Imagine yourself in this common scenario: Your elderly mother has received a diagnosis of dementia from her neurologist, which means she will likely lose cognitive function over the next few years. You soon become her primary caregiver, in charge of delivering her medications, ensuring her safety, and communicating with her medical providers.
As months go by, you see the disease progress. Your mother’s reasoning and judgment decline, she frequently gets lost, and she starts forgetting important details on a regular basis. You’re not a trained professional, and have no way of knowing if her behavioral changes are normal, or merit a trip to the E.R. You’re also troubled by how some of her medications affect her, and wonder if you should help her re-write her medical directive.
A new collaboration between UC Hastings, UCSF and the University of Nebraska could provide anyone in this situation with essential help. As part of a three-year, $10 million grant from the Centers for Medicaid and Medicare Services (CMS), doctors and policy experts at the three universities will pilot a new model of care for dementia patients and their caregivers. This healthcare innovation award is made possible by the Affordable Care Act, which authorized the federal government to design and test new ideas about improving health care and lowering costs to consumers.
The proposed “dementia care ecosystem” is projected to reduce the cost of dementia care by delaying admission to long-term care facilities 180 days, lowering ER admissions by 50%, preventing 30% of hospital and ambulance costs, and cutting the costs of prescription drugs by 15%. It should also have other qualitative outcomes, including increased wellbeing for patients and caregivers and improved satisfaction with medical care.
For the study, a "care team navigator" will offer 24/7 care to dementia patients and their caregivers. Carefully monitoring their needs, the navigator will provide links to targeted education, facilitate connections to community resources, and assist with contacting health care professionals as needed. Navigators, who will be extensively trained college graduates with an interest in the medical field, will also offer more holistic resources to patients, encouraging exercise, stress-reduction, respite and nutrition programs.
1500 subjects will be part of a randomized controlled trial taking place in both urban San Francisco and Omaha, Nebraska, as well as in rural Nebraska beginning on October 1, 2014.
Sarah Hooper ’08, Assistant Director of the UCSF/UC Hastings Consortium on Law, Science & Health Policy and Adjunct Professor of Law, is spearheading the legal services component of the study. Patients and caregivers will connect to resources and education that will help them in appointing agents, making health care directives, managing finances and benefits, as well as setting up protections against fraud and abuse. Advisors will also assist with resolving health insurance coverage issues and checking for eligibility in various care programs.
Hooper said that one of the most important aspects of the legal services is encouraging patients and caregivers to have conversations about what they want on a continuing basis as the disease progresses. Patients will be regularly assessed by care providers to make sure they retain their decision-making capacity.
Hooper explained the many barriers to legal assistance that the program is hoping to break down. “So many people don’t recognize when they need legal assistance, or they have misperceptions about lawyers and what they do, thinking that lawyers are only for when they’re in trouble or going to court,” she said. Pro bono and private bar legal providers will be available to consult with patients and caregivers on various issues, including estate planning.
The focus on the caregiver in addition to the patient is a new direction for dementia care. Dr. Winston Chiong, who is Assistant Professor in the UCSF Department of Neurology Memory and Aging Center and helped design the study, said that “there is growing recognition that a tremendous amount of the burden of this disease falls on the caregiver. They experience lots of deleterious health and psychological consequences,” he said. “Caregivers may feel like they are out on their own doing this very important work, but we want to provide a system of support,” he said. Hence the name “ecosystem,” which is meant to reflect the idea that the patient and caregiver exist within a supportive network of providers and advisers.
The study will collect metrics and qualitative information from every participant. Medical outcomes will be assessed, CMS will comb over data about health care utilization, and the legal part of the program will also be carefully tracked. “We’ll be asking if they have seen a lawyer and checking their baseline attitudes and experiences of the legal profession,” said Hooper.
The final analysis may touch on some potentially controversial outcomes. For patients approaching the end of life, the study will track if participants expressed the wish to die at home and if this occurred. “We will want to know if they cycled through hospitalizations at the end of life,” said Hooper. She is wary of a recap of the national conversation around “death panels” that ensued during President Obama’s campaign to reform American health care in 2009.
“When we survey patients, they say that they prefer less intensive and less expensive care at the end of life,” Hooper said. “This isn’t about rationing care. It’s about trying to do what patients want, which also decreases costs at the end of life.”
In the future, the dementia care ecosystem might become a wide-scale program that could be adopted by health insurers, hospitals or other providers.
“We know the population is aging and we expect the total population with dementia to increase,” said Dr. Chiong. “We hope we can come up with a model of care that is more sensitive to patient and caregiver needs and is cost effective, so it can be sustainable in the long term.”
The Source for Competitive Healthcare (an independent, nonprofit initiative of the UCSF/UC Hastings Consortium on Law, Science & Health Policy that serves as a multi-disciplinary resource for information and analysis about healthcare cost and competition.)