The project Aging in Place applies a novel approach to investigate how social care services in Sweden are adapted to preferences and needs of older persons (65 years and older) living at home with dementia, including their partners. The project covers the process that starts when a person is granted to receive services, which are communicated to a care provider – who should organize the services – and finally reach the receiving older person. This approach differs from previous research on elder care, which has focused either on the purchaser or the provider side of Swedish municipal elder care in the purchaser-provider model Sweden adopted since the mid-1990s. The project focuses on: 1) what specific social care services older persons living at home with dementia are granted; if a dementia diagnosis is needed for some services; and the differences between municipalities; 2) how care providers organise granted services and adapt them to people living with dementia; including differences between municipalities and care provider units; 3) how care recipients living with dementia (including co-habiting partners) experience and influence the receiving of services. The ambition is to generate both generalisable knowledge about social care services for people living with dementia in Sweden, including differences between municipalities and care providers, and in-depth, exploratory knowledge about how care providers organise services and how these services are received by care recipients. The project encompasses a necessary combination of methods and materials: register studies, web surveys, as well as observations and interviews. The project will provide important, elemental, knowledge on Swedish dementia- and eldercare. This knowledge is needed as a basis for further studies and as a contribution to discussions on how future social care can be developed to ensure people living with dementia, and their partners, equality, participation, and dignity in later life.

Dementia comprises global health issues, affecting families, healthcare systems, and broader society. Emerging technologies offer new tools for care and support that people living with dementia employ to manage their daily lives. We aim at exploring needs and ideas regarding digital technology and how it can be used to increase self-management and participation for people living with dementia. Ten participants took part in this study; five persons diagnosed with dementia and five spouses of people living with dementia. The data obtained in the individual interviews analyzed descriptively, by reviewing the protocols from the interviews. The data from the focus group session were analyzed for themes. All participants lived in ordinary housing but participated in group activities at a dementia center in Sweden. All participants used digital tools and owned and used smartphones and computers which indicates a baseline familiarity with digital tools. In results from the focus groups three themes emerged: (1) Digital tools as multifunctional resources, (2) Resources and barriers for using digital tools, and (3) Accounting for needs and wishes when planning for the future. The participants in both groups described the potential of digital tools to help mitigate future challenges regarding fears and concerns of future endeavors, e.g. as facilitators for staying in touch with family and friends and to be able to listen to familiar music. In conclusion, digital tools may prove vital in managing daily life and staying socially connected. However, digital reliance can also lead to challenges, especially as cognitive abilities decline.

This study shows how concerted bodily movements and particularly intercorporeality play a central role in interaction, particularly in joint activities with people with late-stage dementia. Direct involvement of bodies in care situations makes intercorporeal collaboration the basic form for engaging with people with late-stage dementia. By detailed analysis of a videorecording of a joint activity involving a person with late-stage dementia as an example, we show that the process of concerted bodily movements includes not only an interactive bodywork but also a reconfiguration of the routine activities and actions in situ. Reconfigurations often require, and are the outcome of, particular practices for the systematic modification of the embodied conducts of the participants and their use of artifacts in the surrounding environment. These practices, that we highlight in our study, are (1) staging activities through organization and re-organization of body parts, as well as artifacts (rather than using verbal descriptions of activities); (2) decomposing (parsing) activities into smaller parts possible for the person with dementia to perform (rather than using verbal action descriptions); and (3) providing embodied directions and bodily demonstrations of actions (rather than using verbal directives). As a result, we point to these practices for their reflexive roles in the change of the use of modalities in interaction: from mainly using verbal language to the prominence of visual depiction and bodily demonstration as necessary methods to facilitate the participation of people with latestage dementia in joint activities

This book investigates how people living with late-stage dementia can engage in communication and social interaction. Based on empirical research, it explores the remaining communicative resources of people living with cognitive impairment (e.g., intercorporeal interaction, bodily gestures, gaze), presenting the agency of the person with dementia as an integral part of their relations with others. The book provides a comprehensive theoretical framework for analyzing, describing, and understanding communication in late-stage dementia, and explores the use of video ethnography to record and analyze non-verbal, bodily interaction.

The authors skilfully bring together findings from their examinations of everyday interactions involving individuals living with late-stage dementia in nursing facilities, introducing the readers to the innovative theoretical and methodological approaches that undergird the fine-grained analyses at the heart of the book. The rich and nuanced case studies collected encompass embodied directives, habitual actions and objects, physical settings, assisted eating, and much more. An invaluable resource for graduate students and researchers at all levels in the fields of psychology, psychotherapy, social work, nursing, gerontology, and related disciplines, this volume makes an unparalleled contribution to current dementia research across the social sciences.

Purpose: This study challenges the notion that people living with dementia are unable to achieve novel learning without focussed intervention techniques. The purpose of this study is to explore how a woman living with dementia (Alzheimer’s disease) learns to use a tablet computer with support from communicative partners.

Method: The study is based on video recordings and the theoretical framework of learning as changing participation in joint activities. Quantitative and qualitative focus is on changes in the interactional organization

over the course of six weeks in the activity of using an augmentative and alternative communication application.

Results: Over time, the participant living with dementia, relies less on the expertise and explicit instructions of her communicative partners when navigating the application, and more on the immediate feedback provided by the tablet computer.

Conclusions: The findings suggest that novel learning still is possible for people living with dementia, even without the implementation of focussed interventions. This study further emphasizes the procedural nature of learning for people living with dementia as the woman’s embodied actions were carried out in an increasingly more direct fashion.

This study deals with assessment as an interactional practice in assisted eating activities involving people with late-stage dementia (here Alzheimer’s disease) in an elderly care home. The dataset for the study consists of video recordings of 26 occasions of eating activities. We investigate the use of embodied, vocal and verbal assessments (e.g., headshakes, nods and gustatory ‘mmm’) together with evaluative terms (e.g., ‘good’ or ‘great’) in three consecutive phases in these activities: ‘introducing the mealtime activity’, ‘offering the food’ and ‘receiving the food’. Drawing on multimodal analysis of interaction, we analyze three mealtime events, in which we show how assessments are issued by caregivers more often in interaction with a person with dementia who appears less engaged in the activity compared to a more engaged resident. Moreover, the analysis explicates how assessments fit in with the overall organization of the activity and are issued in a timely fashion when the food is introduced and brought close to the lips of the person with dementia, and when it is accepted. The findings show that assessments are used not only to share an evaluation of e.g., food or the action of the person with dementia, but also to manage the assisted eating activity. Assessments seem to be used distinctively (1) to build joint attention in the eating activity and (2) to encourage the assisted person to submit to/continue the activity of eating.

In this article, we argue that investigating and learning about agentive abilities of people living with late-stage dementia requires a theoretical framework that focuses on the use of bodily resources in interpersonal interaction (i.e., intercorporeality) for performing joint activities rather than on solely the use of spoken language. Assisted eating, which involves people living with late-stage dementia and professional carers, is taken as an empirical example. The study is based on observations and video recordings of occasions of assisted eating involving five people with late-stage dementia in a residential elder care home; one of these people is used as an example in this paper. The analysis shows that assisted eating is performed as a joint intercorporeal activity. The participants create joint attentional space and a common space of action for their bodily movements when they give and receive food. The participants engaged in the activity coordinate their bodily moves with each other. The analysis (1) demonstrates that the collaboration between people living with late-stage dementia and nurses is based on practical interdependent and co-operative bodily actions. (2) This makes it possible to better understand agency in terms of intercorporeal interaction displayed by people living with late-stage dementia. (3) The agency demonstrated in intercorporeal interaction is thus considered to be shared and distributed across bodies and requires support to be interactionally achieved. (4) The intercorporeal interaction as grounds for agency not only calls on other participants to note and honor the agency of the person with dementia that is still evident in embodied interaction, but also invites others to support people with dementia to claim and display their agency in social interactions and joint activities.

Dementia questions many ideas about identity due to the fact that dementia, especially Alzheimer’s disease, affects episodic and autobiographical memory. The individual will “lose” self-knowledge and thus the sense of personal continuity and sameness over time. This led to the notion that persons with dementia could be seen as empty vessels – void of any self or identity. Starting in the 1990s a number of researchers began to argue that persons with dementia still had an identity and sense of self. New ideas of what identity and sense of self might mean both theoretically and empirically in the field of dementia were introduced. In this chapter the focus is on three of the attempts to formulate new theoretical views of dementia and identity: (1) social psychological theories based interactional aspects of identity in dementia (Kitwood, Sabat, Harré); (2) theories about stories and storytelling in dementia as an important way to present and negotiate identity (Marie Mills, Cheston, Hydén and others; and (3) phenomenological theories about embodied self and identity (Kontos and others). The common denominator of these three views on identity and dementia is the notion that persons with dementia are still meaning-constructing persons, even very late in the dementia process. Although persons with dementia will over time become increasingly challenged as conversationalists and storytellers, they are still active meaning-makers. They are obviously still engaged in the never-ending activity of making sense of their social as well as physical world-events and happenings in the world as well as what people are saying and doing.

Dementia is a non-curable disease that progressively affects peoples ability to handle their everyday life. Still, previous Swedish research found that many people living with dementia (PlwD) do not use any eldercare. In this study, we investigated the association between not using eldercare services and key social background factors: years with dementia, hospital care, and country of birth for PlwD. We identified all people aged 65+ diagnosed with dementia between January 2006 and March 2015 (n = 43,372) using secondary data analysis of information taken from multiple Swedish nationwide registers. Results showed that not using eldercare was more common among younger age groups and men. The likelihood of having no eldercare was three times higher for those cohabiting; notably, almost a fifth of the PlwD who had the diagnosis for four years or more did not have eldercare at all. Finally, people born outside Europe used eldercare less than persons born in Sweden. Since the public dementia policy in Sweden is basically geared toward PlwD in a later stage and primarily in residential care, there has been almost no policy development around the needs and rights of PlwD in their homes. This study provides a ground for reconsidering dementia policy regardless of the ethnic and cultural backgrounds of PlwD.