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The 100-year Life: End of Life, Death and Bereavement

The 100-year Life: End of Life, Death and Bereavement

An enquiry building on previous work funded by Marie Curie exploring the role of design in rethinking how we experience end of life, death and bereavement.

Funded by: Research England

Project lead: Helen Fisher, Claire Craig

The UK is undergoing a huge demographic shift. On average people are now living much longer and this trend is set to continue: by 2037 the number of people aged 65 and over will rise from 11.6 million today to 17.8 million. While this is a triumph of modern medicine and living standards, it will actually translate into more, increasingly frail, older people, with multiple health issues, who will need more care towards the end of their lives. More people will need personalised and tailored care in the future and most of this care will take place in the community, in people’s own homes and care homes, rather than in hospitals. Within the context of the 100 year life, a consideration of the role of design at end of life is important. Death is a key part of life and of the 100 year life.

This enquiry builds on the 2 year Marie Curie funded research project Design to Care. Claire Craig is working with the Michele Angelo Petrone to explore ways of supporting individuals diagnosed with life-limiting and terminal illness. Helen Fisher is working with the FLOW Academy (led by Sheffield Teaching Hospitals with representation from key organisations across the city including the Carers Centre, Age UK, Sheffield Alliance, MIND and other 3rd sector orgnisations) to explore the potential of design-led interventions in the context of carers and family members.

Future Care Home

This enquiry explores the role of design in reimagining the future care home. It focuses particularly on the role of design in the creation of research informed products to promote meaningful engagement between residents in the home, their families and care staff.  

Funded by: Research England

Project lead: Claire Craig, Helen Fisher, Tom Maisey

Partners: Kathryn Rawling, Sheff Care

Older people living in care homes have some of the most complex needs of society (BGS 2016). Whilst there is a high level of consensus that participation in meaningful activity leads to increased quality of life for older people (Han et al 2016, Wenborn et al. 2013) repeated studies have highlighted the limited opportunities older people living in care homes currently face when accessing this provision. Mozely’s study, for instance, identified in her study of 100 homes that 80% of the homes provided less than 6 minutes of activity per resident per day. A similar picture was presented in Hancock’s research (2006).

In response to this unmet need design researchers in Lab4Living have been investigating the development of ludic artfacts to support the wellbeing of older people (Craig, 2014, Craig, Chamberlain and Fisher, 2018; Fisher, Craig and Chamberlain, 2019 and Maisey and Craig 2016). To date, residents from over 10 care homes in Sheffield have participated in the study and a number of research informed products have been created. These are currently being evaluated.

The research raises questions about meaning and value in the context of the care home and the potential to re-imagine this space and the interactions that occur there.

Being part of this project has been an extraordinary and wonderful experience, you are transforming the lives of individuals I work alongside 

Sheff Care Member of Staff

Re-imagining ageing

This design-led research study seeks to understand, higlight and challenge many of the existing negative conceptualisations of ageing to re-imagine the 100 year life. 

Funded by: Research England

Project lead: Claire Craig, Helen Fisher, Alison Mayne, Fanke Peng

Patricia Moore, in the 1970s identified stigmatising nature of ageing and importance of design and the role it has to play. Yet 50 years after this study little has changed, we still see the design of products and environments that reinforce existing stereotypes of ageing. If the ambitions of the Industrial Strategy are to be realised, we need to find ways of understanding how deeper and hidden conceptualisations of ageing shape the design process. Without this understanding poorly designed products will continue to perpetuate societal assumptions about what ageing means. This research seeks to understand these deeper preconceptions and build insights in relation to how they have evolved. 

This research comprises of 3 inter-related studies:

  • Dr. Claire Craig and Edinburgh based researcher Dr. Alison Mayne have undertaken a systematic review of the ageing and design literature.
  • Dr. Fanke Peng (University of Canberra and co-founder of the cross cultural design lab) is working with older artists in Canberra who are exploring ‘ageing from the inside’ by creating self-portraits through a range of media including sculpture, textiles and painting
  • Dr. Joan Healey on secondment with Lab4Living is exploring this theme using poetry, prose and other forms of writing 

This phase of the work will culminate in an exhibition to share the findings to date and to act as a stimulus for further discourse.

Ageing populations will create new demands for technologies, products and services, including new care technologies, new housing models and innovative savings products for retirement. We have an obligation to help our independent, older citizens lead fulfilled lives, continuing to contribute to society. 

Industrial Strategy

Trails – Enabling Ongoingness

A design artefact that explores concepts of ongoingness in the context of dementia. The piece explores the relationship between a granddaughter and her grandparents through capturing and curating digital media now for the future, offering ways for her to feel a sense of her grandparents in particular places.  

Project lead: Helen Fisher

Funded by: Research England

Partners: Northumbria University (Lead) / Newcastle University / BBC / Marie Curie / CRUSE Bereavement / National Council for Palliative Care

Trails is a tiny audio artefact that invites the listener to discover stories captured and curated by loved ones with dementia when visiting places that are meaningful for the person and their family. The artefact is one design response generated as part of the EPSRC project, Enabling Ongoingness which explores the role of design in creating meaningful connections with people who have passed away or who are at end of life.

For more information please visit the Enabling Ongoingness Website.

The Memory Box – Children’s Book

Dementia can impact on all family members, particularly children or grandchildren. However there is a dearth of material to help children understand what is happening… 

Funded by: Research England

Project lead: Claire Craig, Helen Fisher

The Memory Box is one of a series of books aimed at children to build understanding of what dementia is and how to best support a relative living with the condition. The research examines whether this medium can help children to navigate the complex challenges that having a parent or grandparent with dementia can bring.

Making Sense Together

A space where people with dementia, family members and supporters can come together and explore ways of living well with dementia.  

Project lead: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Scottish Dementia Working Group / Alzheimer Scotland / DEEP Network

Traditionally patient information for people living with dementia is written separately from that aimed at their family members and carers. This research enquiry challenges this genre and through a participatory design research process has developed a resource to enable people with dementia and their family members to make sense of the condition and develop supportive strategies together.

This resource has transformed how we relate to each other. We have completely re-designed our routine, the environment and this has made all the difference in adapting to and managing the challenge that dementia brings.

Support of Person with Dementia

Life Portraits

Death is still a taboo subject and conversations about end of life are fraught with complexity. This enquiry explores how design can support conversations about end of life. 

Project lead: Helen Fisher

Funded by: Research England

A cultural probe has been developed to facilitate activities that can be shared between family members to explore what is meaningful to an individual and to identify how they would like to be remembered. 

Upon completion of the probe, the information gathered is interpreted and developed into a bespoke piece of artwork for that individual in the form of a life portrait.  

Compassionate Sheffield

​A project exploring what makes Sheffield ‘compassionate’ when it comes to end of life care.

Project lead: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Sheffield City Council

Compassionate Communities are networks of support comprising of family, friends, neighbours and community members; they are the foundation of what matters most to those undergoing experiences of death, dying, loss and care giving. A Compassionate City builds on this, covering the civic aspect of our lives; how we can become engaged in compassionate activities in the workplace, churches and temples, our educational institutions etc. Lab4Living are working with the council and organisations across the city to achieve a Compassionate City status in line with the Compassionate City Charter.

Photography in care homes

Project team: Claire Craig

Funded by: Royal College of Occupational Therapists, Higher Education Academy

Globally the population is ageing and the fastest growing demographic are individuals who are aged eighty-five and over (WHO, 2011). Whilst these individuals represent a significant proportion of the older people who currently live in care homes the voices of frail older people are missing from much of the care home literature. In part this is because their complex needs make it difficult for researchers using traditional qualitative methods to elicit their experiences.  

This enquiry sought to redress this balance by exploring the potential of photography as a method in care home research. This is important because if designers are to create environments that support the physical and emotional needs of individuals it is important to understand the life world of older people living in these environments.

This study was undertaken across three care home sites in the North of England. Strand one of the research utilised ethnography to build understanding of the broader cultural and organizational factors associated with photography in the care homes studied. In strand two older people were invited to take photographs of their day-to-day experiences of living in the home. The themes were analysed using an interpretative phenomenological method. The themes identified through this analysis were then embodied in a series of photographs and these formed the basis of a further interview with participants.  

The method was found to have a number of strengths: older people expressed their enjoyment of taking photographs and of sharing and talking about these, the concrete nature of the photographs helped to prompt memory recall and offered a tangible reminder of themes or issues participants wished to discuss. Through this method older people participating in the study described the multiple transitions they faced and the challenges of simultaneously navigating this new environment whilst also making sense of the ‘alien’ body they now inhabited. The life world of the older person was conceptualized as betwixt and between place and space, being in time and out of time, between hope and despair.  

A number of key findings relating to how the design of these environments contributes to quality of life were made. This work has informed a national resource for older people living in care homes. 

Portraits of Care

This transnational enquiry uses the media of illustration, photography and textiles to explore narratives of ageing in the United Kingdom and Australia. Two parallel lines of enquiry have been developed.

Project team: Claire Craig, Helen Fisher, Fanke Peng

Funded by: Research England / Canberra University

One strand explores the use of self-portraiture as a mechanism through which older people can explore and express a view of ageing from the inside. The second strand presents a view of ageing from ‘the outside’, exploring what can be learned of the experience of ageing when drawing is used as phenomenology.  

This study offers an opportunity to interrogate drawing as a method in understanding the 100 year life. 

‘The act of drawing makes you look more carefully; the more closely you look, the more you see, and the more you see, the more you can draw and the more you come to understand’  

Lucy Lyons