The Rising Toll of Caregiving

Factors including the aging American population, the increased prevalence of chronic health conditions, shorter hospital stays and preferences for receiving care at home are resulting in an increased degree of reliance on families to provide informal, unpaid care to family members1 with a range of disease conditions, including heart disease, stroke and heart diseases that co-occur with mental and behavioral disorders.

According to a 2018 American Heart Association Policy Statement, informal caregiving for patients with CVD adds an additional 11% of medical and productivity costs attributable to cardiovascular diseases.2 The report estimated that informal caregiving was $61 billion in 2015, which will increase to $128 billion in 2035. Including the cost of informal caregiving increases total CVD costs by 11% to $616 billion in 2015 and $1.2 trillion in 2035.

When considering mental health, an estimated 8.4 million adults provide unpaid assistance to individuals with emotional or mental health problems according to a 2015 report by National Alliance of Caregiving and AARP.3 The paper reported that nearly half of higherhour caregivers report high emotional distress. Furthermore, with an average household income of $45,700, informal caregivers also reported financial strain. Worryingly, 70% of employed caregivers had to modify their work conditions by reducing their hours, changing jobs, turning down a promotion, taking a leave of absence or even retiring early.

A recent study by Debra Lerner and colleagues addressed the topic for informal caregivers of individuals with schizophrenia and/or schizoaffective disorder and found substantial distress and lost workplace productivity in this population.4 In a four-week period, currently employed informal caregivers were limited at work between 20% of the time on average (in relation to performing physical job tasks) to almost 30% of the time on average, respectively, for time management and mental and interpersonal job task performance. On average, atwork productivity decreased by almost 8%. In the same period, almost two-thirds missed work due to informal caregiving responsibilities and the average productivity loss due to work absences was 15%.

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The practical implication of these findings for employers is that the rising burden of caregiving has a negative impact on workforce productivity and participation.

Flexible work arrangements and policies such as adequate sick leave and paid time off could allow employees to rest and recover from caregiving responsibilities to mitigate the adverse consequences of caring for family members with chronic conditions like mental health disorders, heart disease and stroke.


  1. Family Caregiver Alliance: National Center on Caregiving. (2009). Caregiving. Retrieved from
  2. Dunbar S. B., Khavjou O. A., Bakas T., Hunt G., Kirch R. A., Leib A. R., . . . Whitsel L. P. (2018). Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015 to 2035- A Policy Statement From the American Heart Association. Circulation. Retrieved from
  3. National Alliance for Caregiving, & AARP. (2015). Caregiving in the U.S. Retrieved from
  4. Lerner D., Chang H., Rogers W. H., Benson C., Lyson M. C., & Dixon L. B. (2018). Psychological Distress Among Caregivers of Individuals With a Diagnosis of Schizophrenia or Schizoaffective Disorder. Psychiatr Serv, 69(2), 169-178. doi:10.1176/