Development of the Experienced Communication in Dementia Questionnaire: A Qualitative Study

Area of Science:

• Gerontology
• Communication Studies
• Psychology

Background:

• Communication challenges are prevalent in dementia caregiving relationships.
• Existing interventions lack tools to measure participants' subjective communication experiences.
• A validated instrument is needed to assess experienced communication in dementia.

Purpose of the Study:

• To develop and describe the creation of a questionnaire measuring the experienced communication of persons with dementia (ECD-P) and their caregivers (ECD-C).
• To generate items and response scales based on qualitative data from dyads undergoing communication interventions.
• To establish a face-valid questionnaire for use in dementia communication research.

Main Methods:

• Qualitative interviews with five person with dementia-caregiver dyads post-intervention.
• Reflexive thematic analysis using ATLAS.ti to identify themes and generate questionnaire items.
• Collaborative item selection and pilot testing with additional dyads and dementia care experts.

Main Results:

• Analysis yielded 212 codes and 17 categories across four themes: caregiver competence, social communication, daily communication difficulties, and emotional experiences.
• The ECD-P includes 22 items (Likert scale) and 2 items (1-10 scale).
• The ECD-C (proxy) mirrors ECD-P with an added 5-item section on caregiver perspectives and emotions.

Conclusions:

• A face-valid questionnaire (ECD-P and ECD-C) was developed based on the lived experiences of people with dementia and their caregivers.
• The questionnaire provides a novel tool for assessing subjective communication experiences in dementia.
• Further research is warranted to validate the clinimetric properties of the developed instruments.