Two Philadelphia universities have received large grants from the National Institute on Aging (NIA) to study very different aspects of dementia.
Drexel University was awarded $4 million to test whether a new website can help family caregivers manage some of the most troubling behaviors associated with Alzheimer’s disease and other forms of dementia. The NIA gave researchers at the University of Pennsylvania $18 million to answer basic-science questions about the role genes play in Alzheimer’s and Parkinson’s diseases and other dementias, as well as how these diseases spread in the brain.
For the Drexel project, Laura Gitlin, dean of Drexel’s College of Nursing and Health Professions, is partnering with Helen Kales, chair of psychiatry and behavioral sciences at the University of California, Davis. They will test a computer-based program called WeCareAdvisor. It reduced stress and improved confidence in caregivers during a pilot study. Based on an intensive, home-based, one-on-one training program, WeCareAdvisor could be a way to make information about common care-giving problems more accessible, Gitlin said.
Family caregivers typically receive no training from doctors about psychological symptoms of dementia or how to manage disturbing behavior without drugs. Families aren’t told that dementia involves more than memory, she said. Behavioral symptoms are part of the disease and can be worsened by the home environment, infections, or medications.
“Patients and their families are often told, ‘I’m sorry, there’s nothing we can do,’” Gitlin said. “There are things we can do that make things better.”
Early in the disease process, caregivers often are upset about a loved one’s withdrawal or apathy, as well as repetitive questions. Shadowing, or following a loved one around all the time, is also common and can become annoying. As the disease progresses, many caregivers are flummoxed by people with dementia who reject efforts to help with bathing or dressing, and by wandering, restlessness and pacing, rummaging, and anger. In late stages, crying and repetitive “vocalizations” can be frustrating. “These kinds of behavior are not amenable to medications,” she said.
Caregivers who enter the clinical trial will be given iPads, which will link to the WeCareAdvisor website. There will be a control group, but all participants will eventually get to try the web-based advice. The site includes a Caregiver Survival Guide, which provides information about different types of dementia and common behavioral problems. It also includes a web-based management section based on the DICE approach — describing, investigating, creating, and evaluating strategies.
If, for example, a caregiver's husband tries to leave the house every night at the same time, the program would ask the caregiver a series of questions about what is occurring and when. If his behavior changed suddenly, that could be a sign of an underlying infection or a reaction to medication. The caregiver would be prompted to call a doctor quickly. Otherwise, the program might suggest creating a new routine that involves starting an activity the husband would enjoy just before his wandering typically occurs. If that doesn't work, there would be more suggestions.
If WeCareAdvisor works, Gitlin hopes doctors in the future will tell caregivers about it as soon as patients are diagnosed. “We want this to be part of routine care,” she said.
The study begins around February, Gitlin said, but caregivers interested in participating now can contact project manager Sokha Koeuth at 267-359-5586 or firstname.lastname@example.org.
Penn’s $18 million is going to the Center for Neurodegenerative Disease Research (CNDR) for four projects that will explore the relationships among different types of dementia that involve the spread of misfolded proteins in the brain. Virginia Man-Yee Lee, codirector and cofounder of CNDR, will study alpha-synuclein, a protein that changes in Parkinson’s disease, in test tubes and cell culture to learn more about how misfolding happens. John Q. Trojanowski, who shares leadership of the center with Lee, will study alpha-synuclein in animal models.