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.”

President Obama Says the “A” Word: Alzheimer’s

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During President Barack Obama’s State of the Union address last Tuesday, he did something pretty remarkable……………………….. he mentioned Alzheimer’s disease in his speech. That was the first time a president has mentioned Alzheimer’s in his #SOTU in 13 years.

13 YEARS!

That’s a lot of years to be quite on this issue.

“Today, our scientists are mapping the human brain to unlock the answers to Alzheimer’s; developing drugs to regenerate damaged organs; devising new material to make batteries ten times more powerful.  Now is not the time to gut these job-creating investments in science and innovation.  Now is the time to reach a level of research and development not seen since the height of the Space Race.”

This mention is a huge step forward in terms of raising awareness of the disease among Americans who have not yet been touched by it. Here’s the thing: We have to make Alzheimer’s disease a big deal. Washington must make this a national priority because Alzheimer’s disease and other dementias (like Frontotemporal dementia, vascular dementia, mixed dementia, Lewy body dementia, etc) will touch everyone in this country, either directly or indirectly…………………………………………………….. remember, calm before the Tsunami.

While we can’t get overly excited by the president’s mention of the disease, it seems pretty obvious that the man knows Alzheimer’s disease and other dementias are problem that will cost our country dearly.

So what can we do to make sure Washington knows to make this disease a priority? Well, for starters, you can send an e-mail.

From the folks at the White House:

President Obama’s State of the Union address is just the beginning; now we want to hear from you. Highlight a passage of the speech that was meaningful to you and tell the President how you’re connected to that issue. Then share that part of the speech with your friends.

Click to link to President Obama’s SOTU. 

Spread the word. Post the link to Facebook, to Twitter, to everywhere you can because we have to do something or our Congress will do nothing.

See: Filibuster. 

We’re Young, We’re Poor, & We Need a Cure. Our Lives Depend on It

Screen Shot 2013-02-11 at 8.42.56 PMAs I write this blog, I’m trolling Twitter. Just seeing what’s out there in the way of caregiver support, resources, news, etc, etc, etc. Turns out, there’s a lot shaking in our world. A quick scroll on my feed shows Tweets about everything from incontinence and nursing homes to tips on how to be an organized caregiver (“organized” and “caregiver:” two words that don’t really go together). Lots of information. Some of it useful; most of it scary.

(No, you don’t and won’t have enough money to grow old).

While you’ll absolutely find information about caregiving or being a caregiver, much of what’s out there is geared towards Baby Boomers… because let’s face it, Baby Boomers are a hot commodity right now.

Why? They’re rich and they’re going to get sick.

As for the under 40 set, well, we’re sort of preoccupied with paying off our student loans, buying our first home (or drowning in it, as the case may be), finding our dream job, finding Mr. or Ms. Right, making babies, having babies and/or getting divorced.

You know what else we’re doing? We’re NOT saving. Saving for the day we develop a long term illness like dementia.

That said, we’re about as undesirable as they come. And you should be pissed off about that. After all, we’re not safe from Alzheimer’s disease or other dementias… there are no cures, no means of prevention. NADA.

Still not convinced? Just Google, “Alzheimer’s and 2050.”

This is the quiet before the Tsunami.

Here are a few things you should know:

  • Alzheimer’s disease is just one of several types of dementias (my mom has frontotemporal dementia).
  • HIV/AIDS was once considered a death sentence; today it’s a “manageable disease.” That’s because a lot of money was thrown into the research bucket and antiviral drugs were developed.
  • Medicare will NOT pay for nursing home/assisted living care.
  • You can’t afford to grow old. According to Genworth’s 2012 Cost of Care Survey, which I found in an online article on Next Avenue,  “one year of long-term care ranges from $39,600 for an assisted living facility to $81,030 for a private room in a nursing home.” (source: Next Avenue; Genworth)
  • Alzheimer’s disease is the sixth-leading cause of death in the U.S. and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed. (source: 2012 Alzheimer’s Association, Facts & Figures report)
  • Have you ever changed an adult’s diaper? More than 15 million Americans provide unpaid care valued at $210 billion for persons with Alzheimer’s and other dementias.  (source: 2012 Alzheimer’s Association, Facts & Figures report)
  • In 2012, the direct costs of caring for those with Alzheimer’s or other dementias to American society will total an estimated $200 billion, including $140 billion in costs to Medicare and Medicaid. Unless something is done, the care costs of Alzheimer’s and other dementias will soar from $200 billion to a projected $1.1 trillion (in today’s dollars) by 2050.  (source: 2012 Alzheimer’s Association, Facts & Figures report)

What can you (reasonably) do?

Here’s the myth: Alzheimer’s disease and other dementias are diseases old people get. Here’s the truth: People in their 30s, 40s and 50s are developing dementia. Here’s the other truth: This disease will touch your life one day, if it hasn’t already.

Dementia is not an old person’s disease.

Good News? US Senators Seek to Cut Misuse of Antipsychotics

This is a controversial matter……. I don’t even know what to say about it……….. my mother is on antipsychotics that were given to her by a trained psychiatrist to “stabilize” her during her month-long stay at a geriatric psych unit. They do this……….. stabilizing…………… because many facilities (even the “memory care” units) won’t accept behavioral patients unless they are medicated……………… it’s a lose-lose situation, but it’s certainly not uncommon………………. And yes, we all know about “black box” warnings.

So what do you do? For those of us coping with a behavioral parent, our options are limited, and often the only course of action is Seroquel, Lithium, Depakote, Zyprexa, two or more of the above, and the list goes on………………………

Is it a disturbing practice? Yes.

Is there a choice? In our case, no. We had no choice.

Fortunately, Washington, with their first-rate, life-long health care, is on the case……………….

Inside voice…………… I wonder if the esteemed senators below would be willing to take in behavioral dementia patient who has been asked to leave yet another memory care unit or assisted living facility?

So, what do you think about antipsychotics?

U.S. Senators Herb Kohl, D-Wis., Chuck Grassley, R-Iowa, and Richard Blumenthal, D-Conn., today filed an amendment seeking to combat the costly, widespread and inappropriate use of antipsychotics in nursing homes.

“The overuse of antipsychotics is a common and well-recognized problem that puts frail elders at risk and costs taxpayers hundreds of millions of dollars each year,” Kohl said. “We need a new policy that helps to ensure that these drugs are being appropriately used to treat people with mental illnesses, not used to curb behavioral symptoms of Alzheimer’s or other dementias.”

“This amendment responds to alarming reports about the use of antipsychotic drugs with nursing home residents,” Grassley said. “It’s intended to empower these residents and their loved ones in the decisions about the drugs prescribed for them.”

“This measure is responsive to mounting evidence that antipsychotics are being misused and overused in the nursing homes we trust to care for our loved ones,” Blumenthal said. “The amendment will do what is necessary to curb this deeply concerning practice, putting the power to make key health care decisions back into the appropriate hands and eliminating unnecessary costs to taxpayers.”

The amendment to S. 3187, the Food and Drug Administration Safety and Innovation Act would require the Health and Human Services Secretary to issue standardized protocols for obtaining informed consent, or authorization from patients or their designated health care agents or legal representatives, acknowledging possible risks and side effects associated with the antipsychotic, as well as alternative treatment options, before administering the drug for off-label use. While the Food and Drug Administration (FDA) has approved antipsychotic drugs to treat an array of psychiatric conditions, numerous studies conducted during the last decade have concluded that these medications can be harmful when used by frail elders with dementia who do not have a diagnosis of serious mental illness. In fact, the FDA issued two “black box” warnings citing increased risk of death when these drugs are used to treat elderly patients with dementia.

Last year, the Health and Human Services Office of the Inspector General (HHS OIG) issued a report showing that over a six-month period, 305,000, or 14 percent, of the nation’s 2.1 million elderly nursing home residents had at least one Medicare or Medicaid claim for atypical antipsychotics. The HHS OIG also found that 83 percent of Medicare claims for atypical antipsychotic drugs for elderly nursing home residents were associated with off-label conditions and that 88 percent were associated with a condition specified in the FDA box warning. Further, it showed that more than half of the 1.4 million claims for atypical antipsychotic drugs, totaling $116.5 million, failed to comply with Medicare reimbursement criteria. The amendment also calls for a new prescriber education program to promote high-quality, evidence-based treatments, including non-pharmacological interventions. The prescriber education programs would be funded through settlements, penalties and damages recovered in cases related to off-label marketing of prescription drugs.

>>Flickr pic by Ashley Rose

Finding a Cure for Alzheimer’s Or How to View the Glass as Half Empty

Photo by Meredith Farmer

There’s been a lot of stories in the news this week about NAPA and a push to find a cure for Alzheimer’s disease by 2025. USA Today had an article entitled, U.S. Launches National War on Alzheimer’s.

Well, we’ve seen what happens when America goes to war.

I absolutely applaud the push towards massive action against this disease, I applaud the draft frame work put together by the Department of Health and Human Services, but — insert glass-half-empty-HERE — I can’t help but think it’s just not enough and we’re not addressing the big issues…………….

Caregiving right now. Today.

There simply are not enough resources for primary caregivers NOW. There is simply not enough emphasis on dementia, dementia care, behaviors, etc TODAY. Let’s be honest, we have yet to develop a “cure” for cancer or for AIDS. We have wonderfully beneficial treatments that help prolong life, and yes, we can eradicate certain cancers, but it’s often a brutal treatment process that can take time and a serious toll on one’s health.

I am scared that we are giving desperate caregivers false hope about a cure…………….. I am scared that we are giving young adult caregivers who may develop the disease themselves FALSE HOPE. And if we do find a cure, how much will it cost? Will insurance actually cover your cure? I wonder…………………

I see so many desperate people on Facebook, begging for help, for a cure………………….. WE ARE DESPERATE!

Science has a very primitive understanding of the human brain…………..if you ask me. But then, I’m just a writer…………… still, I say everyone is different. No two bodies are alike. Some treatments work; others don’t or won’t. The human brain is complex. A disease like Alzheimer or FTD affect people differently. You mom may exhibit classic symptoms whereas mine never did. Think about something as simple as Aspirin……………….. it may work to treat your headache, but it won’t put a dent in mine — thank God for Advil.

And what about those individuals dying from some other grotesque form of dementia?

Vascular dementia
Mixed dementia
Frontotemporal dementia / Pick’s disease
Dementia with Lewy bodies
Parkinson’s disease
Huntington’s Disease

The other thing I can’t help but think about is cost. Our current Congress refuses to pay for ANYTHING unless we CUT. So, seriously, how are we going to pay for this? Dementia care costs A LOT of money…………of course, if you’re in Congress this is probably a moot point for you since you have the best health care my tax dollars can afford and a pension to boot…………… In-home care is not free. Most middle-class families cannot balance a full-time job and be a full-time caregiver, and frankly, FMLA is simply not enough time……………….Dementia care is a family disease. It takes a village to care for a demented loved one, and yet, many of us are scattered…………….. strangers come and go………………. they have no real investment in your loved one.

My dad retired to be a full-time caregiver. My mother’s type of dementia, FTD, made it difficult to have a random stranger care for her and she certainly would not let anyone except her husband bathe her — even that was a challenge. She could be combative. She would try to leave the house. She was, at times, very difficult to care for………………. and what about other solutions, you say? Well, the adult day care center said she could not come back because she spit on the floor — not very hygienic. We had little choice about how we could care for my mom. I tried to take her to another adult day care that focused on dementia care……………. it was a no-go. She would not sit still as they read the daily newspaper. She wanted to go home. At least she liked the other place. She enjoyed going.

Dementia patients are not alike. Some will sit quietly. MOST will not.

I am scared for the people who will soon be dealing with this disease because the majority of Americans will not be able to afford adequate care. No one can afford to pay for a nursing home out of pocket, especially if you have a severely demented loved one. My dream nursing home (hey, you might have a dream pre-school for your kid) runs around $7,000 a MONTH. Even if you have Medicaid, services are often limited………. and then let’s talk about the kind of care you get. Most state-approved caregivers/babysitters are not trained to deal with behaviors. And frankly, if you’re making minimum-wage or around that, who would want the job?

Thank you Uncle Sam for putting together a rough draft of what WE the People need when it comes to dementia care and support. Your draft covered pretty much everything. Now let’s see how you’re going to make it a reality; and let’s see if our ineffective (I see no change coming anytime soon) Congress will actually pay for it.


>>Flickr pic by Meredith Farmer