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Identifying Family Caregivers

Identifying Family Caregivers

Suzanne Mintz
2011-NFCM-Sm

There are more than 65 million family caregivers in America. Some are just beginning the caregiving journey while others have been providing care for five, 10, 15, even 20 years or more. It’s hard for those who are just beginning to help Mom and Dad with a few activities each week to relate to those of us who are providing more than 40 hours of care a week to a spouse/ partner, child, or parent who is severely ill and/or disabled, who lives with us, and who needs help with virtually all the ordinary activities of daily living such as dressing, toileting, eating, etc.

Those at the beginning of the journey don’t interact with the healthcare system as much as “high-burden” family caregivers — those of us who are putting in more than 40 hours a week helping a loved one. I fit into the latter group and I suspect that most of you reading this article do too. When there is talk about family caregivers needing help, about the nation’s most vulnerable citizens — and those who require the most resources — we and our loved ones are the people being discussed.

Within the caregiving community, advocates, scholars, researchers and others have all lamented the fact that as a rule, family caregivers don’t self-identify and that is the reason it is so hard to reach us with information and support. People at the beginning of the family caregiving journey are less likely to self-identify as family caregivers and that may be OK, but it is very important that high-burden family caregivers self-identify, or are identified as such by others.

The other day I had one of those “I should have had a V8” moments. I realized that it is less important for family caregivers to self-identify than it is for healthcare providers and the healthcare system to identify who are family caregivers. How can our healthcare system provide patient- and family-centered care, as we are told it should, if it doesn’t identify half of the equation? It doesn’t make sense really, and it certainly isn’t respectful. I have an idea about how family caregivers can be identified through their interaction with the healthcare system, an idea that is easy to implement and will cost virtually no money at all.

We’ve all filled out countless medical intake forms that become part of the medical record. They ask about our health history and even that of our parents, but they never ask, “Do you provide care for a family member or friend who is chronically ill and/or disabled?” or, “If you have a chronic illness or disability, is there a family member or friend who provides care to you or helps you manage your illness or disability?”

How can doctors, nurses and others pay attention to us, find out what care we provide at home, and keep an eye on our own health if they don’t know who we are? It’s important that they know exactly what type of care we provide our loved ones.

Do you do any of the following: take a loved one to the doctor regularly, manage his/her medications, or help him/her get in and out of bed and to the toilet, or eat or dress? How long have you been providing care? Do you have chronic back pain or feelings of depression? Knowing this type of information can impact the plan of care that healthcare professionals recommend and it can alert them to any problems you might have as well. While in some cases it’s obvious that there is a family caregiver, if it isn’t in the record, it isn’t official; consequently, we are truly invisible to the healthcare establishment, the government, and private insurers, despite the rhetoric to the contrary.

Given all the talk about patient- and family-centered care, not identifying family caregivers is at best an oversight and at worst hypocritical; either way, we need to correct this glaring omission. It’s important to inform healthcare professionals, key healthcare decision makers, the government, and private insurance companies that “family caregiver” is not just a term to pay tribute to, but, rather, that we are real people who provide long-term care for millions of Americans.

What you can do to ensure that family caregivers are identified in medical records:

  1. Attach a piece of paper to every intake form you fill out for yourself or your loved one. Put your name and your loved one’s name at the top and then write: “I am John Smith’s wife and his primary caregiver,” or, “My daughter, Nancy Dale, is my primary caregiver,” or a similar phrase. List the top five to 10 tasks you do and note the impact on your health and well-being (chronic back pain, depression) and your life (having to cut hours at work). Save this information on your computer and print it out each time you take Mom to the doctor or visit your own.
  2. Talk about the idea with your pharmacists, nurses, or others you come in contact with who have some connection to the healthcare system. They have probably never thought about the idea of identifying family caregivers on medical records.
  3. Write to your insurance company. Tell them that knowing who among their beneficiaries are family caregivers, and/or who have family caregivers, will provide them with an opportunity to find new ways to improve care and cut costs.
  4. Use social media to spread the idea. Talk to family, friends, and even clergy.

The goal is to create a buzz so that family caregivers and everyday people, as well as providers and decision makers, realize that something is missing on medical records: information about whether someone is or has a family caregiver. November is National Family Caregivers (NFC) Month. Let’s make NFC Month 2011 the time we began the movement to identify family caregivers in medical records.

 Click here for more information on the National Family Caregivers Association.

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