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23.12.2014

Empowering people with dementia

Dianne Gove, PhD and Helga Rohra

Dianne Gove is Director for Projects at Alzheimer Europe (a European umbrella organisation of national Alzheimer associations in Europe).  She recently obtained a PhD for her research into GPs’ perceptions of dementia and how they relate to stigma. Helga Rohra has dementia and is an active advocate for the rights of people with dementia as well as the first chairperson of the European Working Group of People with Dementia.

Stigma is a complex social phenomenon which is the result of a process in which a range of components converge, namely labelling, stereotyping, cognitive separation, loss of status and discrimination, within the context of the exercise of power.12 It is also an attribute shared by a group of people which is considered as socially salient. The impact of perceived threat or peril has been described as a key factor contributing towards a particular attribute being considered a stigma.3,4 However, it is the meanings which come to be associated with a particular attribute which result in it being considered a stigma and not the attribute per se.5

Since its establishment in 2012, the European Working Group of People with Dementia6 (EWGPWD) has been challenging the way that dementia is perceived and the stigma of dementia in Europe. There are currently 12 men and women in the group with different types and stages of dementia, aged 56 to 74 and each from a different country. It is not a support group but a working group whose aim is to ensure that the activities, projects and conferences of Alzheimer Europe duly reflect the priorities and views of people with dementia. The chair of the group also sits on the board of Alzheimer Europe.

 The EWGPWD challenges the social saliency of terms such as dementia and those related to specific forms of dementia rather than the actual use of such terms. Through their openness and self-labelling, not only as people with dementia but as experts in the experience of dementia, they publicly reject any loss of social status or assumption that dementia reduces them “from a whole and usual person to a tainted, discounted one”.7

Their activities, positive approach and more nuanced portrayal of dementia challenge many of the stereotypes that people have of dementia. Members of the EWGPWD describe the emotional, physical and social impact of dementia on their lives and acknowledge their fears but also their desire to get on with life. They shift the focus from deficits to remaining capacities and from a perceived lack of quality of life to the desire to play an active role in society for as long as possible, albeit it with the necessary support.

Contact with people with mental disorders has been associated with a decreased desire for social distance.8 In addition to speeches, participation in European projects, articles and television and radio interviews, the members of the EWGPWD are keen to promote direct contact with other members of society. They achieve this at European dementia conferences through a stand, networking and interactive workshops.

Above is excerpts from my friend Helga Rohra’s blog at