Unpaid Caregivers: Integral to Healthcare

Ellen V. Makar, MSN, RN-BC, CCM, CPHIMS, CENPFACA- Subgroup On Health IT Workforce Development

February 14, 2014

In the US and UK

Unpaid. Unappreciated. Untrained. Undercounted. Exhausted. But vital.

“America’s stealth weapon against chronic illness is a 46-year-old woman with a family, a high-school degree, a full-time job and a household income of $35,000. She has no particular training in health care. And, to tell you the truth, sometimes she doesn’t feel that great herself…”

-- AMA Medical News, 2001

Disability Surveys:4.8 Million (n=4 surveys)

Caregiver Self-identification Surveys24.4 Million (n=4 surveys)

Types of Assistance by CompanionDuring Physician Visit

Write down what physician says, take notes, remember

Give information about my medical needs and conditions to physician

Ask questions

Explain physician instructions

Physical help (transferring to exam table, dressing)

44.1%

41.6%

41.1%

29.7%

8.4%

4Source: Wolff and Roter, Archives of Internal Medicine, 2008

5

Connecting Caregivers

“Carers”: UK

7

“Caregivers” : US

Research and Policy Opportunities:

• Who provides care? Consistent terminology, definitions, estimates of size of workforce

• Who needs care? Distinguish core “scope of practice” triggers and opportunities for learning: age groups, conditions, settings of care?

• What are the impacts, costs and benefits? Enable understanding of status quo; payment and delivery incentives to support population-based health that include and value family caregivers.

Opportunities to Move Beyond a Shadow Workforce to Valued Partners in Patient Care