Engagement In Dementia Research Articles

When words matter: Building on the DEEP guidance for Dementia-friendly documents

People living with dementia have the right to access dementia-friendly information about issues that concern them. This article builds on prior work by organisations such as the Dementia Engagement and Empowerment Project (DEEP), the Alzheimer’s Society, and AbilityNet. The article includes insights from people living with dementia. We have grouped findings into three categories explaining how to plan, design, and write dementia-friendly documents in English. We discuss using technology to access information and how adapting academic, corporate, and language norms can enhance accessibility. The article also higldiglds the need for further work on UK indigenous and community languages to provide a comprehensive approach to dementia-friendly information.

Musical Bridges to Memory: A Pilot Dyadic Music Intervention to Improve Social Engagement in Dementia.

Music-based psychosocial interventions may provide effective management of behavioral symptoms in persons with dementia (PWDs). However, there has been a paucity of studies that measured their effect on social engagement. This proof-of-concept study evaluates efficacy of the Musical Bridges to Memory (MBM) intervention on PWD's social engagement, behavioral symptoms, and associated caregiver distress. Twenty-nine PWDs and caregivers (8 control dyads, 21 intervention) participated in this dyadically designed, prospective, blinded, 12-week controlled interventional study. The intervention consisted of weekly MBM sessions, led by board-certified music therapists and performers, including caregiver training, live performances, and social breakout groups. Outcomes were measured by the Verbal and Nonverbal Interaction Scale for Care Receivers (VNVIS-CR) to code interactions between PWDs and caregivers for verbal and nonverbal sociable and unsociable behaviors. Symptom severity and caregiver distress were measured using Neuropsychiatric Inventory. Nonverbal sociable interactions significantly increased ( P =0.012) in those who completed the MBM program as compared with a decrease observed in the control group. Family/caregiver distress associated with PWDs neuropsychiatric symptoms showed significant improvement in the experimental group as compared with controls ( P =0.045). This study provides proof-of-concept that MBM improves nonverbal sociable content of PWDs interactions and reduces caregivers' distress.

Dyadic interactions and physical and social environment in dementia mealtime care: a systematic review of instruments.

Using valid instruments to measure dyadic interactions and physical and social environment during mealtime care of persons with dementia is critical to evaluate the process, fidelity, and impact of mealtime interventions. However, the characteristics and quality of existing instruments remain unexplored. This systematic review described the characteristics and synthesized the psychometric quality of instruments originally developed or later modified to measure mealtime dyadic interactions and physical and/or social dining environment for people with dementia, on the basis of published reports between January 1, 1980 and December 31, 2020. We identified 26 instruments: 17 assessed dyadic interactions, one assessed physical environment, and eight assessed physical and social environment. All instruments were used in research and none in clinical practice. All instruments were observational tools and scored as having low psychometric quality, except for the refined Cue Utilization and Engagement in Dementia (CUED) mealtime video-coding scheme rated as having moderate quality. Reasons for low quality are the use of small samples compared with the number of items, limited psychometric testing, and inadequate estimates. All existing tools warrant further testing in larger diverse samples in varied settings and validation for use in clinical practice. The refined CUED is a potential tool for use and requires testing in direct on-site observations.

Ease of use, feasibility and inter-rater reliability of the refined Cue Utilization and Engagement in Dementia (CUED) mealtime video-coding scheme.

To refine the Cue Utilization and Engagement in Dementia mealtime video-coding scheme and examine its ease of use, feasibility, and inter-rater reliability in assessing the food intake process and dyadic verbal and nonverbal interactions. This study was a secondary analysis of 110 videotaped observations of mealtime interactions collected under usual care conditions from a dementia communication trial during 2011-2014. The videos involved 29 staff and 25 residents with dementia (42 unique staff-resident dyads) in nine nursing homes. Data coding and analysis were performed in 2018-2019. Logs of coding challenges with matched solutions and coding time were collected. Inter-rater reliability was examined through rating of randomly selected 22 videos across four trained coders. It took a mean of 10.81hr to code a one-hour video using the refined coding scheme. Coding challenges, including identification of key intake process characteristics and differentiation of similar verbal or nonverbal behaviours, were identified with appropriate solutions. The refined coding scheme had good inter-rater reliability (Cohen's Kappa range=0.93 - 0.99, 95% CI=0.92 - 0.99). Findings supported preliminary evidence on feasibility, usability and inter-rater reliability of the refined coding scheme. Future psychometric testing is needed in diverse populations with dementia across different care settings. Existing tools assessing the food intake process and dyadic interactions are few and have limited feasibility and/or reliability and fail to capture the complexity and dynamics of mealtime care. The refined coding scheme showed preliminary feasibility, usability, and inter-rater reliability. In consideration of the balance between time intensity and the richness of data obtained, the tool may be appropriate and useful in addressing certain research inquires (e.g., characterizing and clustering dyadic behaviours, temporal relationship between behaviours and intake) pertaining older adults with or without dementia and their formal or informal caregivers.

Expanding technology for engagement in dementia while ensuring equity, interoperability, and privacy

Expanding technology for engagement in dementia while ensuring equity, interoperability, and privacy

Understanding Engagement in Dementia Through Behavior. The Ethographic and Laban-Inspired Coding System of Engagement (ELICSE) and the Evidence-Based Model of Engagement-Related Behavior (EMODEB).

Engagement in activities is of crucial importance for people with dementia. State of the art assessment techniques rely exclusively on behavior observation to measure engagement in dementia. These techniques are either too general to grasp how engagement is naturally expressed through behavior or too complex to be traced back to an overall engagement state. We carried out a longitudinal study to develop a coding system of engagement-related behavior that could tackle these issues and to create an evidence-based model of engagement to make meaning of such a coding system. Fourteen elderlies with mild to moderate dementia took part in the study. They were involved in two activities: a game-based cognitive stimulation and a robot-based free play. The coding system was developed with a mixed approach: ethographic and Laban-inspired. First, we developed two ethograms to describe the behavior of participants in the two activities in detail. Then, we used Laban Movement Analysis (LMA) to identify a common structure to the behaviors in the two ethograms and unify them in a unique coding system. The inter-rater reliability (IRR) of the coding system proved to be excellent for cognitive games (kappa = 0.78) and very good for robot play (kappa = 0.74). From the scoring of the videos, we developed an evidence-based model of engagement. This was based on the most frequent patterns of body part organization (i.e., the way body parts are connected in movement) observed during activities. Each pattern was given a meaning in terms of engagement by making reference to the literature. The model was tested using structural equation modeling (SEM). It achieved an excellent goodness of fit and all the hypothesized relations between variables were significant. We called the coding system that we developed the Ethographic and Laban-Inspired Coding System of Engagement (ELICSE) and the model the Evidence-based Model of Engagement-related Behavior (EMODEB). To the best of our knowledge, the ELICSE and the EMODEB constitute the first formalization of engagement-related behavior for dementia that describes how behavior unfolds over time and what it means in terms of engagement.

The tailored activity program (TAP) to address behavioral disturbances in frontotemporal dementia: a feasibility and pilot study

Purpose: To explore the feasibility of implementing the Tailored Activity Program with a cohort of people with frontotemporal dementia and their carers (dyads).Methods: The Tailored Activity Program is an occupational therapy based intervention that involves working collaboratively with family carers and prescribes personalized activities for behavioral management in people with dementia. Twenty dyads randomized into the study (Tailored Activity Program: n = 9; Control: n = 11) were assessed at baseline and 4-months. Qualitative analyzes evaluated feasibility and acceptability of the program for the frontotemporal dementia cohort, and quantitative analyzes (linear mixed model analyzes, Spearman’s rho correlations) measured the impact of the program on the dyads.Results: The Tailored Activity Program was an acceptable intervention for the frontotemporal dementia dyads. Qualitative analyses identified five themes: “carer perceived benefits”, “carer readiness to change”, “strategies used by carer to engage person with dementia”, “barriers to the Tailored Activity Program uptake/implementation”, and “person with dementia engagement”. Quantitative outcomes showed an overall reduction of behavioral symptoms (F18.34 = 8.073, p = 0.011) and maintenance of functional performance in the person with dementia (F18.03 = 0.375, p = 0.548).Conclusions: This study demonstrates the potential for using an activity-based intervention such as the Tailored Activity Program in frontotemporal dementia. Service providers should recognize that while people with frontotemporal dementia present with challenging issues, tailored therapies may support their function and reduce their behavioral symptoms.Implications for rehabilitationThe Tailored Activity Program is an occupational therapy based intervention that involves prescribing personalized activities for behavioral management in dementia.The Tailored Activity Program is an acceptable and feasible intervention approach to address some of the unique behavioral and functional impairments inherent in frontotemporal dementia.

Modelling engagement in dementia through behaviour. Contribution for socially interactive robotics.

In this paper, we present a novel tool to measure engagement in people with dementia playing board games and interacting with a social robot, Pleo. We carried out two studies to reach a comprehensive inventory of behaviours accounting for engagement in dementia. The first one is an exploratory study aimed at modelling engagement in cognitive board games. The second one is a longitudinal study to investigate how people with dementia express engagement in cognitive games and in interactions with social robots. We adopted a technique coming from Ethology to mould behaviour, the ethogram. Ethogram is founded on low level behaviours, and allows hierarchical structuring. Herein, we present preliminary results consisting in the description of two ethograms and in their structuring obtained through thematic analysis. Such results show that an underlying structure of engagement exists across activities, and that different activities trigger different behavioural displays of engagement that adhere to such a structure.

Visioning change: Co-producing a model of involvement and engagement in research (Innovative Practice).

The involvement of people living with dementia in research has traditionally been located in the realms of 'subject' or 'participant'. However, there has been an increase in demand for greater transparency by academic bidding teams (particularly within the UK) in demonstrating how people with a lived experience have been and will be involved in the research process. Located within the Economic and Social Research Council/National Institute for Health Research (ESRC/NIHR)-funded Neighbourhoods and Dementia Study (2014-2019), led by The University of Manchester (UK), this paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementia Working Group and EDUCATE.

An Automated Approach to Examining Conversational Dynamics between People with Dementia and Their Carers.

The progressive neuropathology involved in dementia frequently causes a gradual decline in communication skills. Communication partners who are unaware of the specific communication problems faced by people with dementia (PWD) can inadvertently challenge their conversation partner, leading to distress and a reduced flow of information between speakers. Previous research has produced an extensive literature base recommending strategies to facilitate conversational engagement in dementia. However, empirical evidence for the beneficial effects of these strategies on conversational dynamics is sparse. This study uses a time-efficient computational discourse analysis tool called Discursis to examine the link between specific communication behaviours and content-based conversational engagement in 20 conversations between PWD living in residential aged-care facilities and care staff members. Conversations analysed here were baseline conversations recorded before staff members underwent communication training. Care staff members spontaneously exhibited a wide range of facilitative and non-facilitative communication behaviours, which were coded for analysis of conversation dynamics within these baseline conversations. A hybrid approach combining manual coding and automated Discursis metric analysis provides two sets of novel insights. Firstly, this study revealed nine communication behaviours that, if used by the care staff member in a given turn, significantly increased the appearance of subsequent content-based engagement in the conversation by PWD. Secondly, the current findings reveal alignment between human- and computer-generated labelling of communication behaviour for 8 out of the total 22 behaviours under investigation. The approach demonstrated in this study provides an empirical procedure for the detailed evaluation of content-based conversational engagement associated with specific communication behaviours.

Assessing Engagement in People With Dementia: A New Approach to Assessment Using Video Analysis

The study of engagement in people with dementia is important to determine the effectiveness of interventions that aim to promote meaningful activity. However, the assessment of engagement for people with dementia in relation to our current work that uses social robots is fraught with challenges. The Video Coding - Incorporating Observed Emotion (VC-IOE) protocol that focuses on six dimensions of engagement: emotional, verbal, visual, behavioral, collective and signs of agitation was therefore developed. This paper provides an overview of the concept of engagement in dementia and outlines the development of the VC-IOE to assess engagement in people with dementia when interacting with social robots.

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