A few years ago, I attended a legislative briefing on Capitol Hill in Washington D.C. They were discussing dementia and Alzheimer’s when one of the panelists said “If you’ve seen one case of Alzheimer’s you’ve seen one case of Alzheimer’s.” That statement has stayed with me, it has continued to remind me that Alzheimer’s is a complicated and very individual disease. This complication is one of the main reasons that discoveries of medicines to cure or even slow down the progression of dementia or memory loss have been elusive. It has also made the care of dementia patients complicated.
While it is alleged that there are 6 degrees of separation between us and Kevin Bacon, I think that, for most of us, there is only one degree of separation between us and a relative or close friend who has some form of dementia. All of us have had conversations with someone who has dementia and realized the devastation of this cruel disease. I’m sure we have also had conversations with people who are the caregivers of dementia patients. It is those people and institutions that I want to focus on.
The challenge of caring for dementia and memory loss patients takes a skillful, patient, loving person with the support of doctors and facilities that offers individually focused and dignity centered care. This type of individual care requires resources that, unfortunately, are out of reach of some of the most vulnerable around us. It is crucial that we find a way to open up this level of care to everyone.
The Healthcare Leadership Council (HLC), the supporting organization for Seniors Speak Out, is a non-profit organization that is a coalition of chief executives from all disciplines within American healthcare. In the description of their organization they state, “This coalition works together to jointly develop policies, plans, and programs to achieve their vision of a 21st century healthcare system that makes affordable high-quality care accessible to all Americans.” The last part of their description indicates how committed they are to ensure all Americans has access to the best care available.
To spotlight this commitment HLC created the Redefining American Healthcare Award, an award that aims to “draw attention to existing initiatives that effectively address and improve health inequities.” On February 3rd, HLC gave the Redefining American Healthcare Award to the Center for Comprehensive Care and Research on Memory Disorders at the University of Chicago Medicine. Now that’s a pretty long name but the important part of the organization is the people. It is staffed by a committed team of highly trained neurologists, geriatricians, psychiatrists, neuropsychologists, social workers, and specialized nurses to ensure seamless, thorough care for dementia and memory loss patients. Evaluations are tailored to each patient, and the Center provides ongoing support and care throughout the course of the disease.
Dr. James Mastrianni and Tessa Garcia McEwen accepted the award saying, “We are honored to receive this recognition, as it reinforces our efforts to raise awareness and provide individualized and specialized care to the most vulnerable and marginalized populations, including those with the greatest barriers to healthcare, the younger-onset Alzheimer’s Disease population, and those with rare neurological conditions.”
Debbie Witchey, executive vice president and chief operating officer of the Healthcare Leadership Council, said, “This team has done a wonderful job of recognizing the unique needs of its patient population and addressing the bigger picture, which includes their home lives and caregivers.” I’ve spotlighted this award in the hopes that I can bring some focus as to where our time and resources should be applied as we consider the tsunami of dementia patients this country faces in the future.
There has been much discussion about a recently approved Alzheimer’s drug, talk about how accessible it will be and how good it will perform. What has been lost is the fact that we still face the huge responsibility of caring for the huge number of dementia patients that are diagnosed each year. Consider this, almost 6 million Americans have Alzheimer’s today and it is projected that by 2050 there will be almost 14 million patients suffering from Alzheimer’s. The cost of treating Alzheimer’s is breathtaking, it is estimated that by 2050 Alzheimer’s will cost $1.1 trillion a year. We need to focus on how we will take care of all these patients and do it so we don’t pass over the marginalized and most vulnerable. The Memory Center in Chicago is a shining example of how to efficiently treat those with dementia and memory loss while maintaining the individual focus needed to support both the patient and their caregivers.
We are expending a great deal of time and money on making sure we are ready for the next pandemic, if and when it happens. We should not ignore the fact that we already know the huge number of Alzheimer’s patients and we need to use places like the Memory Care Center as models to find efficient ways to get the care to all Americans.
Finally, a moonshot type research project to find a way to blunt or even cure Alzheimer’s would be a financially wise decision to say nothing of the human impact it would have on all of us. It is estimated if we just found a way to diagnose Alzheimer’s earlier, we could save 15% of the cost. In 2050 that would be $165 billion saved in one year. Whatever we do, we need to encourage our government to ensure that their regulations and decisions promote the research needed to find a cure or to at least slow the onslaught of Alzheimer’s.