HELIX ArCH poses the question: ‘To what extent do people with dementia living in care homes express their authentic voice and demonstrate their citizenship – and how is their authenticity and citizenship realised - while working with an artist?’

• Project Dates: January 2017 to March 2018
• Project Leader: Professor Julian Hughes
• Staff: Dr Simon Woods and Dr Mabel Lie
• Sponsors: Wellcome Trust
• Partners: HELIX Arts, Earsdon Grange Care Home

To answer the question above, the project aims to:

1.   To understand the extent to which an art intervention enhances or maintains authenticity and citizenship in care homes
2.   To explore the process by which this is achieved – to include an exploration of relationships
3.   To understand how authenticity and citizenship are (or might be) demonstrated in this context
4.   To consider how a particular type of art might encourage and enable residents to realise their authenticity and citizenship
5.   To consider the work’s impact on wider audiences in different contexts onsite and online
6.   To test the feasibility of a broader study of authenticity and citizenship in the context of dementia

The research setting is a private care home in North Tyneside offering personal care, dementia care, respite, day care and end-of-life care.

The research team (Prof Julian Hughes, Dr Simon Woods, and Dr Mabel Lie), is working in collaboration with HELIX Arts (HA) and the care home, Earsdon Grange. HA is an Arts Council England National Portfolio Organisation: Catherine Hearne is CEO and Kate Anderson is Senior Project Manager on Helix ArCH.

Helix has engaged the American visual artist and film-maker, Jordan Baseman, who is now teaching at the Royal College of Art, London and new media curator Dr Dominic Smith who works locally and internationally.

Jordan anticipates making a moving image and/or sound piece featuring interactions with care home residents.  Exhibitions and/or events will be co-curated to show-case the art work in diverse settings and it will also be show-cased online.

The research is an ethnography of the art intervention to provide additional understandings of the terms ‘authenticity’ and ‘citizenship’ and demonstrate how these are created, lived and experienced. 

Through observations and interviews with residents, relatives, friends and staff, the study will report on the participatory process through which the artist works to encourage and enable residents’ voices to be heard.

There have been movements towards empowering people with dementia using a citizenship framework of dementia (Baldwin et al 2008). Our starting point is an attempt at a philosophical understanding of what it is to be a person with dementia, hence ‘authenticity’; but also how this person stands in relation to the rest of society, hence ‘citizenship’. Our focus on authenticity and citizenship in care homes is a way of providing an alternative to the bio-medical focus on deficit and decline. There may be implications for reforms in the care home sector.

The Wellcome Trust is funding the research under their Seed Award scheme in Humanities and Social Science (Ref: 201656/Z/16/Z). 

The study obtained ethical approval from the Social Care Research Ethics Committee on 27 April 2017 (Ref: 17/IEC08/0012).