to top

Trails – Enabling Ongoingness

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

Me & You

This enquiry explores the role of design in supporting meaningful conversations for older people living in care homes. 

Project team: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Sheffcare

The Department of Health defines a care home as an establishment that, ‘provides accommodation, together with nursing or personal care for [individuals who] are or have been ill, persons who have or who have had a mental disorder, persons who are disabled or infirm’ (Department of Health, 2000, p.3).
 
Older people living in care homes have some of the most complex needs of society (Office of Fair Trading, 2005). Levels of dependency are high. In one national survey undertaken by BUPA and the Centre for the Policy of Ageing (Lievesley, Crosby and Bowman, 2011) 90% of care home residents were identified as having high support needs.

This enquiry explored the role of design in supporting meaningful conversations for older people living in care homes. The outbreak of COVID-19 meant that care homes became closed communities. As a consequence, residents who were frail or facing end of life were unable to tell family members how they felt and to say goodbye. This enforced separation also made it difficult for family members.  

An earlier enquiry, funded by Marie Curie, identified topics that individuals at end of life identified as being meaningful and questions people wished they had asked their relative whilst they were still alive. These topics and questions were translated into the research-informed product: You & Me.  

Current research is evaluating the potential of Me &You to support relationships between older people living in care homes and their family members, offering individuals the opportunity to express what is important. 

This little resource prompts you to record all the things you want to say to your loved one but somehow just never have time to put into words. 

Me & You Participant

Place and Space

The move into a care home has been conceptualised as one of the most difficult transitions in later life. At times this transition can be unplanned, occurring as a consequence of a life-event or crisis and individuals may as a result find themselves suddenly placed in an alien environment in an unfamiliar parts of a city. This can lead to feelings of disconnection and dis-orientation. 

Project team: Claire Craig, Helen Fisher

Funded by: Art and Design Research Centre, Sheffield Hallam University

Partners: Sheffcare

The research enquiry ‘photography in care homes’ (Craig 2014) highlighted the importance of finding ways to support residents to gain a sense of place and space and thereby experience a sense of belonging. This was found to be fundamental to wellbeing. 

The present enquiry responded to the findings of this study and was undertaken in care homes in the North of England. Lab4Living design researcher Helen Fisher worked with residents and staff to develop a series of 3-dimensional interactive maps. Through an iterative ‘research through design’ process, a range of tools for orientation and meaning-making were created. These are currently being trialed across a number of care homes.  

Findings to date suggest that the maps act as mechanisms though which individuals are able to communicate important facets of their life and through this process staff in the homes are able to build significant relationships.  

The resources continue to create a focus for meaningful conversations and a way to discover who people are. 

Activity Co-ordinator

Connecting People, Connecting Support Online

Connecting People, Connecting Support is an online space where people with dementia, family members and care staff can access post-diagnostic materials informed by our research programme Journeying through Dementia.  

Project team: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Alzheimer Scotland, Royal College of Occupational Therapists,
Scottish Dementia Working Group

The web-platform was created in response to the COVID-19 pandemic in 2020, which saw many individuals confined to home and unable to access vital services. The web-site was highly successful in providing a platform through which individuals and their families could access the Journeying through Dementia research and it was found to be a positive way to engage with a wide-number of individuals. Within two months of its launch the materials had been down loaded over 30,000 times, formed the basis of interventions used by the Alzheimer Scotland link workers. The research team was invited to offer a webinar to over 150 Allied Health Professionals about the work (see link) and it was cited in the Guardian as an example of best practice in relation to University responses to the COVID-19 pandemic. 

Our clinical support worker has been using the website to focus welfare phone calls for people living alone at home with dementia. They’ve gained quite a rapport from using the topics as themes for their conversations – great work! 

Allied Health Professional

The Scottish Dementia Working Group undertook an evaluation of the materials and feedback was overwhelmingly positive.  
 
The work had formed the starting point of a broader enquiry, which seeks to build understanding of the design qualities and features that can help people with dementia to meaningfully engage with this technology. The next phase of the work will be to test a series of principles and practices that have been developed in the delivery of a group-work intervention on-line. 

I am amazed at what you have achieved in such a small amount of time. 

Allied Health Professional

Carers don’t have the energy to search for things online so having this all in one place is great… People feel like they’ve won the lottery when they see the website!

Allied Health Professional

Click here for Connecting People Connecting Support Online related news items.