Stories from SENSE-GARDEN: A transactional perspective on the use of individualized technology for co-constructing narrative identity in dementia care

Abstract

Norsk sammendrag Fortellinger fra SENSE-GARDEN: Et transaksjonelt perspektiv på hvordan individuelt tilpasset teknologi kan støtte identitetsivaretakelse hos personer med demens Demens er et samlebegrep som beskriver kroniske sykdommer som rammer hjernen og fører til endringer i språk, hukommelse og væremåte. Personer med demens kan oppleve å gradvis miste seg selv når sykdommen utvikler seg, og derfor kan meningsfulle aktiviteter, som for eksempel mimring, være med å synliggjøre identitet og relasjoner, som kanskje er spesielt viktig for de som bor på sykehjem. Det kan være vanskelig for helsepersonell å integrere nye aktiviteter i en arbeidshverdag som preges av høyt tempo, slik det ofte er på sykehjem, og teknologi som kan støtte integrering av meningsfulle aktiviteter i hverdagen har derfor fått økt interesse de senere år. Doktorgradsarbeidet har hatt fokus på en ny teknologisk løsning, kalt SENSE-GARDEN, som benytter digitale media (for eksempel musikk, filmer og bilder) og multisensorisk stimuli (for eksempel dufter) for å skape gode opplevelser for å fremme livshistorien og interessene til personer med moderat til alvorlig demens. Målsettingen med prosjektet har vært å bruke en teoretisk modell for å forklare hvordan SENSE-GARDEN kan fasilitere og støtte identitet og relasjoner mellom personer med demens som bor på sykehjem og deres pårørende. Arbeidet inkluderer en systematisk litteraturgjennomgang og tre kvalitative studier som intervjuet 1) potensielle brukere av SENSE-GARDEN, 2) personer med demens, familie, venner, og ansatte om deres erfaringer etter 12-16 uker der de benyttet SENSE-GARDEN, og 3) ansatte om bruk av SENSE-GARDEN i arbeid med demente. Resultatene viser at teknologi kan benyttes for å fasilitere meningsfulle aktiviteter i demensomsorgen. Deltakernes erfaringer med SENSE-GARDEN viser hvordan identitet kan skapes gjennom holdninger, meningsfulle opplevelser, og gjennom teknologi som skaper nye muligheter for å engasjere seg i livshistorien til den enkelte. Det er behov for videre arbeid med å implementere ny teknologi i praksisfeltet. Tidsbruk, kostnader og opplæring er faktorer som er viktig å vurdere. Samtidig vil bruken av teoretisk kunnskap være nyttig for å forstå hvordan teknologi oppleves og mottas av de som skal benytte dette.

Abstract Common misconceptions and stereotypes surrounding dementia tend to reduce the disease down to an experience of deterioration and loss, particularly with regards to identity. However, people with dementia can still retain a sense of identity, even in later stages of the disease. There is a wealth of evidence on the importance of providing meaningful activities for people living with dementia in order to promote identity and interpersonal relationships, especially for those living in care homes. Emerging work on technological solutions suggests that technology can support the facilitation and individualization of such activities. The topic of this thesis is the use of technology in preserving narrative identity and promoting interpersonal relationships for people with dementia. In particular, the thesis explores the use of a new technological solution, SENSE-GARDEN, which combines immersive technologies and multisensory stimuli to create individualized environments for people with moderate to severe dementia. Taking a transactional perspective informed by Deweyan philosophy and symbolic interactionism, a holistic approach is adopted in understanding experiences within SENSE-GARDEN. This thesis includes one systematic literature review and three in-depth qualitative studies which explored various user groups’ perspectives, experiences of people with dementia and caregivers, and care professionals’ experiences, respectively. The specific aims of the thesis were as follows: 1) To review research on existing digital technologies used in creating individualized activities for people with dementia 2) To explore user attitudes towards the SENSE-GARDEN concept 3) To develop a transactional model of how narrative identity and relationships are shaped through the use of SENSE-GARDEN by drawing upon user experiences from people with dementia, informal caregivers, and formal caregivers 4) To explore care professionals’ experiences of using SENSE-GARDEN The systematic literature review identified 29 studies that used technology to create individualized, meaningful activities for people with dementia. The technologies were grouped into four main categories of purpose: reminiscence/memory support, behaviour management, stimulating engagement, and conversation/communication support. Overall, the evidence suggests that there are promising effects of these technologies on the well being of people with dementia in terms of improving behaviour and promoting relationships with others. However, the review highlighted the specific need for further research on how these technologies can be integrated into care home environments. User responses towards the SENSE-GARDEN concept, reported in Paper II, were overall positive. Thematic analysis of interviews with 52 users (including people with mild cognitive impairment, informal caregivers, and formal caregivers) resulted in six themes: benefits for all, focus on the individual, past and present, emotional stimulation, shared experiences, and challenges to consider. An initial model of the transactional relationship that takes place within SENSE-GARDEN was created based on the users’ comments on providing meaningful experiences through individualization and shared “emotional” environments. A study on the experiences of people with dementia and their caregivers within SENSEGARDEN, reported in Paper III, resulted in three themes: openness, learning, and connecting. The detailed accounts provided by participants gave insight into how technology facilitates meaningful activities within SENSE-GARDEN. One key point is that whilst the technology is important for projecting the life story to participants in an innovative way, it is ultimately the relationships and interactions between people inside the space that creates a meaningful experience. Additionally, through a theoretical approach, a transactional model of how the narrative identity and relationships of people with dementia are shaped through the use of SENSE-GARDEN was created. The model acknowledges the multitudinous factors and processes that take place to form an overall experience in which the person with dementia may feel understood and connected. Finally, a study of professional perspectives on SENSE-GARDEN, reported in Paper IV, found that care professionals had overall positive experiences of using the SENSEGARDEN in care. Three themes were generated in an interview with 8 care professionals: shifting focus onto personalized care, building and fostering relationships, and continuous discoveries. Care professionals across four countries highlighted the value of being able to deliver personalized care and having the opportunity to better know people with dementia. Furthermore, the care professionals felt that the SENSE-GARDEN provided them with a sense of achievement in helping people with dementia. However, the professionals found the preparation and facilitation of the intervention to be time-consuming and emphasized the need to improve the technology if SENSE-GARDEN is to be used on a long-term basis. Overall, this thesis provides argument for the integration of meaningful activities in dementia care, and sheds light on how technology may be able to facilitate such activities. Considering narrative identity in particular, the thesis demonstrates that the use of individualized technology can be a means of creating opportunities to portray the life story and interests of people with dementia in new ways. This can prompt a shift away from the limitations that dementia presents and instead onto the person as an individual, resulting in enriched, reciprocal interactions that teach the caregiver more about the person, and thus, promote a sense of narrative identity within the person with dementia. However, future work should focus on further evaluating time consumption, costs, and training requirements in order for technological solutions, such as SENSE-GARDEN, to be efficiently integrated into care homes. As seen in the literature review, there is still the need to consider how technological solutions can be implemented into care practice. The work in this thesis suggests that if staff invest time and effort into new solutions, it can result in meaningful moments for both care professionals and people with dementia. This is particularly important for people with moderate to severe dementia, where communication may be hindered and opportunities for meaningful activity may be harder to come by. Care facilities may benefit from having a dedicated space in which people with dementia can express themselves through the help of technology, and – most importantly – through the help of others.