits. The doctor’s most basic tenet is that of primum non nocere — first, do no harm. Until we have a more definite idea about what causes Alzheimer’s, early-detection tests may do patients more harm than good.

Sanjay W. Pimplikar is an associate professor in the department of neurosciences at the Cleveland Clinic’s Lerner Research Institute.

>>Flickr pic by Yohan

On the Road to Developing Alzheimer’s…

Rules Seek to Expand Diagnosis of Alzheimer’s

By Gina Kolata of the New York Times

For the first time in 25 years, medical experts are proposing a major change in the criteria for Alzheimer’s disease, part of a new movement to diagnose and, eventually, treat the disease earlier.

The new diagnostic guidelines, presented Tuesday at an international Alzheimer’s meeting in Hawaii, would mean that new technology like brain scans would be used to detect the disease even before there are evident memory problems or other symptoms.

If the guidelines are adopted in the fall, as expected, some experts predict a two- to threefold increase in the number of people with Alzheimer’s disease. Many more people would be told they probably are on their way to getting it. The Alzheimer’s Association says 5.3 million Americans now have the disease.

The changes could also help drug companies that are, for the first time, developing new drugs to try to attack the disease earlier. So far, there are no drugs that alter the course of the disease.

Development of the guidelines, by panels of experts convened by the National Institute on Aging and the Alzheimer’s Association, began a year ago because, with a new understanding of the disease and new ways of detection, it was becoming clear that the old method of diagnosing Alzheimer’s was sorely outdated.

The current formal criteria for diagnosing Alzheimer’s require steadily progressing dementiamemory loss and an inability to carry out day-to-day activities, like dressing or bathing — along with a pathologist’s report of plaque and another abnormality, known as tangles, in the brain after death.

But researchers are now convinced that the disease is present a decade or more before dementia.

“Our thinking has changed dramatically,” said Dr. Paul Aisen, an Alzheimer’s researcher at the University of California, San Diego, and a member of one of the groups formulating the new guidelines. “We now view dementia as a late stage in the process.”

The new guidelines include criteria for three stages of the disease: preclinical disease, mild cognitive impairment due to Alzheimer’s disease and, lastly, Alzheimer’s dementia. The guidelines should make diagnosing the final stage of the disease in people who have dementia more definitive. But, the guidelines also say that the earlier a diagnosis is made the less certain it is. And so the new effort to diagnose the disease earlier could, at least initially, lead to more mistaken diagnoses.

Under the new guidelines, for the first time, diagnoses will aim to identify the disease as it is developing by using results from so-called biomarkers — tests like brain scans, M.R.I. scans and spinal taps that reveal telltale brain changes.

The biomarkers were developed and tested only recently and none have been formally approved for Alzheimer’s diagnosis. One of the newest, a PET scan, shows plaque in the brain — a unique sign of Alzheimer’s brain pathology. The others provide strong indications that Alzheimer’s is present, even when patients do not yet have dementia or even much memory loss.

Dr. Aisen says he foresees a day when people in their 50s routinely have biomarker tests for Alzheimer’s and, if the tests indicate the disease is brewing, take drugs to halt it. That is a ways off but, he said, but “it’s where we are heading.”

“This is a major advance,” said Dr. John Morris, an Alzheimer’s researcher at Washington University in St. Louis who helped formulate the guidelines. “We used to say we did not know for certain it was Alzheimer’s until the brain is examined on autopsy.”

Dr. Ronald Petersen, an Alzheimer’s researcher at the Mayo Clinic in Minnesota and chairman of the Alzheimer’s Association’s medical and scientific advisory council, said adding biomarkers to a diagnosis would be a big improvement.

Today, he says, when a patient comes with memory problems, doctors might say that the person has a chance of developing Alzheimer’s in the next decade, a chance of not getting much worse for several years, and a chance of actually getting better.

Tests like brain scans, Dr. Petersen said, “will allow us to be much more definitive.” If the tests show changes characteristic of Alzheimer’s disease, a doctor can say, “I think you are on the Alzheimer’s road.”

That can be a difficult conversation, but it can allow patients and their families to plan. “At least it’s a conversation the physician can have with the patient,” Dr. Petersen said.

Alzheimer’s experts welcomed the new criteria.

“Over all, I think this is a giant step in the right direction,” said Dr. P. Murali Doraiswamy, a psychiatry professor and Alzheimer’s disease researcher at Duke University who was not involved with making the guidelines. “It moves us closer to the cause of the disease rather than just looking at symptoms.”

But, he added, it also is a huge change.

“This has implications for everybody alive, anybody who is getting older,” Dr. Doraiswamy said. Among other things, he said, it will encourage a lot more testing. And, Dr. Doraiswamy said, “diagnosis rates, like testing rates, only go in one direction — up.”

Doctors will have to learn new terms — preclinical Alzheimer’s; prodromal, or early stage, Alzheimer’s. Patients going to see a doctor with memory problems might be offered biomarker tests, which can be expensive.

The ripple extends beyond doctors and patients, Dr. Doraiswamy said. The new diagnostic criteria also have consequences for lawyers, insurance companies and workers’ compensation programs.

And, he said, people have to be prepared for unintended consequences, which always occur when the diagnosis of a disease is changed. For now, he said: “We ought to be cautious that we don’t stimulate all this testing before we can give people something to manage their disease. There is no point in giving them just a label.”

Detecting Plaques BEFORE Autopsy…

My demented mom brain

Exciting read in today’s New York Times…………………… Below are just some interesting snippets about misdiagnosis………..the human brain……complete mystery………………even to the best minds in medicine…………. Check out the entire NYT article by clicking on this incredibly long link.

Thank you Dr. Daniel Skovronsky!!

What I found especially striking was the percentage of people who are MISDIAGNOSED by doctors. Dementia is in no way an understandable science, but for me, this piece offers comfort because I don’t think my mom has Alzheimer’s disease—even though she was “diagnosed” with it in 2006. I think she suffers from Vascular Dementia………….. I guess, at the end of the day, I would like to know for sure what is causing her decline. Just knowing and knowing what’s to come would offer me some peace………….

Even at the best medical centers, doctors often are wrong. Twenty percent of people with dementia—a loss of memory and intellectual functions—who received a diagnosis of Alzheimer’s, did not have it. There was no plaque when their brains were biopsied. Half with milder memory loss, thought to be on their way to Alzheimer’s, do not get the disease. And with such a high rate of misdiagnosis, some who are mistakenly told that they have Alzheimer’s are not treated for conditions, like depression or low levels of thyroid hormone or drug side effects and interactions, that are causing their memory problems………………………………………….

A man diagnosed with Alzheimer’s and cancer had a scan showing no plaque. His autopsy did not show it, either. The diagnosis was wrong. Another man with Parkinson’s disease and dementia had been diagnosed as having dementia solely due to Parkinson’s. His scan showed amyloid. So did the autopsy. He had Alzheimer’s. A woman with mild memory loss had a scan showing no amyloid. Her autopsy also found none. Three others had clinical diagnoses of Alzheimer’s, confirmed by scans and autopsies.


Demented Days Off… or I Need a Time Out

You know, in addition to personal days, we should be given demented days off. Sometimes you need an extra day just to be alone, recharge and not think about it. I’ve been doing this for a while now, you know, being the adult child of a demented parent, so I think I just go through the motions and deal. After all………………………………….

No point in complaining anymore.

Fait accompli.

It is what it is.

But I am finding that perhaps the stress of it is coming out in other ways…….. Somedays, I find that I’m not as patient as I would like to be—outside of mom…….

And here is my incredibly sound logic: If you’re not demented, you really should have your shit together and avoid behaving like a totally incompetent human being.

Be you. Be fearless. Be bold. Be honest. Be true. Be you. Just be.

Or something.

FACT. I place non-demented on a higher pedestal when it comes to normal human behaviors, actions, interactions, etc….. and their fall from grace is brutal. Like dropping a vase from very tall building.

There’s no coming back from that.

Forget the glue. You’re in the garbage.

I think I need a time out.