Caregiving 101

Part 1 - The Role of Caregivers in Healthcare

In healthcare, we frequently talk about patients, providers, and health plans as the primary stakeholders in the care journey. However, one of the unsung heroes in this journey often not mentioned is the caregiver. Whether it's a family member or friend, caregivers take on the unpaid, informal role of delivering daily care for loved ones with serious illnesses. While caregiving is often viewed as a labor of love, the role is demanding, complex, and often long-term. This two-part series aims to bring to light the nuanced nature of caregiving and underline the opportunities for digital health startups to add value to the care economy in the US healthcare industry.

In Part 1 of this post, we will illuminate the caregiver experience, elements intensifying the demand, and challenges caregivers face in their role today.

In Part 2, we examine how digital health addresses unique problems faced by caregivers and how the digital revolution will continue to transform the care economy. We highlight several early-stage companies taking different approaches to empower caregivers and/or care receivers to shape their shared journey.  

Part I: Spotlight on the US Caregiving Industry

Factors driving the need for caregiving 

As more baby boomers in America enter their senior years, many prefer to age at home rather than at a healthcare facility. In addition to the incoming 'grey tsunami,' the prevalence of chronic conditions and disabilities in the United States has been steadily escalating. As a result, the need for caregivers has spiked. According to AARP, an estimated 53 million adult Americans provide unpaid aid and support to friends or family, increasing demand.

Nebulous nature of the caregiving role

While the need for individual caregivers is clear, the concept itself can be amorphous. Given the nature of the relationship between the caregiver and care recipient – a daughter caring for a mother, spouse caring for a spouse, or individual caring for a close friend – caregiving is not always acknowledged as a formal role. This uncertainty translates to the workplace as employers offer limited policies for paid leave, highlighting the insufficient understanding of caregiving. Moreover, the division of responsibilities between caregivers and existing healthcare professionals is becoming increasingly murky. Finally, although caregivers take on more nursing responsibilities like injections, there is no established educational curriculum to train caregivers. As a result, many don't know where to start and often rely on trial and error to learn on the job; this is not ideal for anything related to health and well-being.

As such, there have emerged two classic forms of caregivers: the do-er versus project manager

There are two primary archetypes for caregivers in the United States. 

The "Do-er" performs daily hands-on activities such as shopping for groceries, helping the care recipient get dressed, or ensuring their loved one is taking medications properly. Historically, women have taken on this role. Since the Do-er's role requires in-person presence, they must take time off from work, which leads to absenteeism. Over time, the Do-er's work productivity lowers, which often leads to them quitting or losing their jobs. If Do-ers are unable to keep their insurance, they become financially strapped. As a result, Do-ers are presented with increasingly complex options for treatment with increasingly tricky side effects to complicate matters more. Despite never receiving medical training, clinicians are asking more and more women to take on medical tasks traditionally reserved for nurses ranging from managing incontinence to performing wound care.

The second caregiver persona is the "Project Manager." This individual, often one of the men in the family, handles the administrative burden such as contacting the insurance company, making home modifications, and identifying ways to keep aging parents out of the hospital. While the Project Manager works full-time, he experiences presenteeism, meaning he shows up at work but is not truly present. Juggling his Project Manager caregiver responsibilities at home in addition to professional demands causes distractions, irritation, and poor work performance. 

The mental, emotional, and physical suffering of caregivers

Although caregiving is a labor of love, under the current paradigm, the weight of these responsibilities takes a toll both mentally and physically. Caregivers tend to show higher levels of depression compared to their non-caregiving peers. Estimates indicate that 40 - 70% of caregivers show symptoms of clinical depression. Of the clinically depressed caregivers, 25 - 50% meet the diagnostic criteria for major depression. Caregivers also suffer higher levels of stress, emotional strain, and frustration than non-caregivers. Those who experience chronic stress are at greater risk of cognitive decline. 

Caregivers also encounter increased rates of physical health decline. Caregivers tend to experience higher rates of physical ailments such as headaches and aching and an increased likelihood of developing a severe illness. Caregivers also reported chronic conditions (e.g., increased blood pressure, heart disease, diabetes) at approximately twice the rate of non-caregivers (45% versus 24%, respectively). 

Lastly, Caregivers fail to engage in preventative care due to insufficient time and energy. For example, 72% of caregivers reported they did not visit the doctor as often as they should have, and 55% stated they missed doctor appointments. This decreased level of self-care leads to poor behavioral habits like unhealthy diets and minimal exercise compared to before these individuals assumed their caregiver roles. 

Ultimately, the combination of prolonged stress, physical demands, and a lower level of preventative care serve as increased risk factors for mortality. 

Looking ahead 

The need to address caregiver challenges is more pressing than ever. We'll dive into innovative solutions and health tech companies transforming the caregiver experience in our subsequent post.

About the Author

Dana Sun is a Senior Associate at OCA Ventures, a Chicago-based venture capital firm that invests in Seed and Series A enterprise tech, fintech, and healthcare companies across the US. At OCA, Dana focuses on investments in digital health. In her spare time, she enjoys playing tennis, juggling, and improv acting.