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The development and validation of a new coding system for dementia patient-caregiver dyads: the Dyadic Dementia Coding System

  • Author(s): Verstaen, Alice
  • Advisor(s): Levenson, Robert W
  • et al.
Abstract

Dementia is a debilitating disease for the individuals who are afflicted, as well as the family members who care for them. Much research has focused on factors that characterize the symptoms and behaviors of the patient, the traits of the caregiver that enable them to be more or less resilient throughout caregiving, and, to a lesser degree, the qualities of the relationship between patients and caregivers. For the latter, research has focused on marital satisfaction, language use when communicating, and mutual gaze within dyads. However, the behaviors that emerge during interactions between dementia patients and caregivers have rarely been explored. Many dyadic behavioral coding systems are available and widely used, but all of these systems were developed with healthy couples and may therefore lack the ability to capture the nuances of behaviors that emerge during interactions between dementia patients and caregivers. The present study sought to develop a new dyadic behavioral coding system that would accurately capture the behaviors and symptoms of dementia patients and the behaviors and responses of caregivers, as demonstrated by acceptable reliability (inter-rater and split-half) and validity (construct, criterion, and incremental). The sample was composed of 35 patients with Alzheimer’s Disease, 35 patients with behavioral variant frontotemporal dementia, 19 control patients, and their spousal caregivers. The final coding system consisted of nine patient and eleven caregiver codes, which captured patient behavioral symptoms (e.g., inappropriate laughter for patients) and caregiver responses (e.g., guiding appraisal). Results indicated that the dyadic behavioral coding system demonstrated acceptable reliability and validity. In addition, the new coding system was able to distinguish between different kinds of dementia as well as identifying caregivers who are at greater risk of developing depression, above and beyond an existing, commonly used dyadic coding system. Implications of these findings for the development of interventions to improve caregivers’ mental health outcomes are discussed.

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