Isolation. Lack of access to care. Transportation issues. All of those things are factors in helping to support aging rural residents with Alzheimer’s or dementia. But researchers at the University of Minnesota are working to assess how innovations in that care from rural communities are helping those patients.
It’s estimated that more than 7 million Americans have Alzheimer’s. According to recent research on Alzheimer’s disease and related dementias (collectively referred to as “ADRD”), there is no definitive answer as to how many rural residents may suffer from the diseases. However, that same study found that rural residents are more likely to have a higher prevalence of chronic health issues that put rural residents at increased risk of ADRD.
“Rural residents had significantly higher prevalence of hypertension, obesity, diabetes, and hearing loss compared to urban residents. Disparities were most significant among adults aged 45–64 years and in the South/Midwest region,” the study found. “Rural U.S. adults face a higher burden of modifiable dementia risk factors, particularly cardiometabolic and sensory impairments. Targeted public health strategies are needed to address structural inequities and improve dementia prevention in rural communities.”
But reaching rural residents with ARDR can prove difficult. Researchers said rural and tribal residents also often face delays in diagnosis, as well as limited access to healthcare, and transportation challenges.
Addressing these issues requires specializing care to the community, researchers said. Three Minnesota researchers are tackling the problem from three different angles and identifying how to meet the needs of rural communities and their ARDR patients.
Cliff Whitung, a social worker and public health researcher at the University of Minnesota Medical School’s Duluth campus, is working with Indigenous communities to improve the accuracy of dementia-related data in those communities. ARDR research primarily focuses on more affluent, urban residents, which leads to screening tools and prevention strategies that fail to meet the needs of lower-income and rural communities, he said.
Whitung said up to 45% of dementia cases are preventable and are related to social conditions like educational attainment, social isolation and chronic health conditions. That puts older adults in rural and Indigenous communities at an increased risk of dementia.
“If you grow up in a small farming community, for example, you might have a higher probability of experiencing social isolation as you age, and as your mobility changes, and those things probably are all related to some form of dementia risk in later life,” Whitung said. “But when we look at the same structures of rurality among indigenous communities, we actually don’t see the same trend. We see very similar and potentially even lower probabilities of having dementia in rural and tribal communities… relative to those living in cities. I think this is exciting evidence in support of the strengths of social connection, and of caring within the community.”
His research seeks to flip the narrative on Indigenous communities by focusing on their strengths and how they meet the challenges of health disparities. Working with a group called Memory Keepers, he’s documenting the cultural understandings of dementia in native communities.
Memory Keepers dives into how to improve dementia outcomes in Indigenous and rural communities. Whitung said there was plenty of research about the negatives in rural and Indigenous communities, but not a lot about the positives.
Looking at nationally data, Whitung found that Indigenous older adults report higher levels of social cohesion or connection to their neighbors and family members than do white adults living in rural communities. His work is focusing on providing quantitative research that shows those community bonds can actually help lower the risk of dementia-related diseases.
One other factor in preventing dementia is physical activity, according to Dereck Salisbury, an associate professor with the University of Minnesota School of Nursing. But rural residents often face barriers, including a lack of gyms and workout spaces, and a lack of transportation to get to exercise spaces that do exist.
“They have really poor outcomes after diagnosis (with dementia and Alzheimer’s), higher mortality rate, poor quality of life, and they even get suboptimal care, so we had a huge problem.” Salisbury said in an interview with the Daily Yonder. “When we looked at this, we thought, can we do something to slow this down or prevent it?”
His solution was to test whether or not getting them active would help. Salisbury led a pilot study called MN Ride that provides rural residents with exercise bikes, and then monitors their use. Through home visits, online coaching and online exercise classes, participants in the program have maintained an 85% attendance rate.
And the results showed improvement, he said. Measuring symptoms for depression, anxiety and aerobic fitness, the research showed the exercise had positive effects and significantly reduced symptoms of anxiety and depression while improving the participant’s quality of life, particularly their physical quality of life.
Salisbury said his next step is to apply for grant funding to take it to a larger clinical trial of more rural residents across Northern Minnesota to generate more data on exercise’s effects on not only the symptoms previously measured, but also on cognitive changes and memory function.
For University of Minnesota researcher Joseph Gaugler, fighting ADRD in rural communities starts with identifying how rural communities are innovating dementia care on their own. In an interview with the Daily Yonder, Gaugler said he is learning from rural residents across the state what makes a community “dementia-friendly.”
Starting in 2018, Gaugler made a commitment to travel to all 87 of Minnesota’s counties to inform the residents about existing resources for ADRD patients and their caregivers, as well as to hear about what communities were doing for their people.
So far, he’s been to 47 communities across the state. What he’s found is that many rural communities come together to provide resources when patients need them.
“You see a lot of that in those initiatives happening in what’s called the dementia-friendly community movement, where communities are basically identifying different businesses, organizations, and resources… to become more dementia friendly,” Gaugler said.
“It’s those types of initiatives that are particularly well suited for rural communities. In these kinds of instances, we likely have to think outside the box, outside of traditional formal healthcare institutions and organizations, and get a better sense of the landscape of what really is available and out there that we can help leverage for people living with dementia.”
The initiatives and research proves that providing care for rural residents with Alzheimer’s disease and dementia just isn’t a one size fits all solution, said Carrie Henning-Smith, co-director of the University of Minnesota’s Rural Health Research Center.
“Rural places are not monolithic,” Henning-Smith said in a statement. “Rural residents are diverse and their risk factors and experiences with dementia will vary from person to person and place to place.”