Care and Connect: Exploring Dementia-Friendliness Through an Online Community Commissioning Platform

In this paper, we present "Care and Connect", a mobile application created through the App Movement platform that aims to identify and rate public places (e.g., parks, shops, cafes) on their 'dementia-friendliness' - their suitability for people with dementia and their carers. Care and Connect saw significant support in its early stages on the online platform, yet failed to engage participants in its design phase and deployment. To unpick this, we contribute an account of its initial use in the community, and then describe findings from research engagements with carers and people with dementia. These workshops used Care and Connect to structure discussions of participants' own experiences of dementia-friendliness, and uncovered themes of 1) trust, 2) exclusion versus inclusion, 3) duration and quality of time, and 4) empathy becoming action. Using this evidence, we advance an account of online community commissioning as a process which needs to understand not only the general issues ongoing in communities facing significant life challenges, but also the particularity of community members' experiences.

[1]  S. Aronson,et al.  For now, we see through a glass, darkly. , 2013, Rhode Island medical journal.

[2]  J. Sleigh,et al.  V. 'For now we see through a glass, darkly': the anaesthesia syndrome. , 2014, British journal of anaesthesia.

[3]  Patrick Olivier,et al.  App Movement: A Platform for Community Commissioning of Mobile Applications , 2016, CHI.

[4]  Patrick Olivier,et al.  Authenticity, Relatability and Collaborative Approaches to Sharing Knowledge about Assistive Living Technology , 2015, CSCW.

[5]  Katina Michael.  For Now We See Through a Glass, Darkly [Editorial] , 2013 .

[6]  Kate Swaffer,et al.  Dementia: Stigma, Language, and Dementia-friendly , 2014, Dementia.

[7]  A. Fleisher,et al.  Managing Patients with Alzheimer’s Disease and Related Dementias , 2015 .

[8]  Deborah Reed‐Danahay,et al.  ‘This is your home now!’: conceptualizing location and dislocation in a dementia unit , 2001 .

[9]  K. Brittain,et al.  Exploring the views of GPs, people with dementia and their carers on assistive technology: a qualitative study , 2016, BMJ Open.

[10]  Alison Bowes,et al.  Implementing telecare for people with dementia: Supporting ageing in place in West Lothian, Scotland , 2009 .

[11]  Zaheer ul Hussain Sani,et al.  Context-aware life-logging for persons with mild dementia , 2009, 2009 Annual International Conference of the IEEE Engineering in Medicine and Biology Society.

[12]  L. Mitchell.  Breaking new ground: the quest for dementia friendly communities , 2012 .

[13]  E. Wiersma,et al.  From social network to safety net: Dementia-friendly communities in rural northern Ontario , 2016, Dementia.

[14]  I. Rosset,et al.  Global Epidemiology of Dementia: Alzheimer's and Vascular Types , 2014, BioMed research international.

[15]  C. Hertogh,et al.  Dying with dementia: symptoms, treatment, and quality of life in the last week of life. , 2014, Journal of pain and symptom management.

[16]  Yvonne Rogers,et al.  Does he take sugar?: moving beyond the rhetoric of compassion , 2013, INTR.

[17]  R. Woods,et al.  Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma , 2005, International journal of geriatric psychiatry.

[18]  Gillian McColgan.  A Place to Sit , 2005 .

[19]  J. Forlizzi,et al.  Intelligent assistive technology applications to dementia care: current capabilities, limitations, and future challenges. , 2009, The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry.

[20]  Erik Duval,et al.  Designing with Dementia: Guidelines for Participatory Design together with Persons with Dementia , 2013, INTERACT.

[21]  John Bond,et al.  Ageing in place and technologies of place: the lived experience of people with dementia in changing social, physical and technological environments. , 2010, Sociology of health & illness.

[22]  Anders Kottorp,et al.  Readiness for Technology Use With People With Dementia , 2012 .

[23]  J. Voelkl,et al.  Providing Dementia Outreach Education to Rural Communities: Lessons Learned From a Train-the-Trainer Program , 2002 .

[24]  Mary McCarron,et al.  Perceptions of stigma in dementia: An exploratory study , 2006 .

[25]  Kristine Holbø,et al.  Safe walking technology for people with dementia: what do they want? , 2013, ASSETS.

[26]  Gunnar Ellingsen,et al.  A Review of 25 Years of CSCW Research in Healthcare: Contributions, Challenges and Future Agendas , 2012, Computer Supported Cooperative Work (CSCW).

[27]  Morten Kyng,et al.  On participatory design of home-based healthcare , 2012, Cognition, Technology & Work.

[28]  A. Vreugdenhil.  ‘Ageing-in-place’: Frontline experiences of intergenerational family carers of people with dementia , 2014 .

[29]  P. Olivier,et al.  Empathy, participatory design and people with dementia , 2012, CHI.

[30]  Facundo Manes,et al.  Contextual social cognition and the behavioral variant of frontotemporal dementia , 2012, Neurology.

[31]  S. Sabat,et al.  Relatedness among people diagnosed with dementia: Social cognition and the possibility of friendship , 2012 .

[32]  R. Bartlett.  Scanning the conceptual horizons of citizenship , 2016, Dementia.