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P21. Involving people with dementia II

Detailed Programme, abstracts and presentations

P21. Involving people with dementia II (Saturday, 6 October, 10.30-12.00, Europa 3)

P21.1. Involving people with dementia – Living in Darkness

Scottish Dementia Working Group (SDWG)

The Scottish Dementia Working Group (SDWG) has been celebrating their 10th Birthday as a campaigning group and although we have had great success throughout that time, this does not negate our personal struggles with our diagnosis.

At the time of diagnosis there is great import placed on being engaged in coming to terms with the emotional impact of the disease and rightly so.  Without having addressed the emotional issues that challenged us at that time it is unlikely that we would have been as successful a group as we currently are.

However we are in uncharted water as we face up to having to revisit this emotional processing.  Many of the group members have now had a diagnosis for over 5 years.  We are finding that not only are we busy campaigning, but we now have to come to terms with new and different losses in the transitional period as we travel along the disease trajectory. 

To enable us to continue with our work it is imperative that we are able to express and process these emotions in order to come to terms with the changes we are experiencing.  In order to do this, we have explored how best we should proceed and have already had an initial meeting to formulate a plan for how we should tackle this as a group.

Our plan is to have a series of three facilitated meetings which will be open to members who have had their diagnoses for at least 5 years.  Our facilitator is a trained counsellor and has a professional background in dementia care and has been a co-opted member and professional advisor to the Scottish Dementia Working Group since its inception. A representative of the SDWG will present a paper, outlining our findings from the process, for the conference. This presentation will be of value to people with dementia who are, or wish to be, involved campaigning activities.

P21.2. Older people with dementia making connections with younger people: the Lost in Time and Space project

Maria S Parsons, Sarah Plumb

Older people with dementia are at greater risk than their peers of social exclusion and loss of self-esteem and agency. Younger people experiencing problems at school may become withdrawn and lose confidence in a not dissimilar way. Both generational groups experience stigma and marginalization and yet often have little contact with one another. Hence this Lost in Space and Time (LITAS) project that brought together a group of younger people (aged 14-18) from an Oxford senior school, including students from a School Inclusion Unit, with a group of older people with dementia and their carers, to tackle shared issues of personal and collective identity through the medium of a task: making a film about their experiences of living, working and going to school in Oxfordshire communities.

The Learning and Partnership project manager at Modern Art Oxford (MAO), one of south England’s foremost modern art galleries, led the project that involved the Oxfordshire Alzheimer’s Society, an artist, writer, photographer, filmmaker and several volunteers. The LITAS intergenerational group took part in many joint activities and exercises through which they got to know each other including photography and film making sessions. The group was given guided tours of MAO exhibitions by Kerry Tribe, Shezad Dawood and Graham Sutherland and visited the Pitt Rivers Museum with its world famous collection of anthropological artifacts and objects. Both the younger people and the project staff learnt about dementia, memory loss and person centred perspectives.

The project was evaluated using a mixed method approach. For the younger participants key outcomes were to develop interviewing, team working, writing and film making skills and to submit work for a Silver Art Award. For older participants, outcomes included improved well-being, concentration, engagement and participation in the arts. The findings suggest all the outcomes were achieved and that participation in the project had positive effects for both groups who wanted their relationships and work together to continue in some way.

The LITAS intergenerational group will be mounting an exhibition of the process of producing the film at Modern Art Oxford in May 2012 and the film will be disseminated widely in the UK and Europe. A man with dementia and his carer and 2 of the younger people will present the project at the Creative Dementia Arts Network conference in London in June and we hope to show the film and discuss the project at Alzheimer’s Europe in October 2012.

P21.3. ‘The Fighters, a place where disoriented people can share at their own path’

Sabine Henry

We tend to forget that people under the age of 60 also suffer from Alzheimer’s Disease and have to face particular issues while coping with it.

Due to their disease, they eventually have to end their careers before reaching the retirement age, which makes their financial problems even worse.

Another issue is having to deal with the lack of access to adapted care centres.

Seeing their struggle in front of the few attention directed to those younger people, La Ligue Alzheimer has created a support group entirely dedicated to them: ‘The Fighters’.

By creating this group, La Ligue Alzheimer focused on three objectives:

  1. To give a voice to people with dementia
  2. To encourage the expression of feelings related to the disease
  3. To share feelings and fears

‘The Fighters’ stands for regular meetings accessible only to younger people suffering from Alzheimer’s Disease and related types of dementia.

By doing so, these meetings enable younger people with dementia to maintain skills such as: the ability to speak, the memory and the feeling of identity.

The interests and skills of each participant are used and developed, and in the meantime, relationships are built between the participants.

Some meetings can also become Working Groups.

In such cases, a main theme (e.g. the lack of adapted care centres, security aspects, the end of life choices) is discussed and ideas, projects and initiatives are being created by the participants.

These themes are also discussed with the ‘Fighters’ carers, in order to put the different perspectives and points of view in common and to take efficient decisions.

P21.4. Actions offered to help young people with dementia

Judith Mollard

France Alzheimer Association has been working actively on the specific problems of people under age 65 with dementia for several years.

If the sick young people are minority and thus often forgotten in speeches on the disease, they know particularly painful situations.

Specific problems exist connected to the difficulty of the diagnosis, to the access to the devices of coverage(care), to the incidence of the disease on the professional, family, social and financial life, to the absence of legal framework, etc.

However a lot of them want to do as much as possible to have themselves heard in order to change the negative way in which people perceive them and the stigmata linked to people with neuro degenative disesases.

After the study undertaken in 2011 on the young patients' attitude to the disease, France Alzheimer Association continues its action in 2012 through' different ways:

By editing a brochure entitled "Listen to us differently" that for the first time in France lets the patients express themselves and thus, allows us to perceive in a different way their experience of the disease and its everyday impact on their life.

By defining the actions undertaken by local associations in favor of young patients and family caregivers. For instance:

Vacation packages for 14 young couples organized every year in a different place and offering numerous sports and cultural activities.

This year, one of the young patients offered a ride by donkey.

A theatrical show played by volunteers, family caregivers and young people with dementia. This show is the result of a eighteen-month period training which allowed the patients to stage the texts that they had written about their experience of everyday situations. Each performer of the text was assisted by a prompter.

We'll define the specificities of these actions that enable the patients to keep involved, to continue having a place and projects in society by maintaining rich social relationships in spite of their handicaps.

P21.5. Three-times Stigmatization

István Kappéter

Stigmatization for having AD with a lot of other diseases

My newest stigmatization is caused by the fact that I have “mild cognitive impairment with forgetfulness plus”. I have a pacemaker, my gall bladder has been removed because of a benign tumor of the Vater papilla, I have arthritis in my knees, prostate enlargement, eczema and lumbago.

Stigmatization for wanting revolution in the medical sciences and practice

I believe in the rehabilitative concept of the Hungarian unified special teaching that harmonizes with the concept of dynamic psychiatry. We think that from the beginning of all treatments the most important aspect is the patients’ happiness, their future opportunity to integrate themselves in society. The majority of the leaders believe today, that in health service the first task is to find the problems and to heal them. They stigmatize us, for we disturb their respect.

Stigmatization for realization of the inevitable end of industrial age

I was always anticommunist and critical with capitalism. The communist Hungarians are willing to accept and help the multinational enterprises and the leaders of larger powers in exploiting people. They believe that the market economy with parliamentary democracy is the everlasting form of the societal systems. I, and the majority of Hungarians believe that only radically new concepts will allow us to find better societal systems. The majority of the leaders of humanity think that we are dangerous for them, therefore stigmatize us.

We can be, and have to be happy with the stigmatizations

We can be proud of living well after we were able “to stand up, to will, to do” with our dementia and other diseases. We can achieve the acceptance of the majority of people better than earlier, because we are able to realize more than earlier, that we have to be modest.

We can be proud, if we are among the pioneers of the science who were generally persecuted, sometimes crucified, but later recognized as extraordinary great and useful human beings. We can feel excellently well, when we find partner in love and in work with us, and when we find small groups where we discuss the new concepts and methods.

We can be proud if we are for the radical changes, because we know it is always the revolutionists who can help in the development of humanity. We can enjoy when we come together, or have interesting discussions on the Internet with other revolutionists.

I was always rather a happy man, but I am even happier today than earlier

I thank my wife, whose task of taking care of me and loving me is not easy at all. I thank my family doctor, my neurologist friends, the psychologist who treat me, and our Alzheimer Society where I have a lot of advice and saw examples to how to live my life. I thank my co-workers who help me a lot. I thank my patients who are fond of me. I thank my parents, step-parents, the other members of my family, and my masters in special teaching, in psychology, in neurology and in psychiatry, for they helped me to elaborate a concept of living life that helped me a lot. I thank the communists who stigmatized me as an alien to the working class, and forced me to work more, and to change my jobs more frequently, than other people do.



Last Updated: Thursday 15 November 2012