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P13. Care approaches: Dementia-friendly initiatives

Detailed programme, abstracts and presentations

P13.1. Dementia-friendly communities - what's the point?

WARD Richard

University of Stirling, Stirling, United Kingdom

The notion of a ‘dementia-friendly’ or dementia-enabling community is an innovation intended to create more liveable public and community settings, inclusive of people living with dementia. In the UK, the idea was introduced through national policy in 2012 as part of a wider push to raise awareness of dementia and with the hope of enabling people with dementia to remain living at home and continuing to actively participate in their local communities for as long as possible. While some commentators have questioned the very notion of ‘dementia-friendliness’ and others have challenged the necessity for a separate dementia movement in the wake of the existing age-friendly cities agenda, there has been a proliferation of community-based initiatives across the UK.

In this paper, we report on a 5-year international project jointly funded by the Economic and Social Research Council and the National Institute for Health Research (UK). The ‘Neighbourhoods: our people, our places’ project is part of a wider programme on neighbourhoods and dementia, which set out to work closely with people with dementia and carers to better understand the experience of the local areas where they live. The project has involved participatory research leading to community development, and we are currently piloting innovations to the support and services offered to people with dementia at a local level. Here, we share some of the key findings and messages from the study in a context of exploring what a dementia enabling community means to people with dementia and those who care for and support them. Our argument is that the experiences of people with dementia may provide a foundation on which to create more inclusive communities, but are also a basis on which to question the norms and assumptions embedded within our built and social environment.

P13.2. Rising to the Challenge: How can we make air travel more accessible for people with dementia across Europe?

TURNER Katherine, WARREN Alison, BANNIGAN Katrina, SHERRIFF Ian

University of Plymouth, Plymouth, United Kingdom

Society is gradually recognising and responding to the fact that people living with dementia wish to remain actively involved in meaningful activities post diagnosis. However, despite advocacy from a range of organisations, including the Prime Minister’s Dementia Challenge within the United Kingdom, there are still improvements required in a range of settings to enable accessibility for those living with dementia.

One such area that has received attention for not meeting the needs of people living with dementia is air travel. Whilst European legislation covering inclusivity in flying for those with disabilities already exists, it appears that such legislation is potentially interpreted in favour of those with physical, rather than ‘hidden’, disabilities; a term used to encompass not just dementia but also autism, learning disabilities and others, reducing access for these groups (Page, Innes and Cutler, 2015).

This presentation will provide an overview of an ongoing PhD study that aims to capture the air travel experiences of people with dementia and their travel companions. Ultimately this research seeks to increase participation in air travel for this consumer group and to address the potential injustice of non-participation due to factors outside an individual’s control. Preliminary findings from face to face interviews with participants will be shared to illustrate how a diagnosis of dementia may affect a person’s meaningful engagement with the occupation of air travel and thus impact on their quality of life.

In the longer term the results of this study will inform guidelines for the aviation industry on how they can support people living with dementia in the future.

Page, S.J., Innes, A. and Cutler, C. (2015) ‘Developing dementia-friendly tourism destinations: An exploratory analysis’,Journal of Travel Research,54(4), pp. 467-481.

The support of The University of Plymouth, School of Health Professions in funding this research is gratefully acknowledged.

P13.3. Creating dementia-friendly communities in prisons in the East of England – an evaluation

VAN BORTEL Tine, TREACY Sam, WICKRAMASINGHE Nuwan, HAGGITH Anna

University of Cambridge, Cambridge, United Kingdom

Background: Prisoners aged 50 and over are the fastest growing group across prisons in England and Wales, with an estimated dementia prevalence of 1-5%. Whilst the creation of dementia-friendly communities (DFCs) is a cornerstone of UK Government dementia strategy, their establishment in a prison context appears to be limited, and no published evaluations have been found. In partnership with the Alzheimer’s Society, this project evaluated the process of developing DFCs in two English prisons.   

Methods: This mixed-method, 6-and-12-month follow-up study included 68 people (50 prisoners and 18 prison staff). At each prison, an initial dementia awareness session was conducted, environmental audits, and meetings between prison staff and Alzheimer’s Society representatives. A study-specific questionnaire, interviews and focus groups were used to explore progress towards creating a DFC in prison, and barriers and facilitators to this.

Results: Awareness session attendees reported significantly increased knowledge of dementia and confidence in talking to prisoners living with dementia (PLWD). Progress towards creating DFCs included:

  • Joining local Dementia Action Alliance
  • Developing prison-wide Dementia Action Plan
  • Training prison officers as Dementia Champions
  • Small environmental and regime changes
  • Prisoners producing dementia-dedicated prison magazine

The prison with the larger proportion of older prisoners engaged more fully, whilst the other prison reportedly could not justify committing additional resources in the current austerity-driven climate. Other barriers and facilitators included employing prisoners as supporters of PLWD, placements of prisoners on older prisoner wings, and communications within prisons.

Conclusion: Despite growing concerns about the plight of PLWDs as particularly vulnerable in institutions designed for younger people, with violence and self-harm at record highs, the Government has not produced any strategy or policy in support. This project demonstrated that DFC principles are acceptable and relevant to prisons, but may only be engaged with selectively unless the needs of PLWDs are championed beyond prison gates. 

P13.4. Making companies Dementia Friendly

REINSTRA Roderik

Alzheimer Netherlands, Amersfoort, Netherlands

Introduction: There are approximately 270.000 people with dementia in the Netherlands. They all have their own daily problems. To improve their quality of life, we need to make different industries Dementia Friendly. Therefore, a national 5-year dementia friendly program was launched in May 2016. This program aims to increase the awareness, understanding and knowledge about how to act upon dementia. Not only for the normal civilian, but also for companies of different branches. 

Aim: Make as many companies (and their employees) Dementia Friendly as possible.

Methods: To do so, we designed special on- and offline trainings for all different branches. For example, we recently launched e-learning for the hospitality industry. The situations of this training are gained via experiences in the work field. The problems they come across together with experience from our support group (people who have experiences with dementia) gives us all situations that can happen in daily life when a customer/client has dementia. To reach as many different companies from the same branch, we reach out to trade unions and corporates. All companies that are connected with these are easily informed about the training and they can join on- and offline trainings. 

Results: At the time, we launched 9 different online trainings for different branches. The program is not finished yet, and we are still working really hard to make the assortment of branch trainings as wide as possible. Some big companies that already take part in the Dementia Friendly program are for example Albert Heijn (supermarket), KPN (telephone) and Rabobank (banking). 

Conclusion: We are on the right track in making as many Dutch companies Dementia Friendly and are still working on involving even more different branches. An oral presentation will give others useful tips about involving corporates, trade unions and companies in becoming Dementia Friendly.

P13.5. “Social inclusion for people living with dementia through participation in local voluntary activities” a qualitative study of the user’s perspective

PETERSEN Kirsten Schultz, BERTELSEN Tilde Marie

Aalborg University, Aalborg, Denmark

People living with dementia and their spouses often experience challenges in participating in social activities, and are at risk of social isolation. ‘Dementia-friendly communities’ is a term and policy initiative that have been championed by governments and user organizations around the world, aiming to enable people living with dementia to feel supported and included within their local community by providing support and social networks. Developing dementia-friendly societies rely on stakeholder involvement and often involve voluntary work provided by user organizations.

From the perspective of the people with dementia and their spouses, this study explores the value of participating in social activities provided by local voluntary workers targeting people living with dementia, focusing particularity on the value of the social interaction and how activities might help support people with dementia and their spouses.

The study is designed as an ethnographic field study exploring the interaction between voluntary workers and the people engaged in a variety of activities provided by volunteers from The Danish DaneAge Association. Participatory observation including informal conversations at nursing homes, local dementia cafes, support groups and home visits, and individual interviews with people living with dementia and their spouses were used during data collection. Field notes and transcribed interviews were coded and themes of importance identified.    

Findings show that the interaction between volunteers and people with dementia is characterized by a close relationship, participation in social activities targeted people living with dementia facilitate social participation, support identity, prevent social isolation and provide spouses a moment of free time. Thus, participating in activities in the local community promotes inclusion and encourages participation in meaningful social activities with others. Compared to former studies, this study provides insight into the meaning of the interaction with voluntary workers and how this facilitates social participation and community involvement for people living with dementia.

P13.6. Dementia friendly public space and public transport – findings from a qualitative research project in Austria

REITINGER Elisabeth1, PICHLER Barbara1, KNOLL Bente2, EGGER Barbara1, HOFLEITNER Birgit2, HEIMERL Katharina1

1Alpen-Adria University of Klagenfurt, Vienna, Austria, 2Office for Sustainable Competence, Vienna, Austria

Background: Mobility and moving around in public space and public transport are core factors influencing social participation of people with dementia. Due to a process of progression of withdrawing from various social activities mobility of people with dementia in public space and public transport reduces. Little is known about how people with dementia experience accessibility in public space and public transport in the metropolitan area in Austria.  

Aims: So the aims of the study are to (1) contribute to the knowledge base about motives and behavior of people with dementia in Austria as well as (2) formulate recommendations based on these insights.

Methods: Narrative interviews (n=24) and accompanied walks (n=15) have been conducted with people with beginning dementia to find out more about motives and daily routines concerning their mobility in public space and public transport. Usability studies (15) with already existing technical support systems have been carried out. Data analysis used documentary methods and content analysis and illustrations by maps of the routes of the persons with dementia.

Findings: Based on the narrative interviews a typology has been elaborated that shows different ways of “being in the world” of the participants concerning mobility. One characterization can be called “social orientation”, the other “individual orientation” and different coping strategies of finding the way in complex situations can be observed. The accompanied walks show different routes concerning everyday mobility in public space and public transport.

Discussion: Based on these findings it is important to acknowledge the diversity of persons living with dementia concerning mobiliy patterns. As many people with dementia live in old age also reduction of the activities of daily living has to be taken into account. Recommendations for a dementia friendly public space and public transport therefore need to consider age specific as well dementia specific requirements.

 

 
 

Last Updated: Tuesday 13 November 2018

 

 
  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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