Advocating for Patient Organization with a Care Binder

When it comes to caregiving, it can feel like there are not nearly enough hours in the day to handle all the necessary tasks—from paying bills, to coordinating care, and managing symptoms, the life of a caregiver can easily become a downward spiral of stress brought on by unmanaged paperwork.

According to a 2018 Northwestern Mutual C.A.R.E. study, “experienced caregivers report spending an average of 8.2 hours a day providing care.”

“The sandwich generation is particularly sensitive to the emotional and financial implications of caregiving because they’re juggling multiple roles and responsibilities,” says Kamilah Williams-Kemp, vice president of long-term care at Northwestern Mutual.

A critical tool in preventing caregiver burnout is to implement a system for caregiving organization. Healthcare professionals should advocate the use of a comprehensive care binder or toolkit so patients can track care planning, medical needs and tasks.

When caregivers stay organized it can help patients maintain a sense of control during a time that otherwise feels unmanageable and unorganized. Organization is also a critical way to prevent feelings of being overwhelmed and burned out before they happen.

What Is a Care binder, and Why Should Caregivers Make One?

A care binder is a critical organizational tool to keep track of everything related to caregiving duties and a loved one’s care needs.

Family caregivers can find it comforting to have everything needed in one place. A caregiving binder can also help a family caregiver reduce stress and save time by being more prepared for appointments with healthcare, legal, banking and other professionals by having necessary information immediately at hand.

‘Care planning is a living and breathing process, not a static one to be set every six months and forgotten until the next meeting.’

A care binder evolves with time as patients’ care needs grow or change. Additionally, a care binder can be a useful benchmark to track changes in medication, behavior and important tasks as shifts occur throughout the care journey.

“Care planning is a living and breathing process, not a static one to be set every six months and forgotten until the next meeting,” says contributor Lindsay Perrin. “Care planning is what allows me to focus on what matters most for Dad day-to-day, week-to-week and month-to-month —helping Dad live the best life he can while Lewy Body tightens its grip,” Perrin adds.

“After each doctor visit you will leave with a printed summary of the event. In the mail you’ll get paperwork to re-register or how to prepare for things. Each new therapy brought on will require intake forms, where you keep a copy. Each medication comes with instructions and education. Paper, paper, paper ... without a system, important information will be lost or you won't be able to find it quickly if needed. Every story, even a health story, belongs in a book,” says care coach Kimberly Whiter.

The Caregiver Job Description

We know caregivers gain plenty of skills during their caregiving experiences, so much so that those skills deserve to be on a resume and LinkedIn profile. But really, what is the caregiver's “job description?”

Here are a few definitions and meanings from’s contributors:

“A family caregiver is a keeper of stories, a master navigator, an expert organizer, a talented juggler, and the wearer of many hats,” says Whiter.

Author Rick Lauber adds, “family caregivers can assume many new and unexpected responsibilities including booking appointments, driving, paying bills, downsizing and moving, and helping with physical care (bathing, dressing, toileting, feeding, and medication dispensing). A family caregiver’s range of roles can be wide. They can simply pick up necessary prescriptions from the pharmacy or oversee a dependent adult’s complete care plan.”

“It's important to note that work provided by family caregivers is often unpaid work (contrary to paid caregiving work provided by [direct care and] healthcare professionals). As well, family caregivers do not always have the necessary professional background or experience to help them.”

According to Lauber, “the best family caregivers are patient, good communicators, active listeners, organizers, researchers, delegators, and time managers. They must also be trustworthy, gentle yet firm, attentive, and problem solvers.”

Perrin says in jest, “If I were to sit down and write out the job description of a family caregiver, inclusive of all the responsibilities and daily tasks the job requires, the output would be similar in length to the Dead Sea scrolls or one of those receipts we all get when checking out at CVS.”

In Perrin’s case, the headings on the job description would likely read something like this:

  • Help Dad find fulfillment and purpose
  • Keep Dad safe
  • Ensure people see Dad and not just a disease
  • Make sure Dad is comfortable has created ready-to-use templates for caregivers to download, print and use to assemble their own care binder. is the premier online community for family caregivers. They have developed practical caregiving tips, tools and access to aging resources via state-of-the-art technology that helps family members take care of themselves and their loved ones at every stage in the caregiving journey.