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[BLOG] Alzheimer Europe: two new publications, involving people with dementia

Alzheimer Europe is delighted to present its two new publications: "A comparative report on “Standards for residential care facilities in Europe” and a discussion paper called “Dementia as a disability? Implications for ethics, policy and practice”.

As always, involving people living with dementia in its work helps Alzheimer Europe (AE) ensure it continues to reflect their needs and views. “Nothing about us without us!”

The comparative report, coordinated by Project Officer Ana Diaz, in collaboration with AE’s national members and various national experts and with input from members of the European Working Group of People with Dementia (EWGPWD) and their supporters, provides an overview of the existing care standards and regulatory requirements residential care facilities in Europe need to meet and addresses key areas that impact on people in residential care: Physical environment; Staff providing care; Health and social care; End-of-life care; and Abuse and use of restraint.

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.

AE hopes this comparative report will be useful in improving the standards of care and the quality of life of people with dementia in residential care.

For further information please contact Dr Ana Diaz: ana.diaz@alzheimer-europe.org

About the discussion paper: 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. The paper, which was authored by a working group of 11 experts in the fields of disability, dementia, law, anthropology, psychology and policy from across Europe and chaired by AE Director for Projects Dianne Gove, takes this as its starting point to explore the possible implications for ethics, policy and practice of accepting dementia as a disability.

It was extremely important for AE to ensure that the experience and perspectives of people with dementia were reflected in this paper. 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 expert ethics group

For further information please contact Dr Dianne Gove: dianne.gove@alzheimer-europe.org

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