Quality Care Coordination Can Improve Lives of Alzheimer’s Patients and Their Caregivers

According to a report by the UCSF Health Workforce Research Center on Long-Term Care, “As of 2015, an estimated 5.3 million Americans had Alzheimer’s disease, costing the United States $226 billion in health care, long-term care, and hospice care,” and causing immeasurable emotional pain to patients and families.

Part of the pain stems from the fact that “About two-thirds of people with Alzheimer’s disease or related dementia (ADRD) are cared for by unpaid family and friends, who are often unprepared to deal with the many challenges an Alzheimer’s patient presents and wind up bearing a physical and emotional burden that adds close to another $10 billion a year in health care costs,” says Brooke Hollister, a health policy expert at UC San Francisco School of Nursing’s Institute for Health & Aging, who co-authored the report.

By applying her research and policy experience – and through her collaborations with government agencies and Alzheimer’s advocacy groups – Hollister has become a key player among those trying to develop workable solutions to this national crisis.

“Brooke’s work helps objectively identify and spotlight models of excellence, so states and health plans don’t have to reinvent the wheel,” says Debra Cherry, executive vice president at Alzheimer’s Greater Los Angeles (AlzGLA).

Care Coordination That Makes a Difference

One focus of Hollister’s work has been defining what constitutes effective care coordination. Care coordination is when an individual or team helps patients and their families get the care they need as efficiently as possible. Research has demonstrated that intensive care coordination can decrease the unnecessary use of medical services, delay institutionalization and improve quality of life for patients with ADRD and their caregivers.

Susan Chapman Yet ADRD care coordination has not yet gained a widespread foothold, partly because many insurers have not understood the benefits of paying for it. Moreover, in those areas where it does exist, too often the care coordinator role has been poorly defined and coordinators don’t receive the training they need to work with patients and their caregivers as effectively as they otherwise might.

That concern helped drive the report that Hollister co-authored with her UCSF School of Nursing colleague Susan Chapman, in which they reviewed and analyzed care coordinator policies and practices for ADRD at health plans participating in the US Centers for Medicare & Medicaid Services’ (CMS’s) three-year demonstration programs for dually eligible Medicare and Medicaid beneficiaries. Many of the more than 9 million “duals” in the US suffer from ADRD. In the report, which the Health Resources and Services Administration (HRSA) funded, Hollister and Chapman identified both best practices and important questions emerging from the seven states they studied.

Among the most important conclusions to emerge is that “When done well, there is a business case for health plans to use care coordination for this population,” says Cherry, whose organization is a national leader in creating care coordination training and referral services for ADRD patients.

“In trying to create a road map for what states and advocates can do, we’ve worked with Debra’s group to present the information in a way that is readily accessible for health plans, so they understand there are cost savings available through better coordination of care,” says Hollister.

Diverse Paths to Successful Models

In California, where the demonstration project was called Cal MediConnect, Hollister and Chapman identified a number of best practices, especially for states where managed care is firmly established.

For example, one of the challenges all states had to address was defining the role and qualifications of the care coordinator. In California, three-way contracts between CMS, the state and each health plan called for plans to use “dementia care specialists,” which were initially simply defined as bachelor’s-level positions. Alzheimer’s groups pressed to define these positions as more professional – mostly nurses or social workers in care management departments. Convinced that care managers play a critical role in improving dementia care, AlzGLA successfully secured funding to design a training, technical assistance and advocacy program targeting this service.

One aspect of the program was free training that taught health plan care coordinators about the disease, the caregiver’s role, the kinds of resources available in the community and ways to manage challenging behaviors that accompany dementia. This training helped the coordinators do a better job of connecting families with the proper resources and educating them about how to care for their loved ones, thus enabling them to become better partners in an interdisciplinary care team.

“We did post-training surveys and are doing a six-month follow-up to see whether care coordinators retained the knowledge and whether, for example, there was an increase in referrals to community-based organizations,” says Hollister. 

Some health plans are already convinced of the value and have offered to pay for the training moving ahead. “They now understand the business case and are also motivated by a desire to deliver better-quality care,” says Cherry.

South Carolina offers another “best practice” model, albeit from a distinctly different angle, says Hollister. “One thing South Carolina highlights is how you can start from scratch with these contracts in a state where there is very little history of managed care,” she says. “South Carolina insisted that plans use social workers as care coordinators and that the plans create a unified data system that connects directly with the state’s departments of health,” says Hollister. “That enabled efficient care coordination, because it made sure all stakeholders were aware of the dementia diagnosis and who the caregiver is.”

She also notes that South Carolina insisted on standardized health risk assessments to help identify ADRD patients, as well as separate assessments to ascertain the capacity of the caregiver.

“This helped plans flag caregivers who needed more support and services,” says Hollister. To provide some of that support, South Carolina used Medicaid dollars to support caregiver education in partnership with local universities and the state’s Alzheimer’s Association chapter.

A Wider Influence

After Hollister presented a nationwide webinar on the HRSA report, interest began gathering from CMS, state governments and advocacy groups across the country.

“One of our priorities now is to take lessons learned and get them out there and accessible to other states,” says Cherry. “We think everything we are doing will be relevant to health plans that serve older populations, because even if they’re only responsible for Medicare dollars, identifying people with dementia and their family caregiver can avoid some ED [emergency department] visits and hospital stays; one hospital stay can sometimes pay for the cost of a nurse care manager for part or all of a year.”

Better still, says Cherry, identifying best practices – as Hollister and Chapman have done – can shape ongoing development of quality measures specific to the ADRD population.

“Health plans and policymakers are very interested in this issue of getting the right care in the right place for a lower cost,” says Hollister. “If we can continue to demonstrate some of that is happening with Alzheimer’s disease, I believe interest will grow.”