A Tale of 2 Daughters: Connecting the Dots for Family Caregivers
by Geri Lynn Baumblatt, MA, and MaryAnne Sterling (below)
November is National Family Caregivers Month. And on December 3rd the first National Caregiving Conference will be taking place in Chicago! Register to watch the free live stream or attend in Chicago. Check out the conference hub at: http://www.caregiving.com. Follow the action on Twitter at #NCC16.
Becoming a Care Partner
MaryAnne’s mom had multiple chronic conditions that resulted in numerous falls, many broken bones and frequent trips to the emergency room. Each care transition came with a stack of confusing paperwork but no clear delineation of next steps other than “follow up with your primary care doc” or “here is a list of nursing homes to choose from.” Longer hospital stays involved the “discharge planner” who was able to give cursory support in coordinating next steps in care. But she was overwhelmed by her caseload and not very accessible.
As her mom’s caregiver, MaryAnne was left to navigate the fragmented healthcare and social services systems as best she could, resulting in missed time from work, financial hardship and constant stress. Family caregivers are the front lines of healthcare and currently 90 million+ strong. They are often the “care transition team” for their loved ones, burdened by outdated care transition processes throughout the care continuum. This frequently results in return trips to the ER.
Hope on the horizon
The CARE Act, requiring the identification, notification and education of family caregivers of individuals who are hospitalized, has been passed in over 30 states. Identifying and training the care partner or family caregiver is essential. However, an important piece of this puzzle is missing -- connecting family caregivers with the support they need, both inside and outside of the healthcare system, to effectively manage the care of their loved one.
Family caregivers are often new to their role and don’t know where to find support and resources in their community. Connect them to people who can help. Social workers and care navigators can be critical allies in helping families navigate the complexities of care and make informed decisions about housing, transportation, insurance and other services, which frequently impact health outcomes.
A little time goes a long way
Small insights on how to navigate the system can be priceless. Beyond telling people how important it is to make and attend their follow-up appointment, if patients/caregivers know to mention they were just in the hospital and have a new diagnosis, like heart failure, they’re more likely to be scheduled in days or weeks instead of many weeks down the road.
Lists of resources or nursing homes can be as daunting as they are helpful. Sitting with people to help them know what questions to ask or factors to consider is a huge help. The first time Geri had to help find an LTAC for her father, she and her mom thought they were diligent and thoughtful: getting a tour of the facility, asking questions. But the LTAC was far from where they lived, putting strain on her mom and family. Her mom stayed too late one night, drove home tired, and almost became a patient herself. That extra distance was a factor they didn’t consider, because they didn’t have experience.
How do you engage family caregivers and care partners? Share your best practices.
MaryAnne Sterling was a caregiver and healthcare advocate for her parents for 20 years. She is a renowned speaker and educator on family caregiver issues, a role that evolved from her experience having multiple parents struggling with dementia. She is a fierce activist for healthcare transformation, family caregiver empowerment, and a cure for Alzheimer's disease.
Geri Lynn Baumblatt, MA, is the Executive Director of Patient Engagement at Emmi where she oversees the creation of multimedia patient engagement, education, shared decision-making, and behavior change Emmi programs and interactive phone calls. She hosts an annual October Health Literacy Month blog series for Engaging the Patient. She serves as an Editorial Board member for the Journal of Patient Experience. Emmi Solutions works with decision scientists, behavior change experts, patients, and clinicians; they draw on their research and experience to create content that helps patients engage in their care. Follow Geri on Twitter @GeriLynn.
Tuesday, November 29, 2016
Geri Lynn Baumblatt, MA, Executive Director of Patient Engagement, Emmi
Co-author: MaryAnne Sterling
Family caregivers are the front lines of healthcare and currently 90 million+ strong. Identifying and training the care partner or family caregiver is essential. However, an important piece of this puzzle is missing -- connecting family caregivers with the support they need both inside and outside of the healthcare system to effectively manage the care of their loved one. >>>
Tags: patient engagement, family caregiver