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Alzheimer Europe hosts Alzheimer's Association Academy session focusing on advocacy initiatives and working with policy makers

Tuesday 14 September 2021

On 14 September 2021, Alzheimer Europe held an online session of its popular Alzheimer's Association Academy series. These Academy sessions have been running since December 2015, and have been online since the start of the COVID pandemic. The theme for the session of 14 September was “Advocacy initiatives and working with policy makers". There was a total of 39 participants at the Academy: 6 Alzheimer Europe staff members, including Executive Director Jean Georges who chaired the meeting; 23 representatives of Alzheimer Europe national member associations from 15 different countries; 8 industry representatives; and 6 expert speakers.

The first speakers were Nils Dahl, Ministry of Health, Germany and Sabine Jansen, Deutsche Alzheimer Gesellschaft (DAlzG) - the German Alzheimer association, who gave a joint talk on "The German Alzheimer’s Association, a key partner for the development and implementation of the German Dementia Strategy". Mr Dahl gave the background about the strategy itself and said that Germany is now in the first phase of implementation. He also mentioned the creation of an alliance for people living with dementia and said that one of the most important aspects of implementing the strategy is the partnership with the DAlzG. Ms Jansen then spoke about this partnership and about the role of her organisation in four of the working groups carrying out some of the 27 aims and 162 measures set out in the strategy. These four working groups in which DAlzG plays a role are on dementia inclusive communities and carers, with two of them working on improving support for people with dementia and carers (professional and voluntary support), a third looking at advanced care and long-term care and the fourth on dementia research.

Other actions include Germany's version of the Dementia Friends programme, called "Demenz Partner", which includes a course of around 90 minutes. Federal Minister of Health Jens Spahn is a dementia friend, and working together with him and other Ministries, allows the DAlzG to reach more people and encourage them to think about dementia and about being more inclusive. Currently, the Demenz Partner programme is working on training 10,000 transport workers throughout Germany, which should also help make everyday life easier for people with dementia, she said. Finally, she mentioned working with various sports teams, including ice hockey team the Berlin Ice Bears and the women 's national football team. This is another way to reach more people and also to ensure that people with dementia can participate in sports. In closing, Mr Dahl took the (virtual) floor again, emphasising another area of cooperation of their two institutions, which is around measures from the fourth aim of the strategy, focused on research, i.e. promoting more participation of people with dementia in research. The first example he gave was a project called “PraWiDem”, aiming to "close the gap". The second is a project on Dementia Care Management called “RoutineDeCM”. A "care manager" is a professional caregiver, he noted. Both of these projects are funded by the Ministry of Health.

Lorène Gilly from France Alzheimer, was up next, with a presentation on "Alzheimer as a political priority in France: ups and downs of public engagement". Things have changed for the worse in France, in recent months, with regards political engagement in the area of dementia and France Alzheimer is having to fight hard, in the context of the pandemic, due to the tight budget available to engage in concrete action. She mentioned repeated national consultations on the subject of autonomy to announce a long-awaited reform, which will now not see the light of day, before the end of the current presidential term. This announcement was a huge disappointment. With the presidential race beginning and elections taking place next April, it is a difficult time to get the government to commit to anything. Ms Gilly also emphasised the launch of a new neurodegenerative diseases roadmap 2021-22, which was unfortunately only launched midway through the first of its two-year period and falls far short of what France Alzheimer had hoped for. Since the end of the former plan 2014-2019, France Alzheimer has created an informal collective, with stakeholders such as France Parkinson and Multiple Sclerosis associations, with the aim of fighting together to boost the engagement of the government in building a new strategy/plan, but it has not been willing to start a new strategy the year before the election. The roadmap was launched instead, through work with the ministry of health and the ministry of autonomy. Overall, Ms Gilly said that France Alzheimer is not satisfied with the roadmap, as it lacks ambition, the budget is unclear, there is no agenda for implementation and there are no details on evaluation either. Health Minister Olivier Vérant told France Alzheimer that he wants to complete the first version of the roadmap, with complementary measures to be set up in 2023 and 2024, but due to next year’s election, this does not alleviate France Alzheimer's fears, as it may not be the same government in place. The presentation highlighted some of the real difficulties faced in the areas of advocacy and working with policymakers, in the "in-between" period when a government is in its final months before a general election. It also stressed, however, that France Alzheimer is not giving up, but rather is reaching out, working with some of the main services of the Ministry of Health on three measures from the roadmap, developing a plan of action, reaching out to MEPs, raising awareness among the public and trying to involve everyone in this battle. Their aim is for the current roadmap to count and to hopefully be a transition to a greater strategy.

Clodagh Whelan from The Alzheimer Society of Ireland (ASI) was next, with a talk about "Using elections and the budget submission as key campaigning opportunities". She began by saying that her main focus would be on how to talk to policymakers. Ireland, she noted, is famous for its storytelling, and this is something she brings into her policy work, which helps convey messages to policymakers and the general public in an engaging and clear manner. Our organisations and academics need a reason to come together, and opportunities to do so, she stressed, and these national opportunities are really important. At the ASI, they have found that personal stories coupled with evidence work best. Making it personal makes it harder to say no. In Ireland politics is local and people want to know what is happening in their area. The ASI therefore sends local politicians data about their area, so that they are well-informed. She also stressed the importance of "keeping it simple", and laid out some actions taken before, during and after each campaign. Before: Gather evidence and create reports. A lot of smaller government departments don’t have time to do this, so bringing this to them is helpful. The context is important too, for instance COVID is the obvious context, just now. Considering the context of the policymakers themselves and of their parties is important too, she noted. During: Most people want to help and we need to help them to do that. Giving them straightforward and accessible ways to do so, being upfront and honest about where we are and what we need, usually works well, she said. Keeping the story going is also hugely important, for example if a campaign is taking place over a few weeks, they try to have several outputs throughout. After: The ASI reviews its work to see what went well and what didn’t. They ask people with dementia, carers and organisations for feedback, as well as asking politicians during their "downtime" (i.e. not during the run-up to an election). She particularly stressed asking policymakers if there is a reason they are saying no that you are unaware of, as this helps to shape future campaigns and approaches. She also highlighted the importance of engaging with "grassroots" and thanking them for their support. In closing, she conceded that this straightforward approach will not always get you what you want and things certainly don't move quickly, but said that "taking the incremental wins" and focusing on the progress made is the best way to keep up hope. Dementia is a huge political and social issue, and it will not be solved with one single campaign.

Following these three presentations at a national level, the final one was given by Melissa Mitchell and Susan Wile Schwarz of the Global Coalition on Ageing (GCOA), USA. They gave delegates a preview of the GCOA's upcoming publication, "The Alzheimer’s Innovation Readiness Index", and looked at ways in which it might be used as a tool to effect change at national level. The publication will be out in late October, so we cannot share the details at this time, but will report on the launch when it happens, so watch this space! Jean Georges complimented all the speakers on their informative and engaging presentations and on the interesting initiatives mentioned and advice given on how we can all work better together and with policy makers. Our next Academy session will take place on 13 October 2021 and will look at dementia-friendly initiatives.

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