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P19. Involving people with dementia

Detailed programme, abstracts and presentations

P19.1. Learning Together – The Alzheimer Society of Ireland experience of establishing the first Irish Working Group of People with Dementia

Easton Avril, Crean Margaret

This presentation will outline the Alzheimer Society of Ireland experience of establishing the first Irish Working Group of People with Dementia.  The purpose of the Working Group is to explore ways to promote and encourage the direct involvement of people with dementia in our work and to ensure that the voice of people with dementia influences the public policy that impacts on their lives.The establishment of the Working Group comes at a crucial time as Ireland prepares to develop a National Dementia Strategy. It will be critical that the voice of people with dementia is heard through the National Dementia Strategy and in the planning of service provision for the future.

The establishment of the Working Group is the result of many years of work to enable the voice of the person living with dementia and their carer throughout our organisation.  The work has included a major public awareness and anti-stigma campaign which promoted the early signs and symptoms of dementia in order to encourage people to seek an early diagnosis. This presentation will outline the learning that we have had from setting up the Working Group to putting the plans in place and the outcomes from the meetings that have been held thus far.  This presentation will be of interest to those who wish to establish a more empowered voice for people with dementia in their organisation and also those that want to hear more about how other countries promote the direct involvement of people with dementia.

P19.2. Innovation in Programming: Why is art so important for those with dementia?

Burns Michelle

The World Health Organisation projects the number of individuals diagnosed with dementia to triple by the year 2050.  Without a medical cure on the horizon, we face growing pressure to address quality of life issues for those diagnosed. Recent studies indicate that engaging in an enriching environment can offer the beneficial impact of impeding the progression of Alzheimer’s disease.

I have developed and implemented a program using an innovative art process that provides opportunities for those with dementia to reach beyond their comfort zone and experience novel activities. Modified steps allow the artists to keep their minds engaged and explore creativity without focusing on perceived inabilities. This approach gently challenges the artist in a way that is unique and enlightening.Sophisticated and aesthetically pleasing outcomes are the keystone of this program. This ensures that participants are respected as mature adults. The final product then becomes an important vehicle to draw others into the art. These pieces enable families and others in the community to celebrate the person that is and their journey, instead of focusing on what is lost.

In this presentation, I will share examples to define “sophisticated art” and discuss how this process compares to art therapy. Participants will learn how using simple tools to integrate this innovative art process offers an experience that promotes activity and mindful engagement. I will share valuable experience I have gained on how to best achieve this process, specifically:

  • the importance of facilitator training,
  • the significance of variation of mediums, and
  • the need to create an “art studio” atmosphere to foster independence, engagement, peer involvement and self esteem.

This innovative program strives to create a stimulating and enriching environment in the magical realm of art while improving the quality of life for those with Alzheimer’s disease.

P19.3. Don’t try and take over! Everyday decision making for people with dementia and their family carers.

Tarzia Laura, Fetherstonhaugh Deirdre, Nay Rhonda

Being able to make choices and decisions is considered an integral component of autonomy and personhood in Western societies. For people living with a diagnosis of dementia, however, it can be difficult to remain involved in decision making. Not only do they have to contend with the effects of the disease on their cognitive abilities, but their participation in decision making can be curtailed or ignored by health professionals, family members, or paid carers. While these ‘others’ may be well meaning they often presume that they know what is in the person with dementia’s ‘best interests’ without asking them directly, or assume that the person with dementia is incapable of making rational choices. Contrary to this, research has consistently demonstrated that even when a person with dementia may not be able to make high-stakes financial or medical decisions, they can, and do continue to make choices about many aspects of their everyday lives if provided with the right encouragement and support.

At present, a gap exists in the knowledge base with regards to understanding the importance of everyday decision-making for people with a diagnosis of dementia. We have little insight into what decision-making means for them and little understanding of the lived experience of how a dementia diagnosis can impact on how, and if, they participate in decision-making. Furthermore, the informal ways in which family carers can support and facilitate decision making for people with dementia is poorly understood.

This paper will report on the findings of a qualitative study that used hermeneutic phenomenology to explore the meaning of everyday decision making for people living with dementia and their family carers. Data from semi-structured interviews with people with dementia living in the community and their family carers will be presented, highlighting the importance of remaining central to decision making, and the key role that subtle support from carers can play in enabling this.

P19.4. More participation for people with dementia

Jansen Sabine

During the last years the German Alzheimer Association has run some projects to support participation and inclusion of people with dementia. The first project cooperated with community houses ("Mehrgenerationenhäuser") that offer different activities for all generations. Deutsche Alzheimer Gesellschaft has supported those houses to start new activities which improve the inclusion of people with dementia and their caregivers. Examples were Alzheimer Dance Cafés, common activities of children and old people, mixed activities for everybody and special proposals for people with dementia and/or caregivers.

A second project started in September 2012. Main aims are to increase the number of groups for people with early dementia and to improve communication between them. These groups may participate in the activities of Alzheimer Association and support their public relations activities with (political) statements, presentations on conferences etc. Additionally information material will be developed in easier languages that are better understandable for people with dementia.

P19.5. Tales from the sea: engaging people with dementia in maritime archaeology

Cutler Clare, Palma Paola

Maritime archaeology is a vital part of the UK’s national heritage that people with dementia are often excluded from accessing. The Tales of the Sea project has delivered a series of interactive, educational and stimulating maritime archaeological sessions for people with dementia, which aimed to provide an opportunity for access and learning around the history, discovery and recovery of the UK’s maritime archaeological heritage.

The sessions have mimicked processes which are followed by field archaeologists and have included activities such as:

  • Interacting with archaeological artefacts (for example pottery and wood)
  • Conducting a maritime archaeological excavation
  • Processing of artefacts (collecting and ordering artefacts found from the excavation)
  • Reconstructing artefacts (putting excavated artefacts back to their original state)

This presentation will report on a pilot study that has evaluated the above initiative and discusses how to engage people with dementia with non-conventional topics such as maritime archaeology. This will provide inspiration to others to try ‘new’ activities that are stimulating and educational for people with dementia. This novel intervention is an innovative demonstration of ways in which people with dementia can be stimulated and engaged in culture and history in a way that is meaningful to their locality.

P19.6. The biomedical concept of disease of Alzheimer’s disease generates from a patient perspective a cleft between diagnosis and the life with dementia

Kristensen Fritze

Introduction: Globally, there is a focus on the importance of diagnosing dementia syndrome. The applied diagnostic criteria for Alzheimer’s disease (AD) reflect a biomedical concept of disease. The biomedical viewpoint is strengthened with the inclusion of biomarkers in the proposed revision of the diagnostic criteria. Existing humanistic research has identified limitations in the biomedical approach. This study is a continuation of this research by incorporating the concept of disease.

Purpose: To explore if the diagnosis of AD in early stage has a form and a specificity allowing the affected person to make optimal use of the diagnosis in his or her conduct of life? Theoretical framework and methods:A humanistic dialectic perspective was applied to focus on the relationship between impairments of neurological functions and the experience of living with AD. A philosophical person-oriented, relational concept of disease was used including two standpoints: 1) a biomedical perspective, and 2) the person with AD – his or her experiences in the conduct of life. Critical psychology has been used to create knowledge of the patient perspective.

Design - qualitative longitudinal study: Semi-structured interviews and observations were used. Five persons diagnosed in a department of neurology with early stage AD and one of their relatives were included. The medical perspective was examined by analysis of medical records.

Results: From the perspective of the person with AD – the diagnosing based on a biomedical understanding of disease implied: 1) Clarification: a diagnosis. 2) Abstract knowledge about: Test results, what is AD and how does it progress as well as what the stabilizing effect of medication implies. 3) No recognition of well-preserved abilities to act. Resulting in assuming a conduct of life re-established by the person with AD and the relative not supported by the diagnosis.

Conclusion: The diagnostic examination could in addition to the concept of disease be based on an interdisciplinary collaboration with increased integration of the affected persons (and their relatives) experiences, and a person-oriented relational concept of disease, using critical psychology. Based on this approach persons diagnosed with AD could be offered rehabilitation based on his or her goals and preserved abilities. This study indicates that such a modified diagnostic practice may contribute to resolve the experience of a cleft between diagnostics and life with AD.



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