Enabling Ongoingness:

Project Leader: Prof. Jayne Wallace (Northumbria), Dr. Kyle Montague

Staff: Dr. Kellie Morrissey, Prof. Shaun Lawson, Prof. Patrick Olivier, Dr. Claire L Craig

Sponsors: EPSRC

Partners: Alzheimer's Society, BBC, Cruse Bereavement Care, Dementia Action Alliance, Dementia Positive, Hospice UK, Marie Curie Cancer Care, National Council for Palliative Care, NIHR CLAHRC for South Yorkshire

The ‘oldest old’ are the fastest growing age group in the UK and a grand societal challenge we face is that the nature of growing older and end of life is changing. There are distinct challenges that are pushing some existing systems to breaking point (e.g. there is an increasing demand for care, but there are reductions in resources available to support the older old and worryingly a reduction in people using local authority care services which is suggestive of exclusion). We position this research within the fourth age; a period of life clinically characterised by physical and cognitive frailty and decline towards death. People in this period of life are seldom included in research, but have a unique voice around critical societal challenges and could be sensitively and meaningfully included into research in order to give them a voice in the reimagining of digital media to support sense of self for the older old. Further this research will engage with carers and those bereaved to investigate how new media could support people’s relationships and sense of self not only at end of life but also in bereavement.

We are living in a new digital age, each gathering a digital trail of media and personal data as we live: photographs, videos, blog posts, forum comments, Facebook conversations, tweets, music preferences etc. Whether these are created by us or by others about us there is a vast and rich wealth of digital media that could be leveraged and reappropriated to reflect positive things back to us in new ways – about ourselves and our connectedness with others. The concept of ongoingness is something we see as valuable for the development of new tools and systems for the configuration of metadata in new ways. Ongoingness suggests that all stages of our lives are connected and continuing, which gives us ways to think about what digital media creation and consumption practices could be that draw on the repository of media connected to us in challenging contexts. It also gives us the ability to consider how digital technologies could be developed in acknowledgement that people need to maintain a form of connectedness to a dead loved one in bereavement. Beyond memorialisation people benefit from practices that nurture an ongoing (albeit different) relationship with the deceased after a loved one has died. To date there is a lack of research considering technology for these contexts and what we can’t do currently is curate this vast resource of media to specifically support sense of self, help people deal with their own approaching end of life, nor help others deal with bereavement of a loved one through using these digital assets in purposeful ways.

Through links via our partners from Alzheimer’s Society, Cruse, NCPC, HospiceUK, Dementia Positive, Marie Curie and Dementia Care we will work with older old people, carers and the bereaved using a research through design methodology to gently use acts of making and reflecting through objects to firstly develop new ways of using our metadata, secondly develop and deploy Internet of Things high fidelity prototypes that enable creation and curation of this digital media in new ways and thirdly develop new visions of consumption that foreground ongoingness. To give an example of what this could mean in the context of anticipating death – through their lives Betty and Derrick always used to jokingly argue with each other as to which song was better The Beatles ‘Blackbird’ or ‘Dear Prudence’. Derrick curates their media so that after his death when Betty selects ‘Blackbird’, the song ‘Dear Prudence’ will always be played straight afterwards because he knows that it will make Betty smile. The couple loved gardening, now every May Betty unfolds her e-paper and a compilation of podcasts featuring specific flowers from the current year’s Chelsea Flower Show are sent to Betty and a matching bouquet is delivered to her with anecdotes from Derrick’s blog of how he grew some of these plants.