Basket | Login | Register


P7. Rights and dementia-friendly society: Involving people with dementia

Detailed programme, abstracts and presentations

P7.1. Co-research with people living with dementia: the challenges for participation and collaboration

CHARLESWORTH Georgina1, DI LORITO Claudio2, WAITE Jacob1, HIGGS Paul1, POLAND Fiona3, LEUNG Phuong1, BIRT Linda3

1University College London, London, United Kingdom, 2University of Nottingham, Nottingham, United Kingdom, 3University of East Anglia, Norwich, United Kingdom

A diagnosis of dementia can often shift a person’s social status and so diminish opportunities to participate in research processes as an autonomous and agentic person. Access to research is mediated by medical ethics and care relationships, which although intended to ‘protect’, can exclude. While participatory ways in which people with dementia can actively support studies are increasingly identified, peer research or co-research with people with dementia is under-explored and under-conceptualised.  In co-research, people with experience of the condition work alongside academics in all stages of the research process: co-creating both data and results. In the Promoting Independence in Dementia (PRIDE) research programme, we aimed to work with people with dementia and carers as co-researchers. A preliminary literature review indicated that co-research could benefit both the person with dementia and the research process. Recruiting co-researchers to undertake data collection proved unsuccessful. A later qualitative interview study revealed that professionals and carers had concerns about emotional risk to the person with dementia and about their cognitive ability to undertake data collection. We involved 8 people with dementia as co-researchers in a collective data analysis event, recruiting people through NHS trusts. Here, we consider the effects of decisions about the setting of the event, the roles each would take, how to present data and what knowledge claims could be made. The practical and theoretical challenges faced in this novel co-research activity, included how to select and format qualitative data to be accessible to people with cognitive impairment and no research experience and how to differentiate the activity from data validation. Short and focused coding activities and smaller focused case studies enabled co-researchers to engage with, extend, compare and contrast data. Co-researchers brought some unexpected ways of understanding data and both challenged and confirmed academic interpretations. 

P7.2. Involving people living with dementia as co-researchers in core outcome set methodology

HARDING Andrew1, MORBEY Hazel1, SWARBRICK Caroline2, AHMED Faraz1, ELVISH Ruth2, KEADY John2, WILLIAMSON Paula3, REILLY Siobhan1

1Lancaster University, Lancaster, United Kingdom, 2Manchester University, Manchester, United Kingdom, 3University of Liverpool, Liverpool, United Kingdom

The high variation of outcomes measured across studies evaluating non-pharmacological health and social care community-based interventions for people living with dementia is compounded by the strong indication that chosen outcomes may not reflect what is important to people living with dementia. This obstructs comparisons for effectiveness and makes the interpretation of results difficult. Furthermore, the rigour of trials must be called in to question if outcomes (or outcome constructs) do not reflect what is important to those with lived experiences. One way to address this is to use and report a core outcome set (COS) - a list of core outcomes which should be measured and reported as a minimum across all relevant effectiveness trials.

If COS’ are to be relevant and responsive, a critical issue for core outcome set designers is how to incorporate the views of those with lived experience. While this vital activity is often not done, done poorly or approached as a single isolated activity, studies have shown people with lived experience often have different perspectives on what outcomes are important when compared with professional groups.

This presentation, part of the Neighbourhoods and Dementia programme (funded by the ESRC/NIHR under key commitment 12 of the first Prime Minister’s Challenge on dementia), reports on the development of a core outcome set methodology that has positioned people living with dementia as co-researchers throughout the wider research process. Specifically, we report on how we have facilitated and included the views of people living with dementia at every stage of the research process – from involvement in determining what outcomes are important; consultation on the development of research tools; and participation in an accessible Delphi survey and consensus workshop approach.

P7.3. Progressing from 'proving' to 'improving' the involvement of people affected by dementia in research


1Alzheimer's Society, London, United Kingdom, 2Guy’s Hospital, London, United Kingdom

Established in 1999, the (UK) Alzheimer’s Society Research Network now involves over 260 people with dementia, carers and former carers as partners with dementia researchers across the UK. Alzheimer’s Society is proud to be a pioneer and innovator in patient & public involvement. Drawing upon 20 years of experience we will present the findings of three pieces of work related to the impact of involving people affected by dementia in research and inspire colleagues across Europe to improve the ways they support people affected by dementia to influence research. March 2018 saw the publication of Alzheimer’s Society’s first impact report on patient and public involvement. The evidence in this report indicates five areas of benefit for involvement: on research; on researchers; on people affected by dementia; on Alzheimer’s Society; and on wider Society. We will show a video highlighting these themes and present some of the areas of improvement identified in the report, including the involvement of people with a diagnosis of dementia. In November 2018 another landmark publication will launch, which is a special guest edition of the academic journal Dementia. This publication adds a significant contribution to the academic literature on how best to involve people affected by a wide range of dementias across the different types of dementia research. 2017 also saw the publication of the Dementia Statements in the UK (including a specific statement on involvement and participation in research) as well as a UK Dementia research roadmap for prevention, diagnosis, intervention and care by 2025. Our talk will discuss the opportunities and challenges these publications provide to not just ‘prove’ the value of involvement but to also ‘improve’ the contribution and impact people affected by dementia can make in the UK and across Europe. Presentation to be co-presented with a member of the research network.

P7.4. Scottish Dementia Working Group (SDWG) work on equality and diversity

BARRETT Patricia, NOONE Archie

Scottish Dementia Working Group/ Alzheimer Scotland, Glasgow, United Kingdom

The Scottish Dementia Working Group is a campaigning group made up of people with a diagnosis of dementia. The group is involved in projects throughout Scotland and internationally and the members see themselves as representing people with dementia who live in Scotland.

The group have always discussed the importance of a diverse membership and how the group should be open to anyone who would like to be heard. In 2017 the group undertook a more proactive approach to increasing the diversity of SDWG and started talking about how to remove any barriers there may to people joining/participating. This marked a change in the group’s approach and there was a workstream dedicated to equality and diversity.

The group have looked at different approaches including an equalities audit, safe space and other commonly used equality policies, inviting speakers on related subjects to meetings, looking at online resources and a training programme delivered in partnership with Alzheimer Scotland.

SDWG member on the training programme:

 “It’s important for the group to know these things because we need to be able to welcome new members who are LGBT and have their own issues because of that. I don’t think many of us knew anything about gay rights at all but it was so interesting to find out. People with dementia can still learn. We are still learning and building the group all the time.”

The group held a networking event and had discussions with organisations working the deaf community, organisations supporting people with learning disabilities and organisations supporting people from BAME communities. Following this, the group began an outreach programme, firstly meeting with an organisation that supports people with learning disabilities to discuss how the group could be a vehicle for their voices to be heard.

P7.5. An instrument for assessing the subjective quality of life of person with a memory disorder (#MemoryMIKE)


Memory Association of Oulu Region, Oulu, Finland

An instrument for Assessing and Monitoring the Subjective Quality of Life (QoL) and the Psychological and Social ability to function of Person with a Memory Disorder (#MemoryMIKE)

It is often thought that people with dementia are not capable of defining their own QoL, so they are not even asked about it. However, choosing not to ask violates their autonomy. That is one of the reasons why we started to develop this instrument. The MemoryMIKE instrument is primarily intented for use in an early or moderate stage of dementia. The instrument is a way to interact with people with dementia as an independent adult and give them the opportunity to talk about serious matters and be more part of their own care and rehabilitation. Resource-based and appreciative interaction can be empowering in itself.

The data-collection methods in MemoryMIKE are interview and observation. An interview can provide valuable, direct information from the point of view of the interviewee, but it is also a good way of establishing a co-operative relationship. A progressing memory disorder impairs not only the ability to communicate verbally but also the capability of self-reflection, so observation of activities was chosen as part of the MemoryMIKE.

In addition to health professionals, people with dementia participated in the development of this instrument. The instrument was piloted in many organisations by different professionals e.g. occupational therapists, nurses, physiotherapists etc before releasing it.

The MemoryMIKE was a finalist in Finnish Health Awards competition and also a finalist in TERVE-SOS competition by National Institute for Health and Welfare in 2016. It will be prensented in Nordic Congress of Gerontology in Norway in May 2018.

The instrument and the associated forms in English and Finnish are available for free at

P7.6. Putting public and patient Involvement into practice: experience of PPI with the European Working Group of People with Dementia (EWGPWD)

GOVE Dianne, DIAZ Ana

Alzheimer Europe, Luxembourg , Luxembourg

Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of patient and public involvement (PPI) by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. PPI is about carrying out research and developing policies with or by members of the public and patients rather than on or for them as mere participants. The growing awareness of the importance of PPI has led to more opportunities for people with dementia to contribute towards society by helping improve the quality, relevance and ethical conduct of dementia research. However, this also involves new challenges (e.g. how to give people with dementia an equal opportunity to be involved, how to reach a diverse group of people, how to provide the necessary support and how to maximise the potential of people with dementia to contribute towards research).

In 2017, together with INTERDEM and the EWGPWD, AE developed a position paper with a guiding framework on how to conduct PPI with people with dementia which includes seven different aspects. The presentation will provide some practical examples of how we have implemened some of these aspects whilst working with different European projects on dementia, including different approaches and techniques. The projects cover a wide range of issues such as palliative care, real world data and diagnosis of dementia. The members of the EWGPWD with dementia have been involved in such projects in different ways and for different purposes (e.g. for research, policy making and design).



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