Preparing and Caring for Patients with Dementia

This article appears in the June 2014 issue of HealthLeaders magazine.

An aging population is already expected to strain U.S. healthcare resources, and recent studies suggest that dementia represents both a major health risk and a considerable cost driver. In addition, this long-term decline in cognition takes a significant toll on patients, their families, and the providers who care for them.

Some healthcare systems and hospitals are now coordinating care for these patients so they can stay at home and also avoid unnecessary hospitalizations. Patients with dementia are at risk for falls, pneumonia, medication noncompliance, anxiety, and other comorbid conditions that could lead to long hospital stays. Not addressing the needs of what's been called a silver tsunami now could be a prescription for readmission rates that are difficult to drive down in the future.

A 2013 RAND study of dementia published in the April 2013 New England Journal of Medicine estimated the cost of caring for patients with dementia will more than double by 2040, from $109 billion to at least $259 billion, and that figure does not include the costs shouldered by family members and caregivers who pay out-of-pocket for sitters and other services, or forgo careers in order to stay home to care for a family member.

Success key No. 1: Thoughtful avoidance of medical intervention

Among the special considerations for caring for patients with dementia is defining the goals of care, including possibly paring down the number of medications a patient is prescribed.

"We're talking about supportive care, rational, [and] reasonable care that's going to provide them with increased quality of life because we can't increase their life span with the dementia but we can increase the number of days that they have that are more functional," says Evelyn Granieri, MD, MPH, chief of the division of geriatric medicine and aging at New York-Presbyterian/Columbia University Medical Center, which is part of the six-hospital New York City–based New York-Presbyterian. "And oftentimes, some of the medications that are prescribed by other clinicians actually decrease the quality of their life."

For example, Granieri says diuretics that are often prescribed for blood pressure require frequent trips to the bathroom. For a patient with dementia, not only is medication adherence complicated by memory issues, but mobility also becomes a problem. Other maintenance medications, such as statins, may not be optimal for dementia patients because the drugs are not increasing or maintaining their quality of life.

"When you're looking at a limited life expectancy, you don't need medications that are meant for 40-, 50-, or 60-year-olds that are meant to help them live a little bit longer," she says, calculating the number of medications the average patient comes to her with at 10–12, which she usually reduces to 4–5.

Granieri also advises physicians to be more thoughtful about other medical interventions, such as mammograms and colonoscopies.

"They don't need these to keep them alive any longer," she says. "We try to work with other physicians they may see and say, 'Look, this is not necessary at this point. It's not going to provide them with any benefit. Yes, you would expect to do this for a younger person or someone who doesn't have a cognitive disorder, but they're not going to get a benefit from it.' "

The Allen Hospital, where Granieri practices, is a community hospital serving northern Manhattan, the Bronx, and parts of New Jersey. For patients over the age of 70, the hospital offers geriatric consultations for nursing units at the hospital, an outpatient practice, and a house call program for patients who are too frail to come into the hospital or physician's office. Granieri says more than 300 patients, on average, receive services from an interdisciplinary team that includes social workers, nurse practitioners, and five fellowship-trained, board-certified geriatricians.

"Our practice is small," she says, and describes the patient population in the primary care practice as very frail. "We don't take care of healthy old people. We take care of people who … have to be over 70, they have to have some other markers of frailty, and the most consistent of them is that they have cognitive disorders."

One of the barriers to coordinating care for patients with dementia is the dwindling number of geriatricians, and the general unfamiliarity with dementia on the part of nonspecialists. But New York-Presbyterian, with its affiliation with Weill Cornell Medical College and Columbia University College of Physicians and Surgeons, is helping change that, says Granieri. She gives oversight to the medical residency rotation in geriatric medicine. There are about 50 internal medicine residents who get a chance to see the team-based approach to geriatrics and dementia care.

"We've now taught almost eight years' worth of residents, and they get it," she says. "The environment is not always helpful for them because they get pressured by other clinicians to do extra things that may not be necessary, but they understand which medications older adults should not have. There are physicians now who have been exposed to and participated in what we like to think of as optimal care of older adults with cognitive impairment."

Success key No. 2: Treat the family, not just the patient

Lee Memorial Health System, a Fort Myers, Florida–based public health system with a medical group and 1,423 beds among four acute care and two specialty hospitals, expanded its services for patients with memory issues, including dementia, three years ago with the addition of a house-call program and a 112-bed skilled nursing facility, HealthPark Care & Rehabilitation Center. Lee Memorial's memory care program is aimed at taking care of patients with dementia in a more coordinated way, starting with screenings in the community. For 10 years, a volunteer nurse has been screening seniors in southwest Florida for free every Monday morning.

"Catching people as early as possible so we can monitor them for a significant drop in memory is very important," says Sunny Kozak, practice manager for the Lee Physician Group Memory Care, House Calls, and Geriatrics Service program. "We are seeing an increase in people coming in at a younger age. Instead of waiting until the late 60s, early 70s, they're coming in at their mid-60s."

As a designated memory disorder clinic for the state of Florida, Lee Memorial must reach a state-imposed benchmark of 100 screenings annually, which they exceed every year. From July 2012 to June 2013, Lee Memorial Health System completed 145 free screenings. Only 8% were 65 years or younger. From July 2013 through December 2013, there were 35 free screenings, a low number that staff attributes to the holidays; however, the younger age group already accounts for 8% of screenings with six more months to go.

If the screening indicates further testing is warranted, the providers tell the person who was screened "gently."

"It's a screening examination, not a diagnostic test," says Avra Bowers, MD, MBA, system medical director of primary care and community health services at Lee Memorial Health System, who is overseeing memory care at the system level. "We handle it very gently and advise them to get a full evaluation with a referral coming from the PCP because we do think it's extremely critical that the primary care doctor who is going to handle their other issues and medical conditions is involved in the full understanding of the potential dementia diagnosis and what we need to do next."

The memory care screenings are staffed by Lee Physician Group providers, but aren't limited to LPG patients. That's because the hospital system views dementia as a communitywide issue.

"We try to keep a healthy pulse on the patient's dementia progression and their needs from a safety perspective," says Kozak, noting that it's important to continuously monitor patients, sometimes for years, to determine what kind of care is appropriate. If the patient's memory problems are progressing, Lee Memorial can suggest adult daycare, home care services, or long-term care placement to try to prevent a hospital visit. "Hospitalization for patients with memory impairment, unfortunately, often turns into a worse situation than it needed to be," Kozak adds.

Similar to New York-Presbyterian, Lee Memorial assembles a team to help care for patients with dementia. It includes three geriatricians, two neuropsychologists, an advanced registered nurse practitioner, a social worker, and case managers who are embedded at 17 of LPG's primary care offices. The case managers are part of Lee Memorial's goal to attain patient-centered medical home status, which Bowers says helps coordinate care for dementia patients once they're diagnosed. But one of the most important members of the care team is the caregiver.

"We're essentially caring for two patients," says Kozak. "The most important thing we try to do is not allow that patient and caregiver to silo themselves from everything, which is the natural tendency. Alzheimer's is a family disease. We actually invite the caregiver and family members to come in for every appointment."

If an LPG patient with dementia is admitted to a Lee Memorial hospital, one of six ARNP liaisons follow patients into the hospital and communicate back to memory care staff and LPG doctors. These ARNP liaisons are assigned to one facility each, which is important for patients with memory and cognition problems. The liaison becomes a familiar face to the patient and the patient's family, making sure the patient's needs are met, questions are answered, and information is shared between hospitalists at the facility and the primary care physician.

Bowers says Lee Memorial has not started tracking readmission rates on this population, but attests to the seamless care.

"It's all about the patient; it's about the family members and helping them through it because it is critical for the quality of care for the patients."

Bowers says Lee Memorial is on the road to viewing dementia as a population health initiative. Part of working toward PCMH status means having a robust electronic medical record, which Bowers says is in place and helps coordinate all the moving parts a dementia patient often requires. She says the system already has patient registries for asthma, diabetes, and obesity; dementia is in the future.

"We should be able to build registries of our patients with dementia and then as to where they are in their dementia issue," says Bowers. "Then we'll be able to reach out and be more proactive. We're in that phase of population health in developing registries elsewhere, but we can and will be bringing that into the memory care program, hopefully within the next year."

Success key No. 3: Establish clinical practice guidelines

Team-based, interdisciplinary care for dementia patients is not a common practice nationwide. Large health systems and academic medical centers often are better able to bear the burden of low reimbursements from Medicare and to employ fellowship-trained and board-certified geriatricians who may serve in multiple roles, such as provider, researcher, or educator.

Kyle Allen, DO—vice president for clinical integration and medical director for geriatric medicine and the lifelong health division for Riverside Health System, a nonprofit system based in Newport News, Virginia, that includes seven hospitals, a medical group, and a full continuum of care for aging patients—says a patchwork of grants and philanthropy help pay for care of patients with dementia, but it's not enough.

"Geriatric assessment and team management of this illness is evidenced-based and effective," he says. "Medicare does not pay for it. So we can only do so many of these assessments because we can only afford so much of it."

Allen is also part of the administrative team for Riverside Health's Center for Excellence in Aging and Lifelong Health, which looks for and implements programs to help the aging population. He says that approval of a grant request to the Patient-Centered Outcomes Research Institute (an independent nonprofit organization authorized by Congress in 2010) holds what he believes is the most promise for patients with dementia. The grant would fund an initiative to standardize clinical practice guidelines in primary care offices.

Allen says established protocols for evaluation, screening, treatment, and care planning would fill the existing gaps in care and lessen the overwhelming nature that a dementia diagnosis presents to the family members of the patient.

"We have mapped out the workflow of how to do this," says Allen, who also describes the care coordination of dementia patients as a reengineering of the doctor's office. "We started putting together a task force in 2011, and the missing piece was the integration of physicians. And that's where people go."

Allen says PCPs may feel they don't have the resources to address dementia, and in some cases, early warning signs may even go unnoticed. Using guidelines will help the practice staff and physicians understand how to recognize patients who may need to be screened for dementia and what to do with patients who have it.

"For example, if you're a front office manager and Mrs. Jones comes to see the doctor on the wrong day, and she's 70 years old, and she forgets her prescriptions, that should be a warning sign," says Allen. "If we don't train the office staff to do it, they'll just say, 'She's just a confused little old lady.' "

If approved, the grant would fund advanced practice providers, such as a nurse practitioner or physician assistant in Riverside's primary care practices, who would be what Allen describes as a dementia care manager. They've already been piloting practice guidelines and tools in one of its practice locations since November 2013.

"What we've seen is that it takes a lot of time," says Allen. "The challenge is the time, the energy, the training, and how do we scale this across 30 practices?"

We have prepared a grant application that we will send to funding agencies to aid in Riverside Health System's approach to memory care issues. The system's Lifelong Health division is dedicated to the medical conditions that arise from caring for an aging population.

With more than 2,500 employees, the division cares for more than 6,000 older adults daily in their service area, which covers more than a dozen counties in eastern Virginia. There are five fellowship-trained geriatricians on staff, and they plan to hire two more. Allen says 40% of its dual-eligible population has dementia as a diagnosis, and in general, 5% of patients over 65 have some form of cognitive impairment that increases each decade over the age of 65.

Its dedicated program for patients with dementia is called ClearPath, an integrated service model that aims to help patients and families understand what it means to have and live with dementia.

The ClearPath model began developing in 2009 with its memory care households, which are assisted living and long-term care facilities designed to feel like home instead of an institution.

There are five such households. They are small, with only 20 residents, and are meant to be that way so that the space is not overwhelming. The residents have private bedrooms and bathrooms, but there is a common dining hall and kitchen. The smaller, home-like setting of these residences reduces anxiety in patients and families.

"The goal is to enhance dignity and provide the best quality of life possible while offering peace of mind for families," says Bob Bryant, senior vice president of Riverside Health System's Lifelong Health division.

In addition to residences, Riverside's ClearPath program also includes adult daycare, home care, and community-based care.

Bryant says they view a patient with dementia holistically and believe that community organizations, such as the Alzheimer's Association and Area Agencies on Aging, play a key role with the health system and families.

Families of dementia patients often will lean on advocacy organizations for help in securing resources, such as respite care options, education about the disease, or support groups, but Riverside Health also benefits from such partnerships.

Eastern Virginia Care Transitions Partnership—a coalition of five health systems, including Riverside Health, 11 hospitals, and five Area Agencies on Aging—helps patients transition from hospital to home with a health transitions coach. The coaches are funded by federal dollars that are awarded to community-based organizations, which means there is no financial outlay for Riverside Health.

"This is very different from case management," says Allen. "With the Eastern Virginia Care Transitions Partnership, they have a whole way of motivational interviewing that kind of teaches the patient how to manage their own conditions.

"The coach sees them once in the hospital, once at home, and then there are two phone calls. It's a 30-day intervention, and has been very effective at reducing 30-day readmissions by 9%–10%."

Riverside Health is attempting to build a longitudinal continuum of care for patients with dementia that improves the quality of life for the patient by bringing together clinicians and communities.

"It's a team-based approach; it's about getting the physicians, nursing, social workers, and the families together as a team around these illnesses and doing it in a way that we improve quality, service, and reduce costs," says Bryant. "We need to continue the innovation of new services, programs, and models of care that can deliver on the triple aim of improved outcomes, better experiences, and reduced costs."

Reprint HLR0614-8