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Parallel Session P7 - Supporting and involving people with dementia (1)

Detailed Programme and abstracts

Friday, 1 October – 14.00-15.30 (Yellow Room)

P7.1. Involving people with dementia in the development of information materials

Josine van der Poel, Alzheimer Nederland, section Help & Information, Postbus 183, 3980 CD Bunnik, The Netherlands, j.poel@alzheimer-nederland.nl

In the past years Alzheimer Nederland has experienced with the input of people with dementia in the development of information materials and in discussing their need for support.

Last year we published our brochure ‘Dementie … Wat nu?’ (Dementia … And now?) for people with dementia and their carers. The rough draft of the text was commented on by a man with Alzheimer’s disease.

Our brochure about frontotemporal dementia was revised two years ago. Here a man with FTD read an early draft. He used to be an artist and made some cartoons for the brochure too.

Starting with the so-called Kopgroepen, where people with dementia talk about several themes, we now are developing an advocacy group which has four members today. One of them, accompanied by his wife, took part in a discussion about the need for information and support by people with dementia concerning their legal protection.

P7.2. The physical effects of dementia

Martin Sewell, David Batchelor, James McKillop, Scottish Dementia Working Group, msewell@alzscot.org

The Scottish Dementia Working Group is a campaigning and awareness-raising group whose members all have a diagnosis of dementia. Through our presentation we aim to highlight some of the physical effects of dementia that are often little understood or completely overlooked, but that can have a significant impact on people’s lives. In particular, we will look at the effects of fatigue and of visual difficulties. The latter is an emerging issue and knowledge is growing - it would now appear that visual difficulties and sight loss affect a far greater number of people with dementia than was previously estimated. Visual difficulties can heighten the impact of dementia, causing depression, fear and frustration, increasing confusion and isolation.

We will first show a 10 minute exert from our new training DVD followed by a brief presentation, leaving time for discussion and questions at the end.

P7.3. The video blog alzheimercafe.be – Giving a voice and a face to people with dementia

Aude Dion, Communication Officer at La Ligue Alzheimer ASBL (rue Montagne Sainte-Walburge, 4B, B-4000 Liège) – Belgium – aude.dion@alzheimer.be

Background: Nowadays people with dementia usually do not have their say in talks and debates on their condition. It still seems difficult to listen to them and to believe them because they tend to swing between sense and irrationality. The video blog alzheimercafe.be claims to be a place where they can express themselves without being stigmatised or even labelled as ‘people with dementia’. It constitutes a media entirely dedicated to them.

The blog: The project; The blog’s editorial strategy mainly rests upon visual elements (videos, pictures, …). An image (whether it moves – video – or not – picture) can sometimes tell us more than a long speech. The video clips are thus the core elements of alzheimercafe.be. Ethical issues constitute an essential part of the project: only people who gave their approval are filmed and we make a point of honour to protect their dignity. The blog is also composed of written posts (news about dementia; agenda of our association’s activities; practical information; …). Users can leave their comments on each post.

The Alzheimer Cafés: Most video clips are filmed during our Alzheimer Cafés. These cafés offer a convivial meeting point for people with dementia, their families, carers and anyone who has an interest in Alzheimer’s disease by offering the opportunity to chat in informal surroundings about the disease and about living with the disease. Currently there are more than 20 cafés held each month throughout the French-speaking community of Belgium. Examples of the video clips will be broadcasted during the conference.

The objectives: The blog’s objectives are:

  • To give a voice and a face to people with dementia.
  • To conduct a sensitisation and dissemination work towards the greater public. We seek to give another public image of the disease. This objective is achieved through an innovative way and from another point of view.
  • To be a place where people with dementia and their carers can express themselves.
  • To give updated information about dementia.
  • To break taboos and isolation.

P7.4. The agency of everyday life of people with dementia living alone

Elisa Virkola, Age Institute, Asemapäällikönkatu 7, 00520 Helsinki, Finland, elisa.virkola@ikainst.fi

Due to demographic ageing the number of people with dementia living alone is growing, but their activities in everyday life are a little researched area. In my dissertation in social gerontology I study the agency of people with dementia in everyday life. The subjects are 70-95 years old women who live alone in the centre of Helsinki. By investigating individual cases I concentrate on how their agency is constructed in various action situations in everyday life, at home and outside the home. I focus on activities that subjects themselves value including various routines. By agency I refer to theories that focus on interaction between older people’s action and structures. Agency is built up situationally and locally during activities where people make choices framed by societal and environmental structures.

The data collection has started at the Age Institute in a project called Seniors in the City. I use ethnographic methods, interviewing people with dementia about their experiences of their everyday activities and living environment. In addition, I observe various action situations with a collaborative approach: I will act together with the subjects. The data will be gathered during a period of at least two years. This will make it possible to observe whether there are any changes in the person’s everyday life over time.

The study of agency in everyday life requires an approach with multiple perspectives and various methods. In this presentation I focus on the methodological and ethical challenges concerning the research conducted in the everyday life of older people with dementia who live alone. The home environment sets its own limitations to research. The research process requires an ongoing negotiation between the researcher and the subject.

 

 
 

Last Updated: Wednesday 03 November 2010

 

 
 

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