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
- To develop a linguistically appropriate and culturally sensitive personalised digitised life story tool for use by and with Deaf sign language users with dementia.
- To test the acceptability and feasibility of its use by Deaf people with dementia and their carers/family and professionals.
- To explore its utility in different settings from diverse perspectives (both professional and family/care partners).
The research project consists of 2 stages. (i) designing and building the digital platform and ‘app’ that will form the basis of the life story tool; (ii) implementation and field testing including exploration of acceptability, benefits and drawbacks in a range of settings/contexts including the development of specific “use cases” for systematic evaluation within a digital technology environment. Use case is a term used in digital technology developments to imply pre-determined uses of an app that are consistently applied by all participants regardless of context in order both to explore variations in application by person/context as well as to introduce a degree of standardisation for comparative purposes.
Stage 1: Design and Build
The research team will work closely with a software development manager who is situated in the University of Manchester to develop a viewing and sorting app that can be utilised by the person with dementia and their care-giver.
The British Deaf Association Deaf Heritage Project are partners with us in this work and they have kindly provided over 16,000 images and videos ranging from the 1920s to the present day that can be used to develop individual stories. The bespoke life story materials will be available in a digital format using handheld technology (either an iPad or an android tablet).
The app will be designed by the research team and then piloted for usability with five members of the Deaf community who are a) Deaf BSL users and/or b) Deaf BSL users with experience of caring for a Deaf person living with dementia. It is anticipated these people will either form a new PPI group for this project or be existing (or previous) supporters of the previous ‘Deaf with Dementia’ research project Their feedback will allow for modifications to be made to the app before it is used with the specific identified samples in this study. Usability in this instance refers to being able to navigate the app, personalise its content, views of its visual appearance and accessibility for a BSL user, special considerations that may be associated with physical difficulties such as those arising in the hands from arthritis or visually in terms of sight loss, and any other features that the test group regard as relevant from their perspective.
The feedback from each lay person testing out the app with the researcher will be video-recorded so that the research team can track the development of the usability of the app.
Stage 2: implement and field test
We will recruit the families, care partners and/or professional carers of 20 Deaf people who have a diagnosis of dementia and who are BSL users. There may be some Deaf people living with dementia who are fluent BSL users, some may be less fluent or some may use limited BSL due to the nature of their dementia.
As this is an exploratory study that is testing out acceptability and use, and seeking to capture experience and creativity as part of future development, we are seeking a broad and diverse sample of potential participants. Diversity encompasses the kind and stage of dementia experienced, the familial/professional context in which an individual is being cared for, the degree of impairment and disability experienced and the setting(s) in which an individual lives as well as their age, gender and any other features of social and cultural background (e.g. cultural heritages in addition to being Deaf). This diversity is justified because we are seeking to capture the range of potential uses of and responses to the digital life story tool, understanding its strengths and limitations in different contexts/settings and to capture potentially unique and situation-specific personal/familial adaptations to its potential that may be of more generalisable significance.
Although potential participation is defined by association with a Deaf person with dementia, the sample encompasses that individual and their care partners (whether family/informal and/or professional carers). Therefore participants will encompass close family members, care home staff, domiciliary carers, Deaf friends who are in social touch with the Deaf person with dementia. We therefore estimate total participants in the study as a whole to be at least 40 (one Deaf person with dementia and at least one care partner) and potentially up to 100.