JULY-AUGUST 2021 ALZHEIMER EUROPE TABLE OF CONTENTS NEWSLETTER HIGHLIGHTS IN THIS ISSUE 01 15 July: Claudia Gamon MEP joins the European Alzheimer’s Alliance 8 Welcome 19 July: We’re campaigning for DG Santé to #SaveEUHealthNGOs 3 02 19 July: Young-Onset Dementia more prevalent than it was thought 19 COVID-19 Situation 30 July: See our selection of research highlights from AAIC 2021 14 03 31 July: #31AEC programme is available online. Register now! 4 Alzheimer Europe 19 August: Our expert ethics working group publishes a new paper 5 05 Alzheimer Europe WELCOME networking As every year, this edition of number of MEPs in the Alliance to 93 across our newsletter covers news 26 countries. We are also hugely grateful to 06 from both July and August. the 56 MEPs (including many from the EU projects We are proud to have Alliance) who support our call to reinstate published a paper on timely operating grants and especially those who 08 diagnosis and care for people have taken the time to contribute to our European Alzheimer’s with dementia from ethnic #SaveEUHealthNGOs social media campaign. Alliance minority groups, in the International Journal The World Health Organisation has launched of Geriatric Psychiatry, this month. An expert a toolkit for the promotion of dementia- 08 ethics working group led by Alzheimer friendly initiatives. This resource is its latest EU developments Europe earlier produced an extensive report tool for establishing and scaling-up on this issue, a policy brief and a guide for dementia-friendly initiatives globally. 10 health and social care workers. The newly- On the research front, a new paper on the Policy watch published paper provides a brief summary in global prevalence of Young-Onset Dementia which the members of the expert working 12 has been published in the journal JAMA group present some of the key challenges Neurology. This important research aims to Members’ news and recommendations for healthcare provide policy makers with much-needed 14 clinicians. information to organise health care in an AAIC Watch Earlier in the summer, we also published our appropriate way as the rates indicate the Annual Report showcasing our work in 2020, condition to be more prevalent than 17 much of which would not have been possible previously thought. Science watch without an operating grant from the A number of other noteworthy research European Commission. These past few developments were announced during the 21 weeks, we have been responding to the Alzheimer’s Association International Dementia in Society disappointing decision by DG Santé to Conference and we report on some of these exclude the operating grants mechanism in the “AAIC watch” section of this 21 from its 2021-2022 EU4Health Annual Work newsletter. New Publications & Programme. This decision puts key activities Regarding our own conference, we are Resources of European health NGOs in jeopardy, and looking forward to the 31st Alzheimer Europe this during the greatest public health crisis in Conference (#31AEC), which will be held 23 living memory. We hope, following our online from 29 November to 1 December. Education online campaign together with a coalition of Please take advantage of early bird health NGOs, and a number of meetings with registration, available until 15 September. 23 DG Santé and EU Health Commissioner Stella The exciting conference programme is Job opportunities Kyriakides, that they will reconsider. available on our website. On a more positive note, we are delighted to Jean Georges 24 welcome Austrian MEP Claudia Gamon to the Executive Director AE calendar European Alzheimer’s Alliance, taking the 24 Conferences 1 JULY-AUGUST 2021 The authors conclude by underlining the importance of Sponsors of the month considering the harms of public health measures for people Alzheimer Europe would like to express its gratitude to with dementia, calling for: caregivers to be prioritised for two new sponsors for its 2021 activities. vaccines; improved work-life balance policies for family Read more about sponsorship opportunities here: caregivers; and the restoration of routines, support, care home http://bit.ly/sponsorAE visits and therapeutic activities for people with dementia, for example via outdoor visits and the use of personal protective equipment. The Open Access article can be found here: https://www.thelancet.com/journals/eclinm/article/PIIS2589- 5370(21)00327-8/fulltext 23 August: Alzheimer Slovenia supports and empowers people with dementia during COVID- 19, through its network of "Dementia Friendly Points" and its helpline COVID-19 SITUATION 31 July: New research shows the damaging effect of COVID-19 isolation measures on the cognition and mental health of people living with dementia A systematic review of research studies has shown the damaging effects that COVID-19 isolation measures have had on the cognition, Dementia friendly activities and campaigns in local function and mental health of people with communities have provided substantial support to people with dementia. dementia and their carers during the COVID-19 pandemic. Spominčica (Alzheimer Slovenia) is coordinating a network of Published on 31 July in the EClinicalMedicine journal, the more than 240 Dementia Friendly Points. The network consists systematic review synthesises evidence from 15 studies of organisations, from Ministries, the Human Rights published during the first year of the COVID-19 pandemic (to 27 Ombudsman, care homes for elderly people, pharmacies, February, 2021), comprising all the available quantitative data libraries, schools, shops, police stations, centres for social work, on the effect of COVID-19 related isolation measures on the to local hairdressers, who are engaged in changing their services cognitive, psychological and functional health of people with and their communities to become more dementia friendly. dementia. The 15 publications include community-based and Their employees participated in a training about dementia, first care home-based studies in Argentina, Brazil, France, Italy, signs, communication and available services for families with Ireland, Portugal and Spain, involving over 6,400 people with dementia. dementia. Throughout the summer months, the Dementia Friendly Points Of the 13 studies involving people living with dementia in the network welcomed 18 new members including Ljubljana community, 61% reported a decline in cognition in a proportion Pharmacies and the Ministry of the Environment and Spatial of the population studied. Concentration, memory, orientation Planning and Public Payments Administration. and communication were the most frequently-affected Dementia Friendly Points have proved to have a significant role cognitive domains. Almost all of these studies also reported in providing access to information about dementia and services worsening or new onset of behavioural and psychological during COVID-19 in their local communities. symptoms of dementia, with half of the studies reporting adjustment of pharmacological treatment for these symptoms Spominčica has also engaged with several experts, psychiatrists, (e.g. introduction of antipsychotics). Although only two studies neurologists, psychologists, nurses and lawyers to provide on the effect of isolation on care home residents with dementia additional support on its telephone helpline. Carers of people were identified, these similarly reported worsening memory, with dementia use the telephone helpline service a lot, since it depression and anxiety in over 50% of residents. operates every day from 8:00 till 22:00, and provides an important and accessible communication channel. Spominčica 2 JULY-AUGUST 2021 has also prepared a "Guide during COVID - 19 for people with dementia and their relatives", which is available on the organisation's website: https://www.spomincica.si/ Spominčica has also been able to provide assistance and support to people with dementia and their relatives, who are in even greater distress during the pandemic, as the organisation was successful in the public tender for the action called "With modern approaches, we strengthen the strength of older people, people with dementia and their relatives in the period COVID-19" co-financed by the Republic of Slovenia and the European Union from the European Social Fund. The organisation is now carrying out this action. discontinued by a unilateral decision by the European Commission’s DG SANTE, despite this mechanism having been explicitly included in the EU4Health Programme by the European Parliament and Council of Ministers during the legislative process leading to the adoption of the programme. ALZHEIMER EUROPE All other Commission departments have kept operating grants 14 July: Alzheimer Europe publishes its Annual in their work programmes and some have even added funding Report 2020 to and increased the scope of these grants. In addition to the call issued on 25 June, Alzheimer Europe and Our 2020 Annual Report a coalition of EU Health NGOs including the European Patients‘ looks back at our activities Forum, the European Public Health Alliance and Eurordis - Rare and achievements last Diseases Europe, launched a social media campaign on 19 July year. As in the past, our 2021. The campaign, which can be followed and supported via core activities were the hashtag #SaveEUHealthNGOs asks DG SANTE and Health funded by an operating Commissioner Stella Kyriakides to reconsider this worrying grant awarded by the decision, particularly in the midst of the greatest public health European Commission