Alzheimer Europe Gender Equality Plan

The Alzheimer Europe Gender Equality Plan was adopted by Alzheimer Europe's Board on 4 December 2023 in Brussels, Belgium.

1.    Introduction

Alzheimer Europe is a non-profit, non-governmental umbrella organisation for 41 national Alzheimer’s associations from 37 European countries. Based in Luxembourg, the organisation was established in 1990 as the first pan-European organisation for dementia, bringing together 10 founding organisations from 9 countries. Since then, the remit, reach and priorities of Alzheimer Europe have expanded substantially, with milestones that include a.o. the adoption of the Paris Declaration in 2006, and the establishment of the European Working Group of People with Dementia in 2012.
The structure, governance and staffing of Alzheimer Europe has evolved with this expansion in scope. Currently, the organisation employs 15 people with diverse talents, skills and expertise, from several countries across Europe. Alzheimer Europe is governed by a similarly diverse Board of Directors who represent full member organisations of Alzheimer Europe, with ex officio membership for Chairs of the European Working Group of People with Dementia and European Dementia Carers Working Group. Alzheimer Europe staff and Board members work together to achieve the mission of the organisation: to change perceptions, policy and practice in order to improve the lives of people affected by dementia.
Gender equality is a fundamental value of the European Union, and one of the founding principles of Alzheimer Europe. Article 5 of the organisation’s statutes states that “Alzheimer Europe and its member organisations promote a policy of non-discrimination and welcome the participation of all, regardless of gender, racial or ethnic origin, religion or belief, disability, age, or sexual orientation.” Inspired by this statute, and a recent change in organisational structure, Alzheimer Europe has drawn up a Gender Equality Plan.
As the first Gender Equality Plan for the organisation, this document assesses gender balance at Alzheimer Europe, identifying specific institutional and cultural measures that will further promote gender equality. These measures are focused around the five thematic areas recommended by the European Commission:

• Work-life balance and organisational culture
• Gender balance in leadership and decision-making
• Gender equality in recruitment and career progression
• Integration of the gender dimension into research content
• Measures against gender-based violence, including sexual harassment

The Alzheimer Europe Gender Equality Plan is a living document. It will be re-assessed, updated and adapted every two years, to ensure it reflects the evolving implementation context within the organisation.

2.    Methodology

To prepare its Gender Equality Plan (GEP), Alzheimer Europe followed Horizon Europe guidance and employed the Gender Equality in Academia and Research (GEAR) tool developed by the European Commission and the European Institute of Gender Equality (EIGE).
The GEAR tool breaks down the GEP process into a series of steps covering development, implementation and evaluation:

• Step 1: understanding the organisational context and legal frameworks
• Step 2: baseline assessment of gender dimensions at Alzheimer Europe
• Step 3: identifying areas and measures for intervention
• Step 4: implementation of measures, involvement of stakeholders
• Step 5: monitoring and evaluation of the plan

The Alzheimer Europe GEP represents steps 1-3 in the GEP process outlined by the GEAR tool. It complies with the following requirements for GEPs:

1. Be a public document: The GEP should be a formal document signed by the top management, and disseminated within the institution. It should demonstrate a commitment to gender equality, set clear goals and detailed actions and measures to achieve them
2. Have dedicated resources: Resources for the design, implementation, and monitoring of GEPs may include funding for specific positions such as Equality Officers or Gender Equality Teams as well as earmarked working time for academic, management and administrative staff
3. Include arrangements for data collection and monitoring: GEPs must be evidence-based and founded on sex or gender-disaggregated baseline data collected across all staff categories. This data should inform the GEP’s objectives and targets, indicators, and ongoing evaluation of progress, and be reported on annually
4. Be supported by training and capacity-building: Actions should address gender equality and unconscious gender biases, and may include developing gender competence establishing working groups dedicated to specific topics, and raising awareness through workshops and communication activities.

The Alzheimer Europe GEP was co-developed by the Executive Director and Directors of Alzheimer Europe core teams, in consultation with staff members, and approved by the Board of Directors.

3.    Organisational context and gender dimensions at Alzheimer Europe

During an initial audit stage, Alzheimer Europe collected sex-disaggregated data and performed a review of practices to identify potential gender inequalities and their causes. Relevant national laws and regulations were also evaluated.

Alzheimer Europe (AE) is the umbrella organisation of national Alzheimer’s associations and represents the European voice of people with dementia and their carers. The membership of AE consists of national organisations of and for people with dementia, their families and their carers. As set out in AE’s statutes, member organisations need to be non-profit organisations registered as such in their own country, whose main objective is the support and care of people with dementia and their carers, which are willing to co-operate with other organisations within AE, are independent of governments, political parties and economic pressure groups and are transparent in disclosing their sources of funding.

Currently, AE has 41 full and provisional member organisations from 37 European countries, including Iceland, Israel, Jersey, Montenegro, Norway, Switzerland, Turkey and the United Kingdom. With the exception of Latvia, Alzheimer Europe has members in all EU member states.

Alzheimer Europe Board of Directors

Alzheimer Europe has a fully democratic structure and decision-making system with its Board of Directors and its General Meeting comprised of national representatives as its key governing bodies.The AE Board is elected for two years and currently has a membership of 14 members from 13 different European countries. The Board meets four times a year and is charged with the administration of the organisation between Annual Meetings. The Board monitors the implementation of the organisation's activities against the work plan and budget of the organisation. The Board also supervises the staff and appoints the Executive Director of the organisation.The Alzheimer Europe Board (2022-2024) has the following gender composition:

• One female Chairperson
• One male vice-Chairperson
• One male Honorary Secretary
• One male Honorary Treasurer
• Ten Board members, comprising six women and four men

Alzheimer Europe General Meeting

The General Meeting is comprised of one representative of each organisation represented in AE and the statutes of AE define the powers of the General Meeting as follows: to agree the general policy of the association, elect the Chairperson, Vice-Chairperson, Secretary and Treasurer and the other members of the Board of Directors, endorse budgets, adopt accounts and appoint auditors, conduct any business which has been duly notified, adopt and amend the rules and regulations of the association, fix the membership fees of full and provisional members, disqualify members, amend the statutes and dissolve the association voluntarily.
The General Meeting attendees are determined by each member organisation and vary from year to year.

Alzheimer Europe Working Groups

In 2012, Alzheimer Europe set up a European Working Group of People with Dementia (EWGPWD), composed of people with dementia nominated by their national Alzheimer’s associations. This group meets three to four times a year, advising Alzheimer Europe to ensure all its activities are dementia-friendly and dementia-inclusive. Alzheimer Europe is committed to promoting diversity in public involvement, and therefore encourages member associations to reach out to a broad range of people with dementia (e.g. irrespective of age, gender, ethnic group, level of education, sexual orientation and socio-economic status etc.). Alzheimer Europe aims for gender balance in the EWGPWD and aims to ensure that each sex is represented by at least 40% of the membership, also welcoming people with dementia with a non-binary or trans identity.

In 2022, AE set up the European Dementia Carers Working Group (EDCWG), which has representation from 14 member organisations. Both Working Groups are led by a Chairperson, supported by Vice-Chairpersons. The Chairpersons of the EWGPWD and EDCWG are ex-officio members of the AE Board to ensure greater involvement of people with dementia and their carers in the organisation's activities including its governance. To promote gender balance in the leadership of the EWGPWD and EDCWG, Alzheimer Europe requires that both genders are represented (as Chairpersons or Vice-Chairpersons).

The EWGPWD (2022 – 2024) has the following gender composition:

• One male Chairperson
• One female vice-Chairperson, one male vice-Chairperson
• Twelve members, comprising seven women and five men

The EDCWG (2022 – 2024) has the following gender composition:

• One female Chairperson
• One male vice-Chairperson
• Twelve members, comprising eight women and four men

Alzheimer Europe staff

Alzheimer Europe is led by a core executive team, composed of an Executive Director, supported by an Executive Assistant, and the Financial Officer. Other Alzheimer Europe staff belong to three teams, each led by a Director. The gender dimensions are described below.

Alzheimer Europe is staffed by three men and twelve women:

• The Executive Diretor of Alzheimer Europe is a man
• The Financial Officer of Alzheimer Europe is a woman
• The Executive Assistant is a woman
• Public Involvement and Ethics team
• Director for Public Involvement and Ethics (a woman)
  • Public Involvement Lead (a woman)
  • Public Involvement Officers (two women)
• Research and Policy team
  • Director for Research and Policy (a woman)
  • Policy Officer (a man)
  • Project Communications Officer (a man)
  • Project Officer (a woman)
• Communication and Meetings team
  • Director for Communication and Meetings (a woman)
  • Conference Coordinator (a woman)
  • Events Coordinator (a woman)
  • Communications Assistant (a woman)

Legal context

The Alzheimer Europe offices are based in Luxembourg, where the main sources of labour law are European regulations, Luxembourg employment laws (“Code du Travail”) and collective bargaining agreements established with different sectors. Some of the specific legal provisions relating to gender equality are listed below:

• Luxembourg Constitution
  • Art.11 (2) “Women and men have equal rights and duties. The State shall actively promote the elimination of any obstacles to equality between women and men.”
• Luxembourg Code du Travail
  • Right to equality of treatment
  • Right to equality in access to employment and promotion, in training, in working conditions, and in membership to a professional organisation (Art. L251-2)
  • No gender-based discrimination (Art. L241-1)
  • Right to pregnancy and maternity protection (Art. L241-4)
  • Right to equal pay (Art. L225-1, Art. L241-1)

In the next phase of development of the GEP, Alzheimer Europe will analyse its internal policies and procedures, assessing whether they promote gender equality and identifying any remedial measures that may be required.

4.    Areas and measures for intervention

The European Commission recommends five thematic areas to organise the content of GEPs. Supported by the Gender Equality in Academia and Research (GEAR) tool, Alzheimer Europe has identified the following areas and measures addressing gender equality.

Work-life balance and organisational culture

Gender balance in leadership and decision-making

Gender equality in recruitment and career progression

Integration of the gender dimension into research content

Measures against gender-based violence and harassment

5. Monitoring and Evaluation

To effectively implement the Alzheimer Europe GEP, a comprehensive monitoring and evaluation strategy will be developed. This strategy will include annual gender audits; identification of specific metrics for the measures outlined above; and progress reports to the Alzheimer Europe Board and staff members, with yearly reviews offering an opportunity for course correction if required.