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I attended a Health Affairs briefing for its April issue entitled "The Long Arm of Alzheimer's Disease." It was eye opening.
Many participants discussed a cure for the disease, but some presenters clearly understood that a cure could be a long time away--living with the disease is the bigger issue. When we look at people living with the disease, it's not just about patient care, but also their direct caregivers and other family members. It calls for new and perhaps unconventional partnerships.
For example, Laurie Ryan, the program director of Alzheimer's Disease Clinical Trials, National Institute of Aging, National Institutes of Health, discussed clinical trial recruitment and the need to find people who are "younger" and not manifesting the disease.
By now you have probably read about my saga.
Part of settling mom into her new residence was arranging for her first visit with a new primary care physician. Here is a little bit about how it went: The physician looked over her records before coming into the room. At 92, mom has a litany of ailments and medications, but using a walker has been her only compromise in recent years. When the physician entered, he quickly dispensed with the clinical aspects of her care.
This headline is not for a job listing. But it should be one you seriously consider.
I and a number of colleagues--from fellow Hospital Impact blogger Anthony Cirillo and first named Chief Experience Officer (CXO) Bridget Duffy, M.D.--continue to stress the importance of having a senior experience leader.
Early investigations at The Beryl Institute showed that organizations possessing a focused senior experience leader tended to outperform others on standard experience surveys. More so, our benchmarking research and surveys from other organizations reinforce that patient experience remains a top priority for healthcare leaders.
This month's blog post extends from both my January and February posts. In January, I shared how short-sighted financial decisions hurt patient experience.
In February, I discussed my new role as primary caregiver to my mom, suggesting that instead of focusing on patient experience, we should look at the human experience.
One comment on the January post serves as a good segue for the rest of this piece.
"Health and wellness, just as death and dying, affect all of us. Clinicians and administrators share in the wins and defeats in healthcare. As nurses, we need to be in the mix, collaborating with various stakeholders, while holding the hand of another human being to ease their suffering."
Since last month's blog post, things only worsened. My sister, whose experience of care I wrote about, passed away Jan. 15, less than a month after her cancer diagnosis.
In some ways it was like two people died. My mother not only lost her daughter but also now faces the reality that after a decade of living with her daughter in Florida, she has to move to North Carolina. My wife and I spent our time in Florida grieving for my sister while starting to pack up mom for a move to an independent living residence not far from us.
I work in both the hospital and the long-term care/aging space. And I know a fair amount of what it takes to be a family caregiver--Heck, Forbes cited me in an article about turning caregiving from a burden into an opportunity.
Well, I thought I knew.
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