A translational case study of empowerment into practice: A realist evaluation of a member-led dementia empowerment service.

Involving people with dementia in decision-making is widely accepted as a means of empowering them to lead more independent lives and have more meaningful roles in shaping their care. However, there is a need to conduct rigorous evaluations of empowerment-driven services and policies in order to develop a deeper understanding about how to optimise successful implementation. This paper presents the results of an evaluation of Dementia Northern Ireland, an organisation initiated and led by people with dementia. We used a realist evaluation approach that comprised interviews with 15 people with dementia, three staff and two board members, ethnographic observations, along with documentary analysis to identify 'what works, for whom, under what circumstances'. The analysis used realist logic to build up context-mechanism-outcome configurations. The Dementia Northern Ireland service model of empowerment revolved around the formation and maintenance of social groups of people with dementia. Facilitators, recruited and selected by people with dementia, supported six groups, consisting of one to four members with mild to moderate cognitive impairment. Facilitators helped expand empowerment groups, facilitate decision-making, awareness raising and consultation opportunities with group members. The 'Empowerment Groups' appeared to lead to the development of a shared social identity and a sense of collective strength as indicated by interview and observational data demonstrating an activist mentality among group members to challenge the stigma surrounding dementia. Group members also reported improved quality of life. Widespread implementation of the empowerment model has the potential to lead to reduced stigma and greater social inclusion, increased involvement of people with dementia as active co-producers of policy and service development, better services and support. This case study of Dementia Northern Ireland illustrates that there are boundaries and challenges to empowerment in terms of requiring additional support from staff without dementia. However, despite these challenges, empowerment-driven organisations can and should be committed to involving members in lead roles and key decision-making.

Co-producing a shared understanding and definition of empowerment with people with dementia.

BACKGROUND: Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a definition with PWD who are more actively involved in their communities post diagnosis (e.g. no longer the 'long goodbye'). This study seeks to combine academic literature review methods with participatory/co-production methods in order to address this gap. We feel this approach also adds to developing methodologies in the field of co-production and user involvement. METHODS: We use a unique approach toward a definition of empowerment for PWD. Phase 1 - A scoping review of medical/health, social care and social policy-based databases to identify any previous literature that may have defined empowerment exclusively for PWD. Based on this literature, we collected a list of terms relating to empowerment for PWD. Phase 2 - Using empowerment key terms set on cards formulated from Phase 1 across three co-production workshops, academic team members, and nine members of Dementia NI (an organisation founded and led by people with dementia) we reviewed the findings of this search and co-produced an agreed definition they felt best described empowerment for them. RESULTS: Phase 1 and 2 led to a definition of empowerment relevant to PWD. This shared understanding of empowerment was defined by PWD as 'A confidence building process whereby PWD are respected, have a voice and are heard, are involved in making decisions about their lives and have the opportunity to create change through access to appropriate resources'. CONCLUSIONS: The strength of this research lies in addressing the current confusion and arbitrariness of empowerment within the context of dementia. This coproduced work also provides evidence for not only the possibility, but also the added value of involving PWD in research in terms of unique insights afforded by their lived experiences.

Involving individuals with dementia as co-researchers in analysis of findings from a qualitative study.

Patient and public involvement is widely accepted as good practice in dementia research contributing substantial benefits to research quality. Reports detailing involvement of individuals with dementia as co-researchers, more specifically in analysis of findings are lacking. This paper reports an exercise involving individuals with dementia as co-researchers in a qualitative analysis. Data was from anonymised extracts of interviews with people with dementia who had participated in a multistage study on risk communication in dementia care, relating to concepts and communication of risk. Co-researchers were involved in deriving meaning from the data, identifying and connecting themes. The analysis process is described, reflections on the exercise provided and impact discussed. The session improved overall research quality by enhancing validity of the findings through application of multiple perspectives while also generating sub-themes for exploration in subsequent interviews. Development of guidance for involving individuals with dementia in analysis of research findings is needed.

Perception and Communication of Risk in Decision Making by Persons with Dementia.

Communication of risks must involve people with dementia meaningfully to ensure informed and inclusive decision-making processes. This qualitative study explored concepts of risk from the perspective of persons with dementia and their experiences of communicating risk with family members and professionals. Data was analysed using grounded theory. Seventeen people in Northern Ireland with mild-moderate dementia who had recently made a decision about their daily life or care involving consideration of risks were interviewed between November 2015 and November 2016. A wide range of actual or feared risks were identified relating to: daily activities; hobbies and socialising; mental health and medicines; and risks to and from others. 'Risk' often held emotional rather than probability connotations. Constructive communications to address issues were presented. Problem-solving models of both active and passive decision-making about risks were evident. Effective risk communication in informed decision-making processes about health and social care is discussed.

Concepts for communication about risk in dementia care: A review of the literature.

Communication about risk is central to decisions in dementia care. This review synthesises research on risk concepts and communication in dementia. Twelve bibliographic databases and one online search engine were searched up to February 2016. Reference lists of two related literature reviews were used. Thirty-four articles were identified that focused on risk concepts; two articles related to risk communication. Concepts were often socially constructed, and perceptions may differ from actual adverse outcomes. Perceptions of risk and thresholds of risk-tolerance varied between individuals with dementia, carers and professionals. Individuals with dementia were found to behave differently from controls when making decisions involving risk information in experimental settings. Cognitive impairment was also associated with lower health numeracy. These findings highlight the importance of communication between stakeholders when making decisions and of presenting information in an appropriate way to support informed and positive risk taking. Research is required on risk communication in dementia.

Communicating risk in dementia care: Survey of health and social care professionals.

Supporting people to live at home in line with community care policies requires increasing attention to assessing, communicating and managing risks. There is a challenge in supporting client choices that include risk-taking while demonstrating professional accountability. Risk communication becomes increasingly important with the need to engage clients and families in meaningful shared decision-making. This presents particular challenges in dementia services. This survey of risk communication in dementia care was administered to all health and social care professionals in community dementia services in Northern Ireland: June-September 2016. Of 270 professionals, 70 questionnaires were fully completed, with 55 partial completions. Scores on the Berlin Numeracy Test plus Schwartz items was low-moderate (mean 2.79 out of 7). This study did not find a significant association between numeracy and accurate perceptions of risk likelihoods in practice-based scenarios. Although 86% reported using numeric information in practice (mostly from assessment tools), respondents rarely communicated themselves using numbers. As in other domains, participants' responses were widely variable on numeric estimates of verbal terms for likelihood. In relation to medication side effects, few participants provided responses that were concordant with those in the guidance of the European Union. The risks most commonly encountered in practice were (in rank order): falls, depression, poor personal hygiene, medicines mismanagement, leaving home unsupervised, financial mismanagement, malnutrition, swallowing difficulties, abuse from others, risks to others, home appliance accidents and refusing equipment. Respondents generally overestimated the likelihood of serious harmful events by approximately 10-fold (having a missing person's report filed with the police; having a fall resulting in hospitalisation) and by approximately double (being involved in a car accident; causing a home fire), and with wide variation between respondents. There is potential in icon arrays for communicating risks. Risk literacy among dementia care practitioners needs to be developed.