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P9. Dementia and the arts

Detailed programme, abstracts and presentations

P9.1. A visual exploration of the dementia experience: Uncovering multiple meanings of well-being

Ataie Jutta E.

Although it is widely acknowledged that a person’s sense of well-being is impacted by the onset of dementia, there is scant knowledge about what ‘feeling well’ means for people with the illness. However, having an understanding of what well-being means for people with dementia is important as it is a necessary precursor for developing interventions and support services that foster a sense of well-being in this population.

In the present study, visual and verbal narratives of thirteen women and seven men with early-stage dementia (age 57-90, mean 73.4; MMSE scores 20-28, mean 25.6) were used to explore what ‘feeling well’ means. Grounded theory analysis revealed that ‘feeling well’ was not a static experience; it was an ongoing, continually shifting process that unfolded in a series of interrelated phases. The participants initially experienced a collapse of their familiar sense of well-being, then endured a period of ill-being, which gradually subsided as they found ways to feel well again. Finding ways to feel well again meant to discover the strength and resources necessary to redefine, rebuild, and maintain an alternative sense of well-being.

In this cyclical and continuous process the participants’ attention to the illness fluctuated as they were impelled to relegate the illness to the background of their lives while managing its symptoms in the foreground. Feeling well, as a whole, meant for the participants to find richness in the details of their daily doings and cherish the interconnection between their lives and the lives of others.  As time progressed and the participants grew accustomed to this new, alternative sense of well-being, it became their familiar sense of well-being. However, the delicate balance of ‘ill-being’ and ‘well-being’ was easily disturbed. The process of defining and constructing an alternative sense of well-being repeated itself when increasing symptoms propelled the illness back into the foreground of the participants’ lives.

The findings of this study give credence to emerging efforts to create holistic, person-in-environment approaches to clinical practice that incorporate available support systems and aspects of a person’s lifestyle, emotional needs, and spiritual preferences. Possible avenues for healthcare professionals to enhance the ability of people with early-stage dementia to experience a sense of well-being while living with the illness will be discussed. Further research is required to investigate if, and if so how, the meaning of well-being changes as the illness progresses.

P9.2. Aesthetic emotions in people with dementia: Making museum art accessible to people with dementia

Ragni Silvia, Attaianese Fulvia, Boccardo Mauro, Levi Stephanie, Bartorelli Luisa

Introduction: Exposure to art can open up new channels of communication for people with dementia.   Contact with art creates a path through cognitive and behavioural problems that result from the disease, going to the very root of being, where there is still the capacity to be moved by beauty in all its forms. Based on this philosophy, the Alzheimer Day Center of the Fondazione Roma organises guided visits for its participants to museums and exhibitions.

Purpose: Based on this premise, the project aims to evaluate the benefits of an intervention in which people with dementia observe and talk about works of art in a museum setting, led by trained guides.  Specific objectives are: the recovery of autobiographical memory and expressive ability, leading to improved self-esteem; the improvement of mood through rewarding experiences; socialisation as a means to promoting a friendly community in which the caregiver also participates. 

Material and Method: A group of 12 people, in a mild to moderate stage of dementia, accompanied by a multi-professional team and volunteers, goes to an art museum to see works of art which have been previously selected. This past year, the group went to two museums: two visits to the Museum of the Fondazione Roma and five visits to the National Gallery of Modern Art. The visits last two hours and are led by a museum-trained expert who engages the participants in a conversation about the works of art. The protocol then includes: a follow-up two hour meeting at the Alzheimer Day Center a week after the museum visit to look at the slides of the work and then again after a further two weeks. During each meeting, an observation grid is filled in for each participant, with notes about verbalisation and other behavioural aspects. 

Results and Conclusions: An evaluation of the results shows that contact with beauty and exposure to art is inspiring and leads to reactivation for people with dementia. The work with art touches their emotional circuits, which are not destroyed by the disease. It also stimulates cognitive aspects by bringing out autobiographical memories and reinforces their relationship with the outside world. In addition the participants spontaneously give their critical opinions about the works of art, both positive and negative, normally unthinkable in people with dementia. It is evident that this creates good feeling between the participants, the health workers and family members. Our observations are increasingly supported by studies in neuroscience.

P9.3. How photography, blogging and the arts helped a person with dementia accept his diagnosis

Pascoe Ann

To show how photography, blogging and the arts, helped a person with dementia living in the rural Highlands of Scotland - after 6 years of denial - to finally accept his diagnosis.

To explain how his photography transformed his dementia world into one that has not only helped him accept his dementia diagnosis, but also given him a sense of well-being celebrating the things he can do rather than what he cannot do. 

How he used his photography and art as a basis to:

  • blog and tell the true ‘inside story’, giving much enjoyment to others,
  • help children with learning disabilities overcome their sense of inadequacy,
  • paint and move from a ‘dark’ to a ‘light’ place,
  • create different forms of art as his imagination and creativity were stimulated,
  • raise monies for charity.

Samples of his photography and art will be examined to demonstrate how by opening these new ways of looking at things, his photography and art provided a potent connection between his inner and outer worlds, resulting in a voyage of self-discovery and personal growth. And that by coming to terms with this, he not only reached a profound appreciation of his own worth, but was also free to let go of negative feelings and accept his diagnosis. 

P9.4. Alzheimer’s disease and artistic mediation workshops

Mollard Judith

France Alzheimer has always worked on non-drug therapies and supports all kinds of activities for people with dementia. France Alzheimer wants to improve people’s quality of life and that’s why 97 associations in France are working every day helping and caring for people. Through this network, France Alzheimer has focused on the development of artistic mediation workshops suitable for people with dementia.

Alzheimer's disease affects cognitive skills and abilities such as reasoning, logic, abstract thinking, etc… But, it does not affect the ability to feel and to express feelings. Most of the time, all five senses of people with dementia continue to work, making artistic mediation such as music, painting, theater, dance and photography very stimulating. Through this activity the caregiver meets people with dementia in another way, art fostering self-expression, emotional connection, sharing and understanding. For the moment, there is no study measuring the scientific value and the therapeutic impact of this activity.

However, in caregivers’ experience, these activities are a successful means to help people with dementia to maintain their identity and self-esteem. These artistic activities focus on the person, not on the disease:  art is an alibi to create a relationship between the people with dementia and others. There is no point in to interpreting the results, or learning savoir-faire. We aim at sharing pleasure though creative activities. Desire and self-esteem are stimulated also.

2013 France Alzheimer objectives

Evaluating the artistic mediation workshops developed by the 97 associations throughout France. The objective is to identify the benefits, the quality of the caregiving and assess participating artists.

Collaborating with the artists on a teamwork book including texts, photos, stories, and specialists’ interviews. The objective is to promote artistic mediation workshops, for all people with dementia  from the outset of the disease.

P9.5. (Don’t) Mention Dementia – groundbreaking engagement work in the UK

Eland Derek, Innes Anthea, Cutler Clare, Hambidge Sarah

Public perceptions of dementia are often based on negative impressions and stigmatising views about what dementia is and what living with dementia might be like.  This innovative arts project uses a unique public engagement process to collect honest and raw accounts of these impressions and views.  The aims of the project are to contribute to a fundamental change in public perceptions about dementia as well as give an alternative way to give voice to those with dementia.

This public engagement project collected both the views of the general public and those living with dementia using a ‘diary room’ technique.  People with dementia and members of the general public were asked to provide a handwritten story of their experiences/views on a postcard.  In a digital age and in the content of dementia there is nothing more powerful than the handwritten account.  Over a period of 12 weeks Bournemouth University Dementia Institute staff and volunteer students worked with people with dementia and the general public to collect these stories.  Stakeholder support was key to the success of this project, either at the national level through the Alzheimer’s Society and Age UK as well as stakeholders at a local level.  This enabled the project to have access to a wide range of groups of people with dementia.

Hundreds of handwritten stories from people with dementia and members of the public were collected during the engagement phase.  As well as collecting written stories about peoples’ views about dementia we took digital images of the people who wrote their stories to demonstrate that visually it is not always possible to actually know who has dementia.

The stories and images were exhibited for the first time in the UK June 2013 and the reaction and comments of members of the public who viewed the work were also collected.  Hundreds of people wrote about their response to the exhibition, also on a postcard.

The work and resulting exhibition has attracted huge attention because of the power of the work and the uniqueness of the approach.  It is exhibited here for this conference to view.  Please also take a postcard and write your response to the exhibition.  The approach, which is a collaboration between Bournemouth University and artist Derek Eland, provides the basis for a wider roll out to other parts of the UK and beyond.  This approach offers a way to challenge and change perceptions of dementia.

P9.6. «Awakened Art Stories» – rediscovering art with dementia

Oppikofer Sandra, Wilkening Karin, Angst Silvia

Background: «Awakened Art Stories» is an intervention project of the University of Zurich in cooperation with the Alzheimer Association of the Canton of Zurich et al. It animates persons with dementia to invent creative stories based on open-ended questions about bizarre photographies and various paintings at the Kunsthaus museum in Zurich by using the TimeSlips storytelling-method of Anne Bastings. The group-setting as well as the possibility to encourage a creative process without knowledge of the individual biography are particular to this method.

Objectives: Thanks to the regular museum visits and creative storytelling process, an intellectual stimulation and social interaction takes place in an accepting environment. This offers persons with dementia as well as their caregivers the possibility to share positive experiences. Remaining skills and competencies of the diseased person are furthered, creative potential and the joy of doing something oneself are supported. The invented stories as well as the pictures are taken home as a topic for further communication between the caregivers and the person with dementia.

Procedure: In spring and autumn 2013,16 creative storytelling sessions will be held at the Kunsthaus Zurich. Participants are people with dementia either living at home with their family members or living in care facilities with a medium to advanced cognitive impairment. Each session concludes with a sponsored leisurely aperitif and a social get-together for all participants.

Evaluation Methods: The satisfaction with the program will be tested with a semi-structured questionnaire in May/June 2013. All participants will be included in the survey. The effectiveness of the program will be tested in a longitudinal study involving all caregiver-patient dyads as well as the volunteer workers in 2013/2014.

Evaluation Results: Results of the satisfaction-survey will be on hand in October and presented at the congress. Preliminary results of the effectiveness of the whole program will be presented at the congress.

 

 
 

Last Updated: Monday 04 November 2013

 

 
  • Acknowledgements

    The 23rd Alzheimer Europe Conference in St. Julian's, Malta received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the additional support provided by foundations and companies.
  • European Union
 
 

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