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P18. Inclusion of people with dementia

Detailed programme, abstracts and presentations

P18.1. The many voices of dementia advocacy


1Dementia Alliance International, Adelaide, Australia, 23 Nations Dementia Working Group & Dementia Alliance International, Sheffield, United Kingdom

Dementia Alliance International (DAI), 3 Nations Dementia Working Group (3NDWG) and Alzheimer’s Society worked as partners to deliver a small capacity building project for self-advocacy and inclusion on dementia. The project aimed to identify the barriers as well as tools to support inclusion of people impacted by dementia in campaign activity and self-advocacy. The project partners consulted with dementia working groups and individuals, identifying that barriers to self-advocacy can include: confidence, accessibility, discriminatory language, stigma and lack of engagement from others.

This session will present the project, including:

  • Analysis of the barriers and solutions to increasing self-advocacy on dementia, including the work of dementia working groups worldwide.
  • A Directory which collates relevant existing resources that support inclusive working, including tools to support self-advocacy and to help organisations work more inclusively.
  • A short film of and by people living with dementia aimed at supporting and encouraging self-advocacy by sharing their experiences, motivation and tips on speaking out

Participants of the film said:

  • "The driving force for me becoming a self-advocate on dementia is there is so much I want to do and share and just like my physical health I want to do as much as I can while I can because the day will come when I can’t." Kris, USA.
  • "The first few times that you speak out publicly you're terrified of not remembering what you want to say but then you find out every speaker is the same and that even people without dementia are like that." Kate, Australia.
  • "To someone who is thinking should I advocate or shouldn't I - try and see!" Agnes, Scotland.

P18.2. A toolkit to support and inspire researchers to collaborate more with people with dementia/ carers


Alzheimer Nederland, Utrecht, Netherlands

Introduction:To ensure the relevance of the results of scientific research for people with dementia and carers, Alzheimer Nederland wants them to participate in dementia research in the Netherlands. This is why we want to inspire researchers to work towards a partnership. In the past several years we have noticed researchers are motivated to work together but they are struggling to do so. Therefore, we developed a toolkit for them to support and inspire them.

Method:The toolkit was developed using years of experience with patient participation within the national research program Memorabel in which Alzheimer Nederland is responsible for the involvement of people with dementia and carers. Amongst others information was gathered via the progress reports of dozens of research projects and by interviews with lay-experts and researchers. The toolkit was developed in close collaboration with a science-journalist.

Results:5 information articles (the what-why-when-where and how) and 4 interview stories were written. The articles give an insight on which parts of the research project people with dementia and carers can be involved, why it’s important to involve them, when in the research cycle it’s best to involve them, where you can find them and how they can be involved. The inspiring interviews give an insight in the more personal experience of both parties.

Discussion/Evaluation:The toolkit was launched in 2018 and the first researchers have used the toolkit in the application phase of the grant cycle ‘Memorabel 7’. This year the toolkit was evaluated and we will further develop the toolkit.

P18.3. Experiences, challenges and opportunities for involving people with dementia and caregivers in Irish research

O'PHILBIN Laura1, QUAID Kevin2

1The Alzheimer Society of Ireland, Dublin, Ireland, 2Dementia Research Advisory Team, Cork, Ireland

People with dementia and caregivers of people with dementia have the right to authentic inclusion and involvement in research that pertains to them. In addition, they can bring unique insights that add significant value to research. Person/Patient Public Involvement (PPI) occurs when the public/patients work in partnership with researchers in setting priorities for research, planning and managing research studies, as well as in disseminating findings and putting results into practice. In line with Alzheimer Europe’s position, the Alzheimer Society of Ireland (ASI) is working hard to support and build capacity for PPI in Irish dementia research.

The Dementia Research Advisory Team was established in April 2019 and is supported by ASI. It is a group of experts by experience (6 caregivers and 5 people living with dementia) who influence, advise and work with researchers across Ireland in a PPI capacity. Team members collectively developed terms of reference detailing their expectations of ASI, researchers, and their role in all PPI activities. Team members will focus on becoming active stakeholders in Irish dementia research, and ASI will support them to build their capacity to be involved through capacity-building workshops and continuous evaluation.

This joint presentation will discuss the development, capacity building, and experiences of the Dementia Research Advisory Team. Mr Kevin Quaid, who has a diagnosis of dementia, will discuss the progress of the team and report on members’ experiences of being involved in Irish dementia research. He will also discuss the impact that research involvement has had on team members and on the research they have been involved in. Practical ‘lessons learned’ on what did and did not work well will be presented, in addition to how the Dementia Research Advisory Team has navigated challenges and opportunities for involvement of people living with dementia and caregivers in research.

P18.4. Creating organisational change to involve Dementia Voice


Alzheimer’s Society, London, United Kingdom

“Our people will respect the experience and knowledge of PABD by listening to their voice and including them in our work to deliver the New Deal on Dementia.” Managers Charter Alzheimer’s Society 2019.

In 2017 Alzheimer’s Society invested in a new team of staff and volunteers who would work to embed a culture of meaningful and continuous engagement.

The Dementia Voice plan (2018-2022) is a rights based (not just a “nice to do”) strategic plan for involvement of people affected by dementia in our work and that of wider society through our policy and campaigning offer.

It builds on the work of the engagement and participation team (2014-2017) which:

  • Introduced the “co-production” concept to our people
  • Increased awareness of the need to include people affected by dementia in decision making
  • Reviewed how we gather data about type and frequency of involvement activity

By March 2022, the Alzheimer’s Society will be exemplars in the field to inspire, enable and influence others to change:

  • Offering everyone affected by dementia (carers and people with dementia at all stages of the illness) the opportunity to use their skills and experiences to influence change
  • Enabling people affected by dementia to: - Volunteer - Continue to work for an organisation after a diagnosis
  • Evidencing involvement at all stages from making decisions with our senior leaders through to working with our people providing local service
  • Encouraging people under-represented in our work to get involved

Our people have a strong desire to work together with PABD but there are barriers including lack of time and resource, poor understanding of what good involvement is and how to do it. In 2019, AS presents evidence of best practice examples of employing PABD, increasing involvement across the organisation including in recruitment of staff, campaigning, marketing, fundraising and service development.

P18.5. Turning ambition into practice – Launch of the first-ever ‘Flemish working group of people with dementia’ in Belgium


1Alzheimer's League Flanders, Turnhout, Belgium, 2Flemish Working Group of People with Dementia, Mechelen, Belgium, 3Flemish Working Group of People with Dementia, Antwerp, Belgium, 4Flemish Working Group of People with Dementia, Ghent, Belgium, 5Flemish Working Group of People with Dementia, Sint-Niklaas, Belgium, 6Flemish Working Group of People with Dementia, Ostend, Belgium, 7Flanders Centre of Expertise on Dementia, Antwerp, Belgium

End of 2018, the Alzheimer’s League Flanders and the Flanders Centre of Expertise on Dementia started with the first-ever ‘Working Group of People with Dementia’ in Flanders (Belgium). The Working Group consists of people with dementia and their caregivers.

The idea originates from the Flemish awareness campaign ‘Forget dementia, remember the person’ and is in line with the Dementia Strategy of Flanders and the mission of the Alzheimer’s League Flanders and the Flanders Centre of Expertise on Dementia to encourage society to strengthen the autonomy of people with dementia and their family caregivers.

We are proud to announce that the Flemish Working Group of People with Dementia will launch the first ‘Charter for a dementia friendly society’ and their introduction movie in Belgium in May 2019. Together with the members, clear goals and ambitions were defined, such as reaching out more proactively to the media and opinion makers, ensuring meaningful involvement of people with dementia in project development, giving research and policy advice and valuing the expertise of people with dementia as the starting point to help reduce the stigma around dementia. We want to empower people with dementia and reach out to society to respond to their needs and know and respect their rights.

In the presentation, coordinators and people with dementia will explain their priorities upon which the Charter is based. Their introduction movie will also be shown for the first time for an international audience. The Charter focuses on the importance of the following rights of people with dementia: Listen to us – Give us a voice – Include us – Give us the opportunity to meet peers – Use respectful language – Include us in setting policy guidelines – Give us the opportunity to learn and experience new things – Evolve towards a dementia friendly society.

P18.6. Dementia friendly taxi journeys in rural areas in South Ostrobothnia, Finland


The Memory Association of South Ostrobothnia, Finland

In South Ostrobothnia, 23% of population are over 65 years old and 7000 people live with dementia. Dementia and age-friendly South Ostrobothnia project was launched in 2017, to create a specific model that will support and improve the quality of life for older people and people with dementia. Project works closely with local firms and companies.

Aim: The aim is to help firms and companies to develop and change their services towards more dementia and age-friendly. So far 117 different firms and businesses have participated, and especially many taxi entrepreneurs from rural areas have improved their services. In rural areas of Finland public transportion is not an option. The only choice of transportation for many elderly and especially for people with dementia is a taxi. Local, familiar taxi driver can help to reduce stress and anxiety of travelling. Reliable transport service for people with dementia can enhance their independence for example enabling them to run errands on their own. Thus also making everyday life of their carer little bit easier.

Methods: Taxi entrepreneurs and their employees have been taught about memory disorders, dementia prevention, how to better support, communicate and understand people with dementia. In co-operation with older people company’s services have been reflected and enhanced. During the project 1383 older people have given their opinions of what they consider as dementia friendly services. These opinions and ideas have been communicated to the companies to help them improve their services.

By participating in the project, companies get certificates and dementia friendly stickers to show their specialized customer service. Taxi entrepreneurs play a key role in enabling citizens in rural areas to grow old in their familiar neighbourhoods with their friends and families, to participate and be an active member of one’s community, to independently use local services and run errands.



Last Updated: Tuesday 10 December 2019


  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche