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P15. Rights and dementia-friendly society: Involving people with dementia II

Detailed programme, abstracts and presentations

P15.1. Involving people with dementia: The Salford Dementia Associate Panel

INNES Anthea, POYNER Christopher, BUSHELL Sophie

University of Salford, Salford, United Kingdom

The Salford Institute for Dementia convenes a panel comprised of people living with dementia and current and former care supporters of people living with dementia. This panel is part of the governance structure of the Salford Institute for Dementia. Individuals who sit on the panel are consulted and advised on all aspects of research, education and knowledge exchange/awareness raising activities undertaken by staff at the University.  The work of the panel evolved over a two year period until the group were in a position to agree terms of reference in February 2018 following a consultation process between October 2017 and January 2018. The work of the panel is being evaluated against the terms of reference for the group to ascertain its effectiveness from the perspective of panel members. The process of setting up the terms of reference for the group will be discussed with lessons learnt that are useful for others interested in ensuring that their organisations work is driven by the needs and concerns of those living with dementia by facilitating an involvement process to facilitate involving people with dementia in meaningful and enjoyable ways while addressing the business of the organisation. We will also share initial findings from the first 6 months of evaluating the work of the Dementia Associate Panel.

P15.2. Involving people with dementia in trial based psychosocial research


University of Bradford, Bradford, United Kingdom

This presentation will describe the involvement of people with a diagnosis of dementia in a UK based randomised controlled trial of a post diagnostic psychosocial intervention called Journeying through Dementia.   The intervention being tested comprises of 12 weeks’ attendance at a facilitated group with other participants and four 1:1 session over the 12 weeks with one of the facilitators.  The overall goal of the intervention is the maintenance of wellbeing, independence and engagement in life.  The study requires the participation of 486 people with early stage dementia and is on course to achieve this with 403 people and 272 participating supporters consented to take part as of April 2018.  Intervention delivery is taking place across 12 sites in England.

How people with dementia were involved in the design of the intervention will be firstly described including details of intervention content and how it is delivered. The presentation will then illustrate how people with dementia are being involved as research advisors to this large UK study.  We have a group of Experts by Experience who give their time to give advice on the content of materials for the research participants.   The aspects that the researchers have requested feedback on and how this was achieved will be fully described. The presentation will then move on to our intentions to involve people with dementia as co-researchers, involving them in the analysis of qualitative interviews conducted with research participants. Our intentions are to ask co-researchers to validate researcher interpretation of this data.  We will have achieved this activity by October 2018 and the consequent experiences and outcomes will be presented.  We will aim to present videos of our experts by experience speaking about their involvement.

P15.3. A translational case study of empowerment into practice: a realist evaluation of a member-led dementia empowerment service

MCCONNELL Tracey1, BEST Paul1, STURM Tristan1, STEVENSON Mabel2, DONNELLY Michael1, TAYLOR Brian3, MCCORRY Noleen1

1Queen's University Belfast, Belfast, United Kingdom, 2NI Statistics & Research Agency, Belfast, Northern Ireland, United Kingdom, 3Ulster University, Belfast, Northern Ireland, United Kingdom

Background: Involving people with dementia (PWD) in decision-making is broadly recognised as a way to empower them to lead more independent lives and have a more meaningful role in determining their care. However, there are a lack of rigorous evaluations of empowerment-driven services and policies, which are needed to develop a deeper understanding about how to optimise successful implementation. This paper presents findings from an evaluation of Dementia NI, an organisation founded and led by people with dementia.

Method: We used a realist evaluation approach that involved interviews with 15 PWD, three staff and two board members, ethnographic observations, along with documentary analysis to identify ‘what works, for whom, under what circumstances’. Analysis followed realist logic to develop context-mechanism-outcome configurations (CMOcs).

Results: The Dementia NI service model of empowerment involved the formation and maintenance of social groups of PWD. Facilitators, selected and recruited by PWD, supported six groups, comprising one to four members with mild to moderate cognitive impairment.  Facilitators helped expand empowerment groups, facilitated decision-making, awareness raising and consultation opportunities alongside group members. Interview and observational data suggested that ‘Empowerment Groups’ helped members develop a shared social identity and a sense of collective strength, demonstrated by a strong activist mentality among group members to challenge the stigma surrounding dementia. Group members also reported improved quality of life. Observational data also suggested that widespread implementation of this empowerment model has the potential to reduce stigma, increase social inclusion and involvement of PWD as active co-producers of policy and service development, better services and support.

Conclusion: This case study of Dementia NI highlights potential 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.

P15.4. PANEL Principles in Practice: persons living with dementia creating recruitment processes

WHELAN Clodagh1, RYAN Kathy2

1Alzheimer Society of Ireland, Dublin, Ireland, 2ASI, Cashel, Ireland

The Alzheimer Society of Ireland employs 800 people. They are engaged in direct service provision in Day Centres, Respite Care and Home Care. They provide information through the Help Line and Dementia Advisors. And there are also over 40 people in Head Office in Advocacy, HR, Finance and Fundraising.

In October 2017 the ASI invited the ViceChair of the Irish Dementia Working Group to interview candidates for the position of Advocacy, Engagment and Participation Officer. 

Building on this success the HR team worked with the Advocacy team and invitieda person living with dementia to create questions and interview a Day Centre Manager in January 2018. This gave insight into the communication style of the candidate and their approach to care and empowerment.

These pilots have evolved into a joint project between the IDWG and the ASI HR Team. They are working together to ensure the voice of the person living with dementia is present throughout the recruitment process within the organisation. This involves:

1. a joint meeting of the HR team and the IDWG.

2. a discussion around values and skills a person working for the ASI should have

3. developing agreed competencies against which all candidates will be evaluated

4. set of questions to reflect those competencies to be used at every interview

5. an induction video to ensure the voice of the person with dementia is heard by all successful candidates

A human rights based approach is integral to this project. Using PANEL principles, the HR team will ensure persons living with dementia are empowered to participate in the recruitment process and that the team are accountable to the IDWG. This takes the theory of the Irish Charter of Rights for Persons with Dementia and puts it into practice.

P15.5. Evaluating dementia training in acute hospitals: including people living with dementia in case study research

MORBEY Hazel1, AHMED Faraz1, HARDING Andrew1, SWARBRICK Caroline2, ELVISH Ruth2, KEADY John2, REILLY Siobhan1

1Lancaster University, Lancaster, United Kingdom, 2University of Manchester, Manchester, United Kingdom

With as many as one in four acute hospital beds in the UK occupied by a person living with dementia, dementia training for staff in this care setting is a key focus of national and European dementia policies and strategies. However, there is limited evaluation of the impact of dementia training on quality of care in hospitals and outcomes for dementia patients. Furthermore, and of concern to inclusivity of health research in this area, is the paucity of reported approaches to research that include the perspectives of people living with dementia. DEMTRAIN, our mixed method study within the Neighbourhoods and Dementia Programme (ESRC/NIHR UK funded), is developing the evidence base for evaluating dementia training in NHS hospitals. In three study phases we have collected organisational (hospital), staff and case study data through quantitative (surveys) and qualitative methods (focus groups, walking and one-to-one interviews). Our systematic review of literature has identified contextual factors, mechanisms, interaction, facilitators and barriers to dementia training in the hospital setting.

Building on work in previous study phases in which people living with dementia were consulted on study design and survey (hospital and staff) development, this presentation focuses on the inclusion and participation of people living with dementia in case studies undertaken in six hospitals in England, in three different ways:

  • Consultation and feedback to develop study interview tools (for staff and people living with dementia)
  • Utilisation of hospital patient experience data
  • Data collection through walking interviews in the hospital environment

These data and areas of influence on study design facilitate the representation of people living with dementia in case study research, and enabled a fuller, richer and insightful picture of hospital context that informed our evaluation of dementia training in acute hospitals.

P15.6. Go Upstream - working with people with dementia to improve travel experiences


Go Upstream, Edinburgh, United Kingdom

Getting out and about, keeping connected and remaining independent is important for our wellbeing. Transport services play a key role in this but the sensory and cognitive challenges faced by people living with dementia can make travel experiences increasingly difficult. Poorly designed services, challenging environments and a lack of staff understanding of dementia can all be barriers to travel.

Go Upstream ( is a new enterprise that provides an experience-based training and design programme for transport service providers, informed by and including the insights and expertise of people living with dementia. Go Upstream brings people living with dementia together with service providers to develop a shared understanding of the challenges faced by those using a service and those providing it. We take journeys or use a service together with staff and then work collaboratively to develop ideas for service improvement, based on a shared experience.

We are currently working with people with dementia on various projects including: the provision and design of appropriate toilets on a journey; the use of technology to improve assistance services on rail journeys; and a service to support people who have to stop driving as a result of a diagnosis of dementia.

Our aim is to put the voice of people living with dementia at the heart of travel and transport service design. By raising the issues that people living with dementia face and exploring potential solutions, we provide a process through which service providers can develop better awareness and ideas for new and improved products and services, in partnership with people living with dementia.

If we are to enable people living with dementia to maintain independence and social connection, we must prioritise and develop appropriate travel and transport products and services.

Go Upstream is supported by the Life Changes Trust.



Last Updated: Tuesday 13 November 2018


  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche