When we talk about patient centricity and patient centered care, we often emphasize the importance of considering the patient perspective, their priorities and needs as articulated by the patients themselves. But what happens when people living with diseases or disabilities can’t or won’t openly articulate the realities of their day-to-day lives? What if it’s too hard to see where they might need help?
For more than 20% of adults age 50 and over half of those 85 and over, life is supported by a care partner most often a spouse or other relative, according to the AARP . These individuals spend about 24 hours each week caring for their loved ones either due to illness or disability.
According to the New York Times, most of them (61%) have another job . They are the life force that see, feel and hear just about everything related to someone’s care and we need to hear from them to understand what’s truly going on, and where we as pharma can support.
The importance of care partners
Take the story of Henry for example, a 53 year-old working professional living with prostate cancer. When we spoke with Henry, he was very confident about managing his condition. As Henry shared details with us he said, “I am very capable of figuring out treatment, doctor facilities, as well as resources for help I don’t have any healthcare needs.” But when we spoke with his daughter Sandy later that week, we heard a very different story.
As Sandy shared, “I had to conduct this interview at a friend’s house to tell you the real story about Henry. My dad hides everything, he cries in his room at night, he constantly asks me questions regarding his test results as he doesn’t understand them, and says it’s all in medical technical jargon, but don’t tell mom I don’t get it.”
Sometimes it’s fear or shame that might prevent people living with diseases from sharing their experiences. It’s highly personal, emotional, and might mean confronting potentially scary realities. What Henry shared with us is the reality he wanted to believe. He couldn’t cope with what was really in front of him.
There are many times where talking with patients and their care partners don’t give us enough of a sense of what’s really going on. Caregiving is hard. There is a growing body of evidence that shows that most caregivers are not well-prepared for their role, provide care with little or no support and even suffer from poor health themselves.
Mental, emotional and physical health problems arise from the strains of caring for loved ones with many caregivers reporting higher levels of stress, anxiety and depression. This was our experience with Betsy and her daughter Leslie.
Betsy is a young, vibrant 72-year-old who exercises, rigorous about healthy eating, takes her meds as prescribed and does cosmetic injectables “to look and feel good.” Betsy reported actively socializing with her community and shared that she “sometimes has some trouble remembering names” as a result of early cognitive impairment. Leslie, a young mother of two children and the primary caretaker for her mother, shared the same view and so she mainly focused on ensuring medications were filled and that her mother went to her doctor’s appointments.
When we toured Betsy’s home as part of an in-person ethnographic study we were shocked to discover no evidence of her medications. Upon further conversation with Leslie, we found medications that were prescribed to Betsy’s friend for depression hidden under a pile of dirty laundry.
Piles of dirty dishes and old magazines were stacked in Betsy’s bedroom. At the sight of this, Leslie broke down in tears. She later shared, “[my mother] has turned into a hermit and doesn’t see anyone socially…I’m young, have a family and can’t deal with all this. What my mother needs is a support community to get her back on track.”
Had we not gone the extra step of spending time with Leslie is Betsy’s home, we could not have uncovered the denial, fear, shame and stress the situation has cause both Leslie and her mother.
On a personal note from Lois:
“As caregiver myself and moderator, my life lessons helped me get my mom’s journey. When my mom was diagnosed with dementia during COVID (possibly due to the isolation with the enforced regulations at assisted living facility), I thought my empathy skills in moderating would help me with dealing with her anxiety, her fears and moment by moment differences in her reactions to everyday life. It was not easy. I found that meeting her where she was at each visit was critical to her well-being.
I poured over articles how to support dementia relative and wished the doctor could have helped me in the beginning. I needed to make some changes to my reactions to my mother’s changing needs and rushes of panic attacks. Empathy doesn’t come from only saying you understand but allowing their world to be their new reality and going with them down the path.
What mom needed was not only someone who was there for her, but a care partner who was informed about each of stage of her disease, what to expect, and potential solutions that varied so widely during our last days together. During her isolation with reality, I also felt it was a struggle to keep her happy and was deeply saddened of the pain she was going through and often times that pain went through my soul.
I have a deeper understanding now of the needs of caregivers and how they can truly help a loved one make the right medical decisions.
*Names have been changed to protect the anonymity of participants.