A patient of mine vanished the other night.
B. Smith, the well-known entertainment and lifestyle personality, had just come to my office for a consultation. In the year since her diagnosis of Alzheimer’s at a still-beautiful age 64, her family had clung to the words early stage, but after 90 minutes of geriatric assessment, it was clear to me that B.’s condition was considerably worse than anyone had thought. Despite the fact that her social personality appeared intact, her cognitive function was severely impaired. Her short-term memory was almost completely gone. She had no idea of the year or where she was, couldn’t draw a clock, couldn’t even subtract 2 from 10.
At the end of the visit, I indicated that while we would start her on some Alzheimer’s medicines, the “magic bullet” for her was care management, addressing the needs of the patient and the caregiver, her husband Dan Gasby. I recommended getting her an Alzheimer’s bracelet in case she got lost; basically never leaving her alone; and getting more hours of expert home care.
Afterward, according to the plan made before her visit, B. walked with family to 59th Street and Lexington and got on a jitney back home to Sag Harbor, the same way she came into NYC that morning. To the family, the original plan seemed simple enough, and safe. B. was to be alone on the bus, but her family told the driver to keep an eye on her, and to be sure B. got off at Sag Harbor, the second stop on the route. B. had no phone; she had lost it days before. She had identification, but in a small, easy-to-lose handbag.
She never got to Sag Harbor.
For the next 15 hours, as snow clouds gathered and temperatures dropped, B.’s frantic husband waited for some word. He assumed she’d gotten out at Southampton and wandered off — but where? Finally at about 2 pm the next day, an acquaintance recognized B — tired and disheveled — at a midtown diner. B hadn’t ridden the jitney out to the Hamptons at all. She’d gotten out at the last Manhattan stop — 40th street — and walked the streets all night.
This is not an unusual story for people with Alzheimer’s, a chronic, progressive, invariably fatal neurodegenerative disease. I’ve been fighting Alzheimer’s for over 35 years, both as a neuroscientist and as a physician specializing in geriatric medicine. At our foundation, the Alzheimer’s Drug Discovery Foundation, we are funding the development of new drugs that can alter the course of Alzheimer’s or prevent the disease. But while our funded researchers attempt to discover effective and safe treatments, we need to address the equally dire need for better clinical care.
The failures often begin in the doctor’s office where an addled patient and their caregiver first come for help.
Confronted by a patient with Alzheimer’s, physicians may prescribe currently available drugs that may allay symptoms like memory loss a bit, for a while. Few perform the simple cognitive tests to assess the patient’s cognitive function and stage of the illness. Assessment of the patient, and education and counseling of the caregiver, is time consuming, and doctors aren’t paid much to spend a lot of time with patients. Unfortunately, the lack of proper assessment and advanced care planning often dooms the patient and their family to a gauntlet of potentially preventable crises, from bathtub falls to malnutrition, costly (to the individual and the taxpayer) and avoidable hospitalizations, and disappearances like B.’s which could have ended in disaster.
Alzheimer’s is the fifth leading cause of death among the elderly in America today. More than five million people have it. Long-term care for Alzheimer’s can cost over $100,000 per year, mostly either paid out of pocket by families, or by taxpayers through Medicaid. As a nation, we spend over $200 billion a year on Alzheimer’s — more than heart disease and cancer. Yet in spite of these numbers and stories like B.’s, Alzheimer’s research is still grossly underfunded compared to the many billions of dollars we allocate to cancer and heart disease. Nevertheless, caring for patients and caregivers will likely remain key to the management of Alzheimer’s for a very long time, as is true for most chronic, incurable diseases of old age.
All of us — future patients, caregivers, policy makers and health care providers — should be pushing to right our priorities. The National Alzheimer’s Project Act is a good step in the right direction but much more needs to be done. Physicians and other providers need incentives for the time and effort required to provide quality and expert care for people with Alzheimer’s. Chronic care management and home care needs to be adequately reimbursed and available so that most patients can get long term care at home, preventing hospitalizations and other unnecessary costs. New models of coordinated team care for people with Alzheimer’s are needed that can address these multidisciplinary challenges. Until we actually change the system of care, families with Alzheimer’s will continue to struggle to find the care they need — and even well-known patients with considerable personal resources will be at risk to wander the streets of their city all night, scared and lost in the fog of this dreadful disease.
Howard Fillit, MD, is the founding executive director and chief science officer of the Alzheimer’s Drug Discovery Foundation, and a clinical professor of geriatric medicine and neuroscience at the Icahn School of Medicine at Mount Sinai.