A new project aims to increase the safety and well-being of rural residents caring for a family member with dementia.

Providing care for a parent or spouse with dementia is a demanding job, and it can be especially challenging for rural residents who are juggling both caregiving and farm work.

A new training resource that addresses the unique safety and cultural concerns of farm families caring for a loved one with dementia is being tested by researchers in the Midwest. The project, funded by a grant from the National Institute for Occupational Safety and Health, is co-led by Kanika Arora, associate professor of health management and policy at the University of Iowa, and Julie Bobitt, assistant professor of medicine at the University of Illinois Chicago.

Dementia and Agriculture

Dementia is an overall term used to describe a decline in mental ability that interferes with daily life. Dementia isn’t a normal part of aging; instead, it’s a progressive brain disease that affects memory, reasoning, judgement, and behavior.  Alzheimer’s disease is the most common type of dementia and affects an estimated 6.7 million U.S. adults.

An earlier study led by Arora found that long-term agricultural workershad46% greater odds of developing dementia than non-agricultural workers. Potential risk factors for dementia include midlife hearing loss, loneliness, social isolation, pesticide exposure, and traumatic brain injury.

“Not only do older farmers have a higher risk of dementia, but dementia actually leads to a lot of safety issues,” Arora says. Farming is one of the most dangerous occupations, and farm environments pose numerous hazards, including machinery, livestock, and firearms. A missed or delayed dementia diagnosis could lead to greater safety concerns, Arora adds.

Bobitt and Arora found that while there are resources that focus on agricultural safety or general dementia caregiving, none are tailored to the needs of agricultural families. “So that’s where the idea came from, that we need to have something that addresses the specific issues of farm families coping with dementia,” Arora explains.

Unique Concerns

Among the concerns specific to rural populations, Arora notes that farmers who develop dementia are more likely to continue working for longer than those who work in other occupations, which can lead to unsafe behaviors on the farm.

However, restricting a parent or spouse from taking part in farm work they’ve done most of their life is difficult, as is having conversations about the transition of farm ownership or succession planning. “Farm families really find it hard to take away [an older farmer’s] independence,” Arora points out.

Talking openly about a family member’s condition is another issue. “There is a lot of hesitancy in terms of sharing a dementia diagnosis with others,” Arora says. “There’s stigma associated with dementia in some communities.”

Farmers often have a very strong culture of self-reliance that can make asking for help difficult. Add in a lack of dementia care resources in rural areas and the stress of caregiving while working a dawn-to-dusk job, and the situation can be overwhelming for families.

Interactive Training

To help develop the training modules, the researchers assembled a research community advisory board comprised of people with backgrounds in agriculture, psychology, neurology, education, and organizations that work directly with farmers. They also conducted interviews with farm families to ensure the content, format, and delivery of the training reflected their lived experiences and preferences.

The four-part training covers 1) dementia basics, 2) the progression of dementia and safety concerns on the farm and at home, 3) communicating with persons with dementia, and 4) resources for rural dementia patients and caregivers.

The researchers pilot tested the training with several farm families and are refining and finalizing the material based on their feedback. The research team plans to begin recruiting participants – 50 families from Iowa and 50 families from Illinois – in summer of 2025 to take part in the four-week virtual training workshop.

The interactive sessions, led by Extension Specialists from Iowa State University and University of Illinois, include photos, videos, and perspectives from caregivers who are farmers and ranchers.

The nationwide Cooperative Extension System is a familiar information resource for agricultural communities, and “extension specialists are trusted by rural families,” Arora says. The training also includes safety tips from Easterseals, another partner organization working with the project. 

Next Steps

Once the workshops are completed, the investigators will evaluate how the training changes caregivers’ knowledge about dementia, caregiving burden, self-efficacy, and the actions they take to improve safety, communication, and legal and financial planning.

“We’re creating a training that truly speaks to the realities of farm life — where the boundaries between home, work, and caregiving are often blurred,” says Bobitt. “Our goal is to provide rural families with practical tools that not only increase safety but also support their emotional well-being as they care for a loved one with dementia.”

If the training is shown to be effective, the program potentially could be expanded to other states through the Extension System. Arora says that health care providers and agricultural health and safety educators are another potential audience for a similar training.

“I’m hearing that providers want to know more about why this is an important issue for farmers, why early detection is even more important in this case, and how to address some of the safety issues when they speak to a farm family who has a family member with dementia,” Arora says. “I think that could be another part of the future of this project.”