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The Caregivers’ Journey, Part 1: Guidance


Staff member
Mar 22, 2024
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The facts and figures about caregivers — family members and friends who provide care and support to people with chronic health conditions, disabilities and other problems — are staggering. According to the Centers for Disease Control and Prevention (CDC), as of 2020, more than one in five Americans were caregivers. That worked out to about 53 million people. Out of the people who aren’t yet caregivers, one in six expects to be within the next two years. By 2030, about 73 million Americans will be 65 or older. And many of these people will need help from caregivers to maintain their quality of life.

But numbers are only part of the story. And they can be a bit abstract if you haven’t lived the caregiver experience, as I’m doing now with my father. Family caregivers are often jolted into this experience. Like when I needed to step in and start helping my dad make some important decisions about his health and well-being. I was overwhelmed in a way statistics can’t explain.

What I did — and what family caregivers like me do every day — is turn to healthcare organizations (HCOs) like yours. Healthcare providers, health insurers, medical device providers and more are vital resources for both the patient/member and the caregiver alike. But the experience for caregivers has been lacking at best and all too often unnavigable.

The state of affairs for the caregiver journey means your HCO can step up and lead the way for the patients and caregivers you serve. Supporting caregivers makes sense from the business perspective, because supported caregivers:

  • Lead to more satisfied patients/members
  • Demonstrate your HCO’s value proposition, which leads to more conversions
  • Help your patients/members adhere to their care plans, which leads to healthier patients/members overall

In this series, we’ll go over five key areas your team needs to consider for caregivers:

  • This article, Part 1, will discuss the guided journey you can offer for caregivers
  • Part 2 will discuss how you can connect caregivers to support systems and services
  • Part 3 will discuss the logistics of caregiving
  • Part 4 will discuss caregiver types and the various permissions needed for each
  • Part 5 will discuss the importance of open and quick communication among HCOs, patients/members and caregivers

Understand the beginning of the caregiver journey

For most caregivers and their loved ones, the caregiver journey has a definite start. It doesn’t tend to be something you ease into over a long time. A fall, a sudden illness or injury, a new diagnosis — something happens that makes the caregiver realize their loved one needs more help.

This is a shocking and scary time for caregiver and patient/member alike. The caregiver likely will need to familiarize themselves with their loved one’s care plan, health plan coverage, finances and other information. The patient/member, meanwhile, will be worried about a loss of autonomy, real or perceived, as well as the fear of this new unknown.

This is a chance for your HCO to earn trust and ease the minds of everyone involved. An empathetic presence, geared toward the new and uncertain-of-themselves caregiver, will help you start their journey on the right foot. And you can reassure your patient/member at the same time that you’ll continue to be there for them every step of the way. No one gets left out. No one gets forgotten. And everyone feels both seen and heard during this challenging time of new and uncertain beginnings.

Make everything as easy as possible for caregivers

New caregivers have a lot on their minds. On top of processing their loved one’s condition and fears of the unknown, there are often matters of paperwork to deal with. The patient/member has forms to fill out, documentation to provide, appointments to schedule and so on. And some or all of that is now the responsibility of the newfound caregiver. No wonder more than 60% of caregivers report experiencing symptoms of burnout.

It’s not possible for your HCO to take all the newfound responsibilities off caregivers’ plates. But you can ease the burden a bit. For one thing, don’t make caregivers have to hunt and search for what they need to assume their newfound responsibilities. Pull together a checklist of all the documentation caregivers will need to give you to be in the caregiver role and receive communications that ordinarily would be protected under HIPAA and other patient confidentiality regulations. These may include:

  • Advance directives
  • Consent forms
  • Healthcare proxy and/or power of attorney
  • HIPAA authorization forms
  • Wills and living wills

Provide a centralized location for caregivers to submit these documents. And for the forms your HCO requires the caregiver to fill out, make sure you have a convenient place for caregivers to access and complete them electronically. Bonus points if caregivers can complete the forms digitally on their mobile devices in addition to desktop computers. And, of course, transition away from any forms that require printing, manual entry with a pen or pencil and scanning to upload back to you.

To go the extra mile for your patient/member’s caregiver, route them to a dedicated care coordinator, social worker or other professional within your HCO who can help guide them along the way. It can be challenging to deal with scheduling multiple appointments, often in multiple locations. And the challenges are even greater if the family caregiver doesn’t live with their loved one. If your organization has resources to ease that burden for caregivers, you’ll earn loyalty and gratitude from consumers by connecting them to people who can help navigate these complexities.

Customize your caregivers’ portal experience

We’re starting to see some HCOs provide basic portal functions for caregivers. However, you should consider these features as essential for caregivers who are managing aspects of the patient/member experience for their loved ones:

  • Easy access to appointment scheduling, provider search/your Find Care experience, etc.
  • Coverage details (for payer organizations)
  • Access to nurses for triage (e.g., does X need care, and if so, where should my loved one go?)
  • Explanation of facility types for care options (e.g., when to go certain places for certain types of care)
  • Integrations with services and resources specific to caregivers, such as senior-care providers (e.g., Care.com)

By homing in on the resources they’re most likely to need, you can make the process smoother not only for the caregiver but also for the patient/member.

Serve up content geared toward your caregivers

People new to the caregiver role within your HCO are going to have a lot of questions. You can help them self-serve (and, simultaneously, reduce some of the burden on your staff members) by curating content that answers most or all the questions that aren’t specific to their loved ones’ care plans or coverages.

Talk with caregivers and patients/members who have specified family caregivers. Ask them what kinds of content resources they either would benefit from now or would have benefited from at the beginning of the caregiving journey. And get input from provider or benefit teams within your organization. You want to make sure the content you create is valuable for them as well.

Related: Caregiver Healthcare Content: When the Patient Isn’t Your Audience

Unlock the power of caregiver enablement

The surge in caregivers isn’t going away anytime soon. But by having a solid strategy in place, your HCO can differentiate itself from the competition and earn loyalty from caregivers and patients/members alike. Our caregiver enablement approach can show you how to provide the digital caregiver experience your consumers expect and deserve. Contact us to learn more or to schedule an introductory workshop.

And don’t miss Part 2 of this series. We’ll be discussing the stress of caregiving and how your HCO can help connect caregivers to the support and resources they need during this challenging time. See you then!
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