Research for Tomorrow/Help for Today-Can They Co-Exist?

The following is a post written by Denise Brown, founder of Caregiving.com. It was featured on JaneNation.com under the “Caregiver” Sisterhood.

I have always said that in the United States, we spend so much money on research and technology that a national health care plan will never be successful. And, yes, I’m going ot say it, we spend too much money on the technology that keeps people alive – BUT NOT LIVING.

Denise’s article discusses how so much money is funneled into research for tomorrow’s cure (where egos play a big role) that there is not much left for today’s care. It is so great an article that I just had to share it with you and because I just returned from walking in the Alzheimer’s Memory Walk, I thought it most appropriate to do so today.

When Resarching for Tomorrow, Pay For Today’s Help

by Denise Brown- founder of Caregiving.com

The New York Times reported recently that researchers have made a huge headway in the search for treatments and a cure for Alzheimer’s disease (“Sharing of Data Leads to Progress on Alzheimer’s”). The progress can be traced to a collaboration between researchers from pharmaceutical companies and academia called Alzheimer’s Disease Neuroimaging Initiative (ADNI).

“The key to the Alzheimer’s project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world,” writes reporter Gina Kolata.

I think we all can agree this is a wonderful win. Can you imagine if we could prevent, or at least, treat Alzheimer’s?

Hidden within the win, though, lie two losses.

First Loss

Apparently, ego drives research. At least that’s what one researcher quoted in the article says:

“It was unbelievable,” said Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania. “It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”

So, apparently, if your caree (the person receiving your care) has the bad luck to suffer from another kind of disease, chances are efforts to find treatments and cures will be hampered by the egos of the researchers. Consider what happened with AIDS. American researchers fought with French researchers over who first detected the AIDS virus and who first developed a blood test to diagnose the disease. It’s about winning rather than helping. While researchers battled to get credit, people died.

Why isn’t all research based on an open source system, like the Alzheimer’s initiative? Why do we allow researchers to recreate the wheel–over and over? Why do we fund more than one project which sets out to answer the same question? Why isn’t any organization which receives government funds required to be a part of an initiative like the one for Alzheimer’s disease?

I know, I know. When you get the win, you get the money. And, apparently, it’s better to win cash than save lives.

Second Loss

ADNI received $70.4 million (including $41 from the The National Institute on Aging) for its first six years. It looks like it will have another $70 million for the next five years.

That’s great for our future. But, what about today? What about helping those afflicted with Alzheimer’s disease NOW?

About 10 years ago, I attended an international caregiving conference held in Florida. A colleague and I sat next to a delightful woman from Australia who worked with young adults in a caregiving role. She turned to my colleague and said: “You Americans love your research, don’t you?”

In other words, why in the world don’t you help those who need your help right now?

I recently received a very nice invitation from Mid-East Area Agency on Aging Foundation in St. Louis to attend its Trivia Night fundraiser. The agency needs to raise funds to offset the $310,000 cut in funding to its Meals On Wheels program this year.

The New York Times reported that “since the start of the recession, at least 25 states and the District of Columbia have curtailed programs that include meal deliveries, housekeeping aid and assistance for family caregivers.”

It’s tough out there. Unless you’re a researcher. So, I propose that 30% of all research dollars be automatically funneled to help today’s family caregivers. In the case of ADNI, that means $21 million.

Wow!

I knew a professional who ran a respite care program for family caregivers. She often spoke about her budget-friendly family caregivers, that the family caregivers who received her respite services practiced amazing prudence and practicality in using funds. That graciousness allowed the funds to stretch to help as many family caregivers as possible.

So, imagine what family caregivers could do with $21 million. What if 30,000 family caregivers received $700 for respite services? That $700 could cover about 45 hours of home care or 14 days of adult day services. That’s a vacation for a family caregiver. What a difference that could make.

Of course, we could always research the difference $700 makes to family caregiver.

Give the $21 million to family caregivers and I’ll do the research–free of charge.

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Editor note: You can find more of Denise’s articles at Caregiving.com and JaneNation.com