When treating someone with dementia with comprehensive occupational therapy, this typically requires a family-centered approach. Treatment is provided for the person with dementia, and furthermore, educational resources are provided for their caregiver. While there are clinical assessments that exist to be able to analyze the capabilities of a dementia patient, occupational therapists are not able to really know or measure the caregiver perceptions regarding the abilities of the patient—until now.
The Functional Capacity Card Sort (FCCS) Tool
Led by Catherine Verrier Piersol, Ph.D., ORT/L, researchers at Thomas Jefferson University have developed the Functional Capacity Card Sort. This is a tool that will allow occupational therapists to gauge caregiver perceptions of the ability of dementia patients. Dr. Piersol stated, “Until now, occupational therapists had no objective way of knowing if the caregiver was overestimating or underestimating the abilities of the person they are caring for, leaving therapists to depend only on observation to determine what kind of caregiver education is needed”.
The Functional Capacity Card Sort assessment begins with the occupational therapist showing the caregiver 6 different cards. These cards will describe different levels of a person’s ability to complete a specific task. To begin, at the direction of the occupational therapist, the caregiver will choose which cards demonstrate the ability of their dementia patient. Next, the therapist will have them choose one single card that best describes the ability of the patient.
The occupational therapist can then compare that choice to their own assessment to get an idea of the caregiver perceptions. This lets them know whether the caregiver is over or underestimating the abilities of their patient. As a result, therapists gain insight so they can proceed with a plan for caregiver skill building and educational resources.
The Importance of Measuring Caregiver Perceptions
This is important for occupational therapists treating dementia patients. Often caregiver’s will overestimate the abilities of a dementia patient. In doing so, they may not give them enough support, or the particular support they need. On the other hand, if the caregiver perceptions lead them to underestimate their patient’s abilities, they may restrict what activities their patient can participate in. Consequently, this can lead to their patient developing unnecessary dependence.
Not only do caregivers tend to overestimate the abilities of dementia patients, in addition, they also are likely to underestimate and under manage pain in these adults. In 2014, Nancy Hodgson, Ph.D., RN, and her team released a study that gives us a reason for these caregiver perceptions. “Because dementia patients have a diminished capacity to communicate discomfort, untreated pain may be expressed in the for of behavioral and psychiatric symptoms.”
Caregiver perceptions that lead to over- or underestimating a dementia patient’s capability can adversely affect their quality of care. At the time of the study of caregiver perceptions to pain, the Functional Capacity Card Sort tool was not available, however, thanks to the team at Jefferson University, occupational therapists will be able to better educate caregivers, who play such a vital role in the well-being and safety of patients with dementia. Dr. Piersol and her team have plans to make this tool available to all occupational therapists in the future.
The study was supported in part by the Alzheimer’s Association Grant IIRG-07-28686 (Laura N. Gitlin, PhD., Principal Investigator).