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P15. Involving people with dementia I

Detailed Programme, abstracts and presentations

P15. Involving people with dementia I (Saturday, 6 October, 8.30-10.00, Europa 3)

P15.1. Bay Tree Voices: Inclusive practice in the involvement of people with dementia in practitioner education

Andrea Capstick

Dementia has been a latecomer to the field of service user involvement. Although there are now beginning to be welcome signs of improvement in the inclusion of the service-user voice, at present those with milder cognitive impairment, those who are still living at home, and those who come from white, professional backgrounds are over-represented.  The BSc/MSc Dementia Studies programmes at the University of Bradford recruit part-time students who are already employed in the field of dementia care.  The majority of students work in long-term or intermediate care, with smaller sub-groups working in the community, in acute care and on general hospital wards.  The client groups with dementia they encounter in these settings are diverse, and tend to have different needs and perspectives from those articulated by mainstream service user groups.  For this reason we have been seeking to develop an inclusive approach to service user involvement in the degree programmes we run, in order to ensure that the whole range of experiences of dementia is covered.  Over the last five years this has involved developing an outreach programme in order to involve people with dementia in the environments where they spend their time, rather than restricting service user involvement to on-site activities at the University.  This presentation showcases one such project which involved members of the course team working with clients attending a resource centre for older people with dementia to develop a series of short film clips (Bay Tree Voices) which were then embedded into the course learning materials in order to model alternative approaches to communication.  The presentation includes formal and informal evaluations of these film-based teaching resources from service users, students and care staff.

P15.2. Maintaining everyday practical and cognitive competencies in dementia sufferers in a home setting

Renate Stemmer, Eva Quack, Veronika Enders, Martin Schmid, Birgitt Eichenseer, Elmar Gräßel

Introduction: Approximately 60 per cent of all dementia patients in Germany live at home and are tended predominantly by family caregivers. The project focuses on the effect of everyday practical and cognitive activation at home on the activities of daily living and cognitive abilities of dementia sufferers.

Methods and Materials: Six days a week, practical activation (each lasting 60 minutes) is performed by relatives based on an individual, tailor-made activation plan. Cognitive activation takes place once a week (each session lasting 30 minutes) and is done by an externally trained person. At the same time, the relatives receive continuous training and are comprehensively counselled by externally trained nurses or project staff. The aim is to establish a network of competencies between professional carers and relatives.

The effect will be evaluated in a multicentric, randomised controlled trial with total sample size of 72 participants suffer from irreversible dementia (MMSE ≤24 and ≥12, SIDAM incl. HIS ≤4). 36 participants receiving everyday practical and cognitive activation and 36 are in control group. Few participants already receive benefits available to outpatients. They should be classed under care-level 3 due to the fact that non-medicine therapy is more likely to succeed in persons with mild to moderate dementia. The period of activation is six months. After the intervention period follows a six months observation period without any activation or counselling. The follow-up data collection after twelve months (t2) measures also the sustainability and the medium-term effect of the activation. The outcome measurement will be in the realms of cognition and function ability for the patients with dementia and in quality of life for the relatives. Primary outcome variables: ADL-abilities (E-ADL-test) and cognitive abilities (ADAS-cog); secondary outcome variables: care dependency (PAS-scale) and geriatric symptoms incl. instrumental abilities (NOSGER-Scale incl. IADL-test), quality of life (WHOQOL-BREF) and strain for the informal caregivers (HPS). The evaluation will be made as a pre-postal analysis (t /t1/t2) with multivariate statistical procedures.

Results: It is expected that everyday practical and cognitive abilities in the intervention group will remain the same on average, whereas they will continue to deteriorate in a control group that is not being specifically activated. In addition, it is assumed that those patients receiving activation will require less care. As a consequence dementia sufferers in a home setting retain their abilities to cope with everyday life and their quality of life improves. Final results will be presented.

Financing: Federal Ministry of Education and Research, Germany

Timeframe: 2009 - 2012

P15.3. Bistrot Mémoire: a living experience

Donnio Isabelle

Remarking the narrow-minded approach of Dementia, exclusively focused on medical or social care, we were wishing to define a new type of relation between the caregivers and the elderly persons with dementia. We imagined a community place, where anyone can freely come in and out, have some room to talk about theirs sufferings or simply to listen to each other. Our society is globally frightened with the elderly people, especially with the ones who have Alzheimer disease. Most people do not know how to speak to, and how to deal with such persons.

The Bistrot Mémoire has been conceived by a group of institutions and volunteers who share their observations and means. It welcomes people with Dementia and their caregivers. We think it is our collective duty to create conditions of “inclusion” in spite of the large exclusion movement produced by our public health policies, in order to involve citizens’ responsibilities in the future place of these people.

It is all about creating the good conditions to shelter the relations between people with memory troubles, Alzheimer disease or assimilated forms and their family caregivers. We meet in a « café », « pub » (Bistrot), one afternoon per week. There, we have casual chats, share some good moments, eventually receive some information from professionals. A psychologist welcomes people and coordinates actions with some regular volunteers. It is a public place, not stigmatized, inside of the city.

The Bistrot Mémoire is a place for people to share feelings, experiences and develop social ties. In a word: to socialize. It is not an information centre, even if we regularly give information. The missions are to recognize the people suffering from Dementia, to encourage tolerance, to think over our point of view regarding the illness, to support caregivers, to prevent crisis that might occur in the families bonds, to change professional practices. People with dementia are too often considered as unable to express themselves therefore people don’t listen to them.Our meetings enable the citizens to reconsider their point of view. It is not about providing treatments.

The first Bistrot Mémoire was set up in January 2004 in Rennes and the experience has been developed in 16 other cities in Brittany, and 51 all over France. The initial project has entailed the drafting of basic principles, including ethical principles. Respecting one’s freedom of thought is the key word, whether he/she is a professional or a layman. Each new Bistrot Mémoire is supposed to create its own initiative in using these principles, in respect to the local projects and particularities. It’s important for us to be reactive and to keep up the dynamic to contribute to the well being of both persons suffering from Alzheimer disease and caregivers.

Since 2006 we have spent time to share our experiences together with all the new Bistrot Mémoire. This way we evaluate our proposal and the different results observed in any place.  Through the process of sharing our concerns, we have been growing all together. The concept of “Bistrot Mémoire” has been first recognized by Foundations and Public Health Insurance, then by public administrations (city, department, region, state), and most recently by the French Alzheimer Plan 2008-2012, in guidelines for promoters who have chosen to settle such initiatives.

P15.4. “Doing whatever it takes”: exploring practical approaches to involving people with dementia in decision-making

Eleanor Edmond, Mary Bardin, Mary Connolly , Avril Dooley

In May- June 2012 the Government is expected to publish a Bill to reform Mental Capacity law in Ireland and hopefully bring Ireland into line with Article 12 of the UN Convention on the Rights of People with Disabilities.

The introduction of a presumption of capacity and the obligation to take steps to ensure that people with dementia are supported to exercise capacity to the greatest degree possible creates both an impetus and an opportunity to explore the way our services approach the empowerment of people with dementia.

Throughout May 2012 a small scale project is in place in one of our day care centres to attempt through a variety of methods to get the views of clients on what is important to them in relation to decision-making: how do they feel about making decisions, what helps them make decisions and what hinders them. The consultation will be conducted through a variety of methods guided by the needs of the people with dementia. The ethos is that staff will be creative and “do whatever it takes” to engage with people. For example as well as a questionnaire being prepared, all staff have been briefed and asked to keep the theme of “decision-making” in mind during the period of the study and to explore what may be learned from being attentive during their ordinary interactions with clients. The success of the engagement strategies will be reviewed regularly over the course of the project and learning will be fed back in to allow new approaches to be tried.

The aim of the study are

  • to explore a variety of ways of consulting with people with dementia and document the results
  • to collect information on what is important to people with dementia in relation to the exercise of capacity in decision-making and to use this information a) to feed into the campaign as the legislation progresses through parliamentary stages and b) to develop a basis for good practice in terms of facilitating decision-making by people with dementia.

It is hoped the project will lay a foundation for good practice in promoting decision-making and will be an example of a practical collaboration between the policy and service wings of the Society to create better outcomes for people with dementia.

P15.5. Lay Involvement in Research – a personal perspective

Angela Clayton-Turner

Alzheimer’s Society pioneered lay involvement in dementia research starting with a small group in 1999 to a current network of over 200 volunteers, all either people living with dementia, carers or former carers. The network began by grading research proposals in order to significantly influence the Society’s funding decisions and to ensure that the research was relevant to people with dementia and their carers.

At the same time, members sat on Grant Panels and began to monitor funded projects. These initial activities have provided a springboard for a much wider involvement of network volunteers in dementia research as other organizations have requested their help. Activities such as membership of Trial Steering and Data Monitoring Committees, conference presentations, media interviews and being co applicants on bids have all been taken on board. Last year members became involved as public representatives in the Ministerial Advisory Group on Dementia Research and all of the sub groups, thus influencing their outcomes. Another new initiative was the matching of 30 researchers with 40 network  volunteers for a day spent discussing their ideas in small regularly changing groups. A member also took part in the Alzheimer Europe working group on the Ethics of Dementia Research.

These activities will be described in more detail from a personal perspective.



Last Updated: Thursday 15 November 2012