The Silent Crisis

Cynthia A Fleece, RN, MBA, ACM-RN, CHCQM-CM
Member, ACPA Advisory Board

Again, I am stuck behind my computer, hands poised on the keyboard hoping that one of the numerous crises’ affecting healthcare today sparks enough interest to author an article to an amazing group of Physician Advisors and Nurses. I am usually trying desperately to channel Dr Hirsch’s skills. This time the inspiration for the article came during an event I was attending. A gentleman across the table from me at this event was trying to eat his dinner, involuntary muscle contractions resulted in uncontrolled shaking in both hands making even getting a piece of lettuce to his mouth difficult. His speech stammered; I recognized the symptoms. 

I was then reminded of the extended length of stay meetings within my hospital that referred to patients with an extended length of stay as “complex patients” with a chronic illness that had caused dementia which made discharging complicated. Parkinson’s is one of these diagnoses, however Alzheimer’s is the most common. This silent crisis affecting a third of our patients is still something rarely discussed and like cancer there has been wonderful progress in treatment but as of today no cure.  

In a Healthcare IT Newsletter, “Social Determinants of Health and the $1.7 Trillion Opportunity to Slash Spending”, dated October 9, 2017, the author Tom Sullivan writes, “it is estimated that by 2050 America will have 83.7 million seniors and that three (3) in four (4) citizens over 65 will have multiple chronic conditions”. The article said that in 2017 the estimated cost of providing care to patients with Alzheimer’s disease was $236 billion and was estimated to grow to $1.4 trillion by 2050. 

My question then becomes what is driving the cost; treatment of the disease or treatment of dementia caused by the disease? For those of you that know me, finding an answer to this question became my mission. 

According to Dr Jason Karlawish, who is the author of, “The Problem of Alzheimer’s”, and who is still practicing at Penn Memory Center in Pennsylvania, “the difference between Alzheimer’s disease and dementia is that dementia describes disabling cognitive impairments. Alzheimer’s disease is the most common cause of those disabling cognitive impairments.” There are however other diseases that cause dementia, some of those include Lewy body disease, frontotemporal lobar degeneration, Parkinson’s disease, Huntington’s disease, HIV infection (if not treated), and Syphilis (if left untreated). It made sense regarding the estimated skyrocketing costs associated with caring for patients who develop dementia because of their disease state.    

A ChenMed blog dated March 18, 2022 regarding physician shortages states:  

“The U.S. has only 7,300 geriatricians, yielding roughly 1.07 geriatricians for every 10,000 geriatric patients. To put this into perspective, the American Geriatrics Society (AGS) estimates that one geriatrician can care for about 700 patients.” 

This is adding up to what we are experiencing in our healthcare facilities around dementia regarding diagnosing, staging and education. I don’t want this to look like I am pointing a finger at physicians, I am speaking to all healthcare professionals. There are several stages to these diseases and when treating and assessing patients with Alzheimer’s we must ensure we are including the caregivers familiar with the patient. Family meetings with the patient and the caregiver who can provide a history and share some of their observations. Assessments should include both cognitive and functional assessments in determining the future needs of the patient for the caregiver. 

I often hear of nurses’ asking the attending physician for an order for psychiatric evaluation consult for cognition and when I see this on a geriatric patient I will usually look for documentation in the psychiatric evaluation that there was a conversation with the caregiver, especially if the patient was admitted from home. The attending or consultant documentation should include questions around, Who pays the bills? What medication do you take and do you know what it is for? Do you have a computer at home? And do you drive or take other transportation? These are the earliest cognitive problems associated with the disease. To use the patient’s behavior as a way to measure cognitive function is unrealistic as this often changes daily in all stages of dementia.  I remember my own experience with my father. Last year when I took him to his favorite restaurant and they gave him the menu, he looked at it and said, “I’ll have eggs.” On that day, that was the only word that made sense to him, unfortunately this was a polish restaurant.   

Dementia can also result from social determinants like obesity, untreated hypertension, lack of proper sleep, often seen with homelessness, and poorly controlled diabetes.  

Patients living with dementia as well as other chronic diseases require specialized assessments and testing, discharge planning, and understanding that the patient in front of you is struggling to understand who they are in the discussion. 

There are a variety of problems related to discharge planning, however most include the lack of long term care facilities, especially for the patients with aggressive behaviors.   

The political lobbying for long term care services and facilities started in 1980 and was supported by caregivers like Hilda Pridgeon, who was one of the founders of the Alzheimer’s Association. These efforts stood still until 2010 when President Obama signed the National Alzheimer’s Project Act. The funding for these efforts still gets little traction. Meanwhile the current long term care environment either lacks the capacity to care for patients living with dementia or they lack the trained and educated staff that have experience working with these patients and their caregivers. Caregivers who provide care for these patients at home often hit a time when they can no longer care for the patient safely at home. The patient comes into the hospital with no real medical needs other than a need for a safe environment that will allow the patient to remain mobile but under observed care in a safe environment. The caregiver is also a patient, frustrated and burned out, seeking options and often not understanding or able to meet the financial responsibilities for placing the patient into a long term facility that can meet the patient’s cognitive needs.  

Steven Zauderer posted facts regarding long term care facilities dated 02/02/2023: there are 65,600 regulated long term facilities in the United States, up to 30 million Americans will require long term care in 2050, 70% of seniors will need some long-term care, which includes assistance with everyday activities like washing themselves, dressing up, and general upkeep of hygiene. This is often from a physical injury or illness, or an issue involving aging and 60% of people and families can't pay for the expenses that nursing services require for them to house the elderly. 

Now is the time to develop protocols, education and structured in-person discharge planning that includes the caregiver’s needs and safe environments for the patient’s long term placement. We need to contact our government officials and lobby for more regulated facilities, outpatient assistance, regulations and required education for staff and therapists in long term facilities, and safe contained environments. Until we can gain access to facilities like this, patients will continue to come into the hospital environment, challenge our discharge planners and utilize unnecessary resources that could be provided outside the walls of the hospital. When politicians say we can’t afford to fund projects like this, hospital administration should reply we already are. 

Cynthia A Fleece is the Director of Utilization Review and Denials Management for the BayCare Health System in Clearwater, Florida.