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P8. Dementia-friendly communities

Detailed programme, abstracts and presentations

P8.1. Connecting people living with dementia to nature: A celebration of woodland

Mapes Neil

Dementia Adventure and the Woodland trust are working in partnership to enable more people living with dementia to benefit from visiting woods. We are pleased to share the film ‘A Celebration of Woodland’ which is the product of a day which was made possible by the Woodland Trust Scotland's VisitWoods team. The day took place on the 24th July 2012 at Lochore Meadows in Fife, Scotland which is a beautiful natural setting with a park and woodland around a loch with very good disabled access facilities created on the site of a disused coal mine. The day, led by Dementia Adventure, involved 77 people coming together from all over the central belt of Scotland to enjoy a beautiful day of outdoor activity and fresh air. The community enjoying the day included people living with dementia from: Alzheimer’s Scotland Facing Dementia Together group, Scottish Dementia Working Group as well as residents, staff and family members from 11 care homes locally as well as staff and volunteers from Dementia Adventure and the Woodland Trust Scotland. There were various nature based activities and crafts on offer, people shared picnic lunches as well as tea and coffee served by volunteers. The film we would like to showcase was made by Edinburgh film makers Muckle Hen Productions, who volunteered their time to support this work. We are pleased to share this film which demonstrates the benefits and importance of nature and of woodland to people living with dementia. This successful partnership also shows how organisations can work across sectors in creative and engaging ways for mutual benefit in creating Dementia Friendly communities, communities where people living with dementia enjoy the outdoors.

P8.2. ACT on Alzheimer’s: A unique toolkit available to all communities to foster dementia capability

Mastry Olivia, McKinley Deb

ACT on Alzheimer’s is a statewide collaboration in Minnesota, USA, seeking to prepare and build capacity in Minnesota communities to address the spiraling needs related to the increasing prevalence of Alzheimer’s disease and related dementias. 

Using a unique collaborative model that involves over 50 non-profit, governmental and for-profit organisations and 150 individuals, ACT on Alzheimer’s is focused on five goals:

  1. Identify and invest in promising approaches that reduce costs and improve care;
  2. Increase detection of the disease and improve ongoing care;
  3. Sustain caregivers by offering them information, resources and in-person support;
  4. Equip communities to support their residents who are touched by the disease; and
  5. Raise awareness and reduce stigma by engaging communities in planning for and integrating Alzheimer’s resources that foster early detection, quality care and support and community readiness.

As part of goals four and five above, ACT on Alzheimer’s has developed a Community Toolkit to foster dementia capability and friendliness, which can be used in communities of any size, geography or interest.    

The toolkit guides users through a research-informed, four-phase process that fosters community readiness, engagement, collective action and measurement to develop dementia capable and friendly communities. The four phases include:

  1. Convening key community leaders.
  2. Assessing current strengths and gaps with respect to community dementia capability.
  3. Analysing community needs to identify and prioritise issues on which stakeholders are motivated to act.
  4. Acting together to establish implementation plans to achieve priority goals and measure progress. 

Each phase contains necessary action steps, resources, timeframes and best practices to support communities.  Once communities prioritise which goals to pursue, the toolkit provides a library of best-practice, how-to resources to implement change.

The presenters will present:

  1. An overview of the overall collaboration;
  2. Each phase of the Toolkit;
  3. Instruction on how to use the Toolkit in any community. Case studies to show how the Toolkit is being implemented in distinct pilot communities;
  4. An overview of technical assistance and resources available to communities that choose to implement the Toolkit; and
  5. Discuss evaluation and progress of the pilot communities.

P8.3. Connected Compassionate Communities “Something to believe in” – the embodiment of life affirming energy and hope for the future

Naidoo Marian and Shaun

This presentation will focus on research undertaken across Birmingham and Solihull that began in 2012 and was commissioned by the Birmingham and Solihull Combined Commissioning Group. Its purpose was to include people living with Dementia and their families and carers in the development of a new strategy for frail older people. The process embraced and reflected the lived experience and needs of a culturally diverse community. 

The researchers used a process of Living Theory Action Research (LTAR) with a particular emphasis on developing relationships and gathering narrative using digital media where appropriate. The research explored, through the gathering of stakeholders narrative, their experience of living with Dementia or caring for someone living with Dementia and the fundamental issues for them in maintaining levels of health and wellbeing while aging creatively.

LTAR was employed as a methodology as it was believed that it would enable ownership of the process by the participants involved in providing improved services.  LTAR always starts with participants asking themselves the question “How do I improve what I do?”

Developing trusting relationships played a significant role when working with community members. This was particularly important in relation to minority ethnic communities that many service providers had previously found difficult to reach and engage with. As researchers, the development of an authentic relationship as part of the LTAR methodology used was crucial. Finding a way to ensure that voices were heard became both a creative task for the researchers and an integral part of the action research process itself. Digital media as a feature of this research work ensured that narratives were recorded allowing evidence for themes to emerge. The significance of this locally and culturally provided a powerful platform for the creation of a complex picture of community/ies in all their diversity and allowed further work to be developed.

Bringing narratives to the table with service users, carers, providers and artists as part of the process has raised awareness with key providers of the importance of creative engagement being built in to service provision as part and parcel of the redesign process. More importantly it has produced qualitative data that has gone on to inform the development of a much more localised dementia strategy in the drive to encourage more dementia friendly communities.

By working together and sharing experience and learning, Connected Compassionate Communities has enabled levels of involvement and in particular from the BME communities that has been historically unprecedented. The focus on building trust through fluid communication and relationship building has enabled many individuals to disclose some very pertinent issues. This programme is about learning together to bring about transformational change by connecting communities of people together in the development of a community of practice based on the need to develop an inclusional and responsive frail elderly pathway. It is not about creating “add on” training of staff or “bolt on” of new protocols. It is important for the flourishing of these communities in the future that we enable the narratives of people living with dementia, their carers and family members to tell a story of improvement. We can help to achieve this by ensuring that provision within communities is really locality based and reflects the social and cultural makeup of the communities it serves.

P8.4. “I’d like a dementia-friendly world, but I’ll start with my local community”

Malone Brian

What is a dementia-friendly community from the point of view of a person of dementia and how does that compare with the professionals’ view?

The Scottish Dementia Working Group is a campaigning and awareness-raising group whose members all have a diagnosis of dementia. 

Brian Malone, a new member of the group, will give an oral presentation to highlight the work being done both locally and nationally across Scotland to encourage communities to become dementia friendly.  He will explore how these community initiatives have a positive impact on the way we live our life day-to-day lives. The presentation will explore the question “who decides what a dementia-friendly community is?”, and discuss the importance of involving people with dementia in designing and building communities which are truly dementia friendly.

P8.5. Dementia friendly community pharmacies – building participatory networks for community-based care

Plunger Petra, Tatzer Verena, Heimerl Katharina

Background: People with dementia and their caregivers are regular users of community pharmacy services. However, so far only a few pharmacy-based initiatives have focused on their needs apart from medicines management. Based on Palliative Care and Health Promotion principles, the project “Dementia friendly community pharmacies. Community-based health promotion for people with dementia and their caregivers” aims at transforming community pharmacies into dementia-friendly settings supporting dignity and quality of life of people with dementia and their caregivers. Applying principles of community based participatory health research (CBPHR), people with dementia and their caregivers, community pharmacists and health care and community partners will be involved in re-orienting community pharmacies (von Unger 2012, Plunger & Heimerl 2012).

Research Questions and Methods: CBPHR is linking research and interventions, and calling for a cooperation of community partners, professionals and researches, ultimately aiming at creating relevant knowledge for transforming health care practices and settings. The following questions are guiding the partnership-building process: Who are relevant partners/communities to be involved? How can all relevant partners be involved equally? What are experiences and expectations of people with dementia and their caregivers regarding community pharmacies? How do community pharmacists conceptualise re-orientation of pharmacies? To facilitate participation and grasp various perspectives, interviews, focus groups and a needs assessment using appreciative inquiry are being carried out. Transdisciplinary working groups will be organised to develop interventions and community-based projects. Furthermore, all partners participate in relevant discussions and decisions via involvement in project bodies – the steering committee and advisory group.

Results and Discussion: Involvement of relevant partners was conceptualised as gaining interest from professionals - pharmacists, other health and social care practitioners, and community partners – people with dementia and their caregivers. So far, the project succeeded in building partnerships with Alzheimer Austria, a self-help group, community pharmacies and their professional body and health promotion and palliative care organisations, who all provided rich input for the design of the project. Already at this point, differing perspectives on caring for people with dementia and their relatives in pharmacies became visible, which may be framed as problem-based vs. person-centered. First results from the ongoing needs-assessment will be presented and implications for further cooperation and development of interventions will be discussed, as well as potentials and challenges of CBPHR.

P8.6. The lived experience of the neighbourhood for carers of people with dementia

Ward Richard, Clark Andrew

This paper will report on a qualitatively-led study of the relationship that carers of people with dementia have with their neighbourhood. Using a mix of methods to consider the dynamic relationship of the neighbourhood as a physical space and as a social space the research explored the changing nature of place and space over time for a group of carers and ex-carers in the North West of England. The research reflects a growing interest in the notion of ‘dementia-friendly communities’ in both policy and practice. However, in a context to date where much research has prioritised either the physical properties of the local environment or the social networks in which people with dementia and their carers are embedded we argue for the importance of considering the relationship between these different dimensions of place in the formation of notions of what constitutes dementia-friendly environments. In particular our focus has been upon how carers experience their neighbourhood; the role it plays in their everyday lives; and the shifting meanings of home and local spaces in the context of living with and caring for a person with dementia. Our findings suggest the need to consider place and space over time and we draw in particular upon notions of place as a ‘spatio-temporal event’ (Massey, 2005) in order to underline the fluid and changing relationship to the local environment that people experience in the context of living with dementia. Such insights have important implications for how we conceptualise ‘dementia-friendly communities’ and underline the value of using a creative mix of methods to better understand the multi-faceted nature of the neighbourhood.

 

 
 

Last Updated: Wednesday 06 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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