Easing The Burden of Care

As you drive up Rugar Street and pass Sibley Hall on your left, it appears caught in time. This nondescript building was once the home of the progressive “Campus School,” named for local educator Margaret Sibley and built in the mid-1960s. Its purpose was to educate student teachers in a real classroom setting, until funding was pulled by Governor Hugh Carey. The school hung on with strong community support until it was eliminated completely in the early ’80s. The building’s role in the university morphed and it was converted into an academic building that housed the Speech and Hearing (later Communication Disorders) Department, as well as the Education Department and the Hotel, Restaurant, and Tourism Management Department. It has rolled with the changes in purpose and planning over the years. Today Sibley is in the spotlight again. If you round the corner and head down the access road beside it you will see that it is now home to SUNY Plattsburgh’s Psychology Department and the groundbreaking Center for Neurobehavioral Health, an innovative hub providing services to the regional community, experiential learning opportunities for SUNY students, and opportunities for research and learning.

Years of Planning
Dr. Michael Morales is an associate professor and co-chair of the Psychology Department at SUNY Plattsburgh. In 2008, Morales and a few colleagues met and brainstormed about goals for the future. “Dr. Jeanne Ryan organized a group of faculty that included Dr. Patricia Egan, Dr. Laci Charette and myself to plan a center that would bring together a number of programs and services operated out of the Psychology Department,” explained Dr. Morales. It was there that the seeds for what is now the Center for Neurobehavioral Health were planted in the winter of 2008. “The goal was to create a center that would continue to provide much needed psychological, educational, neuropsychological, and rehabilitation services to the North Country Community; a place for collaborative research investigating autism spectrum disorders, Alzheimer’s disease, and traumatic brain injury and a place where students could get hands- on experience and training with the populations that participate in our programs and services,” said Morales.

In March 2009 the SUNY Plattsburgh Executive Council approved the creation of the Center for Neurobehavioral Health. “I was tapped to serve as the Psychology Department representative for building renovations,” added Morales. Almost nine and a half years after the original brainstorming session, the $8.5 million facility is complete. It boasts 25,000 square feet of research, academic, and clinical space; two new computer labs for psychology students and a computer lab for students studying in the School Psychology MA/CAS program; and a space for the Center’s Autism Intervention Programs. SUNY celebrated the grand opening of the center with Morales as interim executive director during Homecoming Weekend in October 2017.

While the Center itself may be newly minted, it is perhaps best known in the community for some of its longest-running programs, which were in place long before renovations began. The Third Age Adult Day Center (TAADC), aimed at assisting persons with dementia and memory loss, has been serving the region since 1990 and the North Country Regional Traumatic Brain Injury (TBI) Center opened its doors in 1994. The Regional Centers for Autism Spectrum Disorders, under the direction of Dr. Patricia Egan, also predates its new home, having begun its programs in 2005, as does the Neuropsychology Clinic and Psychoeducational Services, formed in 2001 under the direction of Dr. Ryan.

Alzheimer’s Disease Caregiver Support Initiative

The number of Americans afflicted with Alzheimer’s Disease—the irreversible, progressive brain disorder that slowly erodes memory, reasoning, and cognitive function—is growing at a staggering rate. It is rare to find an individual or family whose lives have not been touched by the disease. Currently 5 million Americans are living with Alzheimer’s and that number is expected to grow exponentially. More than 15 million people provide unpaid care for those suffering from the disease. In 2016 alone, those caregivers provided 18.2 billion hours of care valued at over $230 billion and 35 percent of those caregivers have reported that their health has gotten worse due to those care responsibilities. The healthcare and long-term care costs for people with Alzheimer’s and the toll it takes on their caregivers have made Alzheimer’s a public health crisis.

Aimed at tackling the caregiver crisis in underserved (rural) communities, the New York State Department of Health (NYSDOH) made grant funding available for its Alzheimer’s Disease Caregiver Support Initiative (ADCSI).

The SUNY Research Foundation worked tirelessly during the summer of 2015 writing and then refining its grant application in the hopes of bringing this caregiver component to the Center for Neurobehavioral Health. Research Foundation staff included Michael Simpson (director of Sponsored Research and Programs), Yvonne Lott (co-project director), and Valarie Drown (project coordinator), with Dr. Richard Durant (assistant professor of Clinical Neuropsychology and director of the Neuropsychology Clinic and Psychoeducational Services), as project director. Dr. Durant is a licensed psychologist with M.S. and doctoral degrees in Clinical Psychology from Antioch University New England, and is a professionally trained clinical neuropsychologist.
The group’s proposal outlined phases that would be implemented over the five-year life of the $7.5 million dollar grant (distributed at a rate of $1.5 million per year), including initial expansion of existing caregiver support services, reducing caregiver burden, and providing crisis management that would help keep those suffering from Alzheimer’s in the home, rather than being institutionalized. SUNY Plattsburgh was one of nine recipients of grant funding for the landmark program.

Practical Application
The ADSCI will enter its third year of grant funding in January 2018, and has had the good fortune of finding a state-of-the-art home in the recently completed Center for Neurobehavioral Health this past fall. The ADCSI provides “caregiver support services,” which are “activities or actions performed, provided or arranged to promote, improve, conserve, or restore the mental or physical well-being of caregivers and improve their quality of life.” The goals of the initiative include reducing avoidable ER visits and hospitalizations, improving coordination and access to new and existing support services, expanding and enhancing access to respite services, improving health and well-being of caregivers and individuals with dementia, limiting all unnecessary transitions, continuing community residence, and reducing institutionalization of individuals diagnosed with dementia.

“We are tasked with providing these services for six counties: Clinton, Essex, Franklin, Warren, Washington, and Hamilton,” said Durant. There are many paths for caregivers to connect with the program. “Sometimes the physician of a patient with dementia will refer them to a Center of Excellence for Alzheimer’s Disease (CEAD) for diagnosis,” explained Durant. Glens Falls Hospital and Albany Medical Center are two of only six CEADs in the region, meaning they provide a level of unparalleled compassion, care, assessment, and management of complex patient situations. “The patient will typically meet with a Center neurologist for a physical exam and imaging to find out what is going on with the brain physically. They will formulate a treatment plan and follow through with care for the person with dementia with a neurologist and/or psychiatrist,” said Durant. They then refer the patient’s caregiver to ADCSI for caregiver support services. “For those people who cannot make the drive to Glens Falls for the diagnostic evaluation, I offer diagnostic services for the person with dementia at the Neuropsychology Clinic at the Center,” he said. This involves a several-hour neuropsych evaluation and feedback session, with a writ- ten report with diagnosis (if applicable) and recommendations, sent to the referring physician. At that time, Durant connects with the care- giver and recommends them to the ADCSI’s services.

On an individual level, a caregiver might receive care consultations which provide support and educate the caregiver. “These can be face to face, over the phone, or in their favorite diner,” explained Durant.

“We help the caregiver to feel healthy and effective, and find they feel that way when they are better informed. We assess, assist in planning and troubleshooting, whatever is needed. It is a person-centered, humanistic approach. Our goal as an organization is to promote that,” he said. Family consultations are available for whoever may want to be involved. They include not just family, but also friends, neighbors, even church members who are involved with the care of the person with dementia.”
Caregivers benefit greatly from the ADCSI respite program. It pays for a friend or relative or professional caregiver to spend time with the patient while the caregiver can have much- needed time to run errands, catch up on sleep, and take a few moments for themselves. The respite program will also pay for adult social day and medical model adult day programs. The care receiver can go to a day or overnight program like the Third Age Adult Social Day program, the Champlain Valley Senior Community in Willsboro, or Pine Harbour in Plattsburgh. These programs have been found to actually help care receivers stay engaged.

“A focus on caregivers and the tremendous effort that goes into the day-to-day care of an individual with dementia is something that we did not have back in the 1980s when my grandfather was caring full time for my grandmother with Alzheimer’s Disease,” explained Valarie Drown. “This experience as a 13-year-old girl shaped my passion to help others and, through the Alzheimer’s Disease Caregiver Support Initiative, I have the opportunity to do just that. Caregivers have told us that our program has been a life-changing experience for them. At one point they had found themselves with no resources, no guidance, and no one who would listen. When they were considering institutionalized care, we have made it possible to keep their loved ones in the home,” said Drown. The world of the caregiver can become very small and isolated but the ADCSI Care Navigators work alongside the caregiver to provide the support that is needed to continue on healthfully and effectively.

Working With NYSDOH
The DOH has praised ADCSI for some of its innovations. “They use a lot of our ideas and workflows to inform the other contractors who are administering this same grant in other parts of the state. The grant project directors meet monthly on the phone with DOH as a group, and communicate with each other regularly, sharing information constantly,” said Durant. “Our workflow for the assessment/ intake process has been adopted by other contractors. Other project directors like the way we triage, or how we make certain judgments about staging caregivers for services,” he added.

The flow of information and ideas goes both ways. “We are working with a contractor in Rochester that has a drop-in respite program. We are considering developing something similar, relying on their expertise to guide us in the development of this new component,” said Durant. “A drop-in respite program consists of volunteers who provide care, and is open during hours that other programs are not open. Caregivers could bring a loved one for free to be taken care of while the caregiver attends to personal issues,” he explained.

SUNY Students Get Involved
The ADSCI grant is at a phase where Durant will soon accept practicum, internship, and research students. Undergraduate psychology students will begin participating in January, assisting with program evaluation and evaluating changes in caregiver quality of life. These experiences could lead to them publishing their findings. “We are also considering pairing students with Care Navigator staff so they can gain valuable experience,” explained Durant. “We hope to soon have these opportunities open to social work, psychology, and nursing students, as it is relevant to different disciplines.”

In the Center for Neurobehavioral Health waiting room, one can typically find children waiting for an evaluation to determine if they have autism, a learning disorder, or other neurodevelopmental disorder; a middle-aged patient with a brain injury; or an elderly patient seeking an assessment for Alzheimer’s Disease or other dementia or stroke. “The Center employs some 30 individuals, and Center faculty and staff have brought in approximately $5 million in grant and other funding to the college and local area in the past three years alone,” said Dr. Morales. “We have a number of students participating in our Traumatic Brain Injury Center, Third Age Adult Day Center, and Autism Intervention Programs as fieldwork students, volunteers, and interns,” explained Dr. Morales. Added Dr. Durant, “In addition to providing exceptional dementia caregiver support services, we would like to see the ADCSI become a major contributor to building a dementia-capable workforce across the region and state.” Dr. Morales explained, “This is truly a unique center not only in regard to the SUNY system, but also nationally.”