How assisted eating becomes a caring practice in institutional settings: Embodied gestures and stages of assisted eating.

Assisted eating is a basic caring practice and the means through which many individuals receive adequate nutrition. Research in this area has noted the challenges of helping others to eat while upholding their independence, though has yet to explicate how this caring practice is achieved in detail and across the lifespan. This paper provides an empirical analysis of assisted eating episodes in two different institutions, detailing the processes through which eating is collaboratively achieved between two persons. Data are video-recorded episodes of infants during preschool lunches and care home meals for adults with dementia, both located in Sweden. Using EMCA's multimodal interaction analysis, three core stages of assisted eating and their underpinning embodied practices were identified: (1) establishing joint attention, (2) offering the food, and (3) transferring food into the mouth. The first stage is particularly crucial in establishing the activity as a collaborative process. The analysis details the interactional practices through which assisted eating becomes a joint accomplishment using a range of multimodal features such as eye gaze, hand gestures, and vocalisations. The paper thus demonstrates how assisted eating becomes a caring practice through the active participation of both caregiver and cared-for person, according to their needs. The analysis has implications not only for professional caring work in institutional settings but also for the detailed analysis of eating as an embodied activity.

Long-term care use among people living with dementia: a retrospective register-based study from Sweden.

BACKGROUND: Although many people with dementia need progressive support during their last years of life little is known to what extent they use formal long-term care (LTC). This study investigates the use of LTC, including residential care and homecare, in the month preceding death, as well as the number of months spent in residential care, among Swedish older decedents with a dementia diagnosis, compared with those without a dementia diagnosis. METHODOLOGY: This retrospective cohort study identified all people who died in November 2019 in Sweden aged 70 years and older (n = 6294). Dementia diagnoses were collected from the National Patient Register (before death) and the National Cause of Death Register (death certificate). The use of LTC was based on the Social Services Register and sociodemographic factors were provided by Statistics Sweden. We performed regression models (multinomial and linear logistic regression models) to examine the association between the utilization of LTC and the independent variables. RESULTS: Not only dementia diagnosis but also time spent with the diagnosis was crucial for the use of LTC in the month preceding death, in particular residential care. Three out of four of the decedents with dementia and one fourth of those without dementia lived in a residential care facility in the month preceding death. People who were diagnosed more recently were more likely to use homecare (e.g., diagnosis for 1 year or less: home care 29%, residential care 56%), while the predicted proportion of using residential care increased substantially for those who had lived longer with a diagnosis (e.g., diagnosis for 7 + years: home care 11%, residential care 85%). On average, people with a dementia diagnosis stayed six months longer in residential care, compared with people without a diagnosis. CONCLUSIONS: People living with dementia use more LTC and spend longer time in residential care than those without dementia. The use of LTC is primarily influenced by the time with a dementia diagnosis. Our study suggests conducting more research to investigate differences between people living with different dementia diagnoses with co-morbidities.

People Living with a Dementia Diagnosis with No Eldercare at all: Who Are They?

Dementia is a non-curable disease that progressively affects people's 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.

Eldercare services for people with and without a dementia diagnosis: an analysis of Swedish registry data.

BACKGROUND: The growing number of people living with dementia (PlwD) implies an increase in the demand for eldercare services in Sweden like in many other countries. Few studies have analyzed the use of eldercare services for PlwD. The aim of the present study is to investigate the association between demographic factors (age, sex, cohabiting status) and the use of municipal eldercare services (including both home care and residential care) for older adults with dementia compared to older adults without dementia in Sweden. METHODS: This study used several nationwide Swedish registers targeting all individuals aged 65 and above living in Sweden in 2014 and still alive 31st of March 2015 (n = 2,004,409). The primary outcomes variables were different types of eldercare service, and all participants were clustered based on age, sex, cohabiting status, and dementia diagnosis. In addition to descriptive statistics, we performed multivariate logistic regression models for binary outcomes and linear regression models for continuous outcomes. RESULTS: Results showed that (1) older age is a significantly strong predictor for the use of eldercare services, although PlwD start using eldercare at an earlier age compared with people without dementia; (2) women tend to receive more eldercare services than men, especially in older age, although men with dementia who live alone are more likely than women living alone to receive eldercare; (3) having a dementia diagnosis is a strong predictor for receiving eldercare. However, it was also found that a substantial proportion of men and women with dementia did not receive any eldercare services. CONCLUSIONS: We found that people with a dementia diagnosis use more as well as start to use eldercare services at an earlier age than people without dementia. However, further research is needed to investigate why a substantial part of people with a dementia diagnosis does not have any eldercare at all and what the policy implications of this might be.

The mini-mental state examination (MMSE) from a language perspective: an analysis of test interaction.

Assessment of language and cognitive abilities are associated with clinical challenges. The aim of the present study was to learn more about the MMSE test process from a language perspective by looking in detail at the interaction between patient and tester. In addition, we aimed to further explore the relationship between linguistic and cognitive difficulties. The study was based on an analysis of 20 MMSE test dyads, 10 persons with aphasia and 10 persons with dementia, in interaction with speech and language pathologists. All conversations were audio and video recorded and transcribed verbatim according to Conversation Analytical principles. The thorough analysis of the interactions highlighted some main findings that affected the communicative project of the test interactions. Finally, the test results were summarized and analyzed. Through the analysis, some particularly challenging aspects emerged; the understanding of the verbal instructions, the handling of the instructions and the evaluation of the answers. The test results demonstrated that there were no significant differences between the two groups of participants' MMSE results. The results in the 'language' category did not seem to capture the language disorders among many of the participants more than the remaining test items. By qualitative analyses of the interactional aspects of test situations, information about both cognitive and linguistic abilities that otherwise would have been overlooked may be revealed.

People diagnosed with dementia in Sweden: What type of home care services and housing are they granted? A cross-sectional study.

AIMS: This study aims to examine what types of home care services and housing are granted to people with a dementia diagnosis and how these types are associated with socio-demographic factors (sex, age, marital status, native or foreign born, and regional area). METHODS: A cross-sectional study of all people diagnosed with dementia in three Swedish counties was conducted from the medical records in 2012. Logistic regression analysis was carried out to investigate associations between home care services and housing and socio-demographic variables. RESULTS: In total, 17,405 people had a dementia diagnosis, and the majority were women, aged 80+ years, and unmarried. Some 72% were living in ordinary housing and 28% lived in special housing. Of those who lived in ordinary housing, 50% did not receive any home care service. Not receiving any type of home care services was less common for older people and was also associated with being married and living in rural municipalities. The most common home care services granted were home help and personal care. Special housing was more common for older people, unmarried persons, and those living in rural municipalities. CONCLUSIONS: Most people with a dementia diagnosis were living in ordinary housing, and, surprisingly, half of those did not receive any type of home care service. This knowledge is essential for making the living conditions and needs of people living with dementia more visible and to provide good home care services for people with dementia and their families.

Prepared for surgery - Communication in nurses' preoperative consultations with patients undergoing surgery for colorectal cancer after a person-centred intervention.

AIMS AND OBJECTIVES: To describe preoperative communication after a person-centred intervention in nurses' consultations with patients undergoing surgery for colorectal cancer. BACKGROUND: Patients all over the world scheduled for surgery are referred to preoperative consultations with healthcare professionals. The goal is to assess the risk of perioperative complications, improving quality of care and enabling patients to be prepared for surgery and recovery. A person-centred intervention was developed, which consisted of an interactive written patient education material and person-centred communication. DESIGN: An explorative quantitative and qualitative study based on 18 audio-taped transcriptions. METHODS: Eighteen patients preoperative nursing consultations at three Swedish hospitals were analysed quantitatively regarding structure: words, time, phases, questions, discursive space, and qualitatively: topics and how the person-centred communication appeared in the consultations. RESULTS: The median time for consultations was 27 min (range 13-64 min). The nurses used two-thirds of the discursive space in the consultations with the patients. The patient education material was used as a support to structure the consultation and discuss sensitive and difficult issues. Seven topics were discussed during the consultation. Two different approaches to communication were identified: Talking with the patient versus Talking to the patient. Talking with the patient (seen as person-centred communication) was defined as: listening to the narrative and confirming each other, raising difficult topics, seeing each other as persons, building on strengths and resources, preparing for surgery and asking open questions. CONCLUSION: Ways of communicating influence how the preoperative consultation develops. Talking with the patient could be seen as person-centred communication in the preoperative care, and when using this approach, the intervention purpose of person-centred communication was met. RELEVANCE TO CLINICAL PRACTICE: Education in person-centred communication is important for nurses to improve their skills in performing preoperative consultations.

Deciding upon Transition to Residential Care for Persons Living with Dementia: why Do Iranian Family Caregivers Living in Sweden Cease Caregiving at Home?

Previous research has shown how filial piety is strong among people of Iranian background and that traditional Iranian culture result in most families' preferring to care for their elderly (and sick) family members at home. While acknowledging this, this article highlights what living in diaspora could mean in terms of cultural adaption and changing family values. By interviewing people with Iranian background living in Sweden (n = 20), whom all have been former primary caregivers to a relative living with dementia, we are able to show how the decision to cease caregiving at home is taken, and what underlying factors form the basis for such decision. Results indicate that although the existence of a Persian profiled dementia care facility is crucial in the making of the decision, it is the feeling of 'sheer exhaustion' that is the main factor for ceasing care at home. And, we argue, the ability to make such a decision based upon 'being too tired' must be understood in relation to transition processes and changes in lifestyle having an affect upon cultural values in relation to filial piety. Because, at the same time the changes on cultural values might not change accordingly among the elderly who are the ones moving into residential care, resulting in them quite often being left out of the actual decision.

Topics and structure in preoperative nursing consultations with patients undergoing colorectal cancer surgery.

BACKGROUND: The preoperative education, which occurs in preoperative patient consultations, is an important part of the surgical nurse's profession. These consultations may be the building blocks of a partnership that facilitates communication between patient and nurse. AIM: The aim of the study was to describe topics and structure and documentation in preoperative nursing consultations with patients undergoing surgery for colorectal cancer. METHOD: The study was based on analysis of consultations between seven patients and nurses at a Swedish university hospital. The preplanned preoperative consultations were audio-recorded and transcribed verbatim. The structure of the consultations was described in terms of phases and the text was analysed according to a manifest content analysis RESULTS: The consultations were structured on an agenda that was used variously and communicating different topics in an equally varied manner. Seven main topics were found: Health status, Preparation before surgery, Discovery, Tumour, Operation, Symptoms and Recovery after surgery. The topic structure disclosed a high number of subtopics. The main topics 'Discovery', 'Tumour' and 'Symptoms' were only raised by patients and occupied only 11% of the discursive space. Documentation was sparse and included mainly task-oriented procedures rather than patients' worries and concerns. CONCLUSION: There was no clear structure regarding preoperative consultation purpose and content. Using closed questions instead of open is a hindrance of developing a dialogue and thus patient participation. Preoperative consultation practice needs to be strengthened to include explicit communication of the consultations' purpose and agenda, with nurses actively discussing and responding to patients' concerns and sensitive issues. The results of the study facilitate the development of methods and structure to support person-centred communication where the patient is given space to get help with the difficult issues he/she may have when undergoing surgery.

Intercorporeal collaboration: Staging, parsing, and embodied directives in dementia care.

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.

Supporting people living with dementia in novel joint activities: Managing tablet computers.

A bourgeoning number of studies have demonstrated that people living with dementia are capable of participating in a wide range of everyday activities when supported by care professionals or family carers. However, little remains known about the situated practices used by carers to support people living with dementia as active co-participants in novel joint activities. Taking the use of tablet computers as an example, this study focuses on the interactional organization of instructions in joint activities involving people living with dementia, who have no previous experiences of touchscreen technologies, and their carers. The study is based on forty-one video recordings of ten dyads, each comprising a person living with dementia and a carer, as they are using tablet computers with applications suited to individual interests. Drawing on multimodal interaction analysis, we show how the carers continually foster the accomplishment of their interlocutors, and rarely take over responsibility for closing an ongoing joint project themselves. Our findings suggest that the carers' instructions, realized as verbal and embodied directives, function as a form of scaffolding practice that facilitates the coordination of visual perception and embodied conduct for the participants living with dementia.

Patterns of long-term care utilization during the last five years of life among Swedish older adults with and without dementia.

AIMS: The aims of this study were to compare the patterns of long-term care (LTC) use (no care, homecare, residential care) among people with and without dementia aged 70+ in Sweden during their last five years of life and its association with sociodemographic factors (age, gender, education, cohabitation status) and time with a dementia diagnosis. METHODS: This retrospective cohort study included all people who died in November 2019 aged 70 years and older (n = 6294) derived from several national registers. A multinomial logistic regression was conducted to identify which sociodemographic factors predicted the patterns of LTC use. RESULTS: Results showed that the time with a dementia diagnosis and cohabitation status were important predictors that influence the patterns of LTC use during the last five years of life. Nearly three-quarters of people living with dementia (PlwD) used residential care during the last five years of life. PlwD were more likely to reside in residential care close to death. Women who lived alone, with or without dementia, used residential care to a higher degree compared to married or cohabiting women. CONCLUSIONS: Among people without a dementia diagnosis, as well as those who were newly diagnosed, it was common to have no LTC at all, or use LTC only for a brief period close to death. During the last five years of life, PlwD and those living alone more often entered LTC early and used residential care for a longer time compared to people without dementia and people living alone, respectively.

Assisted eating in late-stage dementia: Intercorporeal interaction.

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.

A person living with dementia learning to navigate an iPad: a case study.

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.Implications for rehabilitationFor people living with dementia, learning in everyday activities is facilitated by repeated exposure to the activity and the scaffolding practices of a more experienced communicative partner.In instances of novel learning, one should not underestimate the importance of embodied engagement from people living dementia.Care professionals need not to worry about exposing people living with dementia to unfamiliar activities.

Ways of talking about illness and prognosis in palliative cancer care consultations--two interactional frames.

GOALS OF WORK: The purpose of the study was to describe how interaction about changes in illness and prognosis was shaped by participants in outpatient palliative cancer care consultations. PATIENTS AND METHODS: The data collection involved six video-recorded consultations at an outpatient oncology unit at a university hospital in Sweden. The interactions were studied by means of discourse analysis. Inclusion criteria for the patients were gastro-intestinal cancer and receiving palliative care. The sample included three men and three women, aged 54-70, with various metastasised gastro-intestinal tumours. Significant others (SOs) were included where patients brought one to the consultation. Three male consultants aged 55-59 participated. MAIN RESULTS: In palliative care consultations, the person-to-person and the patient-professional conversation frames were found to be in use as patients, SOs and physicians talked about the patients' illness and prognosis. Within the patient-professional frame, three interactional patterns were found: the patient emphasising emotional experiences of illness or well-being and the physicians responding by toning down strategies, patients asking direct questions and getting straight answers and finally interaction marked by cautiousness and avoidances. Within the person-person frame, the interactions were described as: playful talk, collegial talk and existential talk. CONCLUSIONS: When patients shared their personal interpretations of illness and prognosis, their narrative was more enhanced by the person-to-person frame than the patient-professional frame. Finding out if and how patients and SOs want to express their worries and finding a balance between the interactional patterns that occur are ethical challenges which health professionals must face. Since patients and SOs may restrain their emotional experiences, investigating grounded ways of overcoming these difficulties is imperative.

Organizing allergy and being a 'good' parent: parents' narratives about their children's emerging problems.

The article focuses on the early and problem-solving phases of the child's illness trajectory and on how child allergies are constructed and organized by the parents in a moral everyday context. The parents' narratives were reconstructed as narratives, describing the pathways parents take before they decide to seek professional medical aid as well as showing how they construct themselves as responsible parents. Before consulting health professionals the parents have often tried a range of different ways to define, control and manage their children's various problems. Allergy problems were interpreted and responded to differently, depending on the way they emerged in everyday life. Acute reactions quickly led to an illness definition and a diagnosis. Gradual and diffuse problems were not so easily defined. They were at first interpreted and responded to as normal infant problems, but, through the parents' readiness and various situational and temporal clues, they were organized as symptoms of illness. Parents seek medical aid when their own strategies fail or do not fully work, but their decisions are also formed within a pre-problem context of their moral accountability as parents.

Reflections and Comments on Research on Memory and Conversation From an Ethnographic Perspective.

Reflecting on three papers included in this issue, we suggest that research on memory and conversation could benefit by making more use of analyzing real-life situations or close to real-life scenarios, full speech and body interactions, and the interaction with the physical environment. We also suggest that the process of remembering during conversation is investigated on a level of detail and sequence that allow for locating actual functions of different actions. Finally, we suggest that a life-span perspective on transactive memory systems must also model the development, maintenance, breakdown, and reestablishment of such systems.

Spatiotemporal arrangement of objects in activities with people with dementia.

PURPOSE: This study shows how the spatial organization of objects and their use may impact locally produced order of activities and how that can affect the accomplishment of everyday activities by people with dementia. METHODS: The study is based on ethnomethodological conversation analysis of eight and a half hours of video recordings in three different settings. Eighteen sequences of activities identified were multimodally transcribed and analyzed. RESULTS: The availability or non-availability of objects, their arrangements and manipulations play a crucial role in the management of the order of activities and may present both challenges and facilitations for people with dementia. The organizations of objects directly influence the order of the activity, and the objects' potential use may afford actions that deviate from the trajectory and the order of the main activity. CONCLUSIONS: One of the significant uses of objects is how they contribute to the perceptual field where attention is organized for building actions. Participants in activities modify the perceptual field by manipulating objects in the material surrounds in response to the relevancies resulting from the unfolding activities. Therefore, spatial contingency is significant in the accomplishment of activities by people with dementia. As it is not self-evident that verbal instructions may result in the instructed actions accordingly, the rearrangement of objects and making them timely available to people with dementia may increase the possibilities of keeping the order of the activities intact.

Exploration of communicative patterns of consultations in palliative cancer care.

Building on the research conducted on institutional communication, and the analysis of actual communication taking place in clinical settings, this study describes and highlights features of palliative care consultations and focuses on the distribution of discursive space (i.e., share of words, lengths of turns), occurring topics and conversational frames. Six consultations between physicians, patients and significant others were videotaped and all participants took part in audio-taped interviews. The recordings were transcribed and analysed in regard to expectations of, the discursive space of, and topics addressed in the consultations. The distribution of the discursive space was unequal; the physicians had the greatest share of words and length of turns in all six consultations, and they mostly initiated discussion of medical issues connected to examinations and treatment, while only patients initiated the topic of the patient's future. During the consultations, institutional framing tended to dominate over client framing. There was found to be room for further study of the structure and content of palliative care consultations with emphasis on how the voice of the patient can manifest itself within the framework of the medical agenda of the consultation and its significance for palliative cancer team work.

Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions.

BACKGROUND: The key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia. METHODS/DESIGN: Drawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design: 1 Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes. 2 Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS. 3 A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance. 4 A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS. DISCUSSION: To the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions. TRIAL REGISTRATION: The study is registered on the COMET initiative, registered in 2014 at comet-initiative.org .