The Center for Community Engaged Rural Dementia and Alzheimer’s Research (CERDAR)
The Center for Community Engaged Rural Dementia and Alzheimer’s Research (CERDAR) has been established to tackle the growing challenge of dementia and dementia care needs in rural Minnesota. Current research projects address cultural factors in dementia care, rural dementia prevention, and technology to support caring for persons with dementia in their homes. We are also interested in identifying factors that would increase rural and Native American participation in ADRD related clinical trials. Our long-term goal is to improve the quality of life for rural Minnesotans impacted by dementia.
CERDAR researchers use community-based approaches to engage rural communities in projects to help address the high prevalence of dementia, and dementia care needs in rural Northern Minnesota. Over the long term, our plans are to expand to other regions in rural Minnesota. Initial data from these projects will help with the development of a larger research grant aiming to develop and examine interventions that could help improve early dementia screening, diagnosis, and quality of life for rural Minnesotans who suffer from Alzheimer’s Disease and Related Dementias (ADRD).
This research is important because Minnesota’s population is getting older and rural areas, on average, have a larger number of older adults. Estimates say in 20 years people over 65 will outnumber people under 18 in the state for the first time. Compared to Wisconsin, Iowa, and North and South Dakota, Minnesota is expected to have the largest increase in people with dementia. This will present many challenges for the people diagnosed with dementia and their families, particularly in rural Minnesota.
Our work is guided by a Rural Research Advisory Group at the Memory Keepers Medical Discovery Team. Over the next year, we will establish two Community Advisory Groups (CAGs) based in Northern Minnesota. The CAGs will include a team of local health and community members with expertise in dementia, and dementia care needs. CAG members will meet once a month with the CERDAR team to help advise, develop, and approve all aspects of the research process, provide input about ethical considerations and research activities, and will contribute to the analysis and distribution of research findings. If you are interested in participating in our research or becoming a member of a Community Advisory Group, please call the CERDAR phone number or access the CERDAR Registry website to learn more about the project. The Registry website lists all active CERDAR projects, along with instructions for how to become a research participant in one of our studies and how to register for updates.
Currently, there are five CERDAR research projects in development, each involving different groups of investigators.
Socio-Cultural Factors in Rural ADRD Care Experiences
The aim of this research project is to understand rural peoples’ knowledge of, and experience with, dementia and the social, cultural, and structural barriers prevent access to dementia care and services. Living in a rural area plays an important role in how people with dementia are cared for and what their experiences are like. Learning more about this will help people with dementia, their caregivers, and their healthcare providers. We will be interviewing 100 rural residents, including healthy older adults, physicians and other health care providers, and formal and informal caregivers to people with dementia (PWD). We are interested in peoples’ views of healthy cognitive aging, as well as dementia, and the lived experience of caregivers and PWD. Because of the COVID-19 pandemic, we will be conducting these interviews via telephone or ZOOM. Once a COVID vaccine is developed and widely available, community-based researchers will also conduct in-person interviews with people with dementia.
Minnesota Rehabilitation Intervention for Dementia Prevention with Exercise (MN-RIDE)
Cardiovascular (heart) disease increases the risk for dementia-related illness. CERDAR researchers are interested in working with older adults living in rural Minnesota who might be at risk for developing dementia, and who are willing to participate in a community-based exercise and virtual reality cognitive training program. Participants will be screened to make sure exercise is safe for them. As part of this project, participants will have a stationary bike delivered to their home and will be supported and monitored remotely during 12 weeks of exercise. They will also have their fitness and memory assessed at two different times. The long-term objective of this project is to develop a rural dementia prevention program to reduce cardiovascular risk factors associated with the development of dementia-related illness.
Developing Wearable Technology for Caregivers and PWD in Rural Areas
CareBand is a wearable wristwatch-like device for People with Dementia that helps caregivers to monitor the location and activity of their loved ones. We are interested in further developing and adapting this device for use in rural areas. We believe the CareBand technology will make it easier for rural people with dementia to age in their homes and avoid having to go to a care facility. For more information on the device go to: www.carebandremembers.com. We will recruit 20 teams of people with dementia and their caregivers to participate in our study. The people with dementia will be fitted with the CareBand and we will install small-signal devices in participants’ homes at no charge. The CareBand will allow the person caring for the participant and the researchers to track the movement and behaviors of the person living with dementia. The caregiver receives information on the movements of the person they are caring for on an App. We will then interview the participants and their caregivers to see how the wristband worked and what they liked and didn’t like about it, and whether the information the CareBand provides was helpful to them on a daily basis.
The Dementia-Specific Epidemiological and Health Service Utilization Profiles in Rural Minnesota
Until now, researchers have looked mostly at people living in cities when they develop programs and services to help people with dementia and their caregivers. We think it’s important to include rural and Tribal areas in these studies as well. The MK-MDT is collaborating with the Essentia Institute of Rural Health to analyze existing health record data to see what we can learn about how often dementia is diagnosed, and how widespread various types of dementia are in rural Minnesota compared to other rural and urban areas, and how people with dementia used services over time.
Lay the groundwork for rural and Indigenous participation in clinical trials associated with Alzheimer’s Disease Research Centers (ADRCs)
ADRCs are research centers devoted to clinical and biomedical research on Alzheimer’s and related dementias. One of these, exists, for example, at the Mayo Clinic in Minnesota, and another at the University of Wisconsin in Madison. These centers rarely include rural or Indigenous patients in their clinical trials, which require patients to undergo a variety of biomedical and genetic tests. Living in a rural area appears to be a risk factor for dementia, but there is little emphasis placed on ensuring rural participants are included in ADRC clinical research. We are interested in learning about what factors would prevent or help attract more rural and Indigenous people to participate in ADRD research. We believe that geographic distance, costs of travel, and other factors act as barriers to rural patients’ participation in clinical trials. We will conduct key informant and focus group research to find out more about rural and Indigenous attitudes toward participating in ADRD clinical trials.