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Die Bewältigung von Notfällen erfordert von pflegerischem und medizinischem Personal neben einer hohen fachlichen Expertise eine gute interprofessionelle Zusammenarbeit. Beides kann in regelmäßigen Fortbildungen geübt werden. In diesem Artikel wird ein arbeitsplatzbasiertes, interprofessionelles Fortbildungskonzept auf der internistischen Intensivstation der Universitätsklinik Tübingen vorgestellt und von Faktoren berichtet, die zur erfolgreichen Implementierung führten.

User-oriented needs assessment of the potential use of assistive robots in direct nursing care: A mixed methods study

Zusammenfassung. Hintergrund: In der Pflege sind bislang kaum Roboter verbreitet, die patientennahe Tätigkeiten übernehmen und dabei die körperliche Belastung der Pflegenden reduzieren. Unter Nutzung von User-Centered Designansätzen wurde daher im interdisziplinären Projekt „PfleKoRo“ ein robotisches Assistenzsystem entwickelt, das in der direkten Pflege von bettlägerigen Schwer- und Schwerstpflegebedürftigen eingesetzt werden kann. Ziel: Ziel dieser Studie war die Ermittlung von pflegerischen Tätigkeiten mit dem größten Unterstützungspotenzial für einen Assistenzroboter zur direkten Pflege von bettlägerigen Pflegebedürftigen. Methode: In einem explorativen Mixed-Methods-Design wurden Fokusgruppen ( n = 3) mit Pflegefachpersonen ( n = 14) aus Akut- und Langzeitpflege durchgeführt und inhaltsanalytisch ausgewertet. Eine Auswahl pflegerischer Tätigkeiten wurde anschließend von Teilnehmenden der Fokusgruppen ( n = 10) hinsichtlich ihres Unterstützungspotenzials durch einen Assistenzroboter in einer standardisierten Befragung priorisiert. Ergebnisse: Mit der höchsten Priorität bewertet wurden das Drehen und Halten von Pflegebedürftigen in Seitenlage sowie das Halten des Beines für pflegerische Maßnahmen. Weiterer Unterstützungsbedarf zeichnete sich u.a. für die Repositionierung der Pflegebedürftigen zum Kopfende des Bettes und Transfertätigkeiten ab. Schlussfolgerung: Das Drehen und Halten in Seitenlage sowie das Halten des Beines bieten als Zieltätigkeiten mit dem größten Unterstützungspotenzial für „PfleKoRo“ den Ausgangspunkt für die weitere Entwicklung.

Fear of falling (FoF) affects a large number of older people, whether they have a history of falls or not. This has an impact on their lives. FoF is a potentially modifiable factor, which has been identified as one of the most important threats to older people's autonomy.To gain a comprehensive understanding of the phenomenon, we conducted a systematic review and meta-summary. The available evidence from qualitative research exploring how people experience FoF and how FoF affects daily living was aggregated.We followed the approach by Sandelowski and Barroso (2007) as a method to aggregate knowledge based on an exhaustive literature search. We searched the databases CINAHL, MEDLINE, PsycINFO and SSCI systematically for relevant articles as well as grey literature until September 2020. Out of the included studies, findings were extracted, edited, grouped and abstracted into meta-findings. Finally, the manifest frequency effect size of each abstracted meta-finding was calculated.Out of 2978 identified studies, 15 met our inclusion criteria, which were published between 1993 and 2017 and included a total of 276 participants. We extracted 578 findings, and the abstraction process resulted in 183 meta-findings. We identified three main topics: 'Triggers and reasons for FoF identified by affected people', 'Consequences attributed to FoF' and 'Strategies to manage FoF in daily life'.Our findings demonstrate that FoF has a far-reaching impact on the lives of those affected. With the aggregation of the existing qualitative data with the application of the frequency effect size, we were able to identify three areas of particular importance to those affected: (1) controlling the risk, (2) creating a safe environment and (3) staying independent. Implications for practice these three areas of particular importance to those affected should be taken into account when revisiting or creating new interventions to prevent or reduce FoF.

As robotics in nursing care is still in an early explorative research phase, it is not clear which changes robotic systems will ultimately bring about in the long term. According to the approach of "Responsible Research and Innovation", the research project "PfleKoRo" aims to anticipate and mitigate ethical risks that might be expected when starting to develop a robot. The robot under investigation is intended to be a hands-on support in nursing care in due course. Therefore, the question is which ethical risks and requirements must be considered when developing the robot.Guided by the British Standard for the design of robotic systems, ethical risks related to the robot's use were identified at the outset (Step 1). This was followed by the definition of the requirements needed to mitigate ethical risks (Step 2). Professional nurses, patients and relatives were involved in focus groups and interviews in Step 1. The transcribed interviews and focus groups were then analysed using content analysis. The available literature and expert guidance were taken into account in both steps. Finally, validation and verification methods were defined (Step 3).Sixteen professional nurses participated in three focus groups. Individual interviews were held with a total of eight patients and relatives. Ethical risks and requirements could be defined in the context of dignity, autonomy, privacy, human relationships and safety in the project. Professional nurses feared most issues relating to safety and that the robot would lead to more workload instead of relief, whereas patients and relatives frequently raised the issue of the staffing ratio. Despite the focus on possible negative consequences, participants also made uncritical or optimistic comments regarding the robot's use in the future.Focus groups, individual interviews and existing literature revealed to some extent different ethical issues. Along with identified risks, the results suggest a general open-mindedness of nurses, patients and relatives towards the introduced robot. When investigating the ethical implications of robots for nursing care, one should include multiple perspectives and, in particular, potentially affected individuals.

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services. Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use. Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes. Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Objectives: Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change. Methods: We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM). Results: RQ in the group of carers declined over 1year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers’ RQ, whereas social support was associated with more positive RQ trajectories. Conclusion: This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ. Fundação para a Ciência e Tecnologia - FCT info:eu-repo/semantics/publishedVersion

ObjectivesTo examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia.MethodsWe included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates.ResultsUnmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p < 0.001), 0.76 (p < 0.001) and 0.78 (p = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p = 0.007) and at six months follow-up (mean 0.31 points, p = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 (p = 0.033), 0.67 (p < 0.001) and 0.91 (p < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p = 0.005) and at six months (mean 0.35 points, p = 0.002) follow-up.ConclusionInterventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

Aims The purpose of this systematic review and meta-summary was the aggregation of the empirical qualitative literature on patients' experiences of delirium in order to support the development and implementation of patient-oriented delirium management and to guide future research. Design We conducted a systematic literature review of qualitative research published between January 1980 and June 2019. Data sources In June 2019, we searched in Medline, CINAHL, SSCI and PsycInfo to identify relevant reports. In addition, we conducted searches in three dissertation databases (BASE, DART and ProQuest) and Google Scholar. Review methods We used methods developed by Sandelowski and Barroso to construct a meta-summary of the findings by extracting them from the reports, abstracting them into meta- findings and calculating their manifest interstudy frequency effect sizes. Results Out of the 742 identified records, 24 reports based on delirium experience accounts of 483 patients met our criteria and were included. One thousand ninety-seven findings were extracted from these reports and abstracted into 92 meta-findings. These were grouped to the five emerging themes 'perception', 'emotions', 'interaction with others', 'dealing with delirium' and 'influence on further life'. Conclusion Delirium is commonly perceived as an overall distressing condition, which can accompany and influence patients even after hospital discharge. Impact This systematic review and meta-summary is the most comprehensive aggregation of qualitative research of the patient delirium experience to date. It allows us to better understand, extract meaning from, and weigh the qualitative findings in their context by calculating their manifest frequency effect sizes. This can be used to support the development and implementation of delirium management concepts.

Focus groups are used in qualitative research and increasingly so in the health and nursing sciences. There has been no previous research on how focus groups are used and reported in this context. A scoping review was conducted to address this question.The databases MEDLINE via PubMed, CINAHL, and SSCI were searched for nursing and health science publications (2009-2019) that reported focus groups as a method. Due to the high number of hits, a one percent random sample was drawn per database. Two individuals checked the inclusion and exclusion criteria. Data extraction was performed using a literature-based matrix developed and discussed with experts. Results were content-analysed and quantified.The random sample was n=408 publications, of which n=319 were included after reviewing the inclusion and exclusion criteria. The use of semi-structured interview guides was reported most frequently (43.9 %) (more often referred to as focus group interviews in the publications); open discussions (11 %) and discussions without any guiding questions (6.3 %) were reported less frequently (more often referred to as focus group discussions in the publications). In none of the publications was the aspect of group interaction included into the analysis. Although the reporting is based on international standards, some specific methodological aspects were often inadequately reported or not reported at all: in 92 % of the publications there is no information about the interaction of the participants, and in 72 % the role of the moderating person was not described in detail.Semi-structured forms of focus groups predominate but open forms with only one introductory question are also used. It would have been expected that the interaction among the participants and group dynamic processes would have been considered in the more open approaches. Method-specific reporting items for focus groups have yet to be developed. This could contribute to an improvement of the reporting and critical reflection of, in particular, method-specific aspects. There is evidence that different nomenclature is used in the international literature, depending on the type of focus group. Researchers should choose the nomenclature carefully and describe the procedure precisely.The scoping review provides first insights into how focus groups are conducted and reported in health and nursing science research. The potential of the method could be more fully exploited regarding the analysis of group interaction. Future methodological work dealing with the focus group method should promote the establishment of an internationally consented nomenclature and the development of criteria for transparent reporting for different types of focus groups.

Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

BACKGROUND: The capability concept became a recognized approach to the measurement of quality of life. The ICECAP-O for older people aims to measure capabilities and has recently been used in people with dementia (self-rating) and informal carers (substituted judgement). However, linguistic validation studies have so far been lacking.METHODS: A cross-sectional cognitive interview study with 15 people with dementia (PwD) and 23 informal carers (ICs) was conducted in Germany and Portugal. Respondents were asked to reveal their understanding of the ICECAP-O and the capability approach as well as the response process. A summarising content analysis was performed.RESULTS: Despite the small sample, our linguistic validation of the German and Portuguese translations detected considerable difficulties or deviations in item comprehension when compared with the intended meaning. In some cases, the item interpretations did not reflect the entire scope of the associated capability dimension, though they were basically correct. Moreover, participants were not able to differentiate some items appropriately from one another, and some misinterpretations occurred. ICs relied mainly on observable behaviour, emotions, or verbal expressions of the PwD. Therefore, ICs found items that ask about the achievement of individual expectations or thoughts about the future difficult to assess. Only very few PwD clearly indicated that they understood the capability approach. ICs in Germany had more difficulties understanding the capability concept than in ICs Portugal.DISCUSSION: This linguistic validation study in Germany and Portugal indicates a need for some rephrasing and refinements of the ICECAP-O translated items in both countries to fully encompass some dimensions and avoid misinterpretations. Further studies with larger samples are necessary. Based on our findings, the current German version for ICs' substituted judgement cannot be recommended for this kind of respondents without further advancements.

Objectives: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. Method: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. Results: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access . Coordination and flexibility in setting and type of services were among the Recommendations to enhance use . Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. Conclusion: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers.

Objective Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives. Methods Cross‐sectional data were used from the Actifcare cohort study of 451 community‐dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC). Results Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress, and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia, and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and discrepancies was carer stress (negative feelings subscore). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two. Conclusions In this European sample, carer SOC was associated with carer‐reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes.

Der „Balance-of-Care“-Ansatz ist ein strategisches Instrument zur Ressourcenplanung, mit dessen Hilfe die Angemessenheit von Versorgungsarrangements und deren Kostenimplikationen erforscht werden konnen. Wir beschreiben eine Balance-of-Care-Anwendung bei Menschen mit Demenz in Deutschland am Ubergang zwischen hauslicher und stationarer Versorgung. In einem sequenziellen „mixed methods design“ wurden auf strukturierte Weise empirische Daten, die Einschatzung professioneller Akteure im Gesundheitswesen (Panels) und Kostenschatzungen verknupft. Daten wurden im Rahmen des Projektes RightTimePlaceCare an 235 Menschen mit Demenz und ihren pflegenden Angehorigen in 2 Pflegesettings, Hauslichkeit und Pflegeheim, erhoben. Basierend auf 5 Schlusselvariablen wurden Typisierungen von Menschen mit Demenz mit vergleichbaren Bedarfen entwickelt. In den Panels wurde 4 Typisierungen identifiziert, die Personen reprasentieren, die gegenwartig im Pflegeheim leben, und die ein Potenzial fur eine Betreuung in der Hauslichkeit oder betreutes Wohnen haben. Fur diese 4 Typisierungen wurden exemplarische hausliche Versorgungsarrangements ausgearbeitet, mit Kostenschatzungen belegt und mit den Kosten einer stationaren Versorgung verglichen. Fur spezifische Gruppen von Menschen mit Demenz in Deutschland, die in der Realitat stationar versorgt werden, konnte es Moglichkeiten fur eine Betreuung in der Hauslichkeit geben. Trotz Limitierungen belegt diese Studie erstmals fur Deutschland das Potenzial des Balance-of-Care-Ansatzes, fur Menschen mit Demenz strukturierte Empfehlungen zur Versorgungsplanung zu generieren.

Background Hospitalisation is a critical moment for people with dementia and a major challenge for health care systems. The aims of this study were 1) to describe the frequency of hospital transfer among people with dementia from eight European countries, 2) to examine the factors associated with hospital transfer and 3) to evaluate the costs related with it. Methods The present study is a secondary data analysis of the RightTimePlaceCare European project. A cross-sectional survey was carried out with data collected from people with dementia who lived either at home or had been admitted to a nursing home in the last three months, as well as from their caregivers. Data on hospital transfers at three months were gathered with the "The Resource Utilization in Dementia" instrument. Demographic data, functional, cognitive and neuropsychiatric symptoms, comorbidity, polypharmacy, caregiver burden, nutritional status and falls were evaluated with validated tools. Multivariate regression models were used to investigate the factors associated with hospital transfers. Costs were estimated by multiplying quantities of resources used with the unit cost of each resource and inflated to the year 2018. Results The study sample comprised 1,700 people with dementia and their informal caregivers. Within three months, 16.7% experienced ≥ 1 hospital transfers. Multivariate logistic regression model showed a higher probability of hospital transfers among people with dementia with unintentional weight loss, polypharmacy, falls and those living in the community. The estimated costs per person with dementia/year among the participants living in a nursing home were 980.56 euros and 2,535.39 euros among those receiving home care. Conclusion Transfer to hospital is frequent among people with dementia, especially among those living in the community. These events are associated with the onset of geriatric syndromes such as involuntary weight loss, accidental falls and polypharmacy, and impose a remarkable economic burden. These results suggest that there is a need to develop and implement cost-effective supportive interventions that focus on the identification of people with dementia at risk of hospital transfer, the assessment and management of these geriatric syndromes and the promotion of individualised care planning for them, in order to prevent unnecessary hospital transfers.

Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers’ negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers’ negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care.

Zusammenfassung Hintergrund Formelle Hilfen werden in der Pflege und Versorgung von Menschen mit Demenz seltener in Anspruch genommen als in der hauslichen Pflege von Menschen ohne Demenz. Das Projekt Actifcare mit acht europaischen Landern fokussierte auf die Phase der Demenz, in der neben den informellen Hilfen zusatzliche formelle Unterstutzungsangebote wichtig werden, um die hausliche Versorgung zu gewahrleisten. Eine Mixed-Method-Studie uber 12 Monate diente dem vertieften Verstandnis des Bedarfs und der Einflussfaktoren der Inanspruchnahme informeller und formeller Unterstutzung in der hauslichen Pflege. Der Beitrag berichtet uber die deutsche Teilstichprobe. Methoden Zwischen Januar 2015 und Juli 2016 wurden Menschen mit Demenz und ihre Angehorigen aus den Bundeslandern Nordrhein-Westfalen, Sachsen-Anhalt und Sachsen drei Mal anhand eines Sets validierter Fragebogen befragt. Im Rahmen der letzten Befragung wurden zusatzliche leitfadengestutzte teilstrukturierte Interviews mit einer Subgruppe von Angehorigen gefuhrt. Die standardisierten Fragebogen wurden deskriptiv und die teilstrukturierten Interviews mittels qualitativer Inhaltsanalyse ausgewertet. Die Ergebnisse wurden wie die Datenerhebungen trianguliert. Ergebnisse Insgesamt wurden 52 Menschen mit Demenz und je ein/e Angehorige/r standardisiert befragt; zwolf Angehorige wurden zusatzlich qualitativ befragt. Zum Zeitpunkt der ersten Befragung (T0) pflegten 28 von 51 Angehorigen ohne weitere informelle Hilfe (T2: 22 von 41). Zum personlichen sozialen Netz gehoren in etwa der Halfte der Falle drei bis vier Familienangehorige, die im Bedarfsfall um Hilfe gebeten werden konnen. Im Durchschnitt werden 3,4 formelle Unterstutzungsangebote genutzt (T2: 3,6). Im Befragungszeitraum reduzierte sich das Interesse fur Angebote der Beratung, Schulung und Information (T0: 11 von 52 Angehorige; T2: 5 von 41). Menschen mit Demenz lehnten formelle Unterstutzung starker ab als Angehorige. In den qualitativen Befragungen wurde deutlich, dass vorhandene Angebote teilweise nicht dem individuellen Bedarf nach flexibler, unburokratischer und auf die individuelle Situation zugeschnittener Unterstutzung entsprechen. Uber die Versorgung mitentscheiden zu konnen, ist Menschen mit Demenz und ihren Angehorigen wichtig. Moglichst fruhzeitige Partizipation ist aufgrund des fortschreitenden Krankheitsverlaufs der Demenz die Voraussetzung, um tatsachlich an der Versorgung mitentscheiden zu konnen. Schlussfolgerung Menschen mit Demenz und ihre Angehorigen sind moglichst fruhzeitig uber formelle Unterstutzungsangebote zu informieren und an fur die Versorgung relevanten Entscheidungsprozessen aktiv zu beteiligen. Dabei sind die unterschiedlichen informellen Netzwerke hinsichtlich ihres Unterstutzungspotentials zu berucksichtigen. Das konnte die Inanspruchnahme von formellen Unterstutzungsangeboten und deren bedarfsgerechterer Weiterentwicklung fordern, um die Pflege in der Hauslichkeit weiter zur ermoglichen.

Zusammenfassung. Hintergrund: Der Umzug von Menschen mit Demenz in ein Pflegeheim kann notwendig werden, wenn die häusliche Pflege nicht mehr ausreicht. Die Übergangsphase wird von Angehörigen als zusätzliche Belastung erlebt. Ziel: Die Sichtweisen von pflegenden Angehörigen und professionellen Akteuren in der Übergangsphase von Menschen mit Demenz in ein Pflegeheim wurden untersucht, um Angehörigen eine positive Gestaltung des Übergangs zu ermöglichen. Methode: Diese Sekundäranalyse beinhaltete die Daten aus allen fünf Fokusgruppen des „RightTimePlaceCare“-Projekts mit n = 30 pflegenden Angehörigen und professionellen Akteuren. Das Material bezieht sich auf nur eine Interviewfrage und wurde daher durch eine Literaturübersicht mit dem gleichen Fokus ergänzt. Ergebnisse: Die zusammengeführten Ergebnisse legten nahe, dass pflegende Angehörige bereits in der Häuslichkeit bis nach dem Umzug Unterstützung benötigten. Die Entscheidungsfindung war durch Vorbehalte gegenüber Pflegeheimen, finanzielle Aspekte und das familiäre Umfeld geprägt. Professionelle Akteure empfahlen diesbezüglich eine frühzeitige Beratung sowie das Sammeln eigener Erfahrungen mit Pflegeheimen. Professionelle Akteure sollten in der Übergangsphase als Mittler fungieren und sich dazu miteinander vernetzen. Schlussfolgerungen: Beratung in der häuslichen Situation über Entlastungs-, Wohn- und Finanzierungsmöglichkeiten könnte Familien mehr Selbstbestimmung ermöglichen. Professionelle Akteure sollten Angehörige bei ihrer Entscheidung, der Vorbereitung des Übergangs und der Eingewöhnung unterstützen.

Background Access to formal care is not always timely and a better understanding on the impact of untimely access is needed. Objective To examine, from a societal perspective, the impact of untimely access to formal care in terms of total costs and quality of life over one year in community dwelling people with dementia. Methods Within the Actifcare study, needs, resource use, and quality of life were observed for one year in a cohort of 451 community dwelling people with dementia in 8 European countries. Untimely access to care was operationalized as having at least one unmet need for care identified by the Camberwell Assessment of Need for the Elderly (CANE) instrument. Two regression models were built for both total costs and quality of life measured by the EQ-5D-5L, one using sum of unmet needs and one using a predefined selection of need items. Results Unmet needs were not associated with higher total costs but they were associated with a lower quality of life of people with dementia. Of all CANE items, only an unmet need for "company" was significantly related to lower total costs. Conclusion Total costs did not seem to differ between participants with unmet and met needs. Only few associations between specific unmet needs and costs and quality of life were found. Furthermore, quality of life of people with dementia decreases when multiple unmet needs are experienced, indicating that assessing and meeting needs is important to improve quality of life.

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL).Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both.Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL.The perspectives of people with dementia are informative when identifying needs.

Zusammenfassung. Hintergrund: Vor dem Hintergrund des steigenden Interesses an freiwilligen Berichts- und Lernsystemen in der stationären Langzeitpflege ist es notwendig, systematisch die Faktoren einer erfolgreichen Implementierung näher zu betrachten. Ziel des Beitrags ist es daher, den Nutzen dieser Meldesysteme darzustellen sowie konkrete Empfehlungen zu deren Implementierung anhand des Consolidated Framework for Implementation Research zu diskutieren. Einflussfaktoren einer erfolgreichen Implementierung: Eine erfolgreiche Implementierung hängt von einer systematischen Vorgehensweise ab. Folgende Einflussfaktoren sind nach der Analyse mit dem Consolidated Framework for Implementation Research wesentlich: (i) eine standardisierte und einfach handhabbare Gestaltung des Meldesystems; (ii) die Berücksichtigung externer Anreizsysteme; (iii) die Schaffung einer positiven Organisations- und Sicherheitskultur, die über das Implementierungsklima und Ressourcen die Fähigkeit zur Implementierung herstellt; (iv) die Wahrnehmung von Bedürfnissen, Wissensständen und individuellen Veränderungsprozessen; sowie (v) die frequente Evaluation des Implementierungsprozesses. Ausblick: Sichtbare Interventionen und eine Weiterentwicklung der Sicherheitskultur sind wichtige Schritte zur Förderung einer nachhaltigen Implementierung von Berichts- und Lernsystemen. Derzeit erscheint es notwendig, Barrieren von Implementierungsprozessen in den Blick zu nehmen. Es ist zu empfehlen, Messinstrumente zur Evaluation der Implementierungsprozesse passgenau zu entwickeln und zu erproben sowie Merkmale nachhaltiger Implementierung weiter zu untersuchen.

Fur Angehorige ist die Phase unmittelbar nach dem Heimeinzug eines Menschen mit Demenz mit grosen Veranderungen verbunden. Die meisten mochten auch im Pflegeheim weiterhin Unterstutzung leisten. Wir fragten 119 pflegende Angehorige, welchen Aufgaben sie nach Einzug ins Pflegeheim nachgehen. Gemeinsame Spaziergange oder Gesprache stehen im Vordergrund, wahrend musikalische, sportliche und gestalterische Aktivitaten selten von den pflegenden Angehorigen begleitet werden. Ungefahr 20% der Angehorigen unterstutzen weiterhin bei den Aktivitaten des taglichen Lebens. In den ersten drei Monaten nach Einzug sind pflegende Angehorige im Mittel sieben Mal in 14 Tagen zu Besuch, nach sechs Monaten sind es sechs Mal.

Background During the transition of people with dementia from home to nursing home family caregivers often feel burdened. Objectives We aimed to 1) identify interventions which support people with dementia and their caregivers in the transition from home care to nursing home care, 2) synthesize the evidence for efficacy of these interventions, and 3) examine whether the identified interventions have been systematically developed, evaluated and implemented according to the Medical Research Council guidance on complex interventions. Design A systematic review of randomised controlled trials was conducted according to the recommendations specified in the Cochrane Handbook for Intervention Reviews. The review protocol was registered in PROSPERO (2015: CRD42015019839). Reporting follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA statement. Data sources MEDLINE, CENTRAL, PsycINFO, CINAHL, OTseeker, and PEDro, were searched. Other sources included Google Scholar, and ALOIS. Review methods Two reviewers independently assessed the eligibility of the articles. Data extraction was performed by one reviewer and verified independently by another. The Cochrane Risk of Bias tool was used for critical appraisal. Development and evaluation of the identified interventions were assessed, taking the Medical Research Council guidance into account. Review findings were synthesized narratively. Results The search yielded 1278 records. Five studies were included, all conducted in the United States (4 RCTs and 1 cRCT with a total of 695 participants). The psychosocial interventions were individual and family counseling via telephone or ad hoc all of which addressed only informal caregivers. The intervention components, content and mode of delivery differed widely with inconsistent results. Significant intervention effects were found for the reduction of caregivers' depressive symptoms, burden, feeling of guilt, emotional distress, overload, and interactions with staff. Other outcomes, i.e. stress, placement adaptation, role overload, and role captivity, were not statistically significantly affected. The assessment for bias risk across studies varied from moderate to low. Only two studies tested the feasibility of the intervention before full scale evaluation, none evaluated the implementation process according to the Medical Research Council framework. Conclusions We identified only a few studies with heterogeneous outcomes; evidence regarding the effectiveness of psychosocial interventions is thus insufficient. Further research is needed focusing on the development and evaluation of complex psychosocial interventions and more well-designed RCTs with larger sample sizes based on a rigorous methodology. Reporting on feasibility and implementation processes of interventions should be guaranteed, since it is crucial to evaluate transferability across care settings.

To investigate the cross-sectional associations between depression in people with dementia and both caregiver burden and quality of life in 8 European countries, and to test these associations compared with the presence of other neuropsychiatric symptoms.Cross-sectional study.In total, 1223 dyads comprised of informal caregivers and people with dementia living in a community-dwelling setting, recruited from the Right Time Place Care study, a cohort survey from 8 European countries.To test the associations between depression (according to the Cornell Scale for Depression in Dementia) and informal caregiver burden (defined by the Zarit scale and hours of supervision in terms of Resource Utilization in Dementia), distress (defined by the Neuropsychiatric Inventory Questionnaire distress score), and quality of life (according to the visual analogue scale and 12-item General Health Questionnaire).Linear regressions showed an association between depression and main outcomes (Zarit scale: β 3.7; P = .001; hours of supervision: β 1.7; P = .004; Neuropsychiatric Inventory Questionnaire distress score: β 1.2; P = .002). A similar association was found concerning psychological and overall well-being (12-item General Health Questionnaire: β 1.8; P < .001; Euroqol Visual Analogue Scale: β -4.1; P = .003). Both associations remained significant despite the presence of other NPS and after adjusting for confounders.Further studies are needed to assess whether providing tailored strategies for optimizing diagnosis and managing of depression in people with dementia might improve caregiver quality of life and reduce their burden in the community-dwelling setting.Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

ObjectivesIn the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia-specific formal care services. Results can identify which specific factors should be a target to improve access.MethodsA total of 451 People with middle-stage dementia and their informal carers from eight European countries were included. At baseline, there was no use of formal care yet, but people were expected to start using formal care within the next year. Logistic regressions were carried out with one of four clusters of service use as dependent variables (home social care, home personal care, day care, admission). The independent variables (predisposing, enabling, and need variables) were added to the regression in blocks.ResultsThe most significant predictors for the different care clusters are disease severity, a higher sum of (un)met needs, hours spent on informal care, living alone, age, region of residence, and gender.ConclusionThe Andersen model provided for this cohort the insight that (besides need factors) the predisposing variables region of residence, gender, and age do play a role in finding access to care. In addition, it showed us that the numbers of hours spent on informal care, living alone, needs, and disease severity are also important predictors within the model's framework. Health care professionals should pay attention to these predisposing factors to ensure that they do not become barriers for those in need for care.

IntroductionProximal femoral fractures (PFF) are among the most frequent fractures in older people. However, the situation of people with a PFF after hospital discharge is poorly understood. Our aim is to (1) analyse healthcare provision, (2) examine clinical and patient-reported outcomes (PROs), (3) describe clinical and sociodemographic predictors of these and (4) develop an algorithm to identify subgroups with poor outcomes and a potential need for more intensive healthcare.Methods and analysisThis is a population-based prospective study based on individually linked survey and statutory health insurance (SHI) data. All people aged minimum 60 years who have been continuously insured with the AOK Rheinland/Hamburg and experience a PFF within 1 year will be consecutively included (SHI data analysis). Additionally, 700 people selected randomly from the study population will be consecutively invited to participate in the survey. Questionnaire data will be collected in the participants’ private surroundings at 3, 6 and 12 months after hospital discharge. If the insured person considers themselves to be only partially or not at all able to take part in the survey, a proxy person will be interviewed where possible. SHI variables include healthcare provision, healthcare costs and clinical outcomes. Questionnaire variables include information on PROs, lifestyle characteristics and socioeconomic status. We will use multiple regression models to estimate healthcare processes and outcomes including mortality and cost, investigate predictors, perform non-responder analysis and develop an algorithm to identify vulnerable subgroups.Ethics and disseminationThe study was approved by the ethics committee of the Faculty of Medicine, Heinrich-Heine-University Düsseldorf (approval reference 6128R). All participants including proxies providing written and informed consent can withdraw from the study at any time. The study findings will be disseminated through scientific journals and public information.Trial registration numberDRKS00012554.

Objectives: To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare.Methods: A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time.Results: A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p

Aim To develop a questionnaire suitable for assessing the information needs of individuals with diabetes mellitus types 1 and 2 in diverse healthcare settings (e.g. primary care or long-term care) and at different time points during the course of the disease. Methods The initial questionnaire was developed on the basis of literature search and analysis, reviewed by clinical experts, and evaluated in two focus groups. The revised version was pilot-tested on 39 individuals with diabetes type 2, type 1 and gestational diabetes. Results The final questionnaire reveals the most important information needs in diabetes. A choice task, a rating task and open-ended questions are combined. First, participants have to choose three topics that interest them out of a list with 12 general topics and specify in their own words their particular information needs for the chosen topics. They are then asked how informed they feel with regard to all topics (4-point Likert-scale), and whether information is currently desired (yes/no). The questionnaire ends with an open-ended question asking for additional topics of interest. Conclusions Careful selection of topics and inclusion of open-ended questions seem to be essential prerequisites for the unbiased assessment of information needs. The questionnaire can be applied in surveys in order to examine patterns of information needs across various groups and changes during the course of the disease. Such knowledge would contribute to more patient-guided information, counselling and support.

ObjectivesThis study aimed to identify: (1) information needs of people with recently diagnosed type 1 or type 2 diabetes mellitus (DM); (2) information needs within different subgroups; and (3) factors associated with information needs concerning DM such as current level of information, health-related quality of life or participation preferences.DesignA mixed-method approach combining quantitative and qualitative methods was used. Information needs for different topics and estimated associated factors were described using logistic regression models. Additionally, a qualitative content analysis was performed.SettingMonocentre study.ParticipantsInformation needs were assessed and analysed in 138 consecutive participants with DM who took part in the German Diabetes Study (54% type 2 diabetes, 64% male, mean age 46.3±12.3 years, known diabetes duration ResultsMost participants displayed a need for information in all topics provided, especially in diabetes research (86%) and treatment/therapy (80%). Regarding those topics, participants wished for information regarding new treatments that simplify their everyday life. In general, participants preferred topics that focus on the management or handling of DM over topics related to clinical factors of DM, such as causes and complications. A low current level of information and treatment with antihyperglycaemic medication were significantly associated with higher information needs, and diabetes-related comorbidity and higher mental component summary score in the 36-Item Short-Form Health Survey (SF-36) with lower information needs.ConclusionPeople with recently diagnosed DM display high information needs, which differ according to the current level of information, mode of diabetes treatment, diabetes-related comorbidity and mental component summary score in the SF-36. There appears to be a preference for information, which can help to simplify life with diabetes and for information that corresponds to their level of knowledge. This should be considered in patient information activities.Trial registration numberNCT01055093.

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified. The project is supported through the following funding organizations under the aegis of JPND – www.jpnd.eu [grant number 733051001]. Germany, Ministry of Education and Research, Ireland, Health research board, Italy, Ministry of Health, the Netherlands, The Netherlands organization for Health Research and Development, Sweden, The Swedish Research Council for Health, Working Life and Welfare, Norway, The Research Council of Norway, Portugal, Foundation for Science and Technology (Fundação para a Ciência e Tecnologia [grant number FCT–JPND‐HC/ 0001/2012], United Kingdom, Economic and Social Research Council. JPND has read and approved of the protocol of the Actifcare study

The balance of care approach is a strategic planning framework that can be used to research the adequacy of care arrangements and the cost implications. It seeks to identify people who are on the margins of care, i. e. whose care and nursing needs could be met in more than one setting, and explores the relative costs of the possible alternatives. This article describes a balance of care application for people with dementia in a transitional phase between home and institutional care in Germany.A sequential mixed-methods design was applied that combined empirical data, the decision of healthcare professionals (panels) and cost estimates in a structured way. Data were collected as part of the RightTimePlaceCare project from 235 people with dementia and their caregivers in 2 settings, in nursing homes and domestic care.Based on five key variables, case types of people with dementia with comparable needs were developed. In panels with healthcare professionals there was consensus that people represented by four of these case types could by cared for at home while the reference group of actual study participants was currently being cared for in nursing homes. For these four case types, exemplary home care arrangements were formulated, costs were estimated and compared to institutional care costs.There is a potential for home care for a significant group of people with dementia currently admitted to institutional care. Some of the alternative home care arrangements were cost-saving. Despite some limitations, the study demonstrated the utility of the balance of care approach to support the development of empirically based expert recommendations on care provision.

Formal care services are less often used in dementia care than in care for people without dementia. The Actifcare project, in which eight European countries participated, emphasized the point in time in the trajectory of dementia when formal care becomes more and more important for supporting caregivers at home. A mixed-method study conducted over 12 months aimed to improve the understanding of care needs and the influencing factors for using informal and formal support for care at home. This report focuses on the German sample of the cohort study.People with dementia with their informal caregivers from the German federal states of North Rhine-Westphalia, Saxony-Anhalt and Saxony were interviewed between January 2015 and July 2016. A set of validated questionnaires was used for the baseline interviews and two follow-ups. Additional guideline-based semi-structured interviews were conducted with a subgroup of informal caregivers at the last follow-up interview. The standardized questionnaires were analyzed using a descriptive approach, and the semi-structured interviews were subjected to qualitative content analysis. Similar to the data collection processes, the results of both analyses were synthesized using a data triangulation approach.A total of 52 people with dementia and their informal caregivers participated in the standardized interviews. A subsample of 12 informal caregivers was included in the qualitative interviews. At baseline, 28 out of 51 informal caregivers cared for their relatives with dementia without additional informal support (T2: 22 of 41). The social network of approximately half of the informal caregivers included three to four relatives, who were ready to help if necessary. On average, 3.4 support services were used (T2: 3.6). During the study period, the interest in educational, informational and counselling services decreased (T0: 11 of 52 informal caregivers; T2: 5 of 41). Formal care was more often rejected by people with dementia than by informal caregivers. Sometimes, the available services were considered insufficient in terms of personal needs of formal support, which should be flexible, unbureaucratic and tailored to the needs of the individual patient's situation. It is important for people with dementia and their informal caregivers to be involved in the decision-making processes of caregiving. Since dementia is a progressive disease, early participation is a prerequisite for making shared decisions about healthcare services.People with dementia and their informal caregivers should be informed about formal care services and involved in decision-making processes as early as possible. To this purpose, account must be taken of the various informal social networks. This could improve the use of formal care services and the further development of these offers and thus prolong care at home.