It is hard not to find yourself as just a number, a number in a database, a number on someone’s list somewhere. Social Security. HICN. FICO. TIN. IP Address. Mobile phone. Like accountants driven mad, we work to balance these individual ledgers, make sure all of our numbers add up, trying to identify something in ourselves that feels off, a narrative lost. Like with most things, we are both the cause and effect of this uneasy feeling, each of us generating more lists and databases in our individual daily motions, pushing numbers from our ledger to theirs. An email returned. An exam slot scheduled. A reimbursement provided. Maybe this is the cost of our networked age, our lives now built around endless combinations of zeros and ones interacting with one another, digital HeLa cells endlessly reproducing on petri dish.
Explore the patient’s life history
Nowhere is this struggle to be more than just a number more raw than in those whose personal narratives are stolen, ransomed by nefarious culprits of brain chemistry and genetics. For the 44 million people world-wide who have Alzheimer’s or a related dementia, their interactions with the health system present a bewildering set of challenges for them and their family caregivers to navigate in order to receive effective care in the actute, outpatient, or long-term care setting. In many of those settings, staffing decisions, workflow, and patient load leave little opportunity for healthcare providers to get to know the person behind the disease’s symptoms, in spite of the fact that research indicates that long-term care patients who have care providers that are familiar with their life histories see decreases in aggressive behaviors and increases in the quality of care they receive.
For Jay Newton-Small, a former reporter for Time Magazine, the 20-page admission questionnaire coupled with her father’s fading memory and agitated behavior was going to make it more difficult for the caregivers at the care facility she moved him into back in 2013 to know more about the man he was before he was their patient.
Share the personal narrative with caregivers
As she describes in a December 2016 Washington Post article, Newton-Small put her writing capabilities to work and wrote up her father’s story, including his role as a part-time driver for Winston Churchill. With a better understanding of his life experiences, the care providers of Newton-Small’s father gained insights into both trigger points that could potentially upset him and references that could help to soothe him. Newton-Small describes how this shared narrative “completely transformed his care.” Since this experience, she left her reporting job and now runs an organization focused on crafting these personal narratives for other patients suffering from Alzheimer’s and related dementia.
Recognize the role of the family caregiver
The family caregiver is another key resource in better understanding Alzheimer patients’ experiences and its impact on their satisfaction with the care they are receiving. Those caregivers, often managing jobs, kids and their loved one’s personal health records (often from spreadsheets), hold important insights into their loved one’s experiences, and their own satisfaction with the care their love one receives must be taken into consideration when designing positive user experiences for these patients and their families.
Create Value for Caregivers from Health IT
In a May 2016 STEPS to Value episode, MaryAnne Sterling, co-founder of Connected Health Resources and family caregiver for three parents suffering from Alzheimer’s disease, highlighted how her own byzantine experience trying to ensure her parents were receiving the best care that they could.
I got involved with health policy and health IT because of my caregiving situation and my frustrations with the healthcare system. As a family caregiver, I struggled to hold down a job and fulfill the many roles I was tasked with, including care and services coordinator, medical decision maker and records keeper, insurance expert, social services liaison, and care transition team. And I faced a healthcare system that was ill prepared to deal with chronically ill seniors, especially those with dementia, and a healthcare system that viewed me as a pushy family member instead of someone who had important information to share with them.
The velocity of our lives today makes it so easy to ignore our common humanity. The velocity of care demands on healthcare providers no doubt makes it easier for them to begin to view patients as items on a never-diminishing task list. As the healthcare industry forges ahead with value-based care reimbursement models, understanding patients’ experiences and leveraging that knowledge to support their care is an experience most healthcare providers can ill afford to ignore anymore.