Reimagine Everything: Twenty Million Family Caregivers Performing Complex Medical/Nursing

May 10, 2019 • AARP, Columnists

Ron Mori

If you are a caregiver, you are not alone. You need to be aware of the latest family caregiver survey findings from AARP. The study found that half of the nation’s 40 million family caregivers are performing complicated medical/nursing tasks for their family members and friends, including giving injections, preparing special diets, managing tube feedings and handling medical equipment, according to a new Home Alone Revisited report. In addition, 70 percent of these caregivers are dealing with the stress of managing pain relief in the midst of a national opioid crisis.

Home Alone Revisited: Family Caregivers Providing Complex Care is a special report from the Founders of the Home Alone Alliance (AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing). With funding from the John A. Hartford Foundation to the AARP Foundation, the study took an in-depth look at the specific medical/nursing tasks that family caregivers provide to loved ones.

“This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, PhD, senior vp and director for the AARP Public Policy Institute. “About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system — with providers and hospitals — to help support these family caregivers.”

The Home Alone Revisited report found that family caregivers are performing a variety of complex nursing and medical tasks typically performed by trained health care professionals, including:

  • A majority (82 percent) manage medications.
  • Almost half (48 percent) prepare special diets.
  • Half (51 percent) assist with canes, walkers or other mobility devices.
  • Over a third (37 percent) deal with wound care.
  • One third (30 percent) manage incontinence.

“Family caregivers are the linchpin in our health care system, particularly for older adults,” said Rani E. Snyder, program director at the John A. Hartford Foundation. “This study shines new light on the diversity of family caregivers performing complex tasks — from men to millennials to multicultural populations — and is a rallying cry for an all-hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the health care team.”

This study builds on the landmark Home Alone study, which was the first national look at how family caregivers are managing medical/nursing tasks, such as managing medications, changing dressings and other tasks in the home setting that are typically performed by trained professionals in hospitals.

Home Alone Revisited oversampled multicultural groups to ensure multicultural representation and investigated generational differences. Difficult tasks such as preparing special diets, managing incontinence and dealing with pain were explored in depth.

Other major findings of Home Alone Revisited include:

  • Family caregivers are largely on their own in learning how to perform medical/nursing tasks such as managing incontinence and preparing special diets.
  • Most family caregivers who perform medical/nursing tasks feel they have no choice.
  • Seven out of 10 family caregivers performing medical/nursing tasks face the practical and emotional burden of managing pain.
  • Multicultural family caregivers are more likely to experience strain and worry about making a mistake, regardless of income.
  • Caregiving is a cross-generational issue for both women and men.
  • Social isolation compounds difficulties with complex care, across generations and cultural groups.
  • The CARE Act is now law in 42 states and seems to be making a difference, but only 20 percent of family caregivers were given at least 24 hours’ notice of hospital discharge.

Family caregivers often feel stressed about performing these tasks and worry about making mistakes. The Home Alone Alliance is dedicated to creating solutions geared toward supporting family caregivers performing these complex tasks.

For helpful videos and resource guides on a variety of topics ranging from incontinence to wound care, visit https://www.aarp.org/ppi/initiatives/home-alone-alliance/.

Ron Mori is a member of the Washington, D.C., JACL chapter and manager of community, states and national affairs — multicultural leadership for AARP.

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