WHAT WE'RE LEARNING
We can all recognize that people living with Alzheimer's disease or dementia urgently need help, as do the family members, clinicians, and health systems that provide care for them. One in three older persons die with this devastating serious illness, and they have twice as many hospital stays compared to others their age. In 2017, 16 million family members and friends provided 18 billion hours of unpaid care for people with dementia, and half of those have been providing care for four or more years.
With this knowledge in mind, The John A. Hartford Foundation is working with a team led by UCLA’s David B. Reuben, MD, on an innovative Alzheimer’s and Dementia Care (ADC) program that is making life easier for caregivers—and improving patient care. The project is a perfect example of how our three priority areas – creating age-friendly health systems, supporting family caregivers, and improving serious illness and end-of-life care – all intersect.
Dr. Reuben and the team have established a model of care that addresses the complex needs of both patients and their caregivers, and earns the respect of clinicians. In the ADC program, nurse practitioners (NPs) co-manage the patient’s care as Dementia Care Specialists, serving as a major resource alongside the primary care team. These NPs provide clinical services and share in-depth guidance about community-based social, environmental, and financial services with patients and their caregivers.
The project team is helping us understand the many advantages to adopting the NP Dementia Care Specialist role. NPs have the education, skills, and experience to help identify the medical needs and behavioral symptoms of a patient, along with support that is needed for family caregivers. They can also determine social and behavioral treatments aligned with the overall care plan, without having to confer with the primary care practice on each step.
The Dementia Care Specialists in the program report feeling professional pride and high job satisfaction. That may be due to putting their holistic understanding of a patient into action—understanding who they are as a person, where they come from, their cultural background, and related issues. In short, they dig deep to truly discover ‘what matters’ to patients and caregivers they work with, and design care plans that meet these needs.
Fostering a care model where NPs prescribe and execute diagnostics and other care options saves time and can cut costs. It also helps patients when all members of their care team coordinate with one another and information flows the way it should.
We have been gratified to learn from the project that both participating NPs and the primary practices report an increased sense of trust and mutual respect—nurturing an effective, mutually beneficial professional relationship. In fact, we’re excited to learn that the primary care practices at UCLA have quickly realized the value of the program and are referring their patients to it in large numbers.
The program is clearly very promising. It is successful at reducing and managing patient symptoms, keeping people in their homes for longer, and improving the experience of caregivers in a way that is at least cost neutral and may be cost saving. Participating people with dementia are 40 percent less likely to be admitted to a long-term care facility than their peers.
In addition to improving care with dementia co-management, the program has greatly reduced the burden on caregivers. By increasing positive outcomes for the persons with dementia and providing support and education, caregivers report a better experience and less stress, strain, and depression caused by managing their loved one’s care. In addition, the NP Dementia Care Specialists in the program help caregivers navigate financial, community, and social services designed specifically to support them.
The co-management model places patient and family needs and preferences at the center of care—a priority across all of our work at The John A. Hartford Foundation. Each NP becomes very familiar with their patients and families and understands what they value most, making certain that potential care options align with their individualized care plan.
Through a new grant, the Foundation is now focusing on spreading the model that has been used at UCLA. We know it will take concerted effort to create systemic change on a wide scale, and that it will involve everyone from hospital administrators, to practitioners, to insurers, and government, and we are ready for the challenge.
UCLA’s ADC program is teaching us a valuable lesson about what improves care and the patient and family experience—without raising costs—in the context of complex and serious illnesses. Involving NPs who are especially skilled in dementia care ensures care is centered on each individual patient’s unique needs and wishes, helps caregivers connect with resources and services, saves money, and improves outcomes.
Jane Carmody, DNP, MBA, RN
Program Officer, The John A. Hartford Foundation