KU News Service
LAWRENCE — Dementia researchers are convinced the path to beating back the life-robbing disease goes directly through clinical trials fueled by research volunteers willing to join the battle. That's why the experts at the University of Kansas Alzheimer's Disease Center put so much energy into recruiting people to participate in its abundant number of active studies.
One way the KU ADC is hoping to supercharge its research recruitment efforts is through a three-year, $4.3 million grant it earned from the National Institutes of Health that will elevate dementia care in communities across Kansas, making Kansas City and the surrounding region more prepared.
"Our number one barrier to a cure is recruitment of volunteers to participate in research," said Jeff Burns, M.D., co-director of the KU ADC and a professor of neurology at the University of Kansas Medical Center. "People want to participate, but access and knowledge of the ongoing studies are barriers. We want to overcome that by improving care in the community and making this a real community effort, linking primary care physicians and patients with researchers."
The KU ADC will take an ambitious three-prong approach to executing the grant by creating a new community engagement tool, working with select community partners to strengthen its relationships with communities of color and in rural Kansas through outreach and education, and expanding an already-established community-based initiative for providers.
The broad initiative aims to produce enhanced care for people with dementia as well as an improved ability to recruit volunteers for its clinical trials all at the same time. It also is designed to help the city, state and region become more capable of identifying, supporting, and providing resources and services for people with dementia and their families.
"Through the grant we'll grow our network of primary care physicians, grow a network of community members and patients, grow our network of community organizations that partner with us, and align all around the goal of making Kansas City and Kansas more ‘dementia-capable,'" Burns said.
Rewriting the recruiting script
As part of the grant, the KU ADC launched MyAlliance for Brain Health this winter. The free community engagement and education effort is open to anyone with an interest in brain health. Its practical aim is to provide individuals with regular communications such as insights customized to their interests and needs; tips on eating, exercise and lifestyle; advice and support for caregivers; special invitations to webinars and other events; and easy access to research opportunities.
Meanwhile, an underlying goal of the initiative is to help grow the pool of potential research-ready volunteers and boost the likelihood they will elect to get involved when research opportunities arise. To push this goal forward, the KU ADC will use MyAlliance to change its approach to recruiting research volunteers, which has traditionally been rooted in appeals based on altruism - for example, you should participate in clinical research for the sake of the greater good to society. Now the KU ADC will shift toward an approach based on building positive relationships with potential participants while serving as a trusted community partner and source of valuable information and resources.
"We're building a coalition and our research is a collaboration by all the partners," said Eric Vidoni, PT, Ph.D., director of outreach, recruitment and engagement at the KU ADC and an associate professor of neurology at KU Medical Center. "Whether you're a doctor who wants better care for your patients, an individual who wants access to our programming, or a community organization recognizing more dementia in your constituents and looking for resources, we want to provide a valued service to you. In providing that service, we can introduce the idea of research participation."
The approach is designed to deliver a personalized experience that benefits everyone involved.
"It's really all about education, engagement and empowerment for virtually anyone interested in brain health and/or in any way experiencing or managing Alzheimer's or dementia," said Deb Brook, director of outreach and engagement at the KU ADC. "We want to be the trusted resource for this type of information, and in building that trust with people, we want to hear what they need, work to meet those needs and continue to engage with them throughout their relationship with us."
Strengthening community relationships
The KU ADC also will use the grant to strengthen its ties with communities of color and rural communities across Kansas by expanding the advisory role and educational and outreach capabilities of three of its long-standing community partners, the Black Health Care Coalition, El Centro, Inc., and OCCK.
These groups already play an important role in the KU ADC's drive to build and diversify its current research volunteer pool. Perhaps more importantly to the success of the grant and its overall aims, these organizations are frequently on the front lines interacting with the public about dementia care and resources in the community. In preparation for their beefier roles, the partners will receive additional training and resources, including guidance on how to engage people in the research process.
For instance, El Centro's promotoras de salud, or health promoters, who are trained volunteers who provide education and outreach on healthy lifestyles, will be introduced to a new curriculum designed by the KU ADC. The community organization's health navigators, who help their clients access health care services, will get additional in-depth training around dementia as well as a new, easy-to-use screening test for memory and thinking issues, a tool they've never had before.
"A lot of times in our community, we think it's just that our loved ones are older, but the truth is, it could be dementia, and if it is, help is available," said Erica Andrade, chief program officer with El Centro, Inc., who added that through this grant, the organization will be able to help spark more important conversation around the disease. "Just being able to encourage more families to talk about dementia and point them to the appropriate resources is what success looks like with this grant."
El Centro, Inc., annually serves around 750 people through the work of the promotoras de salud and health navigators and has been using diabetes as a point of reference for the predominantly Latino population it serves when talking about dementia. That won't change, but Elizabeth Reynoso, director of communication, education and outreach, hopes the grant will expand the audience who hears the message.
"We try to explain it's not just the older population that has diabetes. It's the same with Alzheimer's disease. We try to explain how important it is to exercise, eat healthy and be more mentally active," Reynoso said. "Some of our clients have access to all our resources and services, but for a variety reasons, others may not. One of my goals with this grant is that we push for those individuals who may not have the same level of support and that we work hard to educate everyone and provide the same opportunities for everyone."
Improving care, powering research
The third prong of the multi-strategy approach the KU ADC is taking with the grant involves expanding the ability of its already established Cognitive Care Network to provide important social work support to more people with dementia and train more primary care physicians to treat them. By extending the reach of the Cognitive Care Network, the KU ADC believes it can not only enhance the care of people with dementia, but also boost the number of people with whom it shares information about its available research opportunities.
The Cognitive Care Network trains health care providers, accepts referrals from participating providers for individualized care coordination and offers caregiver support groups. Free to primary care physicians, the network is currently made up of 45 providers based mostly in the Kansas City area as well as Barton, Russell and Wilson counties.
"Ultimately, what we hope is different at the end of this grant is that every person who notices cognitive changes can get those concerns addressed, and if it is a disease process such as Alzheimer's, that it is addressed early and in a way allows people with dementia and their families to feel empowered," said Michelle Neidens, director of the Cognitive Care Network at the KU ADC.
Ambitious goal
While the multiple initiatives under the grant are clearly interrelated, the KU ADC's Brook noted the three "legs of the same stool" will also be driven somewhat independently.
"Obviously any one of these three parts could have been its own grant, but part of the beauty lies in the ambitious goal of moving all three vital components forward together, faster," she said.
The unique approach the KU ADC is taking with this grant was inspired by an earlier $1.4 million investment from several Kansas City-area donors. The gifts, made through KU Endowment to the KU ADC and its partner, the Global Alzheimer's Platform Foundation, were aimed at expanding the center's research enterprise and doubling its capacity for clinical trials. Donors included The Ann and Gary Dickinson Family Charitable Foundation of Kansas City, Mo., John and Marny Sherman of Kansas City, Mo., and Bradley and Elizabeth Bergman of Overland Park, Kan.
With the larger NIH award, the KU ADC will move closer to the objectives set by those earlier gifts as it is hoping to grow its network of contacts by 1,000 research volunteers, primary care physicians, community organizations and other community members. Meanwhile, a less tangible, but equally crucial result of the effort could be an increased number of providers, social workers and health care navigators specially trained to recognize, screen for and manage dementia.
"My big goal is for this grant is to help make Kansas City and the surrounding region the most dementia capable and research-ready place in the world," Vidoni said. "To me, if we can move the needle on that, it will be the real success."
For more information about MyAlliance for Brain Health, the KU ADC and research opportunities, visit the KU ADC website. To learn more about the Cognitive Care Network contact Michelle Niedens at 913-945-7310 or email [email protected].