he comparative report was authored by Project Officer Ana Diaz, with the input of AE’s national members and various national experts as well as members of the European Working Group of People with Dementia (EWGPWD) and their supporters.

The discussion paper was authored by a working group of 11 experts from across Europe, chaired by Dianne Gove, AE Director for Projects. The EWGPWD was involved throughout and two members of this group, Helen Rochford-Brennan and Helga Rohra, were also members of the AE expert ethics group responsible for the report.
 

About the comparative report

The 2017 AE Yearbook focuses on the topic of residential care facilities in Europe. It provides an overview of the existing care standards and regulatory requirements these facilities need to meet and addresses key areas that impact on the people in residential care: Physical environment; Staff providing care; Health and social care; End-of-life care; and Abuse and use of restraint.

The information for this comparative report was primarily provided by AE’s national members. For some countries, however, other national experts were also contacted (e.g. Belgium, Austria, Cyprus, Bulgaria, Cyprus, Latvia and Lithuania). Members of the EWGPWD and their supporters were also invited to share their experiences with and views on each of the topics addressed. AE is extremely grateful to everyone who contributed to this publication.

In summary, it provides an overview of existing requirements and standards for residential care facilities. It highlights some important oversights on how dementia is currently addressed or neglected in frameworks and standards in Europe. However, it also highlights examples of good practices in these areas across Europe. Some of the key issues that still need to be considered at policy level are the formulation of clear and legally binding standards with specific considerations of the needs of residents with dementia, appropriate training for staff, awareness raising and the provision of high-quality accessible information to residents, families and staff about their rights and what they should be able to expect from care. We hope this comparative report will be useful in advancing the understanding of this topic and improving the standards of care and the quality of life of people with dementia in residential care.

For further information about the comparative report please contact Dr Ana Diaz, Project Officer: ana.diaz@alzheimer-europe.org

About the discussion paper

In 2017, AE set out to explore the possible implications for ethics, policy and practice of accepting dementia as a disability. Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD, 2006) states, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” This clearly applies to the situation and experience of many people with dementia. With this in mind, AE has published a new discussion paper, which explores the possible implications for ethics, policy and practice of recognising dementia as a disability.

It was extremely important for AE to ensure that the experience and perspectives of people with dementia were included, in addition to the essential and valuable input from experts in the fields of disability, dementia, law, anthropology, psychology and policy. The entire EWGPWD was therefore involved right from the start, first by asking them about their perceptions of disability and dementia and then via a one-day face-to-face consultation and subsequent involvement in the development of an accessible version of the full report. Two members of the EWGPWD, Helen Rochford-Brennan and Helga Rohra, were also members of the AE expert ethics group chaired by Director for Projects Dianne Gove. The other members were June Andrews, Andrea Capstick, Carmel Geoghegan, Jean Georges, Sébastien Libert, Grainne McGettrick, Simo Vehmas and Toby Williamson. We are immensely grateful to both the EWGPWD and the expert ethics group for all their work on this discussion paper.

For further information about the discussion paper please contact Dr Dianne Gove, Director for Projects: dianne.gove@alzheimer-europe.org

You can purchase both publications via the AE website: http://alzheimer-europe.org/Publications/E-Shop