Exploring psychosocial interventions for people with dementia that enhance personhood and relate to legacy- an integrative review

Background: Epidemiological predictions suggest that dementia will continue to rise and that this will have social and economic ramifications. Effective interventions, beyond pharmacological management are needed. Psychosocial interventions have largely been investigated in relation to carers of people with dementia, or with regards to their ability to manage dementia symptoms, improve cognition, and reduce challenging behaviour. However, since dementia is a life-limiting illness and people with dementia are at risk of having their personhood compromised, psychosocial interventions should seek to enhance personhood, and offer the potential for the person to leave a legacy. Methods: An integrative review was carried out to identify, assess, appraise and synthesise studies featuring interventions, which relate to both personhood and legacy. Search strategies were developed in key databases: MEDLINE; PsycINFO; Embase; Joanna Briggs Institute; CINAHL; Cochrane Database of Systematic Reviews; ASSIA. Grey literature was also identified through free-text searches. Results: Thirty six articles were included in the final review, these were tabulated and were assessed based on how the intervention related to personhood and legacy. Classification resulted in three themes being identified: Offering aspects of legacy; Acknowledging the person behind the patient; Facilitating meaningful engagement. Generally, personhood aspects of interventions were well reported, but further research is required to explore legacy potential of psychosocial interventions for people with dementia. Conclusion: The integrative review provides an overview and exploration of an under-researched area, and provides directions for future research, which will help expand the evidence base and ultimately help improve patient care for people with dementia and their families

Supporting stimulation needs in dementia care through wall-sized displays

Beside reminiscing, the increasing cognitive decline in dementia can also be addressed through sensory stimulation allowing the immediate, nonverbal engagement with the world through one’s senses. Much HCI work has prioritized cognitive stimulation for reminiscing or personhood often on small screens, while less research has explored sensory stimulation like the one enabled by large displays. We describe a year-long deployment in a residential care home of a wall-sized display, and explored its domestication through 24 contextual interviews. Findings indicate strong engagement and attachment to the display which has inspired four psychosocial interventions using online generic content. We discuss the value of these findings for personhood through residents’ exercise of choices, the tension between generic/personal content and its public/private use, the importance of participatory research approach to domestication, and the infrastructure-based prototype, illustrated by the DementiaWall and its generative quality

Making Public Media Personal: Nostalgia and Reminiscence in the Office

In this paper we explore the notion of creating personally evocative collections of content from publicly available material. Compared to the personal media that we look at, reminisce over, or personalise our offices with, public media offers the potential for a different type of nostalgia, signifiers of an era such as entertainment, products, or fashions. We focus on an office environment, where the use of filtered public media may mitigate concerns over protecting privacy and disclosing too much of one's identity, while keeping the existing benefits of office personalisation in terms of reminiscence, improving mood, and developing identity. After preliminary explorations of content and form, we developed a two-screen ambient display that cycled through 500 images automatically retrieved based on four simple user questions. We ran a two-week trial of the display with six users. We present qualitative results of the trial from which we see that it is possible to bring the delight associated with personal content into the workplace, while being mindful of issues of appropriateness and privacy. Images of locations from childhood were particularly evocative for all participants, while simple objects such as stickers, music, or boardgames were more varied across participants. We discuss a number of avenues for future work in the workplace and beyond: improving the chance of an evocative moment, capturing the mundane, and the crowdsourcing of nostalgia

Materialising Memories: Design Research to Support Remembering

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‘It Brings it all Back, all those Good Times; it Makes Me Go Close to Tears’. Creating Digital Personalised Stories with People who have Dementia

The purpose of these three case studies was to analyse and theoretically explain the contribution of digital multimedia personalisation to stimulate and share long-term memories of people who live with mild to moderate dementia. We investigated how the use of a freely available iPad app can, in a supporting context, facilitate the creation of personalised multimedia stories, including the participants’ audio recordings, texts and photos of items, places or people important to them. Three people who were recruited from a club for people living with dementia created personalised multimedia stories using their own photographs and/or pictures downloaded from the internet, with written captions and audio-recorded voiceovers. Our analysis focuses on the themes and symbols across the three final stories of the participants and the process of creating stories with the Our Story iPad app. The discussion concerns the theoretical value of multimedia and the practical value of story-making apps for people with dementia. We conclude that the multimedia features available with the Our Story app offer a unique opportunity for people living with dementia to store, access and generate memories, capture them in writing and audio; and the ability to continue adding to the original stories

Enabling self, intimacy and a sense of home in dementia

Design and digital technologies to support a sense of self and human relationships for people living with dementia are both urgently needed. We present an enquiry into design for dementia facilitated by a public art commission for an adult mental health unit in a hospital in the UK. The interactive art piece was informed by the notion of personhood in dementia that foregrounds the person's social being and interpersonal relationships as sites where self is maintained and constructed. How clients, clients' family members and staff used the piece is reported and insights related to the notions of home, intimacy, possessions and self are presented. The art piece served as window on both dementia and the institution leading to a number of insights and implications for design

Crafting Well-being: A Scoping Review of the Benefits of Participation in Fibre Craft Communities and Implications for Activities for Older Adults

The COVID-19 pandemic brought into sharp focus the need for positive mental health and well-being as communities at large, and older adults in particular, struggle to cope with social isolation, loneliness, stress, anxiety, and uncertainty. At the same time, there has been a resurgence of interest in traditional home-based crafts that are both compatible with social distancing requirements, yet fulfill one’s passion for fibre craft. This paper reviews the literature to understand the ways in which participation in fibre craft communities, organized as informal or formal collectives of people, contributed to their well-being. Nineteen articles that met the inclusion criteria were analyzed for this scoping review. The findings show that participants of fibre craft communities perceived overlapping benefits of craft-related activities that corresponded with several aspects of well-being. The paper discusses how knowledge from this scoping review can be used to guide the development of activities for older adults