A Theme for You

Denise
November is National Family Caregivers Month. Each year, National Family Caregivers Association (NFCA) chooses a theme for the month. This year, the theme is "Identifying Family Caregivers!"

Here's how NFCA describes the theme and its purpose:
Despite the huge role family caregivers’ play in the care of their loved ones, despite the fact that family caregivers are the only people consistently present across all of their loved ones’ care settings, family caregivers are invisible in American healthcare.

Nowhere on medical intake forms is there a question about whether someone is, or has a family caregiver. Nowhere on a person’s medical record is there a place for a notation of any kind about their care status. Without such information, the role of a family caregiver in the life of a person with chronic conditions is essentially negated, and without such information, a family caregiver’s increased risk for depression and chronic disease cannot be monitored. In some situations, it may be obvious that someone is or has a family caregiver, but if it isn’t in the record, it isn’t official, and cannot be taken into account in developing a plan of care – for both parties.

There is an easy fix to this problem; it doesn’t require legislative action, nor great expense; it only requires the will of those who really are interested in making patient and family centered care the norm in America.

The fix is to have a space on all medical intake forms and electronic medical records to capture information on who is or who has a family caregiver. Next time you fill out a medical form – just make a notation that you provide care to your parent, spouse, child, etc. who has a chronic condition or deals with the frailties of old age. One form at a time you can make a difference, change the status quo and gain recognition for the important job of being a family caregiver.

I had a few questions about this theme, which I emailed to Suzanne Mintz, NFCA president and co-founder, for her comments. (You also can listen to Suzanne, a recent guest on Your Caregiving Journey talk show, here.)

I asked Suzanne:

1. Will a national database be created from these forms?

2. Will medical providers receive information about how help those who designate themselves as a family caregiver?

3. What will change about a family caregiver's experience because they do this?

Suzanne replied:
Right now family caregivers do not formally exist as far as healthcare providers and insurers are concerned. We are not recorded anywhere. Until that happens, there is no systematic way that family caregiver health and well-being can be attended to by healthcare providers and paid for by insurers. Having family caregivers recorded on official medical records is the first step toward making that happen. Initially the only thing that will change, which is a very big thing, is that there will be formal recognition within the healthcare system that family caregivers play a significant role in their loved one’s care and are thus a member of the healthcare team, and that they themselves can be monitored for the negative medical and emotional impacts associated with caregiving. Formal identification on medical charts is the first step on what I assume will be a relatively long road toward education, training and better healthcare for family caregivers.

The specifics of how to get there like everything else will be tried, tested, revised, etc.

I appreciate the passion behind the theme and its thought. Why not put a mark on a physician's intake form that you are a family caregiver?

How about this, too: Why not actually engage in a dialogue with your doctor? Tell him or her about your caregiving role and your needs. The mark only changes a piece of paper; the conversation changes your interaction with your physician and the care you receive.

And, to take this idea a little further: Because the mark on the paper will remain just that (a mark on a paper), why not actually create a database of family caregivers? Why not take advantage of technology, so accessible and affordable, to just create a database? Why not work to get funding from the Administration on Aging and the Centers for Disease Control to set up a central database? Why not ask family caregivers to enter pertinent information about their experience in the database and then send an email reminder annually so they can update their information?

(You know what... This is so easy to do that I just did it. Add you name to our Family Caregiver Database here. I will not sell your information and will only contact you if additional information about your caregiving situation will be helpful in developing caregiving programs and services. I'll send you an email in a year to ask you to update your information.)

And, if the concern is a family caregiver's wellness, why not work with a company, like Walgreens, to encourage an annual wellness visit to the stores' clinics as well as to gather database information?

What if NFCA worked with Medicare, which now pays for annual wellness visits? What if, during these wellness visits, information about a caregiving situation was captured? I appreciate that many family caregivers are not old enough for Medicare, but wouldn't this be a good place to start? (You can learn more about Medicare's annual wellness benefit here.)

Or, what if each Area Agency on Aging, which receives funding to help family caregivers, held an annual health fair for family caregivers? The family caregivers could participate in wellness screenings, speak with health care providers about their health and attend workshops which teach coping skills.

And, what if we had a theme that reflects the state of today? This idea of identifying family caregivers has been around for years. (I wrote about my frustrations about this in a 2005 commentary which appeared on Caregiving.com. I've re-published it this morning for you; you can read it here.)

And, what if the theme actually offers real-world solution? The idea of trying to work with healthcare providers and insurers seems crazy to me. You, as a family caregiver, know exactly what that's like. The solution to the problem lies outside our health care and insurance systems. The solution lies in family caregivers talking about their experience and their needs. It's not about a mark. It's about a conversation. It's about action.

What if we looked forward? What if we looked at the huge problem we'll encounter in 10, 20 and 30 years? How are today's family caregivers going to pay for their own care? How does a family caregiver today, tapped out financially because of the costs of caregiving and the impact of a recession, have any money to pay for the care they may need in our future? (Read Tuesday's article in The New York Times: Still No Relief in Sight for Long-Term Care.)

What if NFCA started a campaign to help family caregivers save for their future? What if the theme was, "A Dollar A Day, Every Day, for Our Future"? What if, starting in 2012, family caregivers saved $1 every day toward their own future? It's not much, but it's a beginning. And, what if a meter tallied the savings so we can all see how a $1 a day adds up? And, what if NFCA solicited donations from other organizations so that a family caregiver in need can apply for help?

So, here's our theme, which starts today. Put away a dollar every day for your future. Take out an envelope right now and write on it: "A Dollar A Day, Every Day, for My Future." Then, put $1 (or four quarters or 10 dimes) in that envelope every day. When you save $100, open up a back account. Make a deposit every week. Do it for the rest of your life.

Your future begins today.

(What do you think? Am I crazy? Share your thoughts in our comments section, below.)

Updates

1. Do you need a package of adult size small Depends? Bette received the wrong size Depends; if you need a size small just contact her through her ad on SharingStore.com here. She'll send them to you at no charge.
2. Our next live call-in talk show airs Tuesday, November 1, at 7:30 p.m. ET (6:30 p.m. CT, 4:30 p.m. PT). In honor of National Family Caregivers Month, we’re taking your answers to this question: What do you know about caregiving that the world doesn't? Call (646) 652-4944 to share your thoughts or join our show’s chat room to post your insight. If you’re on Twitter, you can tweet during the show using this hashtag: #caretalk. And, to thank you for calling in the during the show to share, we’ll give our first two callers Caregiving.com cornucopias of goodies. You can listen to our show here.


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