Quality in advanced dementia care: 3 challenges, 5 solutions

Quality-of-care issues exist in all long-term care (LTC) settings, but they are especially pronounced for those with advanced dementia, according to David Grabowski, PhD. The Harvard Medical School professor of health care policy proposed five possible ways to address these issues when he spoke at a Jan. 21 Institute of Medicine (IOM) meeting titled “Policy Issues in Improving Care for People with Advanced Dementia.”


Three barriers to high-quality care for those with advanced dementia include inadequate payment, the limited existence of quality information and fragmentation of care in LTC and healthcare services, Grabowski said.

1. Payment for services. When payment is based on expected use of resources, as it is now, rather than on outcomes or care quality, he said, then the system makes no distinction between providers of quality care and providers of poor care.

David_Grabowski_PhD_HarvardRight now, public sources (mainly Medicaid but also Medicare for home healthcare) base payment on a resource utilization group system that pays less for the two categories into which those with advanced dementia typically fall, Grabowski said. “You either get paid based on the individual having impaired cognition…or you get paid based on [him or her] having reduced physical functioning,” he added. “There’s no interaction between the two. I’m a health economist. That doesn’t make sense to me. …It seems like there should be some interaction where if I have impaired cognition and reduced physical functioning, I should require more resources. …That seems intuitive…but there’s no mechanism for that.”

2. Regulation of service providers. The difficulty in measuring quality across various providers makes it tricky to identify good versus poor providers, Grabowski said, adding that such measurement is even more complicated as pertains to advanced dementia.

“The obvious reason: high levels of cognitive impairment,” he said, “but I also think there’s a real lack of availability of family and financial resources in some instances. And…just the urgency of some of those care decisions and how quickly things change.”

Research Grabowski conducted with Susan Mitchell, MD, MPH, found a U-shaped relationship between family oversight and the quality of care provided to nursing home residents with advanced dementia. “When you move from no oversight to having a moderate level of oversight, we actually saw an improvement in quality of care,” he explained. “So as the family began to visit the individual with advanced dementia in the nursing home, quality of care improved.”

When family visits increased and involved a high level of oversight, however, Grabowski said, quality of care decreased. The reason remains elusive, he added, but perhaps families were interfering with care, or maybe family visits increased to a high level because a nursing home had more quality-of-care issues.

3. Fragmentation. Separation in the system of care is magnified for those with advanced dementia, Grabowski said, because they tend to use many more healthcare and LTC services and are transferred from site to site.

“I would argue that part of the reason they’re bouncing around from site to site is that we’re not paying any of the providers in that system to manage their care,” he said. “We’re really paying everybody on a silo basis.”

When Medicaid only pays providers to care for patients/residents in their direct care, Grabowski said, providers are not incentivized to reduce hospitalizations, and Medicaid is not able to realize savings that would come with those reduced hospitalizations. “So ultimately we see advanced dementia patients bouncing around,” he said. “That then flows down to the delivery level. Providers aren’t going to invest in the infrastructure and the expertise to treat individuals in that setting, because they can’t enjoy any of the savings if they prevent a hospitalization, for example.”

System fragmentation also stymies the implementation of innovative programs, Grabowski said. “It’s a payment failure,” he added. Nursing homes “are not incentivized to have those programs. If we pay providers to implement these kinds of programs—reward them for these kind of delivery-level innovations, we’ll see greater sustainability.”


Potential answers to the challenges exist, Grabowski said. Some have shown more promise than others.

1.  Increased payment. Improving payment for the care of people with dementia has been shown to influence the quality of care, Grabowski said. Iowa and New York, for instance, have implemented rate add-ons, and some states pay higher rates for dementia special care units. “That’s going to, obviously, encourage that model and also provide potentially higher quality if that’s indeed the case—that special care units are of higher quality,” he said.

2. Pay for performance. A pay for performance (P4P) model might “encourage the kinds of patients and the kind of care that we want to see in these settings,” Grabowski said, by rewarding providers who meet or exceed predetermined metrics, and not rewarding (and perhaps even punishing) providers that do not meet the metrics. Traditional P4P programs, however, such as the federal Nursing Home Value-Based Purchasing Demonstration or state Medicaid programs, “haven’t been very promising in terms of the outcomes,” he added, although none has focused on dementia or advanced dementia.

Grabowski was an evaluator of a Minnesota performance-based incentive payment program, or PIPP, that implemented some of the ideas that nursing homes had presented to the state. The state provided 80 percent of the funds up front and then withheld the last 20 percent to ensure that the providers met a series of metrics.

We saw real, across-the board improvement in performance,” Grabowski said. “These projects were all over the map in terms of their focus, from hospitalizations to pain management, medication—all sorts of things. But several of them focused on dementia care, and I really think this a very targeted way…to funnel money into very innovative projects and programs.”

3. Report cards. Report cards can provide valuable information for all patients/residents, Grabowski said, but research has not shown that they have a great effect on quality in long-stay nursing home residents or in other long-term care contexts. The literature also suggests that report cards have unintended consequences, he said.

“If we begin to sort of set up metrics in terms of quality of care, maybe I’ll avoid certain types of patients, like those with advanced dementia. Maybe I’ll miscode either the disease status or the quality of care. And, finally, maybe I’ll respond to those measures that are reported on the Nursing Home Compare website, for example, but shirk on other, unreported measures,” Grabowski explained.

4. Regulation. Further regulation may not be what is needed in the highly regulated world of long-term care, especially in nursing homes, Grabowski said. “I think we need smarter regulation, and we need to apply the existing regulations in a more productive fashion,” he continued.

Residential care facilities, home care and hospice, however, might gain from regulation, he added. Overall, though, “regulation is very much a complement to payment innovation rather than a substitute,” Grabowski said.

5. Care coordination. Care coordination—via accountable care organizations, integrated care demonstration projects, bundled payments  and other means—is the wave of the future, Grabowski said. “I think risk-based payment is an opportunity for those of us interested in seeing better care models for those with advanced dementia,” he added. “I would argue that we need to identify models that allow us to identify the healthcare and LTC services, and innovate both at the payment level but also at the delivery level.” Both levels of innovation are needed, Grabowski said.

Research he conducted with Mitchell and Keith Goldfeld, DrPH, related to managed care payments for nursing home care found “fewer hospital transfers and more primary care visits—especially more primary care visits by nurse practitioners—when individuals in nursing homes were covered by managed care rather than traditional Medicare,” Grabowski said.


“We have a number of opportunities for reform out there,” Grabowski concluded. “I think the most promising ones are reforming how we pay in terms of the generosity and the methods of payment, very targeted P4P where we incentivize particular models among providers, and finally, investing in those risk-based care coordination models. I actually think we can design those or tailor those toward advanced dementia patients. There’s a lot of potential upside.”

The IOM convened the meeting of experts under contract from the U.S. Department of Health and Human Services in accordance with the National Plan to Address Alzheimer's Disease: 2013 Update. Other meeting presenters discussed advanced dementia in hospice programs, hospitals and the community at large. See Long-Term Living's coverage of the Sept. 8, 2014, meeting here.

Topics: Alzheimer's/Dementia , Articles , Medicare/Medicaid