BackgroundPeople with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals.MethodFocus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports.ResultsOverall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives.ConclusionFurther investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.Electronic supplementary materialThe online version of this article (10.1186/s12877-018-0816-1) contains supplementary material, which is available to authorized users.

BackgroundPeople with dementia describe experiences of loss that threaten their autonomy and ability to contribute to society. They often have difficulties with orientation, loss of roll function, and fear about the future, and need help from others. An increasing body of literature also focuses on how people with dementia search for meaning and maintaining of quality to life, and how they find strategies to live with dementia. A review of the scientific literature on coping and dementia is warranted and can help to advice and inform healthcare personnel and decision makers on how they can support and plan for appropriate healthcare services for people with dementia. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding people with dementia’s experience of coping.MethodsWe conducted a systematic, computerised search of Medline, Embase, Cinahl Complete, PsycINFO and Age Line combining MeSH terms and text words for different types of dementia with different descriptions of experience. Studies comprised 1) a sample of people with dementia, 2) a qualitative interview as a research method and 3) a description of experiences of coping were included. The search resulted in 7129 articles, of which 163 were read in full text, 80 were excluded due to the exclusion criteria or low quality according. The analysis was conducted in line with qualitative content analyses.ResultsThis interpretative qualitative meta-synthesis included 74 articles of good quality encompassing interviews with 955 persons with dementia. The material revealed two main resources of coping: (1) Humour and (2) Practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation A comprehensive understanding of the categories led to the latent theme: Balancing the struggle of living with dementia.ConclusionThis meta-synthesis indicates that people with dementia cope in different ways and using several parallel strategies. This insight is essential in dementia care to facilitate a supportive environment.

BackgroundIdentifying how persons with dementia experience lived space is important for enabling supportive living environments and creating communities that compensate for the fading capabilities of these persons. Several single studies have explored this topic; however, few studies have attempted to explicitly review and synthesize this research literature. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding persons with dementia’s experience of space.MethodsA systematic, computerized search of AgeLine, CINAHL Complete, Embase, Medline and PsycINFO was conducted using a search strategy that combined MeSH terms and text words for different types of dementia with different descriptions of experience. Studies with 1) a sample of persons with dementia, 2) qualitative interviews as a research method and 3) a description of experiences of lived space were included. The search resulted in 1386 articles, of which 136 were identified as eligible and were read and assessed using the CASP criteria. The analysis was inspired by qualitative content analyses.ResultsThis interpretative qualitative meta-synthesis included 45 articles encompassing interviews with 672 persons with dementia. The analysis showed that living in one’s own home and living in long-term care established different settings and posed diverse challenges for the experience of lived space in persons with dementia. The material revealed four main categories that described the experience of lived space: (1) belonging; (2) meaningfulness; (3) safety and security; and (4) autonomy. It showed how persons with dementia experienced a reduction in their lived space due to the progression of dementia. A comprehensive understanding of the categories led to the latent theme: “Living with dementia is like living in a space where the walls keep closing in”.ConclusionThis meta-synthesis reveals a process whereby lived space gradually becomes smaller for persons with dementia. This underscores the importance of being aware of the experiences of persons with dementia and the spatial dimensions of their life-world. To sustain person-centred care and support the preservation of continuity and identity, one must acknowledge not only the physical and social environment but also space as an existential experience for persons with dementia.

BackgroundStroke is a major public health threat globally. Psychosocial well-being may be affected following stroke. Depressive symptoms, anxiety, general psychological distress and social isolation are prevalent. Approximately one third report depressive symptoms and 20% report anxiety during the first months or years after the stroke. Psychosocial difficulties may impact significantly on long-term functioning and quality of life, reduce the effects of rehabilitation services and lead to higher mortality rates. The aim of the study is to evaluate the effect of a previously developed and feasibility tested dialogue-based psychosocial intervention aimed at promoting psychosocial well-being and coping following stroke among stroke survivors with and without aphasia.MethodsThe study will be conducted as a multicenter, randomized, single blind controlled trial with one intervention and one control arm. It will include a total of 330 stroke survivors randomly allocated into either an intervention group (dialogue-based intervention to promote psychosocial well-being) or a control group (usual care). Participants in the intervention group will receive eight individual sessions of supported dialogues in their homes during the first six months following an acute stroke. The primary outcome measure will be psychosocial well-being measured by the General Health Questionnaire (GHQ). Secondary outcome measures will be quality of life (SAQoL), sense of coherence (SOC), and depression (Yale). Process evaluation will be conducted in a longitudinal mixed methods study by individual qualitative interviews with 15–20 participants in the intervention and control groups, focus group interviews with the intervention personnel and data collectors, and a comprehensive analysis of implementation fidelity.DiscussionThe intervention described in this study protocol is based on thorough development and feasibility work, guided by the UK medical research council framework for developing and testing complex interventions. It combines classical effectiveness evaluation with a thorough process evaluation. The results from this study may inform the development of further trials aimed at promoting psychosocial well-being following stroke as well as inform the psychosocial follow up of stroke patients living at home.Trial registrationNCT02338869; registered 10/04/2014 (On-going trial).

BackgroundDay care services provide meaningful activities and coping experiences in a safe environment for people with dementia, as well as improve quality of life. Such services vary in types and settings. Farm-based day care (FDC) services are described as services that have been adapted from the farm setting, using farm resources to promote health. There is limited knowledge on the service offered in both FDC and regular day care services for people with dementia. The present study aims to investigate FDC in Norway and describe the services and the participants’ care environment.Materials and methodsWe mapped the existing farms offering day care in Norway by the spring 2017 (N=33) and collected information through two cross-sectional surveys (N=32) answered by the service providers at the farms.ResultsThe farms included in this survey provided day care services to 227 people with dementia, located in most regions of Norway. The services varied in terms of group size and half of the services had young people with dementia (≤65 years) and people with dementia at an early stage as their primary target group. About half of the staff had health care education (47.5%), and there were staff with agricultural competence available in most FDCs. All farms reported that the participants spent time outdoors every day, and all services, except two, had animals. The providers highlighted the opportunity to choose activities that were individually tailored for each participant, as the diversity of resources in the farm made it possible to organize different activities.ConclusionFDC services have similarities in organization, daily structure, and number of health education personnel to other day care services, but differ in type of care environment with a wide range of activities and available resources like farm buildings, gardens, animals, and outdoor areas.

Background: Dementia influences a person's experience of social relationships, as described in several studies. In this systematic meta-synthesis of qualitative studies, we aim to interpret and synthesize the experiences of persons with dementias and their relations with others. Summary: Living with dementia changes life, leading to new social roles and different social statuses. Persons with dementia experience being disconnected and dependent on others, feeling like being a burden, and being a person who is treated in paternalistic ways. Family, friends and others with dementia might play significant roles in their ability to maintain a meaningful life. Key Messages: Three categories emerged from the data, change in life, change in relations, and maintenance of meaningful aspects in life; these categories are intertwined and essential in sustaining a lifeline for persons with dementia. The comprehensive meaning of the material is understood as the expression: Living a meaningful life in relational changes.

BackgroundAs part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers.MethodsEach ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4–7 experts (total N = 38). The interview guide addressed the topics “Complexity and Continuity of Care”, “Formal Services”, and “Public Awareness”. Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries.ResultsThe analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness.ConclusionsPolicy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2456-0) contains supplementary material, which is available to authorized users.

<b><i>Introduction:</i></b> For people with dementia, lived time is important to understand, as the condition affects memory, perceptions of time, and life expectancy. The aim of this study was to locate, interpret, and synthesize the experience of lived time for people with dementia. <b><i>Method:</i></b> This article presents a qualitative systematic meta-synthesis. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Programme criteria for qualitative studies were used to appraise the studies. Sixty-one qualitative research studies based on interviews with people with dementia were included in the review. The analysis followed the principles of interpretive synthesis. <b><i>Results:</i></b> Four categories were revealed: (1) rooted in the past – “I am the same as before”; (2) focussing on the present – “Nobody has tomorrow”; (3) thinking about the future – “What is going to happen to me?”; and (4) changes in the experience of self over time – “I used to….” The latent overall meaning was expressed as “being engaged with the dimensions of time.” <b><i>Discussion/Conclusion:</i></b> The experience of lived time is an active and important one, enabling people to manage the dementia journey. Future work involving people with dementia should foreground the experience of lived time.