Retired Supreme Court justice Sandra Day O’Connor recently disclosed that she has now been diagnosed with probable Alzheimer’s disease. At 65, she had a 1 in 10 chance of developing dementia. At 85, her odds increased to 1 in 3. Now we acknowledge with great sadness that the 88-year-old’s keen mind will fade away and that she, too, will succumb to the disease, just as her husband did.
How does this affect those of us who are reaching that magical Medicare age of 65? Should we pretend that dementia can’t happen to us and hope we beat the odds? Knowing our risk for developing a disease gives us the opportunity to plan for our future and to advocate for programs that will enhance services for those affected by this devastating disease.
Traditional Medicare is designed to provide medical coverage for participants who are seeking treatments for various diseases. If you develop pneumonia and are admitted to the hospital, everything is covered after the initial copayment. If you need rehabilitation, the first 20 days are generally covered, with an additional 80 days covered at a reduced rate provided you are improving and able to participate in therapy. Once you are not improving, you are either discharged home or become a resident of a nursing home under private pay for thousands a month. If you don’t have the resources to pay for a nursing home, you can forfeit personal assets and apply for a Medicaid program.
Fast forward to the 1 in 10 people older than 65 with Alzheimer’s disease or one of the many other dementia syndromes. They have a progressive, irreversible, non-curable disease that will continue to worsen despite the best medical care. As they decline, their debility increases, and they require an ever-increasing amount of supervision and physical assistance.
Today, the crisis in health care is how to care for the estimated 5.7 million Americans with Alzheimer’s. Unpaid family members already frequently provide a total of 18 billion hours of care each year, according to the Alzheimer’s Association. The crisis for tomorrow is how to take care of the projected 14 million Americans older than 65 who will develop the disease by 2050.
Our health-care system is grossly unprepared to provide medical care for this cohort of patients. We spend billions of dollars cycling such patients in and out of hospitals and rehabilitation facilities, only to have them return every few months for yet another round of the same. It’s what we know how to do instead of tailoring care specifically for patients with dementia, and many have expressed a desire for something different that enables them to stay at home and receive non-invasive treatments. Unfortunately, many of these patients have not been given the formal diagnosis of Alzheimer’s or another form of dementia.
It’s estimated that an early diagnosis of dementia could save $7.9 trillion in medical costs over multiple years and provide care tailored to the needs of the patient. This would include access to medical trials, medications to slow the disease progression, active management of comorbid conditions and the opportunity to engage in goal planning for the future. Why, then, do we not diagnose people early? We know that it is best to diagnose any disease at the beginning of symptoms, but for some reason, dementia carries a stigma that prevents most of us from asking and confirming the diagnosis.
Many famous people and their families have publicly acknowledged a dementia diagnosis in an attempt to decrease the stigma associated with the disease: Pat Summit, women’s basketball coach; Glen Campbell, country music star; Rosa Parks; Ronald Reagan; and Margaret Thatcher, to name just a few. As a health-care provider, I challenge all of us who are involved in diagnosing and treating patients to follow the lead of the many patients who have accepted their disease with grace. Let’s erase the fear surrounding this disease and lead our patients to a timely diagnosis. It’s a chance we can’t afford to miss.