Long-distance caregiving is a growing phenomenon, but most research focuses on caregivers who live close.
More than 30 million Americans provide unpaid help, such as assistance with activities of daily living, to a frail family member or friend who is often living with cognitive impairment, according to a report from the National Alliance of Caregiving (NAC) and AARP.
Research on family caregiving to frail older adults has produced a rich knowledge base on the processes and consequences of caregiving. Those consequences often include increased stress and burden, and negative mental health outcomes like depression. Family caregivers or informal caregivers are also at risk for negative physical health outcomes. Plus, the time and effort spent helping a frail loved one often interferes with other family relationships and work commitments.
Over the past 2 decades, researchers and practitioners have developed effective psychosocial interventions to reduce caregiving stresses and alleviate negative mental health consequences among family caregivers. Resources for Enhancing Alzheimer’s Caregiver Health (REACH), funded by the National Institutes of Health, is one such large-scale intervention effort.
WHEN GEOGRAPHY INTEFERES WITH CAREGIVING
In our increasingly mobile society, long-distance caregiving is an already common and a growing phenomenon. As many as 11% of family caregivers in the U.S. live more than 2 hours away from the care recipient (NAC and AARP, 2009).
Yet, almost all existing research has focused on caregivers who live in close proximity to the care recipient. In addition, the majority of evidence-based interventions were designed and tested with these proximate caregivers, and do not consider the unique circumstances of long-distance caregivers.
Several years ago, I embarked on a journey with my colleagues Dr. Amy Horowitz of Fordham University and Dr. Kathrin Boerner of the University of Massachusetts Boston, to try and fill this research gap. With a grant from the National Institute on Aging, we conducted a study that provided insights into the complexity of long-distance caregiving, the challenges these caregivers face, and the types of supports they need.
THE CHALLENGES OF DISTANCE
Close to 50% of long-distance caregivers in our sample were helping an older adult who was living in the community and experiencing significant cognitive impairment. This group of caregivers reported levels of burden, depression, and anxiety that were higher when compared to long-distance caregivers with care recipients living in a nursing home.
The study’s rich qualitative data showed that two-thirds of long-distance caregivers in our sample mentioned at least one distance-related challenge. The most prominent distance-related challenges were related to the caregivers’ difficulties:
- Conducting caregiving tasks, such as arranging formal services, from a distance.
- Monitoring the care recipient’s well-being and connecting with a care recipient from afar.
- Traveling to see the care recipient. This travel can cause the caregiver physical and emotional strain, and can result in financial hardship and time constraints.
Clearly, we need to design and test interventions that can alleviate some of these challenges. For example, videoconferencing technology that helps the long-distance caregiver connect visually with the care recipient and with formal caregivers could improve the distant caregiver’s quality of life.
My colleagues and I are currently planning to design and pilot-test such an intervention, and then work to integrate that intervention into practice with family caregivers. We look forward to sharing the findings from this work in the near future.
Verena Cimarolli, Ph.D., is senior health services research associate in the Washington, DC, office of the LeadingAge LTSS Center @UMass Boston. Her research focuses on the psychosocial challenges faced by older adults with chronic illness, and strategies for supporting those adults and their families.