WASHINGTON—As it looks forward to a decade where the average age of its patient population will reach an all-time high, the Department of Veterans Affairs is making a concerted effort to prepare itself to handle the expected flood of patients with Alzheimer’s disease and other forms of dementia. Of particular concern to VA are finding ways to better coordinate the numerous programs available in its healthcare system for people with dementia and to help physicians provide earlier diagnoses for dementia’s onset, allowing VA to get care to patients earlier in the disease.

Coordinating Dementia Care

In December 2006, VA convened a Dementia Steering Committee comprised of leaders from its offices of geriatrics, care coordination, mental health, primary care, research and a number of other disciplines. It also included ex officio members from the Indian Health Service and the National Institutes of Health. The committee’s charge was to examine the current state of dementia care in VA and return with recommendations for improvement.

The committee’s number one finding was that, while VA had a large number of quality dementia care models, the groups providing these services frequently did not communicate with each other.

“We have lots of different services available, but how do you put them all together so that the veteran and their family get what they need at the right time and the right place? And those needs change over time,” explained Susan Cooley, Ph.D., VA’s chief of geriatrics. “How do you ensure that all of the providers who are involved in the care, that what they are doing is coordinated and that they know about each other, and that what they’re doing is integrated with each other’s efforts? That’s a particularly difficult thing to do. People who have dementia often have multiple needs, and as the dementia progresses their needs change and they’re seen in lots of different settings, whether it’s in their home, in an outpatient clinic, in an adult day healthcare, in a hospital if an acute problem comes up and then they have to be at a community living center, then possibly going home and needing end-of-life care.”

The committee’s answer was to recommend that each VA medical center and Veterans Integrated Service Network designate a dementia care coordinator who has the responsibility of making sure that a dementia patient moving between care models receives the most integrated care possible.

“There are different ways we might structure that type of role,” Dr. Cooley said. “It could be somebody who is specialized in the needs of people with dementia, or somebody who has more generic skills that include knowledge about the needs of veterans with dementia. It could be somebody who is full-time [or it] could be a collateral position—that they do some other things and they have the added responsibility of dementia care coordinator.”

The coordinator could be based in different areas of the VISN or the hospital. “They might be based in a primary care clinic or in a specialized dementia clinic. They could be in a mental health clinic or geriatric medicine clinic, depending on the needs and resources of a given medical center,” she said.

The Role of a Care Coordinator

The recommendation from the committee remains just that, a recommendation, rather than a mandate from VA headquarters, mostly because not enough his known about how best a dementia care coordinator would function at a hospital or VISN.

“There’s no one right way to do it at this point, and there needs to be more research on the best way to structure this kind of comprehensive dementia care coordination,” Dr. Cooley said. “We are encouraging all of our VA medical centers [to] consider different types of dementia care coordination and select some model that works in their setting best.”

As medical centers and VISNs experiment with how to best situate the new dementia care coordinator position within their own systems, Dr. Cooley and other VA geriatric leaders have set up better communication systems between medical centers and VA headquarters to hear about their progress. In December 2008, VA began forming dementia committees at the VISN and medical center level.

“The goal here is to facilitate communication at all levels,” Dr. Cooley said. “We can gather information from them on the successes and the challenges that they’ve faced and that information can be taken to the Dementia Steering Committee.”

“VA also has a workgroup that’s looking at what are the core competencies of a dementia case manager. We say there should be dementia care coordination, but what is it a dementia care coordinator should be doing? What are the basic things they should know how to do?” she added.

VA also might get some hard answers as to how a dementia care coordinator should function when its Partners in Dementia Care trial wraps up in 2010. The four-year controlled trial is investigating comprehensive dementia care coordination and caregiver support through partnerships between VA medical centers in upstate New York and Alzheimer’s Association chapters.

“In that demonstration project, VISN 2 actually created the role of a dementia care coordinator, and this is where the idea for that as a specific position came from,” Dr. Cooley explained. “It all comes back to the issue of what is the best way to do this. We hope this trial will give us specific information on that topic.”

Getting Out Word on Dementia Warning Signs

There were certain aspects of dementia care that the steering committee felt needed further investigation, one of which was the issue of dementia warning signs and how to parley those into earlier diagnoses.

“We do not at this point recommend general screening of asymptomatic people [but] we do recommend that people be alert for presence of the warning signs—certain things that would indicate to the patient or to their family or to the provider that there’s something wrong and it needs to be evaluated. So, we want to have a little more specific guidance for our providers on how to use dementia warning signs, and a workgroup is putting together more details and more guidance on that,” Dr. Cooley said.

VA hopes that guidance will give it some direction on how best to get information about those signs to patients and family members. “There’s a big push in the community [for alerting people to the warning signs],” Dr. Cooley said. “For example, the Alzheimer’s Association has a list of warning signs, that they have publicized. Their goal is to have family recognize it. That’s just what they’re hoping for—that they’ll recognize it and go to their provider. We want to do that also. It’s just a matter of figuring out what the best way is for us.”

One possible way to get information on warning signs to patients and family members is through VA’s MyHealtheVet—the online medical record accessible to patients. “Families and veterans would have something that would be there to prompt them to think about this,” Dr. Cooley said. “It’s one way that we could have access to family members and veterans before they get to us.”

Another way is by posting them in hospital and clinic waiting rooms. “People can see them and ask themselves, ‘Are any of those relevant to me or my family member?’”

Getting Information to Physicians

For its physicians, VA is trying to ensure that the best information on dementia care in the medical literature—whether generated by VA or elsewhere—will be at their fingertips. This effort, recommended by the Dementia Steering Committee, is paying particular attention to topics of interest to physicians, including nonpharmacological interventions for behavioral symptoms of dementia, evidence-based caregiver interventions and evidence-based functional maintenance programs.

The latter topic is of particular interest to VA, since information on it is scarce. “Progressive dementia over time diminishes a person’s ability to function appropriately in their environment, so how do you maintain things as best as can be for as long as possible? There might not be a lot in the research literature on that, but whatever there is, we want to pull it together. It’s at the top of our list of areas where we want to pull all the information together in one place,” Dr. Cooley said. “What we’re trying to do here is pull all the information together and draw some conclusions once it’s all in one place. And if we see there are gaps in the literature, we can see where we need to go, what work needs to be done in that area.”

Another group is looking at making sure providers have information on medication warnings that relate to mental status changes. “There are lots of medications that often have side effects that change a person’s thinking. Provider’s need to be aware of that when they prescribe something and when they start and stop medications, and that there might be interactions between medications,” Dr. Cooley explained.

The end-goal will be to create automated warnings that appear in a patient’s electronic medical record informing providers of a possible side effect.

And because symptoms of dementia overlap with a number of other cognitive impairment diagnoses, including depression and delirium, VA has made efforts to provide clear information to physicians on the proper differential diagnosis for dementia. “These are three medical problems that have overlapping symptoms,” Dr. Cooley explained. “Sometimes physicians get confused, they’re not quite sure when they first interact with someone, what the cause of their cognitive impairment might be. It could be depression, dementia or delirium. In some cases, it could be all three. We are developing a foldout pocket card with the key information on the differential diagnosis. We’ll soon have that distributed to VA staff.”