Alzheimer’s disease family caregivers will get telemedicine training
Patients with Alzheimer’s disease or dementia from traumatic brain injury may resist care efforts from family members, such as taking a bath, taking medicine, routine mouth care, abstaining from alcohol or going to a medical appointment.
When this resistance is accompanied by agitation, aggression and irritability, it can trigger distress and health issues among family members, reducing their quality of life and increasing the cost of care for the affected person.
Armed with preliminary evidence that professional caregivers can be taught strategies to alter such behavior, University of Alabama at Birmingham researchers are now launching a three-year study to see if family caregivers can benefit from those same strategies.
The hope is that six weeks of personalized coaching, via phone or online, will reduce the burdens felt by the caregivers of family members with dementia.
“We want to know what the family needs are. How do we meet those family needs?” said David Geldmacher, M.D., professor of the UAB Department of Neurology and director of the Division of Memory Disorders and Behavioral Neurology. “Where do they see gaps? What limits their quality of life?”
The need to help family caregivers of dementia patients is immense. According to the Alzheimer’s Association, more than 5 million Americans are living with Alzheimer’s, and in 2015, more than 15 million caregivers provided an 18.1 billion hours of unpaid care.
Each family will be trained by Rita Jablonski-Jaudon, Ph.D., associate professor in the UAB School of Nursing and a nurse practitioner in UAB Memory Disorders Clinic, and Vicki Winstead, program manager in the School of Nursing.
Caring for a family memberJablonski-Jaudon has firsthand experience, as a researcher, clinician and daughter-in-law.
“I cared for my mother-in-law, who had early stage dementia,” she said. “We had to move her from her home to ours. After a particularly rough and humbling week, I remarked to a colleague, ‘I am considered a nursing and research expert in dementia; if I’m struggling, how much harder is this for other caregivers?’”
In nursing home research of older adults with dementia, Jablonski-Jaudon and her staff were able to use specific behavioral techniques to minimize care-resistant behavior.
“We were focused on mouth care, the one activity that consistently triggers resistance to care in persons with dementia,” Jablonski-Jaudon said, adding that those techniques were useful to counter a variety of refusal behaviors.
Jablonski, GeldmacherIn the current study of family-member caregivers, the UAB team will enroll 50 families of patients with behavioral and psychological symptoms of dementia, and 25 families of patients with traumatic brain injury, or TBI, who have behavioral symptoms that are triggered by caregiver requests. All families will come from patient pools at UAB’s Kirklin Clinic and Spain Rehabilitation Center.
Family members will be able to watch short videos that cover many of the topics and questions Jablonski-Jaudon has encountered in her outpatient clinics. The videos show techniques to prevent and minimize care-resistant behavior, and family-member caregivers will also receive six, once-a-week coaching sessions, via the GoToMeeting computer app. This will enable face-to-face discussion at convenient times for the families, without the need to travel away from home.
A need to help veteransThe UAB study is funded by a $500,000 grant from the U.S. Department of Defense. The Pentagon is interested in dementia for two reasons, Geldmacher says: Surviving World War II and Korean War veterans are growing ever older, and TBI — a risk factor for dementia — is an important type of injury from the Iraq and Afghanistan wars.
Geldmacher says his team will characterize the nature of the problem for each caregiver family. After Jablonski-Jaudon and Winstead finish their coaching, outcomes will be measured by objective data, such as the number of emergency room visits, and self-reported data, using the standard dementia quality of life surveys. There will also be a long-term follow-up at six, 12 and 18 weeks after the coaching.
“So much is based on an individual’s perceived quality of life,” Geldmacher said. “Something that helps one caregiver family might make another family worse. We anticipate that the study will mostly be families where a child takes care of a parent.”
Geldmacher says he used to give dementia patients periodic exams, and he would usually have to tell the family that the patient was getting worse. That routine was jolted when the son of one patient said, “We know she is getting worse. What can we do?”
That challenge changed Geldmacher’s focus. He began to question how well he was treating the family’s quality of life and how he might better help family caregivers.
At UAB, Geldmacher holds the Patsy W. and Charles A. Collat Endowed Professorship in Neuroscience.
|“I cared for my mother-in-law, who had early stage dementia… After a particularly rough and humbling week, I remarked to a colleague, ‘I am considered a nursing and research expert in dementia; if I’m struggling, how much harder is this for other caregivers?’”
UAB receives prestigious BRAIN Initiative grant for deep brain stimulation in Parkinson’s disease
UAB investigators have won a prestigious White House BRAIN Initiative grant to study the potential benefits of new technology coupled with newly discovered biomarkers in deep brain stimulation for Parkinson’s disease.
The University of Alabama at Birmingham has received a BRAIN Initiative grant of $7.3 million over five years from the National Institutes of Health to study new technology that could improve outcomes from deep brain stimulation, an increasingly important treatment for Parkinson’s disease and other movement disorders.
The White House BRAIN Initiative — Brain Research through Advancing Innovative Neurotechnologies — is a collaborative, public-private research initiative launched by the Obama administration in 2013.
UAB is an international leader in neuromodulation, which involves using electrical, chemical or magnetic stimulation to modulate the function of the human nervous system. Deep brain stimulation is a neuromodulation therapy that uses electrical current to improve slowness, muscle stiffness, tremor and other disabling symptoms of movement disorders.
The BRAIN Initiative award will enable UAB investigators to assess next-generation DBS technology made by Boston Scientific. Its new system can direct current in specific directions in the brain, which will allow a more tailored approach to DBS adjustments in individuals. This directional DBS approach has significant potential to enhance improvement and to minimize potential side effects from stimulation.
“One of the difficulties in current DBS technology is that the electrical stimulus goes out in all directions, like a radio wave from a broadcast tower,” said Harrison Walker, M.D., associate professor in the Department of Neurology and the primary investigator of the study. “Based on previous studies in our laboratory, we believe that we can use this new electrode design to tailor the shape of the DBS electrical field in individuals and get better results with fewer side effects.”
To guide activation and adjustment of this complex new technology, the investigators will use recently identified biomarkers that measure brain rhythms triggered by DBS during surgery. One major goal of the study is to test whether these brain rhythms can serve as a roadmap in individuals to arrive at optimal stimulator settings with the directional DBS device as rapidly as possible.
After DBS surgery, patients will participate in a crossover study to compare outcomes with and without directional stimulation. This study design takes advantage of the ability to instantly change stimulator settings in an individual. At the end of the crossover study, investigators will carefully measure motor, cognitive and behavioral outcomes. Importantly, participants will be able to express which treatment strategy they preferred, based on changes in symptoms and quality-of-life measures that are most important to them.
UAB has performed more than 1,000 DBS and other stereotactic functional neurosurgery procedures for movement disorders including Parkinson’s disease. To refine targeting during the DBS procedure, neurologists and neurosurgeons perform brain mapping and measure the response to stimulation during surgery. The goal is to maximize potential benefits and minimize potential side effects during device activation a few weeks later in the neurology clinic.
|“One of the difficulties in current DBS technology is that the electrical stimulus goes out in all directions, like a radio wave from a broadcast tower. Based on previous studies in our laboratory, we believe that we can use this new electrode design to tailor the shape of the DBS electrical field in individuals and get better results with fewer side effects.”|
“There has always been a trade-off in deep brain stimulation, balancing the positive effects against the risk of unwanted side effects,” said co-investigator Barton Guthrie, M.D., professor in the Department of Neurosurgery at UAB. “It’s a challenging undertaking to determine the best placement of the lead, and to establish the appropriate contacts for activation and other stimulation parameters. Our hope is that, with the greater flexibility afforded by the new technology, coupled with the discoveries Dr. Walker has made in tracking biomarkers for effectiveness, we’ll be able to produce even better results for patients.”
“Advances in DBS technology such as emerging directional lead designs, are outpacing our clinical and scientific knowledge of how DBS actually works,” Walker said. “In addition to rigorously evaluating directional stimulation, this trial should allow us to identify physiological measures that could eventually be used to adjust DBS settings in real time based on the needs of the patient in daily life. Additionally, this work could serve as a foundation to guide neuromodulation strategies for other movement disorders and for emerging indications such as epilepsy, obsessive compulsive disorder, major depression and other disorders.”
“There is no better work being done in neuromodulation that at UAB, and this NIH BRAIN Initiative grant confirms the respect UAB enjoys in this field,” said UAB President Ray L. Watts, M.D., a practicing neurologist and expert in Parkinson’s disease. “This important research is made possible due to the strong collaboration between the Departments of Neurology and Neurosurgery, coupled with the multidisciplinary contributions from engineering, physical therapy, radiology, otolaryngology and biostatistics. This research will continue to showcase UAB’s important contributions in movement disorders, and could provide significant improvement in the quality of life for thousands of people with Parkinson’s disease.”
The scientific steering group for the BRAIN Initiative grant includes Walker and Guthrie, along with Arie Nakhmani, Ph.D., assistant professor of electrical and computer engineering; Gary Cutter, Ph.D., professor of biostatistics; Christopher Hurt, Ph.D., assistant professor of physical therapy; Daniel Phillips, Ed.D., instructor of otolaryngology; Roy Martin, Ph.D., associate professor of neurology; and Mark Bolding, Ph.D., assistant professor of radiology.
By Bob Shepard
UAB Media Relations
UAB drug study first effort to prevent onset of epilepsy in tuberous sclerosis complex
UAB and partners launch the PREVeNT study, aimed at preventing the onset of seizures in children with tuberous sclerosis.
Researchers at the University of Alabama at Birmingham have launched the first drug study aimed at preventing or delaying the onset of epilepsy in children with a genetic condition known as tuberous sclerosis complex. UAB is the lead institution and data center for the PREVeNT study, a national, multisite study funded by a $7 million grant from the National Institutes of Health.
Tuberous sclerosis complex is a genetic disorder that causes tumors to form in many different organs. TSC particularly affects neurologic functions, often leading to seizures, developmental delay, intellectual disability and autism. About 80 percent of children with TSC develop epilepsy within the first three years of life.
“There is a small window, perhaps two to three months in duration, between the first detectable signs of abnormal brain activity and the onset of seizures in infants with TSC,” said Martina Bebin, M.D., professor in the Department of Neurology in the UAB School of Medicine and the study’s primary investigator. “Those detectable signs can be discovered through electroencephalography, or EEG, before any symptoms are present. This window gives us an opportunity for preventive therapeutic intervention to delay or prevent the onset of seizures.”
Previous studies by Bebin’s research team identified EEG biomarkers of abnormal brain activity in infants with TSC. These biomarkers typically are detectable within the first four to six months of the infant’s life, and predate the onset of seizures by two to three months.
Using EEG, the new study will look for the presence of the biomarkers to determine when abnormal brain activity begins, and then launch a drug intervention during the window between the first signs of abnormal brain activity and before seizure onset. The researchers are hoping to determine whether early intervention will have a positive effect on developmental outcomes and delay or prevent the onset of seizures.
Martina Bebin, M.D., professor in the UAB Department of Neurology
The study will recruit 80 infants with TSC at seven sites nationally. EEG monitoring will begin as early as six weeks of age, followed by serial EEG testing during the first 12 months of life. At the first sign of abnormal brain activity, half the infants will receive vigabatrin, a medication used to control infantile spasms, while the other half receive placebo. At the onset of clinical seizures, all of the children will transition to the standard of care for infants with TSC and seizures. The investigators will follow the children for three years to monitor developmental progress and the onset and severity of seizures. “The aim of the study is to determine the impact of a preventive treatment with vigabatrin on the developmental outcome of children at 2 years of age,” Bebin said. “Traditionally, most children with TSC don’t see a neurologist until seizures begin. We want to examine the effects of early intervention, prior to the onset of seizures. If the intervention is successful, it could have a significant impact on clinical practice.”
Bebin says a better understanding of brain activity prior to the onset of seizures could lead to changes in how infants with TSC are monitored and when medical intervention should commence.
UAB is partnering with the Tuberous Sclerosis Alliance in the study. Other study sites are Stanford University, University of California at Los Angeles, University of Houston, Cincinnati Children’s Hospital Medical Center, Minnesota Epilepsy Group and Boston Children’s Hospital.
The study will begin recruiting subjects in fall 2016. Those interested in participating should contact the PREVeNT study at //firstname.lastname@example.org/">email@example.com, at www.clinicaltrials.gov, or through the Tuberous Sclerosis Alliance website at www.tsalliance.org.
By Bob Shepherd
UAB Media Relations