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P1: Involving people with dementia

Detailed programme, abstracts and presentations

P1: Involving people with dementia

P1.1. Research into practice: People with dementia creating change in the Joseph Rowntree Housing Trust (JRHT)

BLAKER Katherine, FLORY Eddy

Joseph Rowntree Foundation (JRF) has funded a three year research programme seeking out solutions to enable people to live well with dementia. 

One strand of this research has explored how taking a community development approach to building a dementia-friendly organization can deliver change for residents, staff and their families, and the wider communities around JRHT workplaces.

In this action research programme staff have worked with people with dementia to deliver four projects of benefit to the wider community, namely, 1) a dementia friendly courtyard garden in a residential care home, 2) refurbishment of a community centre, 3) development of a dementia-friendly public park, 4) distribution of small grants to community groups to benefit people with dementia.

In this presentation, Katherine, who as Community Development Manager, has been coordinating this programme of work will:

a)     explain the rationale behind the community development approach adopted by JRHT;

b)     share how opportunities to involve people with dementia were selected;

c)     describe via a short film, how people with dementia informed the refurbishment of the community centre where they meet regularly

d)     share her personal learning and offer suggestions of issues to consider when planning to involve people with dementia in your own work. 

The Joseph Rowntree Foundation is an endowed foundation based in the north of England that invests in social research and aims to influence policy and practice via demonstration.  The Joseph Rowntree Housing Trust is a housing and care service provider delivering general needs social housing, housing with care and residential care.  Both organisations are based in York, UK.

P1.2. Reflections from the Irish dementia working group and the Alzheimer Society of Ireland on the benefits and challenges of participating in dementia research


The publication of Ireland’s first National Dementia Strategy in December 2014 included a commitment to dementia research underpinned by dedicated funds of €4.7 million; the largest ever State investment of its kind. Running alongside this investment is an increased national focus on public patient participation in research. These two pull factors are creating an increased national demand for the involvement of people with dementia in research. 

Around this same time members of the Irish Dementia Working Group, having a keen interest in the area of research, formed a research subgroup. Members of this group want to engage in research, taking a partnership approach, engaging beyond passive research participation and to develop more innovative and leadership roles within the dementia research community.

This presentation will reflect on these pull and push factors for the increased engagement of people with dementia in research, both from an organisational and individual perspective.  The activities of the research subgroup, such as involvement in the ASI’s research review committee, membership of an international global research project advisory group and engaging in more traditional research roles will be discussed. The presenters will reflect on the challenges faced, identifying innovative approaches to overcoming these while identifying the benefits of research engagement to both the organisation and to individual working group members.

P1.3. Developing the involvement of people living with dementia and carers in policy making


Background:Alzheimer Scotland is committed to making the voices of people living with dementia, and carers, heard and acted on by policy makers and decision makers.  We have successfully supported the Scottish Dementia Working Group and the National Dementia Carers Action Network  to campaign at national level, influencing the content and implementation of Scotland’s National Dementia Strategy . 

New legislation means that health and social care agencies have a duty to involve people who use services and carers.  We therefore identified a need to work harder to ensure that as wide a range as possible of people with dementia and carers have the opportunity to influence policy and strategy development – ensuring greater impact at local and regional level, and including people who are not able to be active in the national campaigning and working groups. 

Aim:This programme of work seeks to:

  • Increase the involvement of people with dementia and carers in policy making in Scotland through involvement in Alzheimer Scotland’s policy development work, and through supporting direct links with statutory sector decision makers.
  • Identify what we can do to involve people with dementia and carers in policy making, and establish which are most appropriate in any given situation. 

Methods and key findings:Beginning with an appreciative inquiry approach, this programme has engaged colleagues from across Alzheimer Scotland, recognising that a broad range of expertise and buy-in is required to successfully achieve the programme aims. 

A wide ranging consultation within and beyond the organization identified:

  • Good practice
  • Resources to support involvement – both what already exists, and what was required to be developed
  • Support networks to enable expertise and resources to be shared to increase capacity
  • Remaining barriers to be addressed

Conclusions: In a European context, Scotland is a good testing ground for best practice, as this principle enjoys wide acceptance among statutory sector decision makers as well as among campaigning organisations like Alzheimer Scotland.

This presentation will provide an overview of the development of good practice, demonstrate what works in the involvement of people with dementia and carers in policy making, and outline key remaining barriers, with suggestions about how they can be overcome.

P1.4. Partners in projects: Preparing people living with dementia for active involvement in research, evaluations, and service developments

PARKES Jacqueline, THOFT Diana Shack , HORSBØL Anders, PYER Michelle

Increasingly over the last decade since there has been progressive calls from both national and international health and social care funding organisations for greater, public involvement in the health and social care arena. Such representation on project steering groups ensures that all stages of project development are transparent and accessible to lay scrutiny. The inclusion of the patient ‘voice’ on the team also provides a unique perspective ‘from the inside’. However, in order to be able to contribute confidently within steering group meetings, it has been suggested those wishing to participate should be provided with training.

In response to the growing need to actively and meaningfully incorporate the ‘public voice’ in research, evaluations, and audits, Dr Jacqueline Parkes has developed the ‘Public Engagement in Research Programme’. This training has been specifically designed to support lay representatives, who wish to become more actively involved in health and social care research. The tailor-made course, which is underpinned by an evidence-based ‘PPI Training Model’, is currently being developed further for delivery in Northern Denmark for people with early stage dementia by Diana Shack Thoft from UCN in Denmark.

Framed by participatory research methodologies, twelve people with early-stage dementia from an adult school in Denmark are being trained in research skills inspired from previously published (Parkes et al 2014) patient and public involvement model. Two participatory research projects are being completed, informed by participants’ own suggestions and experiences, with the aim of developing a model of how people with early-stage dementia can be trained and involved as active research partners.

This oral presentation will present the design and the development process of the ‘Public Engagement in Research Programme’ and the process by which the model currently being adapted for people living with the early stages of dementia who wish to become involved in research.

P1.5. I survive best by being active

KIMENAI Jasper, DANEN Saskia

For a person with dementia and her caregivers it is important to be part of the community, both to be able to make a contribution and to participate in the society. To make this participation possible Alzheimer Netherlands is focusing on two strategies with their program Dementia Friendly Society.

Strategy 1: the emphasis is on spreading knowledge and increasing awareness within civil society about dementia and its impact on a persons’ life. The training given by Alzheimer Netherlands and it’s 51 local branches to local governments, social- and cultural organizations, schools, supermarkets, police and firemen, banks and museums.

Strategy 2: the emphasis is on being able to participate in the society in many ways. A good example in which Alzheimer Netherlands participates is ‘Young and Old (learn) together’.  This project takes the viewpoint that people with dementia have many talents and that those talents can also be utilized in education. People with dementia may volunteer to work in education or to be an expert. Students can learn a lot from their experience as a ‘patient’ and the people with dementia feel they continue to make a meaningful contribution.  Instead of looking at what people with dementia cannot do, the focus is on what they can do. Students, but also employees have to learn to make use of the strengths of people with dementia. This requires a substantial cultural change. At this moment three volunteers with dementia are working in two locations of the community college. Two of them also participate in the project group. Good supervision and peer support are crucial success factors.  Recruitment of more volunteers has recently been started. The aim is to have at least 10 volunteers participating by the end of September 2015.

With many activities, dementia is being shown to the public as a normal aspect of everyday live which can happen to anyone.



Last Updated: Monday 28 September 2015


  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene