At 49 years old, Emily is an accomplished accountant. She worked her way up in a prominent firm, but recently took a leave of absence to care for her father, Sid. She is married to her college sweetheart but doesn’t have any children. The only classes she ever took that were remotely close to nursing were the introductory classes in biology and chemistry that she had to take to graduate from college. Other than that, she had no concept of what it was to be a nurse, or perform medical/nursing tasks, until she was thrust into the task when her father fell ill.
There are currently 20 million family caregivers in the United States who are similar to Emily in that they perform medical/nursing tasks with no formal training. These tasks often include handling prescriptions, helping someone climb stairs with a cane, caring for and cleaning wounds, and even operating home dialysis equipment. Family caregivers often do these tasks with no training or assistance from a health care professional.
A recent report, called “Home Alone Revisited – Family Caregivers Providing Complex Care” was released at the annual meeting of the American Society on Aging earlier this month. The report is an update of a similar examination of caregiving in 2012 and was produced by the Founders of the Home Alone Alliance: AARP, United Hospital Fund, Family Caregiver Alliance, and the School of Nursing at the University of California, Davis.
Findings from the Original (2012) Report
In the original report from seven years ago, 78% of family caregivers surveyed performed medical/nursing tasks, including managing medication and administering intravenous fluids and injections, without receiving assistance and training from health professionals. Almost half were administering five to nine prescription medications a day. Similar to Emily in our example, these caregivers (more than 66% of them) felt stressed and worried about making a mistake. The original report recommended training to respond to changes in the family member’s condition or the family caregiver’s needs and capabilities, more funding for such training, and new models of care that focus on coordination and quality improvement for family caregivers.
Findings from the New (2019) Report
In the new report, an online survey of 2,089 family caregivers found that many believed their efforts were keeping a loved one out of a nursing home, but were worried about making mistakes when it came to their medical duties.
Some of the key highlights of the new report were as follows:
- 82% of caregivers managed medications, and half prepared special diets;
- 37% provided wound care, and 30% managed incontinence;
- 51% assist with canes, walkers, or other mobility devices;
- Caregivers from the baby boom generation averaged 28 hours per week of help, compared with 19 hours for Generation X caregivers and 18 for millennials;
- 30% manage incontinence. The most emotionally challenging task was managing incontinence with disposable briefs;
- Four in 10 caregivers who help with medical tasks are men. They are less likely than women to receive professional instruction;
- 70% of caregivers who perform medical tasks are managing pain; 80% of them say that’s stressful;
- Most older caregivers felt they had no choice but to take on medical tasks.
Improvements Since the Previous Report
The new report concluded that caregivers are still having to learn too many medical and nursing tasks on their own. However, of those whose loved one had been hospitalized in the last year, 60% said they had received instruction on post-discharge caregiving! The new report acknowledges that hospitals still need to do a better job of identifying family caregivers and telling them what to expect at discharge, and how to continue to perform nursing tasks at home.
How the Passing of the CARE Act Helps
According to AARP, by providing care in the home, family caregivers serve a critical role in helping their loved ones live independently at home. The Caregiver Advise, Record, Enable (CARE) Act was passed in 36 states, including Virginia, Maryland, and Washington, DC to help family caregivers as their loved ones go into the hospital and as they transition home.
The CARE Act requires hospitals to:
- Record the name of the family caregiver on the medical record of your loved one;
- Inform the family caregivers when their loved one is to be discharged;
- Provide the family caregiver with education and instruction of the medical tasks he or she will need to perform for the patient at home.
Click here to download a CARE Act wallet card to place in your and your loved one’s wallets—next to your insurance cards. That way, you’ll both have important information about this new law available when you need it most. Please see our article for more details on the CARE Act.
Helpful Videos for Caregivers
AARP has produced a series of videos that address many of the common care-giving problems highlighted in the report. You can find videos on the following subjects:
- Special diets;
- Managing incontinence;
- Wound care;
- Mobility; and
- Managing Medications.
The same page offers a multitude of one-page resources geared towards supporting family caregivers who perform complex tasks.
Caregivers and Loved Ones Need to Think About Long-Term Care in the Future
Are you a caregiver who can no longer care for a loved one at home? Are you now considering nursing home care for your loved one? If you or your loved one is over 65 or suffering from any sort of serious health condition, the best time to do Medicaid Asset Protection planning is now. Whether you or your loved one is years away from needing nursing home care, is already in a nursing facility, or is somewhere in between, the time to plan is now, not when you are about to run out of money. Please don’t hesitate to call us at any time to make an appointment for an initial consultation:
Elder Law Attorney Fairfax: 703-691-1888
Elder Law Attorney Fredericksburg: 540-479-1435
Elder Law Attorney Rockville: 301-519-8041
Elder Law Attorney DC: 202-587-2797
About Evan H Farr, CELA, CAP
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