Rather than Research the Problem, Let's Fund the Solution

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Rather than Research the Problem, Let's Fund the Solution

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As I mentioned on Friday, I attended the Science of Caregiving event earlier this week (read Dressing the Part: Family Caregiver, MD).

While I appreciate the emphasis on better understanding the caregiving experience, I found myself at times dismayed by what I heard while at the conference.

One researcher, who used his research funds to launch a website and write a book, stated that family caregivers aren't isolated. My mouth dropped when I heard that. That's a completely false statement: Family caregivers are isolated. (I also was dumbstruck that, in this day and age, the most innovative solution the researcher created was a book and a website.)

I'm concerned researchers have a relationship with data rather than with the family caregiver experience. Before one panel discussion at conference, the researchers admitted their research often focused on an incorrect assumption. They researched a premise about caregiving that isn't true!

Yesterday, I listened to a very short interview with a researcher who recently studied depression among family caregivers of persons with dementia. His research found a correlation between a family caregiver's depression and a caree's earlier death. This is incredibly important, certainly.

Why do we have to go that far with the research? Why don't we just know that a family member's dementia diagnosis puts both the family caregiver and the caree at risk for depression? Why not study effective interventions introduced on Diagnosis Day so that when the family caregiver and a caree hear a diagnosis they immediately become part of a circle of care and support?

And, if research points to a caree's earlier death, why isn't the research introducing a solution? The researcher suggests "social services" provide help so the family caregiver can get a break. Why doesn't the researcher fund such a social service? If your research reaches a conclusion that involves depression and death, why are you not providing a prevention? Why are you talking about the problem without providing the solution?

Better yet, why doesn't the researcher volunteer to help family caregivers in his community to help minimize their depression? Perhaps interaction with family caregivers, rather than data, will improve inspire better research projects in the future.

The article associated with this interview also references the public health problem because of the growing number of individuals diagnosed with dementia. What the article doesn't mention is another public health catastrophe: Family caregiver stress is the overlooked epidemic in our communities. As stressed-out family caregivers, we struggle to remain productive at work, engaged in our communities, and to plan and save for our future. Depending on which statistics you reference, family caregivers may number as many 90 million in the U.S. According to my ongoing stress survey of family caregivers, their stress level is 4.16 on a scale of 1 to 5, which 5 being the most stressed. Of the 614 family caregivers who've rated their stress, 82% rate it at a 4 or 5. This may be a huge leap but: Does that mean we have 73 million completely stressed-out individuals in our communities?

That's an epidemic. Our stress, which we can't seem to resolve, can lead to our depression.

And, that's why we need solutions.

To involve researchers in the caregiving experience, I've invited them to attend our National Caregiving Conference to conduct interviews with family caregivers. In addition, I want them to attend our presentations and panel discussions, the large majority of which are led by family caregivers and former family caregivers, so they hear what it's like for us. I created the National Caregiving Conference so we have an event that focuses on us talking to each other about what it's like rather than creating an event featuring experts telling us what they think it's like for us.

I first wrote about my frustration with research about caregiving in 2010. (Read more about caregiving research.) I'm depressed to say my concerns remain the same. So, again, I'll ask: Please include solutions family caregivers can use in caregiving research projects. We're isolated, alone, completely stressed out. We need help. We need interventions. Researchers have an incredible opportunity to change the course of a family caregiver experience. Please, do that.

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jan

You just wonder, where did they get their data from, and how?