German version of the engagement of a person with dementia scale: translation and initial application experiences

The global number of people living with dementia is expected to rise and the increasing number of people with dementia highlights the necessity for public health planning and policy initiatives to meet their needs [3]. By the end of 2021 a total of 793,461 people were being cared for in German nursing homes [5] of which 69% are considered to have dementia [17]. Dementia typically progresses over several years, leading to a gradual decline in the quality of life for both patients and their families, necessitating extensive medical, nursing, and social support [6, 12]. Nursing home residents with dementia are especially vulnerable to spend the majority of their time alone while only experiencing few opportunities for engagement in meaningful activities [9]. Psychosocial digital interventions (PDI) for people with dementia (PwD), such as serious games in dementia care aim to influence cognition, physical and psychological functioning, well-being and social participation [13]. Studies evaluating the effects of PDI face the challenge of choosing appropriate instruments to measure outcomes that can range from short-term to long-term effects in the abovementioned target dimensions of PDI and often focus on engagement, apathy or interaction of PwD.

Assessment tools for engagement, social activities or apathy in dementia are often limited by the fact that they often rely on self-reported measures which restricts their use in cohorts of PwD with more severe cognitive limitations [9]. Instruments that aim at observing activities in PwD such as the Maastricht Electronic Daily Life Observation Tool (MEDLO-Tool) [4] are either lacking precise scoring instructions or do not incorporate an overall or subscale score that can be used to evaluate effects of PDI. Other instruments, such as the Apathy Evaluation Scale (AES) do not seem to be suitable to evaluate short-term effects, which have been reported more frequently than long-term effects of PDI [11].

In this context, the Engagement of a Person with Dementia Scale (EPWDS) is a promising tool to assesses the behavioral and emotional expressions and responses of engagement by PwD when partaking in PDI [9]. Engagement can be either a social interaction or the participation in an activity which is assessed through behavioral observations [9]. The EPWDS assesses engagement in five areas (affective, visual, verbal, behavioral and social engagement) and was primarily developed for use in research involving PwD across different care settings [9]. The EPWDS is a 10-item observer-rated instrument designed to examine whether an individual with dementia exhibits an emotional or behavioral expression or response of engagement with, in, or following the introduction of a psychosocial activity [9]. For each item standardized instructions and scoring guidelines with detailed rating descriptions (range 0–5) are provided. The minimum recommended duration of an observational period is 10 min and the EPWDS can be used to establish a baseline comparison prior to the introduction of the activity [9]. The total EPWDS score for all items across all dimensions ranges from 10 to 50, with a higher score indicating a higher level of positive engagement while a lower score indicates a higher level of disengagement or negative engagement [9]. Data collection on the responses of PwD using the EPWDS can be conducted using either video recording or natural observations [9]. Psychometric properties of the EPWDS have been tested in a cohort of PwD in long-term care facilities engaging in a PID with the robotic seal PARO, and the EPWDS has shown robust internal consistency, interrater reliability, test-retest reliability and construct validity [9].

An assessment instrument for engagement with PDI such as the EPWDS is currently not available in the German language. As the EPWDS includes standardized written instructions for the raters observing PwD and classifying the level of engagement, a scientifically valid translation according to established criteria is required. Therefore, the first aim of this study was to translate and cross-culturally adapt the original version of the EPWDS into the German language (EPWDS-GER). The second aim was to obtain feedback from nurses working with PwD on the practicability and comprehensibility of instructions for use of the EPWDS-GER.

As there is no universally established reporting standard for studies reporting on the cross-cultural adaption of health measures, the procedure followed the reporting structure given in Gordt et al. [8], who reported on the translation and evaluation of the German version of the Community Balance and Mobility Scale.

The stages I–V of the cross-cultural adaption were performed as described. During the synthesis, non-matching translation terms were discussed among the three translators while considering the original version. Decisions were made together amongst the three translators regarding 1. “engagement” = “Beteiligung”, 2. “disengagement” = “Abwesenheit von Beteiligung”, 3. “person with dementia” = “Person mit Demenz”, 4. “community and long-term care” = “ambulante und stationäre Langzeitpflege”, 5. “start time of observation period” = “Beginn des Beobachtungszeitraums”, 6. “end time of observation period” = “Ende des Beobachtungszeitraums”. Cross-cultural adaption was made for the term “community care” by translation to “ambulante Pflege” as a literal translation does not correspond to the term used for community care in Germany.

Based on the translation and back translation, the prefinal version was discussed in the expert committee. In cooperation with the expert committee, it was decided to translate the terms “individual with dementia” or “person with dementia” as “Person mit Demenz” and “people with dementia” as “Menschen mit Demenz”. Furthermore, it was decided to translate “disengagement” as “fehlende Beteiligung” and “distressed” as “Verzweiflung” as this was considered to be more in line with everyday language and observations in nursing practice. The same applies to “facilitator” which was translated to “Anleiter:in”. The final German version (Appendix 1) is officially released and can be downloaded for free.

The EPWDS was successfully translated into the German language and evaluated regarding comprehensibility, ease of use and general suitability with nurses and residents in a German nursing home. Overall, the results show that the EPWDS-GER is a feasible, easy to understand and easy to use tool for measuring behavioral and emotional expressions and responses of engagement of persons with dementia. The EPWDS-GER can now be utilized in clinical practice and research on psychosocial (digital) interventions for people with dementia. As the majority of participants reported comprehending the EPWDS-GER instructions and subscales, translation and cross-cultural adaption was successful. In addition, construct validity of the EPWDS-GER was confirmed as the overall rating of the suitability of the EPWDS-GER to assess engagement in people with dementia by nurses and healthcare professionals resulted in a favorable consensus of the instrument. This expert rating also provides an indication of the face validity of the EPWDS-GER, for which the significance as a quality feature of a test is critically discussed in the literature [14]; however, as no changes were made to the core concepts of the EPWDS during the translation and cross-cultural adaptation, the findings from the construction process of the original EPWDS-version can be transferred, which shows the scale to have a high level of content and construct validity [9]. Experiences from the field testing of the EPWDS-GER further indicate that the scale can be used to assess different types of social activities which may or may not include psychosocial digital interventions.

Further experiences with the EPWDS-GER are available, as the scale was used in a longitudinal monocentric within-subject study that aimed to assess the effects of the Tovertafel® in a sample of 25 nursing home residents with moderate to severe dementia who participated in a Tovertafel® group intervention for 8 weeks [10]. The EPWDS-GER was used to assess the level of engagement at three points in time (during group breakfast as a control activity, during the Tovertafel® intervention, 1h after the Tovertafel® intervention) and found positive effects for the PDI intervention in terms of an increase in positive social engagement,(e.g., using the intervention to encourage others to interact or as a communication channel), a decrease in negative social engagement (e.g., distracting or disrupting others) during the PDI intervention, and an increase in positive behavioral engagement (e.g., approaching, reaching out) which was highest 1h after the PDI while negative behavioral engagement (e.g., avoiding, shoving away, pulling back from) decreased [10]. The study demonstrates the applicability of the EPWDS-GER in a real-world research setting in a German population.

By including two informed forward-translators and one uninformed forward-translator the process ensured guideline-compliant conduction of stage I of the translation process but deviated from guidelines in stage II as synthesis was achieved through discussion of the three translators from stage I without including an unbiased additional person [2]. Deviating from recommendations for cross-cultural adaption of health status measures [2], back translation was performed by only one translator who can be considered uninformed. Similar deviations are described by Gordt et al. [8], who should be referred to for reporting purposes, and who point out that the evidence base for the benefit of including a second back translation is relatively weak. For the test of the prefinal version (stage V), guidelines recommend a sample of 30–40 participants [2]. The study did not fully reach this sample size but the sample of 25 nurses and healthcare professionals (rating of the scale and test observations) is considered to be sufficient, taking into account that the survey and assessment took place during enforced measures to prevent the spread of the COVID-19 pandemic in 2021 when access to nursing homes was highly restricted and nursing home staff and residents were exposed to a particular strain [16]. From the latter arises the most major limitation of the results, as the COVID-19 pandemic was the leading cause for nursing homes or geriatric day-care facilities to not participate in a validation study for internal consistency, inter-rater reliability and test-retest reliability for which ethical approval was obtained by the German Society for Nursing Science. In addition, statistical procedures to determine the construct validity of the EPWDS-GER, such as a multitrait-multimethod analysis [15], were not applied as the results from the expert rating in combination with the sound validity of the original version were considered as sufficient. Due to funding restraints, we can only report on translation and cross-cultural adaption, construct validity, and initial field experiences; however, a systematically translated version of the EPWDS in the German language is now available which stands out from ad hoc and on demand translated versions.

The EPWDS-GER was successfully developed and applied to assess engagement in people with dementia and is now accessible for the use in clinical (nursing) practice and research in Germany. The EPWDS-GER can be utilized in studies aiming to assess and monitor affective, visual, verbal, behavioral and social engagement in people with dementia as well as in the care and nursing process for selecting and guiding psychosocial (digital) interventions to stimulate engagement and interaction. Furthermore, the EPWDS-GER can also be utilized to develop algorithms for a digitally automated recognition of engagement of people with dementia based on artificial intelligence methods for speech, motion and posture detection and analysis which are being applied in the care for people with dementia more and more frequently [18]. The EPWDS-GER may help to raise awareness of the importance of engaging people with dementia in meaningful activities which is of great importance and in line with current guidelines on shaping relationships with and for people with dementia [7].