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Alzheimer Europe

AE

Alzheimer Europe sees its mission as • changing perceptions, policy and practice in order to improve the lives of people with dementia and their carers • ensuring equal access to brain health promotion, timely diagnosis and post diagnostic support for all Europeans affected by dementia Alzheimer Europe will achieve this mission by providing a voice to people with dementia and their carers, making dementia a European priority, changing perceptions and combating stigma, raising awareness of brain health and prevention, strengthening the European dementia movement and supporting dementia research.

Lobbying Activity

Meeting with Sirpa Pietikäinen (Member of the European Parliament)

3 Jun 2025 · Alzheimer's disease

Meeting with Hilde Vautmans (Member of the European Parliament)

3 Jun 2025 · Alzheimer lunch debate on new treatments in Europe

Meeting with Isabel Wiseler-Lima (Member of the European Parliament)

10 Dec 2024 · Dementia research as a European priority

Meeting with Nina Carberry (Member of the European Parliament)

10 Dec 2024 · Alzheimer Research

Meeting with Hilde Vautmans (Member of the European Parliament)

10 Dec 2024 · Alzheimer

Meeting with Adam Jarubas (Member of the European Parliament, Committee chair)

18 Nov 2024 · Alzheimer in Europe

Meeting with Dimitris Tsiodras (Member of the European Parliament)

6 Nov 2024 · Public health

Meeting with András Tivadar Kulja (Member of the European Parliament) and Eli Lilly and Company

5 Nov 2024 · Alzheimer disease

Response to Interim Evaluation of Digital Europe

20 Sept 2024

Alzheimer Europe is the umbrella organisation 41 national Alzheimers associations from 36 European countries. We are a non-profit non-governmental organisation (NGO) and our mission is to change perceptions, policy and practice in order to improve the lives of people affected by dementia. By providing strategic funding to advance the use of digital technologies across economies, countries and society, the Digital Europe Programme is helping to address digital exclusion, which is a major issue for older people. Alzheimer Europe is encouraged by DEPs efforts in this area, and recognises the value that digital technologies can bring to people affected by dementia. However, we emphasise the need to involve people with dementia and carers in a meaningful way during the development of digital technologies, and to ensure these innovations meet the needs and values of end users and are beneficial to society (link to PI and other resources). A welcome development would be the inclusion of specific requirements for meaningful stakeholder engagement and Public Involvement in future calls and programmes. Alzheimer Europe also notes the support provided by DEP in the deployment of data spaces and adoption of Artificial Intelligence technologies. While we acknowledge the huge potential for these technologies to address major health and societal challenges, we would like to underline the risk of bias, which could exacerbate existing inequalities and further disadvantage marginalised groups. In reports and publications from our work as partners on EU-funded research projects involving AI, we have highlighted the need for greater data diversity (i.e. ensuring datasets used to train AI algorithms reflect a diverse range of ethnicities, genders, socioeconomic groupings and geographies) as well as systemic efforts to address bias in access to, deployment and implementation of AI. These efforts to enhance inclusion should extend to AI governance, enabling the benefits of these technologies to be shared by all. Finally, we would like to underline the importance of continued education and awareness-raising efforts by DEP, as well as the initiatives it supports. Older adults and people affected by dementia should not be overlooked in efforts to increase digital literacy, which can help empower individuals and enable participation in the digital economy and society.
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Meeting with Sebastião Bugalho (Member of the European Parliament)

5 Sept 2024 · Alzheimer in Europe

Meeting with Nina Carberry (Member of the European Parliament)

23 Jul 2024 · Alzheimer & Dementia research

Meeting with Marie Dauchy (Member of the European Parliament)

19 Mar 2024 · Discussion avec France Alzheimer.

Meeting with Deirdre Clune (Member of the European Parliament)

5 Dec 2023 · Alzheimer Disease

Response to Civil aspects of the cross-border protection of vulnerable adults

16 Aug 2023

Alzheimer Europe broadly welcomes the Commissions proposals in relation to cross border arrangements for adults in need of legal support, as well as the proposal for Member States to join the HCCH 2000 Protection of Adults Convention. We are aware of some of the ongoing debate within civil society about these proposals, including UNCRPD compliance, as well as the need for a greater focus on supported decision-making. Alzheimer Europe has long supported and advocated for countries to become Contracting Parties to the HCCH 2000 Protection of Adults Convention. As such, we strongly welcome the proposal for the Council Decision. Alzheimer Europe has previously considered the ethical and practical considerations of legal capacity and decision making in our 2020 Ethics Report Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia, which we attach for your consideration. We would draw your attention to our consideration of the subject in section 3, which addresses some of the challenges in the approach of the UNCRPD. Specifically, pages 22 and 23 outline a combined supported decision-making model, which strongly emphasises the need for supported decision-making to be the default approach taken when decisions need to be taken, with substitute decision making only used if supported decision making proves insufficient and all reasonably available resources for support have been exhausted. We believe that the Commissions proposal in relation to cross border arrangements should be amended in order to reflect this model. Given the relevance and importance of this issue for persons living with dementia, their families and carers, Alzheimer Europe would be pleased to offer further input, if this would be useful to the Commission.
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Meeting with Deirdre Clune (Member of the European Parliament)

21 Mar 2023 · Crisis management and care coordination in relation to dementia

Response to A comprehensive approach to mental health

31 Jan 2023

1. Overview Alzheimer Europe welcomes the Commissions decision to take action in this area and acknowledges the context approach of the initiative within the scope of the EUs existing programmes and those of the World Health Organization (WHO) and the Sustainable Development Goals (SDGs). However, we believe there are some crucial points which the Commission has not addressed within the call for evidence, which must be included in the development of a dedicated initiative on mental health. 2. Dementia as a part of mental health Dementia as a policy issue sits across many areas, including those related to health, research, disability rights and older persons. Within healthcare systems specifically, the condition is often dealt with by different medical specialties, including mental health and psychiatry, neurology and gerontology. Under the WHO and WHO Europe administrative structures, dementia falls under mental health and specifically, by the latter, dementia is addressed in the European Framework for Action on Mental Health (EFAMH) and the accompanying Mental Health Coalition, in which Alzheimer Europe participates. Within EFAMH, there is a dedicated workstream focused on the mental health of older people, which focuses on dementia, as well as other causes of poor mental health in older people (e.g. social isolation, stigma etc.) We strongly encourage the Commission to ensure that the initiative more closely reflects the work of the WHO in these areas, identifying the aims and objectives of these workstreams, and how EU programmes such as EU4Health (including the Healthier Together initiative) can support Member States to achieve the goals of these existing policy drivers. 3. Omission of carers Alzheimer Europe is surprised that the Commissions call for evidence does not reference informal carers, a group which generally experiences poorer physical and mental health outcomes, as well as greater socio-economic pressures than the general population. As identified in the call for evidence, mental health outcomes for the population as a whole were worsened by the pandemic. For carers of persons with dementia, this experience was particularly difficult, with stress, isolation and burnout especially prevalent due to the interruption of care and support service, disruption to daily routines, disruptions to daily routines and the worsening of symptoms of the care for person. We therefore strongly encourage the Commission to specifically consider the mental health of informal caregivers, to identify the key causes of poorer mental health and to support Member States to address these in the policies and services within their countries. 4. Monitoring and targets Alzheimer Europe believes the Commission must consider broader monitoring and targets revise its targets and intended measurement for an initiative. Whilst measurement against SDG 3.4, as well as European Core Health Indicators (ECHI) on depression and suicide, are suitable indicators, others such as the ECHI number of available psychiatric beds provide little insight, other than a slight indication of whether countries are moving towards deinstitutionalisation. In relation to dementia (and likely for other mental health conditions), diagnosis rates, timeliness of diagnosis (particularly important for progressive conditions), access to and quality of care (including post diagnostic support), use of psychotropic medications etc. are all key issues which should the Commission should consider how to address and monitor within their proposed initiative.
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Response to European Disability Card

16 Dec 2022

1. Overview Alzheimer Europe supports the introduction of a European Disability Card. We believe that such a measure has the potential to address some of the barriers faced by persons with disabilities across Europe, including persons living with an invisible disability, such as dementia. We recognise that there is currently no mutual recognition of disability status between EU Member States and no guarantee of national disability cards between Member States. As such, the introduction of an EU Disability Card has the potential to address issues which disadvantage people with disabilities when exercising their right to freedom of movement. However, the proposed limited application of the Disability Card, coupled with outstanding issues related to disability recognition by Member States and longstanding issues with the EU parking card for people with disabilities (i.e. the Blue Badge Scheme), mean we have concerns about how the scheme will operate in practice. Alzheimer Europe has outlined our concerns below. In addition, we would like to express our support for the points raised by the European Disability Forum in their response. 2. Dementia as a disability Conditions such as dementia, which cause cognitive impairment, are considered as disabilities under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Dementia is sometimes referred to as an invisible disability, as symptoms are not always outwardly visible and generally not physical until the late stages of the disease. Despite all Member States being signatories of the UNCRPD, the recognition of dementia as a disability varies across member states. This has a significant impact on the types of social protection to which a person with dementia is entitled, including the Blue Badge Scheme. As the proposal stands, the Disability Card will not address issues of national eligibility criteria, national definitions of disability or issuing procedures. These longstanding issues duplicate some of the most serious shortcomings of the Blue Badge Scheme. Whilst understanding the shared competence in this area and the Commissions wish to respect the principle of subsidiarity, the approach proposed will not achieve the goals outlined in the call for evidence (especially those related to the UNCRPD and the Sustainable Development Goals). We believe that the Commission must address these shortcomings in the existing Blue Badge scheme, to remove disparity between Member States. Additionally, whilst the origins of this initiative relate to freedom of movement, the broader applicability of the card during the pilot (in the areas of culture, leisure and sport) has demonstrated that the card can be used in other service areas. As such, we would wish to see the scope of the card broadened. 3. EU Disability Card In support of the objectives of the Disability Card, Alzheimer Europe would highlight the case of Petri Lampinen, from Finland, who is a member of the European Working Group of People with Dementia (EWGPWD). He took part in the pilot project for the European Disability Card and wrote an article in our Dementia in Europe magazine in June 2019, to share his experience: I have been using an EU Disability Card for about a year now and have been very happy with it. I have used it at airports. Thanks to the card, I have had access to priority boarding, which helps because hustle and bustle and being rushed causes me problems when travelling. I keep my disability card ready to show at security too, to avoid difficulties. Another good point has been that the card includes a symbol showing the need for assistance. If I need help, it is always close at hand.
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Meeting with Stella Kyriakides (Commissioner) and

21 Sept 2022 · Rare diseases

Response to Proposal for a Council Recommendation on long-term care

29 Mar 2022

In its 2019 Dementia in Europe Yearbook, Alzheimer Europe estimated that approximately 8 million people live with dementia in the European Union, with the number expected to rise to 14 million by 2050. Dementia has significant social and economic implications in terms of direct medical and social care costs, as well as the costs of informal care. According to World Health Orgnization (WHO) figures, between 2000 and 2019, the number of Disability-Adjusted Life Years (DALYs) associated with Alzheimer's disease and other dementias has doubled. Furthermore, the WHO estimates that in 2019, the estimated total global societal cost of dementia was USD 1.3 trillion, which is expected to surpass USD 2.8 trillion by 2030 as both the number of people living with dementia and care costs increase. The nature of dementia as a progressive and life-limiting condition for which no curative or disease-modifying treatment is currently available in Europe, means that there is a need to ensure that high-quality long-term care services are available and affordable in each Member State across the European Union. To achieve this stated objective, Alzheimer Europe believes that the proposed approach of the European Care Strategy is a positive step, which identifies many of the key challenges which must addressed. We believe the proposal can be strengthened by the inclusion of additional points related to training and skills of the care workforce, as well as a dedicated focus on care coordination. Our submission to the Call for Evidence sets out in greater detail some areas which must be addressed, specifically in relation to services and supports relied upon by people with dementia and their carers, as well as resources we believe should inform the development of the provisions related to long-term care in the European Care Strategy. Alzheimer Europe would be pleased to further contribute to this work and would be happy to provide further information on the specific needs of people with dementia and their carers, as may be helpful for the Commission.
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Meeting with Giorgos Rossides (Cabinet of Commissioner Stella Kyriakides) and European Patients' Forum (EPF) and

25 Nov 2021 · Follow up to Cssr Kyriakides’ meeting with CSOs on 25/10/2021 on civil society funding through EU4Health

Meeting with Stella Kyriakides (Commissioner) and European Patients' Forum (EPF) and

25 Oct 2021 · VTC Meeting: EU4Health Work Programme 2022 and operating grants.

Meeting with Stella Kyriakides (Commissioner) and European Patients' Forum (EPF) and

30 Jul 2021 · Meeting with civil society representatives regarding the EU4health programme.

Meeting with Paula Duarte Gaspar (Cabinet of Commissioner Vytenis Andriukaitis)

4 May 2015 · Commission and stakeholders' action on Dementia and Alzheimer and cooperation in this area