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

Abstract

Communication problems with their caregivers are common in people with dementia. Although interventions for improvement of communication are being developed, a tool to measure how participants experience their communication is lacking. The objective of this article is to describe the development of a questionnaire that measures the “experienced communication” of persons with dementia (ECD-P) as well as of their caregivers (ECD-C). Interviews were conducted with five person with dementia—caregiver dyads who had recently received a new communication intervention. Reflexive thematic analysis was performed on the transcripts using ATLAS.ti. Codes were created, categories and themes were identified, and items for the questionnaires were generated. Selection of items and response scales was done in collaboration with the same dyads. The final version was established after pilot testing with seven other dyads and discussion with five experts in the field of dementia care. Analysis of the transcripts resulted in 212 codes and 17 categories within four themes: caregiver competence, social communication, communication difficulties in daily life, and experienced emotions during conversations. The final version of the ECD-P consists of part 1 with 22 items and 4-point Likert scales, and part 2 with two items and 1 to 10 scales. In the final ECD-C (proxy version), part 1 and part 2 are similar to the ECD-P, while a part 3 was added to assess caregivers’ own perspective and emotions (five items). Based on the experiences of people with dementia and their caregivers, we constructed a face-valid questionnaire. This justifies future research to test its clinimetric characteristics.

Clinimetric Evaluation of the Experienced Communication in Dementia Questionnaire

“…The ECD proved to take about 10 min to complete. During its development, the ECD was constructed in close collaboration with people with dementia and their caregivers, and their own words were used to formulate the items ( Olthof-Nefkens et al, 2021 ). That may have benefited the comprehensibility and the ease with which people filled out the questionnaires.…”

“…Following the description of the content validity as reported in our previously published paper on this instrument ( Olthof-Nefkens et al, 2021 ) and assuming acceptable internal consistency, we aimed to investigate construct validity by comparing the ECD scores with measures that we anticipated to correlate with the construct of “experienced communication.” Measures had to be available and validated in Dutch and their use without additional burden for the participants. We were unable to find another Dutch instrument that measures a construct close to “experienced communication”; therefore, we decided to take the Dutch versions of the DQI and the ZBI-12 as the best possible convergent measures that met our requirements.…”

“…The final version of the questionnaire was established after pilot testing with seven other dyads and discussion with five experts in the field of dementia care. More details on the development and face validity of the questionnaire are described elsewhere ( Olthof-Nefkens et al, 2021 ). This previous study showed that how people with dementia experience their communication is defined by a combination of four factors: the communicative competence of the conversation partner, their communication behaviors in social settings, the communication difficulties they experience in daily life, and the emotions they have during conversations (nervousness, frustration, sadness, anger, and anxiety; Olthof-Nefkens et al, 2021 ).…”

“…More details on the development and face validity of the questionnaire are described elsewhere ( Olthof-Nefkens et al, 2021 ). This previous study showed that how people with dementia experience their communication is defined by a combination of four factors: the communicative competence of the conversation partner, their communication behaviors in social settings, the communication difficulties they experience in daily life, and the emotions they have during conversations (nervousness, frustration, sadness, anger, and anxiety; Olthof-Nefkens et al, 2021 ). These themes correspond with the domains that are targeted in the intervention and are therefore embedded in the ECD.…”

Com‐mens: a home‐based logopaedic intervention program for communication problems between people with dementia and their caregivers — a single‐group mixed‐methods pilot study

“…We used two questionnaires, which we deemed sufficient for our purpose while being a minimal burden for the participants. The validated ECD was developed in close collaboration with people with dementia and their caregivers (Olthof-Nefkens et al, 2021a), and measures how these persons experience their communication (Olthof-Nefkens et al, 2021b). The ECD is available in two complementary versions: one for the person with dementia (ECD-P) and one for the informal caregiver (ECD-C).…”