2019 In Focus: Insights and Services for Patients and Their Caregivers
By Krista Zodet, President, The HealthWell Foundation
As the founding sponsor of Real World Health Care, The HealthWell Foundation is honored to have a forum in which to shine a spotlight on the organizations making a positive impact on patient communities. We understand the physical, emotional and financial devastation involved in having a chronic or life-altering illness. We also understand how such illnesses can impact a patient’s loved ones, some of whom shoulder significant responsibilities and face daunting challenges in their roles as caretakers.
Throughout 2019, Real World Health Care will explore the special needs of friend-and-family caregivers, particularly those caring for patients with heart failure, cancer, secondary progressive multiple sclerosis, and migraines. We’ll highlight caregiver services from leading patient advocacy organizations and will seek to share advice with those who may be struggling with the many issues that can arise when one is a caregiver.
According to the Caregiver Action Network, more than 90 million Americans care for loved ones with chronic conditions, disabilities, disease or the frailties of old age. A 2015 study from the National Alliance for Caregiving and AARP paints a picture of the family caregiver in America:
- The “typical” family caregiver is a 49-year-old woman who takes care of her 69-year-old relative.
- Sixty percent of caregivers are female.
- Caregivers who provide unpaid care for at least 21 hours a week have been doing so for an average of five and a half years and expect to continue caregiving for another five years. Nearly half of these caregivers report high emotional stress.
- A third of caregivers have a full-time job, while a quarter work part time.
When announcing the study results, an AARP spokesperson noted, “We’re facing a caregiving cliff. By mid-century there will be only three family caregivers available for each person requiring care. That means, to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are underserved by the current long-term services and support system.”
NASH: A Growing Public Health Burden
During 2019, Real World Health Care also will focus on another underserved group: patients with Non-Alcoholic SteatoHepatitis (NASH). The most severe form of non-alcoholic fatty liver disease, NASH is a growing concern in the medical community because of its potential consequences for patients and its high prevalence in the population.
According to the NASH Education Program, NASH is a chronic, yet silent disease, which means that most patients live with it for several years without experiencing any symptoms. It can progress to more serious disease stages, such as advanced fibrosis, cirrhosis, liver failure or liver cancer.
While there currently is no approved therapy for patients, the scientific community is working diligently to find safe, effective treatments for the disease. We’ll be profiling NASH research priorities throughout the year, along with support services available to patients.
I invite you to follow Real World Health Care as we cover these topics in 2019. Click the Subscribe button on the right side of this page to be notified when new posts publish. You can also follow us on Twitter @RWHCblog.
If you are working with an organization that supports either NASH patients, or caregivers of patients with heart failure, cancer, secondary progressive multiple sclerosis, or migraines, let us know. We would be delighted to share your story with our subscribers. Contact us today.