Astrid Stephan

Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals

AIMSnTo explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries.nnnBACKGROUNDnHealthcare professionals may have an important role in facilitating informal caregivers decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization.nnnDESIGNnCross-sectional survey in eight European countries (November 2010-January 2012).nnnMETHODSnHealthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa).nnnRESULTSnJudgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain.nnnCONCLUSIONnAgreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.

Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study

BackgroundPrevious findings indicate that people with dementia and their informal carers experience difficulties accessing and using formal care services due to a mismatch between needs and service use. This mismatch causes overall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background and methods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practice development in finding timely access to formal care for community-dwelling people with dementia and their informal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the use of formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Compare these across European countries, 4) Understand the costs and consequences of formal care services utilization in people with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formal care services across European countries.MethodsIn a longitudinal cohort study conducted in eight European countries approximately 450 people with dementia and informal carers will be assessed three times in 1xa0year (baseline, 6 and 12xa0months). In this year we will closely monitor the process of finding access to formal care. Data on service use, quality of life and needs will be collected.DiscussionThe results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledge about enabling and predisposing factors regarding access to care services, as well as its costs and consequences, can advance the state of the art in health systems research into pathways to dementia care, in order to benefit people with dementia and their informal carers.

Potentially inappropriate medication among people with dementia in eight European countries

Objectivesnto evaluate the frequency of potentially inappropriate medication (PIM) prescription among older people with dementia (PwD) from eight countries participating in the European study RightTimePlaceCare, and to evaluate factors and adverse outcomes associated with PIM prescription.nnnMethodsnsurvey of 2,004 PwD including a baseline assessment and follow-up after 3 months. Interviewers gathered data on age, sex, prescription of medication, cognitive status, functional status, comorbidity, setting and admission to hospital, fall-related injuries and mortality in the time between baseline and follow-up. The European Union(7)-PIM list was used to evaluate PIM prescription. Multivariate regression analysis was used to investigate factors and adverse outcomes associated with PIM prescription.nnnResultsnoverall, 60% of the participants had at least one PIM prescription and 26.4% at least two. The PIM therapeutic subgroups most frequently prescribed were psycholeptics (26% of all PIM prescriptions) and drugs for acid-related disorders (21%). PwD who were 80 years and older, lived in institutional long-term care settings, had higher comorbidity and were more functionally impaired were at higher risk of being prescribed two PIM or more. The prescription of two or more PIM was associated with higher chance of suffering from at least one fall-related injury and at least one episode of hospitalisation in the time between baseline and follow-up.nnnConclusionsnPIM use among PwD is frequent and is associated with institutional long-term care, age, advanced morbidity and functional impairment. It also appears to be associated with adverse outcomes. Special attention should be paid to psycholeptics and drugs for acid-related disorders.

Interventions to support people with dementia and their caregivers during the transition from home care to nursing home care: A systematic review

BACKGROUNDnDuring the transition of people with dementia from home to nursing home family caregivers often feel burdened.nnnOBJECTIVESnWe 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.nnnDESIGNnA 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.nnnDATA SOURCESnMEDLINE, CENTRAL, PsycINFO, CINAHL, OTseeker, and PEDro, were searched. Other sources included Google Scholar, and ALOIS.nnnREVIEW METHODSnTwo 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.nnnRESULTSnThe 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.nnnCONCLUSIONSnWe 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.

Perspectives of policy and political decision makers on access to formal dementia care : expert interviews in eight European countries

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 Nxa0=xa038). 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.

What Makes Institutional Long-Term Care the Most Appropriate Setting for People With Dementia? Exploring the Influence of Client Characteristics, Decision-Maker Attributes, and Country in 8 European Nations.

OBJECTIVESnTo explore the extent to which client characteristics, decision-maker attributes, and country influence judgments of institutional long-term care (ILTC) appropriateness for people with dementia.nnnDESIGN, SETTING, AND PARTICIPANTSnA total of 161 experts in dementia care from 8 European countries reviewed a series of 14 vignettes representing people with dementia on the cusp of ILTC admission and indicated the most appropriate setting in which to support each case in a simple discrete choice exercise: own home, very sheltered housing, residential home, or nursing home. At least 16 experts participated in each country (Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden, and the United Kingdom).nnnMEASUREMENTSnDescriptive statistics were used to characterize the experts and their placement preferences. Logistic regression modeling was used to explore the extent to which the sociodemographic and clinical characteristics of people with dementia, and the profession, workplace, and country of decision-makers were associated with ILTC recommendation.nnnRESULTSnClient characteristics, decision-maker attributes, and country all seemed to play a part in influencing professionals perceptions of the appropriateness of ILTC for people with dementia. Expert decision-makers were more likely to recommend ILTC for individuals who required help with mobility or had multiple care needs, and appeared to give more weight to carers than clients wishes. Community-based social workers were less likely than other professional groups to favor ILTC placement. Experts in Finland, Germany, and the United Kingdom were less likely to recommend ILTC than experts in France, the Netherlands, and Estonia; experts in Sweden and Spain took an intermediate position.nnnCONCLUSIONnThis study provides new understanding of the factors that shape professionals perceptions of ILTC appropriateness and highlights the need to construct multifaceted models of institutionalization when planning services for people with dementia. It also has several important clinical implications (including flagging interventions that could decrease the need for ILTC), and provides a basis for enhancing professionals decision-making capabilities (including the greater involvement of clients themselves).

Successful collaboration in dementia care from the perspectives of healthcare professionals and informal carers in Germany: results from a focus group study.

BackgroundInformal carers of persons with dementia are in contact with numerous healthcare professionals (HCP) in a complex healthcare system. Successful collaboration between the parties involved appears to be essential for good dementia care. Thus, we investigated the perceptions of both HCP and informal carers regarding successful collaboration and sought to describe obstacles and facilitators.MethodsAs part of the 7th framework EU project RightTimePlaceCare, five focus groups were conducted with HCP and informal carers of persons with dementia in Germany (nu2009=u200930 participants/ time: Oct/Nov 2011). A supplementary secondary data analysis was performed, applying qualitative content analysis with open coding.ResultsThe derived categories were sorted into three overarching themes: collaboration between HCP and informal carers, collaboration among HCP and the impact of resources and healthcare system. HCP and informal carers largely agree on what facilitates or impedes successful collaboration between them. Making the initial contact appears to be a major challenge. While HCP expect to be contacted, informal carers hesitate to seek assistance, primarily due to inner barriers. Permanent contact person/institution, well-trained, empathetic HCP who can establish a trustful relationship are regarded as facilitating collaboration. The relational perspective is more clearly emphasised by HCP than by informal carers. This may be attributed to the absence of a permanent contact person in Germany.Sufficient information relay, clear responsibilities, motivation and defined aims, and a personal relationship between professionals are mentioned as facilitators. External factors, such as rapid staff turnover, insufficient time resources and conditions specified by the health and long-term care system causing financial competition between providers, are described as general barriers to successful collaboration.ConclusionsHCP and informal carers had comparable perceptions of successful collaboration among them. The initial contact seems to be particularly challenging. Better strategies are urgently needed to facilitate the access to professional support. A permanent contact person (e.g., a case manager) might improve collaboration among all the parties involved, but this is not available regularly. Constraints created by the healthcare system may considerably hinder successful collaboration.

Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

ABSTRACT 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.

Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health.

ABSTRACT 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 < 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled ‘older low strain’, ‘older intermediate strain’, ‘older high strain’, ‘younger low strain’ and ‘younger high strain’. Conclusion: Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs.

Access to community care for people with dementia and their informal carers: Case vignettes for a European comparison of structures and common pathways to formal care

BackgroundPeople with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time.ObjectivesDescription and comparison of common pathways to formal community dementia care in eight European countries as axa0part of the transnational Actifcare project.Materials and methodsThe German team was responsible for creating an individual case scenario as axa0starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe axa0common pathway to formal dementia care by writing their own vignette using the provided individual case scenario.ResultsA transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system.ConclusionEnhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.ZusammenfassungHintergrundMenschen mit Demenz und ihre Angehörigen erhalten häufig nicht oder nicht rechtzeitig angemessene professionelle Unterstützung.Ziel der ArbeitBeschrieben und verglichen werden Zugangswege zu professioneller ambulanter Unterstützung bei Demenz in acht europäischen Ländern als Teil des transnationalen Actifcare-Projekts.Material und MethodeDas für das Arbeitspaket verantwortliche Team aus Deutschland erstellte eine Fallvignette als Prototyp; die wissenschaftlichen Teams in Irland, Italien, den Niederlanden, Norwegen, Portugal, Schweden und Großbritannien erhielten den Auftrag, darauf aufbauend den typischen Zugangsweg zu professioneller Unterstützung bei Demenz in einer individuellen Vignette fortzuschreiben.ErgebnisseMit einer länderübergreifenden qualitativen Inhaltsanalyse wurden als wesentliche Kategorien identifiziert: involvierte Professionen, demenzspezifische und teambasierte Ansätze, proaktive Rollen und finanzielle Aspekte. Als die wichtigste Profession im Zugang zu professioneller Unterstützung wird in allen Ländern der Hausarzt beschrieben. In einigen Ländern übernehmen andere Professionen Verantwortung im Zugangsprozess. Demenzspezifische Strukturen sind kaum Bestandteil der Regelversorgung; teambasierte Ansätze sind in den meisten Ländern unterschiedlich bedeutsam etabliert. Angehörige kümmern sich oft in Eigeninitiative darum, professionelle Hilfen einzubeziehen. Die nordischen Länder zeigen, wie sich durch finanzielle Unterstützung der Zugang zum professionellen System fördern lässt.SchlussfolgerungEine intensivierte Zusammenarbeit zwischen Hausärzten und anderen Professionen könnte den Zugang optimieren. Teambasierte Ansätze sind demenzspezifisch weiterzuentwickeln. Angehörige sind in ihrer Rolle zu unterstützen und zu entlasten. Finanzielle Zugangshürden sind genauer zu identifizieren und zu reduzieren.