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.”

A Man Walked Into a Bar With Adult Diapers On……..

I’ve been hearing a lot of adult diaper jokes lately………………… I don’t know if that’s just how the universe works because the universe, in all of its infinite wisdom, is actually a really big dick……………………………. or I just happen to be more in tune with adult diapers since I buy them often.

I don’t find adult diaper jokes very funny…………………… when they do come up, I fake-laugh and hope the subject is changed. Promptly………………… Look, I try to have a good sense of humor about my mom and her disease (my new joke is that trying to get her this really good nursing home is like trying to get a kid into private school……………….. OK, it’s funnier when I say it and you see my face), but adult diapers, well, let’s face it, of all of the humiliations we humans have to endure as we get older, sitting in a mushy pile of your own caca, waiting for a stranger to change you is surely at the top of the list.

Alas, most people don’t really think the adult diaper thing through…………. for some weird reason, they associate adult diapers with pee — just PEE………………….. because somehow you’ll be able to get yourself to the toilet to poop??????

The other night, we were at a favorite restaurant having a bite to eat and a glass of vino………………………………. the owner of the restaurant (we’re chums) came by the bar to say hello……………………. the conversation (I had NOTHING to do with this) turned to aging, retirement, getting older and, naturally, adult diapers (the universe laughs)………………….. the owner said that he’s already told his family that he doesn’t want to go to a nursing home and that he wants his family to change him if it ever gets to that point where he develops, you know, The Alzheimer’s, and has to wear adult diapers………………………….. he doesn’t want complete strangers cleaning up his mess………………………….that should he ever become difficult, he’d be OK with his family smacking him and putting him in a corner………………………………

I smiled.

Fake laugh.

Jon turned to look at me.

I think he wants to make sure I’m not twitching……………. or seething with rage.

Think Pulp Fiction.

“Bitch, be cool.”

I didn’t want to tell him that my mom was being cared for by strangers. That my mom is in adult diapers and it’s not easy to change out your own parent’s poopy diapers. That you can’t just slap your parent when they act out…………… that most dementia patients don’t just sit there quietly (I wish!)………….. that most families, after a point, cannot take care of their loved one………………….. that asking your daughters and wife to do this for you is like asking them to take give up a limb…………………. that your daughters that you worked so hard for will have to make huge sacrifices to care for you and your poopy diapers…………………………..

Getting old is a scary prospect. I think about it a lot. I think about how I’m going to pay for my own care and I’m 34. The majority of us avoid the topic all together, or we simply hope our kids will be there to pick up the dirty work of caregiving…………………….. clearly. I don’t have kids. And if I did, I wouldn’t bank on having kids who would step in and make certain sacrifices on my behalf…………. nor would I want my child to change out my diaper…………………… I often wonder if I would be able to do it……………………. to call it a day if I knew that my days were only going to get worse. I can’t help but wonder if there is a God that would punish me by turning me into a roach in my next life………………. or condemn me to an eternity in Hell…………my good deeds on Earth erased because I boldly ended my own life so I would not have to suffer a fate like my mother’s.

We left the restaurant and I didn’t say a word. I think I was too cold to care. “Turn up the heat, it’s freezing!” I let that entire conversation slide off my back.

Do I think that man is selfish. Yes. Do I like his white beans and escarole? Yes.

That’s life. People make adult diaper jokes and they don’t think about what it means to wear an adult diaper………………… but then again, if we all fretted about our destinies, what would be the point of life?

I can’t help but fret. For the last 7 years, her disease has been my life. I can’t help but think about my own future, my fate…………….. is it hereditary? Will I get this too?

Life is a toss-up.

Sometimes you get a really shitty hand.

>>Flickr pic by the tremendously talented Meredith Farmer

Full Circle Or 73 going on 3

Something that I think everyone who has a parent with dementia can relate to is this idea of life coming full circle. Our parents are growing down, they’re regressing (my mom is 73 going on 3… I believe we are in the terrible demented 2s still) and it’s one of the more frustrating facets of any dementia: The role reversal.

I talk about this theme a lot in the blog because I believe this is one of those really tough things every adult child faces—and it truly, truly sucks.

With my mom, this has been especially true, I think because of her kind of dementia—the frontotemporal stuff eats away at the part of your brain that keeps you from behaving exactly like a tot. In public places. Throwing tantrums. Or, in our case, spitting and stealing stuff……………….. my mom has no concept of right or wrong, good or bad, or sometimes, yes or no. She does what she wants, like a child, but doesn’t have the ability to learn or retain important, very useful, information—like, for instance, if you drink soap (as she does), it does not taste good so you skip the soap. Mom still drinks the soap. Her behaviors and plain inability to retain new information has forced us to take measures that are usually reserved for mini-humans.

We baby proof………………………………….

Dad has taken to locking the fridge with a giant chain and lock (remember, she’s stronger than me so we can’t just use plastic locks like you would for a 2 year old). Certain electrical outlets have a reset button so they don’t generate a current………… kitchen equipment has been put away (mom took the grease from the fry daddy and poured it around the pool to “feed her birds”), and I’ve taken to shopping in the baby aisle for bath soap, toothpaste, wipes and other kid-friendly goods because it just makes sense……………………………… she hates water, let’s throw in Dora the Explorer bubble soap and see if that helps. She’s not into washing her hands so let’s get Johnson & Johnson wipes that disinfect and smell nice. I have a theory that she’s not really brushing her teeth, so lets get her something that tastes good AND fights cavities.

When the parent becomes the child and the child the parent…………… well, it has a way of messing you up. You feel abandoned in a way, because no matter how old you are, sometimes you just want your parent. This disease has robbed me of my mom. I’ll probably never get over that. I can’t imagine how, really………………….. even when she’s gone and it’s behind us; the idea that I lost my mom starting in my late 20s is an emotional dagger……………………………………. I sometimes wonder if my mom would have helped steer me in other, maybe better directions, if she were mentally here for me. I wonder how our relationship would have evolved as I got older….. from mother/daughter to a beautiful friendship between adults. I have no idea.

What I do know is that I have a profound appreciation for tear-free shampoo.

Flickr pic from StarMama