Alzheimer Europe hosts Academy session on giving a voice to people with dementia

26/04/2022

On 26 April 2022, Alzheimer Europe held an online session of its popular Alzheimer's Association Academy (AAA) series, bringing together representatives of its member organisations, European Working Group of People with Dementia (EWGPWD), pharmaceutical companies and researchers. The topic for this session, which was chaired by Dianne Gove (Director for Projects at Alzheimer Europe) was "giving a voice to people with dementia". Chris Roberts, Chair of the EWGPWD, kicked off the session with some introductory remarks, explaining the importance of giving people with dementia a voice and calling on organisations to create safe spaces that allow people with dementia to express their views, concerns and beliefs.

The first speaker was Anne-Rita Øksengård from Nasjonalforeningen in Norway, who provided an overview of their experiences of interacting with and engaging people with dementia and their relatives during the COVID-19 pandemic. Anne-Rita explained how the organisation adapted to the COVID-19 restrictions, holding meetings online rather than face-to-face, and providing support using digital tools and telephone helplines. She outlined the results of their 2021 report on how the pandemic affected the lives of people with dementia, which was based on a survey of over 1,200 people and highlighted the negative consequences of daycare centre closures and nursing home visiting restrictions. Anne-Rita highlighted shortcomings in systems developed by municipal authorities to manage infection control, and a lack of adequately-trained staff. Lessons learned included the need for pathways and guides to support authorities and facilities to maintain person-centred care, with mechanisms for addressing complaints and additional training and upskilling for staff.

The second presentation was delivered by Keith Oliver and James Erskine, representing the Three Nations Working Group (3NWG) of the Alzheimer's Society (UK). Keith is a member of the 3NWG Steering Group while James is employed by the Alzheimer's Society to support the 3NWG, which involves people from Wales, England and Northern Ireland, and was co-founded by Keith Oliver, Chris Roberts and Hilary Doxford. Keith and James spoke about the activities of the 3NWG during the COVID-19 pandemic, explaining how the group has met online regularly via zoom, hosting webinars and informal coffee chats for people with dementia, informal caregivers and family members. Keith highlighted that over 45 fortnightly webinars have been hosted since the start of the pandemic, addressing a broad range of topics including faith, dementia diagnosis, creative activities, learning disabilities and gardening, among others. These webinars are made accessible via the 3NWG website and have been viewed almost 73,000 times to date. Information, materials and invitations to participate in research or voluntary activities are also disseminated via the 3NWG newsletter. James explained his role as a supporter for the administrative and technical aspects of 3NWG activities, and emphasised the value of obtaining and acting on feedback from the broader community of people with dementia and caregivers, to tailor 3NWG activities and identify new webinar topics.

Next, Olivier Constant and Laura Weyns of the Flanders Centre of Expertise on Dementia and Alzheimer Liga Vlaanderen (Belgium) delivered a presentation entitled "Staying socially active during the pandemic: the experience of the Flemish Working Group of People with Dementia." Olivier started by outlining the vision for the Flemish Working Group, which is to "forget dementia, remember the person", acknowledging the value of people with dementia as experts by experience, and the important contributions they can make to policy, research and care. He highlighted their 2019 manifesto, entitled "hand in hand"; a charter for people with dementia that calls for greater inclusion, involvement, opportunities and respect. Over the last two years, the Working Group have continued to meet online and share their stories despite the challenges caused by the pandemic; Olivier delivered a poem written by Working Group member Antonio La Paglia, explaining his worries and fears at the start of COVID-19 lockdown in 2020. Laura continued the presentation by outlining their recent work on physical and social activity, which can be very beneficial for people with dementia. This involved the development of a second manifesto (called "step by step") and the creation of information cards, banners, videos and other materials. Laura also explained how they have developed e-learning programmes and dementia assistance cards, also participating in a television programme called "Restaurant Misverstand", where the entire staff have young onset dementia. This programme, which has recently been renewed for another season, has helped increase awareness and understanding of dementia. Olivier drew the presentation to a close by explaining how the Flanders Working Group had contributed to the new Flanders Dementia Strategy, and how important it is to advocate for creating spaces for people with dementia at the heart of a caring and warm community.

The final presentation was delivered by Anne de Boer from Alzheimer Nederland (The Netherlands) who spoke about the organisation's online consultation methods to identify views, experiences and priorities of people with dementia and their caregivers. Together with Marco Blom (Scientific Director of Alzheimer Nederland), Anne described their online panel for people with dementia, caregivers, dementia healthcare professionals and volunteers, which provides a platform for these individuals to contribute to surveys and other activities. The panel includes almost 40 people with dementia, over 1800 caregivers, 210 healthcare professionals and 3,500 volunteers from the Alzheimer Nederland local associations, providing their expertise by experience and insights. Anne explained how this online panel allows Alzheimer Nederland to support dementia research and provides a platform for people affected by dementia to express their views. Giving some examples of surveys on the panel (on housing, and on the Dutch Compulsory Mental Healthcare Act) she spoke about the importance of respecting confidentiality and ensuring the platform is intuitive and easy to use, with short questionnaires that aren't too burdensome to complete. The presentations were followed by an interactive Q&A discussion, during which questions from the audience were addressed by the panel.