Social & Community

Research Gives Key Insight Into Caregiving Roles, Planning for Long-Term Care

Those who provide care to older adults occupy a unique role that often involves balancing work and family responsibilities with the many challenges of caregiving. And for those who live in rural communities, the caregiving role can be especially difficult. "Rural families in general tend to have fewer financial resources and less access to healthcare than people in other communities," explains UAB Assistant Professor of Nursing Yvonne Eaves, Ph.D., whose research in caregiving within rural African American families provides important insight for all caregivers about how to best manage healthcare transitions as well as anticipate and plan for long-term care needs. "Based on my research, I'm encouraging caregivers and their family members to think about these issues ahead of time before they're faced with a crisis situation," says Dr. Eaves.

Caregiving In Rural African American Families

Research conducted by Dr. Eaves found that most older adults had a primary caregiver as well as others in the family who assisted when the primary caregiver was at work or became ill. "Sometimes, the primary caregiver had more than one job, and this individual needed someone to step in," explains Dr. Eaves. In most cases, extended family or friends assisted the primary caregiver when needed. Dr. Eaves says that although most caregivers were female, the composition of family members assisting with the caregiving role often included both males and females of various ages. "The primary challenge for caregivers in rural communities is access to services. For example, many rural counties don't have a hospital, which forces families to travel outside of their area when the senior adult in their care suffers an acute illness or requires long-term care," Dr. Eaves says.

She also emphasizes that although earlier research has shown African American families to have strong social support networks, recent research indicates that this is not always the case. "The assumption that all African American families have strong social support could lead healthcare professionals to think they don't need to worry as much about advising, guiding, and assisting these families regarding issues of caregiving and long-term care planning."

Managing Healthcare Transitions and Changing Caregiver Roles

Many caregivers view a transition as a physical relocation. But, a transition actually represents anything that changes the caregiving situation. "For example, the declining health of the caregiver — which often happens when an older spouse is providing care — represents a major transition. In this case, adult children often must step in to assume the caregiving role," explains Dr. Eaves. Also, because most older adults have more than one chronic health problem, a worsening of any one of these conditions often requires the need for professional, acute care within the home or a hospital setting. "I try to help families recognize and prepare for these transitions so that they'll be able to find the extra caregiving resources they may need to deal with these changes," Dr. Eaves says. For example, most healthcare transitions may require such actions as enlisting help from other family members, contacting the primary care physician to assist with finding home healthcare, or making a decision about long-term care placement. "Also, it's important to remember that even when families place a loved one in a nursing home setting, caregiving usually doesn't completely stop. Most families assist with caregiving even in a nursing home," explains Dr. Eaves. "When families are able to anticipate and prepare for these transitions, it greatly alleviates stress for those involved in caregiving."

Planning for Long-Term Care

For many families caring for older adults at home, the idea of placing their loved ones in a nursing home or other long-term care setting is difficult and emotionally complex. "In my research, families would often tell me that placing their family member in a nursing home would be a last resort. Often, this last resort crept up on them sooner than expected," says Dr. Eaves. Sometimes, caregivers are reluctant to place loved ones in a long-term care setting because of concerns about quality of care or cleanliness of the facility. "Also, feelings of guilt and obligation often surface on the part of the caregiver," explains Dr. Eaves. "Caregivers may be thinking, 'I should be the one taking care of them.'"

Dr. Eaves says her research has underscored the need for families to think about extended care before being confronted with a crisis situation. "I'm also encouraging family members to discuss long-term care options with the older adults in their care while they're still able to participate in the process," she says. According to Dr. Eaves, families should become thoroughly educated about long-term care options before the need for such care arises. "Many rural families may have to travel outside of their county for long-term care, so visiting facilities ahead of time is even more important for these families," Dr. Eaves explains. She says that as part of the research process, families should also determine insurance and payment issues, which will likely play an important role in selecting the facility. "Previous research has shown that families are not satisfied with the help they are receiving from healthcare providers regarding assistance with decisions about long-term care," says Dr. Eaves. "Families involved in caregiving should take an assertive role in visiting and evaluating several long-term care options. Then, they can have peace of mind in knowing they have a plan when the need for long-term care arises."