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P22. People with dementia II

Detailed programme and abstracts

P22.1. Co-producing environmental checklists for dementia groups

CHRISTIE Julie, HARE Phili

Accessible and welcoming environments are a key component of a dementia-friendly community, and it is increasingly common (though not yet common enough!) for people with dementia to be invited to comment on their experience and advise on what could be improved.

In the UK, there are now over 85 influencing groups led by people with dementia and together forming the DEEP network. These groups are often invited to comment on public spaces such as theatres, stations, cinemas etc in order to make them more dementia-friendly. This provides the group with a great opportunity to influence their environment, and to make it easier for them and others who are living with dementia to get out and about in their locality.

At an event that was part of the ESRC-funded project ‘The Impact of Dementia Activism’, three DEEP groups asked for a simple evidence-based checklist which would assist them to use a more   systematic approach in these visits, while enabling them to remain informal and to use their ‘lived experience’.

Working with design experts Prof Mary Marshall and Annie Pollock from Dementia Centre HammondCare, Philly Hare developed and tested out two checklists (one for inside and one for outside spaces) with 3 of the DEEP groups – from Liverpool, Stockport and Kent.

Philly’s presentation will cover: the ten key questions covered in each checklist (such as lighting, noise, signage etc); the process of testing them out in real-life audit situations; key learning points from this process; and a look at the final outputs. She will include learning from the groups as to how the checklists can best be used and how everyone in a group can contribute, whatever their skills or ability. The learning is transferable to all other countries.

P22.2. The Irish Dementia Working Group: road to governance

EASTON Avril

The Irish Dementia Working Group established in 2013, is an advocacy group for people with dementia led by people with dementia.  The members of the group work to raise awareness and promote better understanding of dementia, lobby for improved services for people and participate in research and policy development.

From the outset, the group acknowledged that governance and structure would play an important role in driving their work forward. They sought to ensure that the members of the group were involved at every level as equals and that they would have a role in leading and making necessary decisions. 

Since its establishment, the group has worked towards developing a stronger model of governance. Examples of the measures taken to achieve this will be outlined in the presentation including:

  • A Terms of Reference were developed outlining the purpose of the group and the various roles in it.
  • The group informally appointed their first Chair in 2014, followed by a Steering Group in 2015. In 2016 the group held their first election and the members elected a Steering Group using approaches that enabled all group members to contribute to the nomination and voting process.
  • The Steering Group holds responsibility for reviewing the processes and procedures within the group to ensure that all members are appropriately supported and feel that the work is relevant to them.
  • A template was developed to manage the many requests that are received by the group. This was to ensure that other people and organisations understood what was expected of them when they wished to engage with the group and in turn that members were clear about what was being asked of them.

This presentation will outline the processes the Irish Dementia Working Group have developed to build a stronger governance model for the future and the learning and challenges that this has presented.  It will be co-presented by an Alzheimer Society of Ireland staff representative and the Chair of the Irish Dementia Working Group.

P22.3. Using technologies for safer walking – key findings for people with dementia and their families

BARTLETT Ruth, BRANNELLY Tula, HOLLAND Caroline, FORRESTER Alex, COGGON John

In light of rapid technological advances, and the right of people with dementia to expect effective measures to be taken to facilitate their personal mobility and social inclusion, this talk presents and discusses key findings from a 28 month (November 2015 – February 2018), interdisciplinary qualitative research project, funded by the Alzheimer’s Society, England.   The project is called Using Technologies for Safer Walking: A Participative Inquiry and seeks to address this question: How effective and acceptable are technologies for promoting safer walking? The project takes a disability-rights perspective and centralizes the care needs, views, and actions of citizens with dementia.  

The project had three phases. Phase one involved focus groups with the police (n=20), and individual interviews with people with dementia (n=16) and family members (n=16).  Phase two employed go-along walking interviews with people with dementia (n=15) who were using some form of technology, such as a GPS device or phone app, when they went out.  These interviews were followed up with a sit-down interview with the person with dementia and a family member. The third phase involved an overnight residency with people with dementia, family members, researchers, clinicians, practitioners and artists; together we reviewed findings and identified key messages for policy makers and other stakeholders. See the project website for more information www.soton.ac.uk/dementia-rights

Here, we present some key findings that relate directly to what is important for people with dementia and their families to know about when using technologies for safer walking.

Findings are grouped in terms of:

  • Functionality and usability of GPS-enabled technologies
  • Degree of voluntariness, trust, and involvement of authorities
  • Relationship between walking and social citizenship 

Throughout the project, we have been guided by an Advisory Group made up of people with dementia and their family carers, and the principles of participatory research.

P22.4. The lived experience of risk for a person with a recent diagnosis of dementia

OSBORNE Sally

This longitudinal qualitative study explored the lived experience of risk for people with a recent diagnosis of dementia (Alzheimer’s type). Risk is a concept used in dementia research when examining choice and decision-making, and is primarily a negative phenomenon associated with danger and hazard. In this study, risk is used as an exemplar of autonomy and rights—rights to independent action taken with free will and choice. These rights are entwined with key principles we live by: personal autonomy—the right to act independently—to take a risk.

The lived experience of risk was explored at a time when participants were harnessing their personal resources in order to tackle the transient effects of living with dementia. The findings indicate that risk was a normal part of life—indeed it was life. A diagnosis of dementia however, was a portent for change whereby the upheaval and uncertainty of everyday life precluded the desire to embrace risk. Paradoxically, risk was also withheld from the participants by significant others, resulting in feelings of impotency and distress.

Implications from this study were significant. Among them, the voices of the participants with dementia provide the best opportunity to understand their lived experiences of risk. This behoves all of us to listen and uphold those voices. The heterogeneity of having a diagnosis also requires acknowledgement as we reflect on practice, on how people are treated, how dementia is perceived and how dementia many be shaped an as inherent part of our contemporary life.  Social citizenship is assured when communities build inclusion and engagement for its citizens and support the well-being of everyone, including those with dementia. This demands a response at a societal, institutional and interpersonal level.

P22.5. Benefits from a working group of people with dementia by Norwegian Health Association

BREKKE Liv Anita, BAARLID Kari-Ann

The Norwegian Health Association promotes the interests of people with dementia and their carers, and has local branches across the country.

With inspiration from the Scottish Dementia Working Group and the European Working Group of People with Dementia, the Norwegian Health Association established in 2013 a working group of people with dementia. The group meets four times a year, consists of eight people with dementia and their carers and provides the organisation with advice based on their experiences of living with dementia. The group has been involved in the development of the organisation’s health policy, on-going projects, information brochures as well as awareness raising activities. The members of the working group are experts on dementia; and by meeting and discussing issues of importance to both them and the organisation, they contribute to increased openness and public understanding about dementia.

By listening and acting on the views of the working group and placing it at the heart of our organisation, we are able to make a strong case for involving people with dementia among our partners including local authorities and government departments. Therefore, the group strengthens our organisation and legitimacy. Over the long term our aim is to establish working groups in some of our local branches. This oral presentation will be an opportunity to hear about how we facilitate the group and what we have learned along the way to ensuring the voices of people with dementia are integrated into the work of our organisation.

P22.6. The importance of meaningful activity – an innovative collaboration between people with dementia and Occupational Therapy students

NOONE Archie, MACLEAN Fiona, HUNTER Elaine, SDWG

The Scottish Dementia Working Group (SDWG) is a national campaigning group led by people with dementia.  Two objectives of the SDWG are; to reduce the prejudice and stigma attached to dementia, and to develop information, education, awareness and training in the field of dementia.

To support these objectives, an innovative academic internship collaboration emerged between the SDWG, Alzheimer Scotland and occupational therapy students and graduates of Queen Margaret University, Edinburgh. A guiding precept of this partnership has been the importance and value placed on the centrality of occupation to the projects undertaken.  Occupation may be defined broadly as the various everyday activities people do as individuals, in families and with communities to occupy time and bring meaning and purpose to life.

The presentation will share examples of projects with SDWG over the last three years including a film called ‘Who Am I?’, challenging viewers to consider who we see when we see someone with dementia and a top tips leaflet sharing how to live well with dementia.  Additionally, photography and accompanying narratives have been collected to explore meaningful occupation identified by members of the SDWG as being of importance to them.  The photographs will be shared and highlight the importance and value of everyday activities to people living with dementia, helping to challenge assumptions.  The outcomes of the internship programme, as well as the experiences interns themselves gain from these opportunities, all serve to support the objectives of the SDWG.

This presentation will share the benefits of and value of this partnership between members of SDWG and occupational therapy students and new graduates, highlighting the methods through which the voice of people experiencing dementia have influenced the creation of projects.  Further, this paper will consider the ways through which the academic internship collaboration has aligned with SDWG objectives and how outcomes have influenced wider learning and teaching of allied health professional students.

 

 
 

Last Updated: Monday 23 October 2017

 

 
  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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