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P1. Involving people with dementia

Detailed programme and abstracts

P1. Involving people with dementia (Tuesday 1 Nov, 14.00 to 15.30)

P1.1. Developing partnerships between people affected by dementia and researchers in the UK


Alzheimer’s Society is the only dementia charity in the UK that involves people affected by dementia in every aspect of research; from design to delivery and dissemination. Our Research Network of over 270 volunteers review all applications for funding and are increasingly involved in supporting the design of research proposals submitted both to the Society and external funders. A unique part of the Alzheimer’s Society Research programme is our commitment to enabling and promoting the involvement of people affected by dementia in the delivery of research itself. Each of our funded projects is matched to three volunteers, who provide expert advice and support from their lived experiences of dementia throughout the research. A recent review of this role has reported changes to research protocols, examples of overcoming challenges during the research projects, such as gaining ethical approval, and evidence of our volunteers motivating and improving the skills of our researchers

The success of this volunteer role, has led to the development of a Research Partnerships scheme, allowing us to support an increasing number of projects funded by other organisations in the UK. Since 2011 this scheme has facilitated the involvement of people affected by dementia as co-applicants and more recently co-researchers – taking a leading role in data collection and analysis.

Using examples from our portfolio and the NIHR funded SHARED project (1) as case studies we will present innovative methods for the involvement of people affected by dementia in the delivery of research. We will examine how involvement strategies can move beyond advisory roles to involve people affected by dementia as researchers in their own right, forming lasting research partnerships and changing the landscape of dementia research.

 (1) Mockford, C et al. (2016), A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges, Research Involvement and Engagement 2:8

P1.2. “Experts by experience tutors” – people with dementia contributing as tutors on a University course in the UK. 

RUSSELL Christopher

The presentation reports on an innovative initiative involving people with dementia as tutors on a University course in the UK. 

In 2014 a new Foundation Degree in Dementia Studies opened at the University of Worcester. Its aim is to equip students with the skills, knowledge and value base to enable them to support people to live well with dementia. The direct contribution of people with dementia is fundamental to the course. In pursuance of this, a new role was developed called Experts by Experience Tutors. Tutors are people living with dementia, who meet and engage regularly with students during their studies. Four Tutors have now supported a cohort of students across the two years of their studies.

The presentation will:

  • Provide insight into involving people with dementia effectively within teaching at Higher Education level. 
  • Describe how Tutors supported students with their academic work, their assignments, and contributed to their learning.
  • Set out the benefits the students reported this initiative had for their learning.
  • Report on the outcomes the Tutors perceived following their involvement.
  • Explore how learning gained from the initiative can be taken forwards. 

Additionally, the reflections of the Tutors’ provide insight into psychosocial aspects of dementia, and an opportunity to explore personhood, co-production and citizenship in a new context through the involvement in teaching at a University. The presentation will describe how this can help challenge the anachronistic, medicalized paradigm of dementia, and offer an alternative - the opportunity for participant Tutors to engage as active socio-educational agents contributing to innovative, and potentially far-reaching, learning.

P1.3. Everyday meal preparation for people with dementia

BENDTSEN Trine Vase, IVERSEN Mette, NEJSUM Hanne Lindberg

When people are diagnosed with dementia everyday activities like meal preparation will gradually become more difficult. A recipe is a support for meal preparation but as dementia develops, it seems that following a recipe can be a challenge. In Denmark health professionals often use meal preparation as an activity for people with dementia but they have no combined material to base the planning of the activity on.

The thesis of this project is that when persons with dementia is involved in cooking his or her own meal meal preparation it will contribute to the feeling of content and meaning in everyday life. Furthermore, getting the appropriate and nutritious food will be a step in the right direction regarding prevention of malnutrition.

The aim of this project is to develop a guide to increase the possibility for people with dementia to continue everyday life through participating in meal preparation. The guide includes ideas for constructing recipes, methods for planning and guiding the process and examples of utensils that can increase the ability to cook in the persons own home or in an institutionalized setting. This supports the person with dementia both nutritionally, cognitively and intends to make the activity a meaningful and successful experience.

The project is conducted as dialogical action research, meaning that the guide is developed by and for those people with dementia and professionals that are the aim of the project. Action research assists the participants in improving and/or refining their actions as they are the experts in their own life. Therefore, we have cooperated with people with dementia and professionals in several public settings in Jutland, Denmark, during the development and during tests of the guide.

The guide can be used in professional settings and inspire relatives to use meal preparation as a shared activity.

P1.4. A charter of rights for people living with dementia


In April 2016, The Alzheimer Society of Ireland (ASI) and the Irish Dementia Working Group launched a Charter of Human Rights for People living with Dementia. This charter was influenced by the Scottish Charter of Human Rights developed by the Cross-Party Group in the Scottish Parliament on Alzheimer’s. The charter was created to demonstrate the importance of a parity of rights for the 48,000 people with dementia in Ireland. It states that people with dementia have the right, regardless of diagnosis, to the same civil and legal rights as everyone else.

The Charter is a tool for undertaking a human rights based approach to policy and practice in dementia care. A more dementia friendly society can evolve when people living with dementia are given the rights to participation, to accountability, to non discrimination, to empowerment and to legal redress. A human rights based approach to developing policies and services is part of building this dementia friendly society as it is only through the participation and empowerment of those living with dementia that change can come.

This Paper will outline the human rights issues that present for people living with dementia; the process for developing the Charter and the possible implications of a human rights based approach for policy and practice.

P1.5. Position paper on consultations involving people with dementia in the context of research

DIAZ Ana, GOVE Dianne

Arising out of a recent consultation with people with dementia across Europe on the topic of suitable outcome measures in dementia psychosocial intervention and care research the issue of consultations as a research activity arose.  This led to a debate at one of INTERDEM’s pan European consensus workshops surrounding consultations to aid the research process compared with other more general Patient and Public Involvement (PPI) activity. Therefore, Alzheimer Europe is currently developing, together with INTERDEM members from Denmark, Italy and the UK, a position paper on consultations involving people with dementia in the context of research. The European Working Group of People with Dementia has been involved in the development of the paper and this is supplemented by input from Alzheimer Europe’s member associations and Board. The INTERDEM Board will be invited to endorse the position paper on completion.  In this presentation, I will provide an update on progress to date and highlight some of the key issues addressed. As part of the iterative process of refining the paper, the audience will be invited to provide feedback on the draft.

P1.6. Involving people with dementia in care-planning; evidence from Ireland


Ireland recently passed the Assisted-Decision Making (Capacity) (ADM) Act (2015); a modern statutory framework supporting decision-making by adults who have difficulty making decisions unaided. People with dementia can no longer be assumed to lack capacity to make decisions about their care. To gain insight into current practices, research was undertaken with social workers working with older people in Ireland; reporting on the involvement of people living with dementia in care-planning processes.

Data collection included a mixed method approach; an on-line national survey of social workers, reporting on their open caseload during the month of June 2015 (N=788 older people).  As well as semi-structured interviews with social workers working in the nine Community Health Organisation areas (N=21).

Findings show that people with dementia were high users of social work services, accounting for 44.5% of the client group.  They were more likely to be excluded from decision-making processes due to (i) assumptions that they lacked capacity, (ii) family members preferences that the person was not involved, (iii) communication difficulties, (iv) time constraints, (v) little or no opportunity given or (vi) the person delegated decision-making to others. Good practices were identified through multidisciplinary team approaches and formal care planning meetings.

This research highlights variability in how people with dementia participate in decision-making around their care. It sheds light on existing barriers which challenge the full implementation of the ADM legislation; highlighting the need for appropriate guidance and education for Health and Social Care Professionals. The findings also show that family dynamics and existing relationships can play a role in participation. To ensure consistent opportunities for participation, effective practices and approaches to supporting the participation of people living with dementia in care planning needs to be developed and rolled out in all care settings.



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche