Caregivers are constantly put in extremely challenging positions. They give their time, energy, and resources daily, often for no concrete compensation and for an indefinite period of time. The challenges they face often get more challenging as the seniors in their care age and experience more physical decline. One way to help caregivers perform better and possibly deflect burnout is to encourage empathy and a shared understanding of the experience of their loved ones.
In recent years, scientists and companies have been seeking ways to help those without physical impairments or disabilities understand what life is like for those who have them. This generally takes the form of detailed simulations that walk caregivers, friends, and family through daily activities with the challenges older people face, such as low vision or dementia. However, there are real concerns as to whether this helps or harms the relationship between caregiver and care receiver
The core idea
The foundation of any relationship usually consists of mutual interests, needs, and trust. Add a healthy mix of empathy and communication, and a relationship can sail smoothly, correcting course when necessary. Although caregiving can often feel like a one-sided relationship, it does not have to be that way. Simulations can show how much independence and skill people living with disabilities actually do have.
By stepping into the shoes of someone who struggles with physical drawbacks, caregivers can gain deeper insight. Caregivers can get an idea of their charges’ coping mechanisms. They may also get new ideas about changes they can make. These changes can help patients live more independently or safely. This in turn may ease their burden as caregivers.
Safety is one of the best benefits of simulations. For example, simulations can show caregivers the need for uncluttered and uncomplicated housing arrangements. They may demonstrate the need for brightly-colored labels on certain items or a specific organizational system for easy access. All of these make the life of an older person safer. The person is less likely to trip over or to run into objects on the floor or hastily-arranged furniture, grab a sharp object out of the wrong drawer, or knock over objects that are too close to edges.
However, it seems that those who undergo simulations of disability do not always emerge with helpful reactions. A 2014 study published by Social Psychological and Personality Sciences showed that many are shocked by the lack of vision in blindness simulations. They may judge that blind or low-vision people are less capable of taking care of themselves than they actually are.
The authors of the study, Silverman, Gwinn, and Van Boven, call this “the self-centered nature of judged capabilities of disabled people.” This means that those who don’t have disabilities often try to frame the disability in their own context. They do this instead of handling it like someone who has coped with the disability for a while. They also don’t consider that they could work around the disability with some assistance. This means that simulations can sometimes distort people’s attitudes toward challenges rather than help them be more solutions-oriented.
How to avoid the backslide
A caregiver’s goal is always to provide better and more effective care for the elderly loved one, especially in ways that make everyone’s lives easier. If a caregiver goes through a simulation in order to better understand a new perspective, there are a few important things to remember.
Simulations are not exact replications of real experiences. Scientists have worked very hard to make simulations seem real. Yet the reality of being able to jump in and out of a disability itself provides a very limited experience. Talking openly and honestly about similarities and differences helps put the experience in perspective.
For many people, after a while disabilities become just another part of life. Some disabilities really do make life more difficult. However, disabilities such as low vision or limited mobility are manageable. Of course, this is only possible as long as the proper living arrangements and equipment are provided. Disabilities may seem to shake the foundation upon which people without disabilities live. After encountering a simulation, it is important for the subject to remember that the purpose of it is to help. The goal is to provide the right adjustments, not sit in sadness over lost or changing abilities.
After the simulation, caregivers and their patients can make a plan. This is important. These plans should include how to incorporate changes that the experience of simulation has suggested. It is important to refuse to let the experience to reinforce any limitations. Instead, it is best to focus on how more independence is possible within the limitations. This plan should be frequently reevaluated and readjusted as time goes by and the elderly loved one ages.
Understanding that simulations are removed from reality, that disabled people develop coping mechanisms, and that simulations are solutions-oriented is important. Keeping these three points in mind, simulations can be successful tools to guide better care.
Duffy, Maureen. (January 22, 2015). New Research: “Blindness Simulation” Activities May Do More Harm than Good. VisionAware.org. Available at http://www.visionaware.org/blog/visionaware-blog/new-research-blindness-simulation-activities-may-do-more-harm-than-good-1746/12. Retrieved July 24, 2016.
Fork in the Road Vision Rehabilitation Services, LLC. Low Vision Simulators. Available at http://www.lowvisionsimulators.com/. Retrieved July 24, 2016.
Novak, Bill. (July 18, 2016). Dementia-friendly environments goal of new Dane County initiative. Wisconsin State Journal. Available at http://host.madison.com/wsj/news/local/dementia-friendly-environments-goal-of-new-dane-county-initiative/article_5adee61b-61d7-5933-997d-56a5904facf0.html. Retrieved July 24, 2016.
Silverman, Arielle M., Gwinn, Jason D., and Van Boven, Leaf. (November 21, 2014). Stumbling in Their Shoes: Disability Simulations Reduce Judged Capabilities of Disabled People. Social Psychological and Personality Science. Sage Journals. Available at http://spp.sagepub.com/content/early/2014/11/20/1948550614559650.abstract. Retrieved July 24, 2016.