This work programme concerns Deaf people who use British Sign Language (BSL), who are living with dementia and their families and care partners, many of whom may be Deaf as well.
Background to BSL and Deaf People
BSL is not a visual version of English; it does not follow English word order and has a totally different grammatical structure (Sutton-Spence and Woll, 2000). In 2003, BSL was formally recognised by Government as an indigenous language of the UK and in 2015 the Scottish Parliament passed the BSL (Scotland) Act 2015 conferring legal rights and duties towards BSL users in Scotland. Like any other linguistic community, the Deaf community possesses its own cultural history, traditions, perspectives and preferences associated with a shared identity(ies) (Ladd, 2003). Hence it has become usual to refer to people who use BSL as Deaf, with a capital ‘D’ in the same way as other cultural identities are conventionally marked such as Polish or South Asian. It is also a means of distinguishing culturally Deaf people who use BSL from the much larger populations of ‘deaf’ people who might be spoken language users, lose their hearing as a result of aging or experience what they might term a ‘hearing impairment’ (Young and Hunt, 2011). The Equality Act 2010 and the Public Sector Equality Duty 2011 both identify Deaf people as falling within the definition of groups with ‘protected characteristics’ on grounds of disability but also recognise BSL as a language, independent from English, the use of which can promote equality of access and services.
Fewer than 5% of deaf children have one or more parent who is Deaf (Mitchell and Karchmer, 2004) therefore it is more usual for BSL not to be acquired from within one’s birth family. However the majority of Deaf people choose another Deaf person as their life partner and over 90% of Deaf couples will have hearing children. Deaf culture is rarely passed inter-generationally with many young Deaf people forming their Deaf cultural identity as young people/young adults through peers and Deaf community involvement (Valentine and Skelton, 2007). In previous generations, it was more usual for deaf children to attend specialist deaf schools, often residentially, where sign language and Deaf culture were absorbed at an early age, even in those which were spoken language educational environments.
The Deaf community, however, is a strongly resilient one and often referred to as collective rather than an individualistic culture (Mindess, 2006). This is commonly manifest in individuals’ strong commitments to others in the community, nation-wide and life long bonds of fellowship and support, a sense of obligation to pass on information and create collective actions on behalf of the community as a whole (Ferguson-Coleman et al., 2015 ). Vibrant social and sporting activities that bring Deaf people together from all over the UK on a regular basis and for the older generation the Deaf club is the heart of community and cultural life. Deaf clubs exist in most towns and cities in the UK and some were founded over 100 years ago (Dimmock, 1993, Channel 4, 2000).
Our previous research work on Deaf People with Dementia
Our previous research studies, funded by the Alzheimer’s Society included the first narrative interview study with Deaf people who were living dementia and their families and care partners. We also gathered evidence from the Deaf community as a whole about their views of the best approach to raising awareness of dementia in the Deaf community and their concerns about dementia and services.
This work is described in the following articles:
- Understanding the personhood of Deaf people with dementia: Methodological issues (open access)
- Understanding dementia: effective information access from the Deaf community’s perspective (open access)
- Dementia and the Deaf community: knowledge and service access
From this study we recognised the need for life story tools and supportive interventions that are tailored specifically to Deaf people’s cultural history that makes use of linguistically and culturally accessible media, and which can easily be used by Deaf people with dementia and their care partners. This forms the basis of our current work programme within the neighbourhoods study.
Background to life story project
Although Deaf people living in the UK have experienced the same cultural and historical events as the general population, and have lived in the same geographical territory, the Deaf community’s heritage, and by extension Deaf people’s individuals’ social histories, differ in four distinct ways:
- in common with any minority cultural group, national culturo-historical events will not necessarily have the same significance or be remembered/experienced in the same way from a minority cultural perspective (Deaf people’s memories of the second world war is a good example of this)
- there are historical, social and cultural events that are of unique significance to a minority cultural community because of their particular importance to that community’s social history which may not overlap with those of the majority community (e.g. the history of the British Deaf Association’s annual conferences for the past 125 years and the campaign for recognition of BSL in the 21st century). For example BDA Origins; Accessible communication formats guidance – British Sign Language; British Deaf Association applauds British Sign Language (Scotland) Bill
- cultural history and social identity are shaped, in part, by relationships between the majority/minority or the dominant and the minoritised over time (Davis,1995; Lane, 1984; Padden and Humphries, 1988). For Deaf people, cultural heritage is, therefore, also evidenced by the ways in which the social relationships and political/historical discourse between hearing and Deaf people/society have also shaped Deaf people’s lives;
- within cultural groups, social history charts the changing attitudes of communities to social, moral and political concerns. The ways in which social attitudes change around a particular issue in one community does not necessarily follow the same trajectory in another. The Deaf community’s awareness of and attitudes towards LGBTQ identities is a good example (Luczak, 1993).
The positioning of Deaf lives within alternative and overlapping cultural and social histories in comparison with the hearing majority is of significance when working with Deaf people with dementia. The scant evidence available concerning how Deaf people and their carer partners live with dementia has highlighted first the paucity of cultural referents that are meaningful to Deaf people within social and care interventions. For example, family and carers report the problematic nature of care home settings for Deaf people where attempts to historicise the environment to make it familiar for older people (e.g. pictures of past movie stars, sing-a-longs of the tunes of residents’ youth) are mostly meaningless for Deaf residents (e.g. Parker, Young & Rogers, (2010). The stars known to Deaf older people and their memories of younger times are more likely to consist of the national Deaf social events and rallies of the past, the Deaf sports stars of national Deaf leagues and the old stories in sign language that are key cultural narratives (e.g. for those who shared many years in residential schools together).
Second, interventions and support based on shared cultural memories and common social experiences are not linguistically accessible and often sound-based. It is not just that they are delivered in language that might not be shared by Deaf BSL user (spoken English) it is that they rely on sound – whether that is singing for the brain, or more simply telling tales. For Deaf people with dementia to access a spoken language reminiscence group requires an interpreter which not only introduces an additional feature of cognitive complexity for the participant but also misses the point of shared participation; the interpreter is a social and cultural barrier to participation in a shared group experience where the social togetherness is also assumed to be part other beneficial effect.
Third, there is a grassroots, community participatory solution already beginning to grow. Families of Deaf people with dementia have been using creative means to find alternative ways to link Deaf people with dementia with their linguistic, cultural and social heritage. Our previous work which involved interviewing Deaf people with dementia in their own homes with their care partners (Ferguson-Coleman, Young & Keady, 2014; Young, Ferguson-Coleman & Keady, 2014) revealed a number of ad hoc and informal processes that were in use. For example, creating picture books of photographs, searching the internet for images of Deaf historical events, storytelling between generations and within families about previous shared experiences were all being used as a way of keeping the Deaf person with dementia in touch with their family and cultural identify. The research also revealed frustration about the lack of understanding of usually hearing professional carers about the Deaf person’s cultural identify and social history. The usual lack of a shared language between professional carers and people with dementia did not help as it reduced the means and opportunity for such a shared historical understanding to be built in an informal way. Also there are few resources available to build a means of sharing and referring back to a person’s identity narrative, in the way that is more usual between carers and those who are cared for when a common language is present and shared cultural history can be assumed.
The existence of the BDA heritage archive and our observations in previous research studies about the need for resources to build and develop life story work for Deaf people with dementia combine in this project. The third element is the enthusiastic adoption of new digital technologies by Deaf people because of their inherent functionality for the storage, adaptation and transmission of visual materials and moving images. This makes devices such as tablets when combined with web access ideal for materials that are in a signed language and for communication in that language whether synchronously such as through Skype which accommodates BSL well, or asynchronously such as through postings on Facebook or other blog sites in a signed language, e.g. The Limping Chicken (Valentine & Skelton, 2008; Valentine & Skelton, 2009; www.limpingchicken.com).
Research aims and objectives
(a) To develop a linguistically appropriate and culturally sensitive personalised digitised life story tool for use by and with Deaf sign language users with dementia.
In this phase of the project, we address the preparatory work required to achieve that aim. There are three stages required which correspond with the three research aims below.
- To understand the meanings and cultural production of storytelling amongst Deaf people(s) in order to understand how a life storytelling approach for Deaf people with dementia may be rendered culturally sensitive and appropriate.
- To map cultural specifications and design requirements for Deaf people with dementia who will use a life story application.
- To identify, record and test best practices in communication and interaction with Deaf people with dementia engaged in life story work.
BSL version coming soon
Research aim (i)
To understand the meanings and cultural production of storytelling amongst Deaf people(s) in order to understand how a life storytelling approach for Deaf people with dementia may be rendered culturally sensitive and appropriate.
A conceptual literature review, which addresses:
- the multiple perspectives and uses that Deaf people make of narrative in their everyday lives, and why it is held in such importance for Deaf people in communities around the world;
- how life story work may be similar or different for a cultural community whose language is entirely visual-spatial and whose recognition as a distinct cultural community in the UK has been contested;
- whether and how life story work may play a distinct role for Deaf people with dementia for whom storytelling and narrative is recognised as a cultural norm and strength;
- and whether and how life story work may play a distinct role for Deaf people with dementia for whom storytelling and narrative is recognised as a cultural norm and strength.
This paper has been submitted to Ageing and Society for publication.
Research aim (ii)
To map cultural specifications and design requirements for Deaf people with dementia who will use a life story application.
Stage 1: Brief Authoethnography
The principal researcher on this project, as a Deaf cultural insider who has worked in research with Deaf people with dementia for over 7 years, has considerable tacit, cultural knowhow relevant to how a digital application to support life story work would be best designed in terms of its interface and usability in terms of cultural suitability for visual language users, and in terms of adaptations that support the cognitive vulnerabilities of people with dementia. This has arisen in part from previous attempts to work with others to adapt pre-existing app resources and/or to build one from scratch through which cultural knowledge became explicit.
The researcher will complete a short autoethnographical reflection that highlights specific aspects of design and use of a digital platform for life story work with deaf people with dementia, including deaf carers of others with dementia, based on previous failed experiences of app design. From this, an initial series of design considerations will be drawn out associated both with the app design and non-digital life story applications. The second aspect of the autoethnographic reflection will draw on the researcher’s previous experience of working alongside deaf carers of people with dementia in previous projects and observing the ways in which deaf carers enable interaction, communication and engagement, specifically with respect to a shared topic of interest e.g. when looking at a photograph together; when reminiscing about a previous event; when sharing plans for an activity together and so on. The focus on shared attention and joint response has been chosen as it is an underlying practice in all life story work, whatever tool, stimulus or practice is used. It is an additionally complex area given the visual, four dimensional nature of signed languages.
Stage 2: A meta-synthesis of pre-existing literature on design considerations in Deaf people’s use of digital information and communication technologies will be carried out. Overarching common themes that are necessary for developing applications with Deaf sign language users will be explored and interwoven to build learning about what can be achieved.
Stage 3: Discussion Groups with Deaf Carers of Deaf people living with dementia
In this stage, the summary considerations associated with both app design for life story work with Deaf people with dementia and effective communication and interaction practices in sharing life story work with a Deaf person with dementia are consulted on. New data are also added.
Building on the experts by experience own practices, the groups will then be asked to consider four potential functions of life story work with Deaf people with dementia. Drawing on the meta- review by Gridley et al (2016) these correspond to their identification of underlying theories of change (page 19-20) re-imagined for this population group. They are defined here as: (a) (re)constituting an identity recognition practice including building and reinforcing self-worth; (b) building a resource for ongoing communication (whether intra- familial or between professional carer and person with dementia); (c) facilitating enjoyable sensation; (d) decreasing negative behavioural symptoms/personal distress or (e) supporting the carers themselves. They will explore what each might mean in practice and what their views are of the advantages and limitations of each and what would be required to support these approaches in practice. Within the group discussions, consideration will be given both to life story work practices that use a digital interface e.g. a mobile application and those that do not rely on such technologies and employ different materials.
Stages 2 and 3 will have:
- developed a set of initial guidelines that offer a culturally appropriate model of good practice in communication and interaction with Deaf people living with dementia.
- identified some potential test activities associated with the functions of life story work for people with dementia that are particularly salient with respect to Deaf people e.g. they emphasise more strongly visual aspects of narrative; they might use archive footage drawn from Deaf heritage web sites; they might specifically include signed narrative rather than static photographs.
The exact guidelines for supportive interaction and communication in life story work with Deaf people who sign and the actual activities to be tested are a product of stages 2 and 3 above.
The test parameters for these activities will be:
- Four test activities developed via stages 2 and 3 of the research design.
- Environment: (i) at the person living with dementia’s home; (ii) within a residential care setting.
- People present: (i) the person living with dementia; (ii) a Deaf or hearing primary carer; or (iii) a primary keyworker based within residential care setting.
with a total of 16 participants (8 Deaf people with dementia and 8 carers).
There will be four test activities carried out within two different environments. Eight sets of participants (described henceforth as dyad, as some participants will be the person’s family and some will be primary keyworkers in the person’s care home) will take part in the study and each dyad will be allocated one test activity.