In the Eye of the Beholder: First-of-its-Kind Tool Measures Caregiver’s Perception of Capabilities of Person with Dementia

PHILADELPHIA - Comprehensive occupational therapy care requires a family-centered approach including treatment for the person with dementia and education for the caregiver. Clinical assessments exist to evaluate the capabilities of a person with dementia, but until now, occupational therapists did not have a validated instrument to gain understanding of the caregiver’s perceptions of the person with dementia’s abilities. Occupational therapist researchers at the Jefferson College of Health Professions at Thomas Jefferson University developed a first-of-its-kind tool to close this gap and published their findings in OTJR: Occupation, Participation and Health.

"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," said Catherine Verrier Piersol, Ph.D., OTR/L, first author and Associate Professor of Occupational Therapy in the Jefferson College of Health Professions. "Often, a caregiver overestimates the person's abilities, so they may not provide enough support and supervision which can lead to risk or harm. But equally important, if they underestimate the person's abilities, they might restrict the person's participation in daily activities and create unnecessary dependence."

Dr. Piersol and her team developed the Functional Capacity Card Sort, a simple card sorting activity to gauge caregiver perceptions. During the assessment, the occupational therapist presents the caregiver with six cards, each one describing various levels of a person’s ability to complete a daily activity. The caregiver is asked which cards describe the ability of the person with dementia. Finally, the occupational therapist asks the caregiver to choose just one card, the one that best describes the person’s ability. This card is then compared to a therapist’s clinical assessment. If the two levels don’t match, the therapist then has an idea of whether the caregiver is underestimating or overestimating the person’s abilities. This informs the plan for caregiver skill-building and education.

The Card Sort was found to have construct validity and inter-rater reliability, which is presented in the published findings. Dr. Piersol plans to make the tool available to occupational therapists in the field.

Citation: Piersol, C.V., et al. Psychometric Properties of the Functional Capacity Card Sort for Caregivers of People with Dementia. OTJR: Occupation, Participation and Health. 2016, Vol. 36(3) 126-133. 

This study was supported in part by the Alzheimer's Association Grant IIRG-07-28686 (Laura N. Gitlin, PhD., Principal Investigator). The authors report no conflicts of interest.
 

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