Don’t underestimate the power of caregivers
caregiver conference aging in america

The first session at the Aging in America conference that I attended last week was titled, “Is family caregiving the next public health crisis?”

I’m sure all of you can guess what the answer was: a resounding yes.

After attending this year’s conference in Chicago, I came away with two major impressions: there are many aging and caregiving battles ahead of us, but we also have an army of smart, determined, and compassionate advocates who are dedicating their lives to the cause.

It was empowering to witness family caregivers being recognized, supported, and championed, instead of being marginalized, trivialized, and ignored. It was inspiring to meet so many professionals who are working tirelessly to address the concerns of caregivers. I presented my Respite Care Share concept as part of the poster sessions.

Progress is being made, but there are still many issues left to address. The recurring topics I heard addressed throughout the conference:

  • Managing the financial toll of caregiving
  • Ensuring family caregivers are recognized by the medical community as essential members of their loved one’s care plan
  • Making sure family has adequate support system

There are no easy answers on the financial front, with America’s health care legislation a political football that has been punted for the time being. There are various bills tackling the cost of caregiving that have been introduced in Congress, but it’s at the state and county levels where the most innovative programs are being launched. Family caregivers should contact their local aging agencies to see what aid and other resources are available. I talked to several people who work for community health agencies that stressed how in some cases, aid is available, but people are unaware that such programs exist.

The CARE Act, which has been passed in dozens of states, requires hospitals to record the name of the designated family caregiver on medical records, inform that person when a patient is discharged, and provide training to the family caregiver for medical tasks that will need to be performed at home upon patient discharge.

Support for caregivers in all forms was discussed extensively at the conference. Expanding respite care opportunities and making sure that caregivers have the supplies, training and access to health care for themselves were all topics of discussion. A focus on diversity was also a major theme of the conference. The needs of an African-American middle-aged caregiver may be different than a millennial caregiver from the LGBT community, and programs should be flexible in addressing a diverse population.

More effective communication was a recurring theme in all of the sessions I attended. Caregiving professionals expressed the need to reach family caregivers before they burn out. Establishing that communication early on, starting in the doctor’s office, is key. Many medical professionals said that they don’t have the resource information they need to distribute to the family caregivers who walk through their doors.

Family caregivers will need to continue to speak up and speak out while advocates continue to champion our cause. If you are a designated caregiver, insist that medical professionals keep you involved in your loved one’s care plan. Don’t be afraid to ask for training or assistance when it comes to performing medical tasks at home. And though it may sound downright impossible, don’t ignore your own health and well-being. Even an hour away at the coffee shop enjoying a good book while a neighbor or friend watches your loved one can make a difference. Join a support group or caregiving coalition. There are online outlets as well as in-person groups.

I can’t think of a stronger group of people to deal with a crisis than current and former caregivers and their advocates. Let’s keep fighting.

Written by Joy Johnston
Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.

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5 Comments

  1. thanks for sharing this information!! woo I passed it on

    Reply
  2. When you have it 24/7 and care for another family member as well, it is a crisis.

    Reply
  3. It has been a crisis for sometime.

    Reply
  4. Let’s not forget those caring for children, or adult children with disabilities whose parents are aging and needing their own care, as well as support for themselves. Many area agencies on aging cannot help these families. Additionally, what about the aging adults with no family, yet neighbors and friends step up to heed the call of caregiving. This article highlights the great start of a dialogue and discussion surrounding these issues. Grassroots is going to lead the way.

    Reply

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