Patients with advanced dementia are almost twice as likely to be hospitalized, often with preventable or treatable illnesses, two new papers suggest. As part of an effort by the federal government to lower costs, particularly in the final stages of Alzheimer disease (AD), the AAN has been asked to suggest ways to educate caretakers and improve medical care for this challenging and growing group of patients.
Aggregate health care expenditures for dementia could exceed $183 billion in 2011 and are projected to reach $1.1 trillion by 2050, according to the Alzheimer's Association. Those in the late stages of the disease often incur the highest costs to Medicare and Medicaid because of hospitalization and nursing home expenses.
A 25-year overview of trends in research and care of patients with advanced dementia in the Jan. 3 Annals of Internal Medicine — including data on hospitalization rates as well as causes for hospice care — and a Jan. 11 paper in the Journal of the American Medical Association (JAMA) found that patients diagnosed with dementia were most often hospitalized with infections, pain, and eating disorders. [For more on these studies, see “An Overview of Care: Data on Increased Costs for Hospitalization.”] But some of those costs could be lowered with early-intervention care, neurologists told Neurology Today.
They suggested, among other ideas, that stronger care teams be established, end-of-life management discussions occur in the early stages of dementia, and that more neurology care be incorporated in the final stages of the disease.
“The most important thing is to develop better outpatient management,” said Charles DeCarli, MD, professor of neurology at the University of California, Davis, who is also chair of the AAN Section on Geriatric Neurology. “In Europe, they have dementia care centers that specialize in the behavioral, cognitive and medical aspects of the disease, and patients get support at home.
“If patients come into the hospital here, instead of going through the ER, we should offer dementia specific care from the beginning, not place them on a standard ward.”
Across the board, doctors said discussing end-of-life issues was paramount, particularly in the early stage of the disease, but they said that discussion was often overlooked.
“At the diagnosis, often the focus is on which pill will help alleviate the symptoms,” said Susan L. Mitchell, MD, MPH, professor of medicine and associate director of research training for the gerontology program at Harvard Medical School.
Dr. Mitchell, who was the lead author of the Annals of Internal Medicine overview, said it was important that neurologists and other care providers start introducing, early on, realistic expectations about the course of the disease.
Victor Henderson, MD, professor of health research and policy as well as professor of neurology and neurological science at Stanford University School of Medicine, suggested that neurologists work more closely with the hospice system to address the needs of dementia patients. In 2009, only 11 percent of hospice recipients were diagnosed with dementia, he said, compared with 40 percent diagnosed with cancer.
The problem was a combination of finding better predictors of mortality for dementia patients and addressing communication issues. Hospice care is typically limited to the last six months of life, but late-stage dementia may extend for years, he said.
“We need improvements that encompass a pretty broad field,” Dr. Henderson said. “Better access to interventions that make a difference, better palliative care, and better recognition of common medical illness in this patient population before it becomes severe.
“It's a complicated set of issues to deal with, and it requires a lot of creativity,” he said.
But it is an issue that the AAN has been tasked with addressing. Last February, Richard J. Gilfillan, MD, director of the Centers for Medicare and Medicaid (CMS) Innovation Center — or CMI — invited the AAN to submit pilot proposals as part of its nationwide initiative to address these cost and quality concerns. The CMI, a byproduct of the Obama health reform initiative and the Affordable Care Act, aims to encourage programs to provide more cost-effective care through Medicare, Medicaid, and the Children's Health Insurance Program. [For more information about the CMI, visit http://innovations.cms.gov/.]
Amanda Becker, the AAN associate director of medical economics, said that AAN staff and experts in AD jointly developed a proposal, which was approved by the AAN board of trustees and presented to Dr. Gilfillan of the CMI in a meeting on Jan. 31.
The AAN proposal encourages, among other ideas, the creation of medical and non-medical clinical provider teams, creates a pay-for-service care model to reimburse doctors for non-face-to-face care, and develops financial incentives to reward cognitive care and extra time spent with patients and their caregivers.
The AAN proposed that the care team include a neurologist, a primary care doctor, neuropsychologist, case manager, social worker, dietician, and a pharmacist. There would be a per-member-per-month payment as well as payments for phone evaluations, medical team meetings, and prolonged office visits.
One of the overarching goals of the proposal is to reduce the rate of hospital admissions and readmissions for AD patients. Citing a 2004 report from the Journal of the American Geriatrics Society, the proposal noted that increased hospitalization rates in dementia patients translate into 3.3 times greater total Medicare expenditures than in non-dementia patients. The main reasons for hospitalization among AD patients are syncope/falls (26 percent), ischemic heart disease (17 percent), and gastrointestinal disease (9 percent), according to a 2010 report in the Journal of the American Geriatrics Society.
The proposal acknowledged that cost savings would not necessarily emanate directly from the medical team-based delivery model. But, it noted, that comprehensive end-of-life planning — for example, encouraging patients and their caregivers to develop advance directives — as well as enhanced support and training for caregivers could result in fewer hospitalizations, unnecessary medical interventions at end of life, and nursing home placements.
The proposal cited studies that show that educating caregivers about nutrition could prevent weight loss in AD patients, for example, and that family meetings run by professionals with an advan`ced degree in nursing, social work, or psychology could reduce depressive symptoms in caregivers and postpone a decision to place a patient in a nursing institution.
“Neurologists don't need to be the team leader, or take over as primary caretaker,” said Becker of the AAN. “The goal is to better coordinate care, to have a team in place who is communicating with the patient and other providers to make sure someone has a handle on what's going on with the patient and can intervene, whether it's correcting a medication or providing education on falls.”
Amy E. Sanders, MD, assistant professor of neurology at Albert Einstein College of Medicine, who worked on the proposal, noted that the care coordination model has been proposed before. “What's different is the emphasis our proposal gives to caregiver education and support,” Dr. Sanders said. “The cumulative stress experienced by caregivers impairs their own health.”
“If caregivers are better informed and supported in their role, they may be able to make different decisions about the need to call an ambulance for acute hospital admissions. They may be able to keep their loved one at home longer, or permanently, and they'll have a better quality of life.”
Howard Fillit, MD, executive director of the Alzheimer's Drug Discovery Foundation in New York, said the proposal sounded comprehensive and well planned. The emphasis on end-of-life planning was critical to increased use of hospice care, he said, and ultimately helpful to late-stage cost savings. The challenge will be to see if the managed care approach will improve quality of care while also reducing unnecessary or avoidable costs.
“When you have an 80-year-old woman trying to care for her 85-year-old husband with Alzheimer's, and she's all alone, that five-page educational brochure will not be nearly enough,” he said. “She needs help — a home health care aide and a doctor she can call. The proposal incorporates the reorganization of care by providing a team of providers.”
Dr. DeCarli, of UC-Davis, said he struggles with the current system that is based on episodes of the disease, instead of looking at the overall picture. Creating a long-term care plan and developing a dementia-specific care team could help prevent unneeded tests and costs, as well as unneeded stress on the patient.
“We're not going to be able to prevent the dementia,” he said. “But we need to recognize the benchmarks. Often, I see patients who have been worked up multiple times for dizziness — they've had several MRIs — and it's their dementia.
“That's when we can connect the families to more and more support as they need it.”
AN OVERVIEW OF CARE: DATA ON INCREASED COSTS FOR HOSPITALIZATION
The Annals of Internal Medicine overview cited, among other data, statistics from a 2009 paper in the New England Journal of Medicine that followed 323 nursing home residents with advanced dementia for 18 months. Hospitalizations accounted for 30 percent of Medicare expenditures for these patients, and 16 percent of people with dementia eventually died in hospitals. The researchers found that 86 percent developed an eating problem, 41 percent had pneumonia, and 51 percent had a febrile seizure episode.
Hospice care provided better symptom management, but it was underutilized, said the paper's lead author, Susan L. Mitchell, MD, MPH, professor of medicine and associate director of research training for the gerontology program at Harvard Medical School.
The review called for expansion and coordination of research across federal agencies, requiring financial support from the NIH and other federal divisions.
“The next stage for research is trying to design and test what interventions are effective,” Dr. Mitchell said. “The second piece is policy research and change. With the Affordable Care Act, we can be more creative, but we need to test policy so that it realigns with effective care. Now the default is aggressive care, and that does not always make sense clinically.” [See related story on page 1 of this issue.]
The Jan. 11 JAMA paper offered a retrospective analysis of hospitalizations among 3,019 participants in Adult Changes in Thought, a longitudinal cohort study of adults aged 65 years or older enrolled in an integrated health care system. All participants had no dementia at baseline and those who had a dementia diagnosis during biennial screening contributed nondementia hospitalizations until diagnosis.
Four hundred ninety-four patients eventually developed dementia and 427 (86 percent) of them were admitted at least once; 2525 remained free of dementia and 1478 (59 percent) of those were admitted at least once. The unadjusted all-cause admission rate in the dementia group was 419 admissions per 1000 person-years versus 200 admissions per 1000 person-years in the dementia-free group.
The lead study author Elizabeth A. Phelan, MD, an associate professor in gerontology and geriatric medicine at the University of Washington Medical School, said that she hoped the data would encourage more discussion about intervention issues, from reducing medications that may not be that effective for long-term treatment of behavioral issues to incorporating families into the decision-making process from the start.
“The first thing is to think about dementia as a chronic illness,” Dr. Phelan said. “Over the years, clinicians have developed an approach to caring for people with diabetes, another chronic disease — they know to check the person's blood sugar level on a regular basis, and do foot exams, and make sure the patients get eye exams on a regular basis. So there's a road map of care for patients to follow.”
“There is no road map for dementia at this point in time,” she noted. “It's a bit early to say what that care ought to look like in terms of research evidence, but while most clinicians know how to diagnose dementia, it's unclear what they should do in terms of routine office visits.”