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Putting Family Caregivers on the Map

Tuesday, March 06, 2018
Geri Lynn Baumblatt MA

Geri Lynn Baumblatt MA

Here’s question: when a patient comes in for an appointment, a test, procedure, to the ED, or is diagnosed with a new condition — how many patients are in the room?
If a family caregiver or care partner came with them, there’s probably at least 2. We now know that informal caregivers don’t just have problems like poor sleep and depression, but are at risk for a large range of health issues: injuries, social isolation, substance abuse, strokes, heart attacks, chronic conditions, and increased frailty. They often skip their own medical appointments, stop eating well, or getting regular exercise, and they’re often stressed. Studies show that years of caregiving stress can impact their immune systems for up to 3 years after caregiving ends,1 take many years off their life,2 with a number of caregivers pre-deceasing the person they care for.
The more I think about it - because we can know when caregiving begins or escalates, it’s a discrete moment in time when we can both give the caregiver the support and resources they need to prevent serious health issues and help ensure patients get good care and support at home. 
Who me?
Unfortunately, people often don’t self-identify as family caregivers. And they don’t ask for help, because they don’t realize how their life is about to change. I work in healthcare, and it took me a few years to recognize that I was also a caregiver for my dad — let alone that it was having an impact on my health and well being.
How might we better understand who cares for the patient, and who cares for the caregivers?
Map the Caregiver Ecosystem
Talking with people is helpful, but the Atlas of Caregiving found that when you have people draw their caregiving situation, it adds dimension and details they often haven’t thought about. This can reveals surprising insights — and it’s a way to introduce the topic and help people identify as a “caregiver.” It can help normalize it. After all, people often assume the chaos they experience with caregiving is unique to their family.
This quick CareMap process creates a visual and for them and an artifact to share with the healthcare team that diagrams their ecosystem:

•   Do they live with the patient, nearby, or do they caregiver from a distance?
•   What does their support network look like?
•   What’s their relationship to the medical caregivers?
•   Are there others in their network who aren’t being leveraged and could help provide support?
CareMaps can be done with paper and pencil or with a new, free desktop app. And they provide surprising insights. A CareMap for a woman who had been caring for her husband for many months revealed she was also caring for a disabled child at home. The care team had no idea, and realized when they were asking her to bring him for appointments or other tasks, they were creating other challenges.
CareMaps are a snapshot in time.
Have people update their CareMap over time. This can also provide valuable insights. I’ve spoken about my own distance caregiving experiences for many years and only after drawing my own CareMap did I realize that my mom’s best friend (who is a fierce advocate for her locally and often gives her rides, etc.) usually goes away for the winter. But we didn’t recognize, let alone plan for this.
I also realized my mom, who is in her 80’s, is a key caregiver for many of her friends. So when she’s out of commission, it’s nontrivial for many other families who rely on her to look in on their parents or aunts in her senior residence. But I also hadn’t thought about how much of her identity and sense of worth comes from the care she gives.
Watch One, Do One…
A couple short videos can quickly walk you through how to create a CareMap. Do one, and see what you learn. Then try it with the informal caregivers you work with. 
Catch up with Geri
April 9-10 at the Lown Conference in DC
April 17:
•   Catch her in a panel on family caregivers and care transitions with MaryAnne Sterling, Danny vanLeeuwen, and Amy Cain at the Beryl Conference in Chicago.
•   Also on April 17: join Geri, MaryAnne and Danny for the Chicago Participatory Medicine Reception in the Living Room at the Chicago Hyatt.
1.      Glaser, J. & Glaser, R."Chronic stress and age-related increases in the proinflammatory cytokine IL-6.” Proceedings of the National Academy of Sciences, June 30, 2003.
2.      Epel, E.S. et al, From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49.

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Tags: communication, family caregiver, experience, patient
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