[Experts' uncertainties in decisions on the indication for rehabilitation as part of the assessment of long-term care needs: Results of semi-structured interview]. / Entscheidungsunsicherheiten bei der zweistufigen Prüfung einer Rehabilitationsindikation im Rahmen der Pflegebegutachtung ­ Ergebnisse leitfadengestützter Interviews.

OBJECTIVE: As part of assessment of long-term care needs, Medical Services of the compulsory German Health Insurance have to decide whether medical rehabilitation is indicated. The aim of this study was to identify uncertainties and associated factors while deciding whether rehabilitation was indicated in this standardized review process. METHOD: Semi-structured interviews were conducted with a total of twelve nursing experts and six physician experts from six different Medical Services. In the interviews of the two professional groups, thinking aloud and problem-centered methods were used. They were subjected to a cognitive pretest prior to data collection. All interviews were conducted over telephone in May 2021, digitally recorded and transcribed thereafter. They were analyzed based on the method of structuring qualitative content analysis using the MAXQDA software. RESULTS: Uncertainties in decision-making can arise both from case-related characteristics and case-independent contextual factors. Nursing experts associated uncertainties in assessing the criteria of rehabilitation indication primarily with certain diseases (especially dementia or mental illnesses), multimorbidity, an unclear illness and ambulatory care situation, as well as a negative rehabilitation-related attitude of the persons being assessed. The physician experts, who based their decisions on available documentation in the case files, described uncertainties, particularly due to insufficient information relevant to the decision (e. g., on diagnostics, course of disease and treatment, weighting of existing limitations) in the nursing experts' assessments. Across all criteria, the experts' own professional or private rehabilitation experience and their understanding of the role of rehabilitation before and during the need for long-term care, as well as aspects of communication practice and the professional exchange between the nursing and the physician experts also influenced the overall decision-making process. CONCLUSION: The identification of uncertainties in experts' decision-making process and associated factors enables the development of strategies to strengthen specifically the certainty of experts' decision-making and thus may contribute to the promotion of a needs-based rehabilitation access via long-term care assessment.

[Dementia Care Nurses in the networked care of people with dementia: a qualitative evaluation study]. / Dementia Care Nurses in der vernetzten Versorgung von Menschen mit Demenz.

Dementia Care Nurses in the networked care of people with dementia: A qualitative evaluation study Abstract: Background: To coordinate networked dementia care counselling concepts with case management (CM) structures are recommended. This approach has been explored and evaluated within the Dementia Care Nurse project in Saxony-Anhalt. Studies on the implementation of CM are mostly limited to cooperation between case managers and medical and nursing professional groups. Networking processes with all stakeholders involved in dementia care have hardly been described so far. Objective: The aim was to describe the experienced collaboration with Dementia Care Nurses (DCNs) from the perspective of the participating cooperation partners and to derive approaches for the continuation of the DCNs in routine care. Method: Eight semi-structured interviews were conducted with cooperation partners from the health and social care sector who participated in the DCN project. The interviews were analysed for content. Results: The interviews were evaluated by content analysis. Results: Overall, the interviewed cooperation partners rated the collaboration with the DCNs in the project as positive, especially the proactive approach and the continuous support of people with dementia. The continuation in routine care depends on the institutional location and the qualification of the DCNs. Conclusion: The commitment of DCNs enables a more demand-oriented involvement of relevant stakeholders in the individual planning of dementia care.

Challenges, strategies and consequences from the perspective of German nursing home managers during the first wave of the COVID-19 pandemic - a qualitative interview study.

BACKGROUND: The first wave of the COVID-19 pandemic reached Germany between March and May 2020. In order to contain the spread of the virus and particularly protect vulnerable people, the government imposed a lockdown in March 2020. In addition to infection control measures, such as hygiene and social distancing requirements, a general ban on access to nursing homes for relatives and external service providers was issued. METHODS: To investigate the challenges and consequences of the enacted infection prevention measures and specific strategies for nursing homes in Germany, a multicentre cross-sectional qualitative interview study with nursing home managers and ward managers was conducted. Recorded audio data were transcribed, analysed using thematic framework analysis and reflected in peer debriefings. RESULTS: Seventy-eight interviews with 40 nursing home managers and 38 ward managers from 43 German nursing homes were conducted. At organisational level, the following six themes were identified: Appointing a multi-professional crisis task force, reorganizing the use of building and spatial structures, continuous adaption and implementation of hygiene plans, adapting staff deployment to dynamically changing demands, managing additional communicative demands and relying on and resorting to informal networks. To deal with the pandemic challenges also six themes can be described for the direct care level: Changed routines, taking over non-nursing tasks, increased medical responsibility, increased documentation demands, promoting social participation and increased communication demands. Also various negative consequences were identified (four themes): Psychological stress, negative emotional consequences, permanent feeling of responsibility and increased potential for conflicts. Positive emotional consequences were also reported (two themes): resources for the challenges and positive emotional consequences for home managers and staff. CONCLUSIONS: The results of the described challenges, strategies and consequences allow recommendations as basis for possible approaches and successful adaptation processes in nursing home care in the future. In particular, there is a need for local networks to act in a coordinated way and a need for quantitative and qualitative support for nurses, such as staff support as well as advanced nursing practice, to cope with the challenges of the pandemic.

Exploring stakeholders' perspectives on the adaptation of the Living Lab approach to dementia care: A qualitative study.

Collaborative research can promote knowledge translation and help to link care practice and research. Academic-practice partnerships enable joint research projects in collaboration between care professionals, researchers, patients, and other stakeholders. This qualitative study was conducted during the adaptation phase of the Living Lab Dementia, an academic-practice partnership for collaborative research on long-term dementia care. The aim was to explore stakeholders' perspectives on linking care practice and research in a sustainable, research-focused partnership. Data were collected in fifteen qualitative interviews with representatives from three stakeholder groups: nursing care professionals, people with dementia, and nursing researchers. Thematic Framework Analysis resulted in five themes: (1) Access, (2) Expectations, (3) Shaping the collaboration, (4) Linking Pins, and (5) Participation. The findings suggest that care professionals expect support in implementing research results into practice. Researchers should take the lead in shaping the collaboration and create opportunities for stakeholders to get involved.

The use of formal care for dementia from a professional perspective: a scoping review.

BACKGROUND AND OBJECTIVES: The progressive character of dementia usually leads to a continuously increasing need for support. There is some evidence of late use of professional support during the disease course. We aim to provide an overview of aspects influencing access and use of formal care in dementia from the perspective of health and social care professionals. Additionally, the perspectives of professionals and people with dementia/informal carers will be compared. METHODS: We conducted a scoping review with a systematic literature search in Medline via Ovid in January 2019 and updated this in April 2020 and in May 2021. Publications were considered eligible when focusing on influencing aspects of the use of formal care or support for people with dementia in an outpatient setting from the perspective of health professionals. Included publications were critically appraised using the Mixed Method Appraisal Tool. We identified aspects of access to and use of formal care and support services. A consultation exercise with three specialised trained dementia care nurses was conducted to validate our results. RESULTS: We included 29 studies: n = 20 qualitative, n = 6 quantitative-descriptive, n = 3 mixed-methods. Various support services were identified, but a focus was on services for diagnostic and treatment of dementia. A wide range of influencing aspects (n = 15) describe the access to and use of formal care services. Aspects related to the complexity and structure of the healthcare system and the competence of professionals were frequently addressed. Second, attitudes and expectations of professionals, and experiences with people with dementia and their informal carers were identified. The dementia care nurses highlighted the importance of coordinated care to enhance dementia-specific competencies. CONCLUSIONS: Health and social care professionals still describe barriers in accessing and using formal care due to various influences. Ways to improve access to and use of professional support in dementia should consider individual and system-level activities, as well as overarching aspects. Important topics are therefore education and training of professionals and coordinated dementia-specific care to provide adequate support for people with dementia and their relatives. Several professions may be involved in this increasingly important field, e.g., nurses with a dementia-specific training like dementia care nurses.

Trajectories of relationship quality in dementia: a longitudinal study in eight European countries.

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 1 year, 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.

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study.

OBJECTIVES: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. METHODS: We 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. RESULTS: Unmet 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. CONCLUSION: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries.

PURPOSE: Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia. METHODS: Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman's correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries. RESULTS: The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect. CONCLUSION: This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.

Are birth outcomes in low risk birth cohorts related to hospital birth volumes? A systematic review.

BACKGROUND: There is convincing evidence that birth in hospitals with high birth volumes increases the chance of healthy survival in high-risk infants. However, it is unclear whether this is true also for low risk infants. The aim of this systematic review was to analyze effects of hospital's birth volume on mortality, mode of delivery, readmissions, complications and subsequent developmental delays in all births or predefined low risk birth cohorts. The search strategy included EMBASE and Medline supplemented by citing and cited literature of included studies and expert panel highlighting additional literature, published between January/2000 and February/2020. We included studies which were published in English or German language reporting effects of birth volumes on mortality in term or all births in countries with neonatal mortality < 5/1000. We undertook a double-independent title-abstract- and full-text screening and extraction of study characteristics, critical appraisal and outcomes in a qualitative evidence synthesis. RESULTS: 13 retrospective studies with mostly acceptable quality were included. Heterogeneous volume-thresholds, risk adjustments, outcomes and populations hindered a meta-analysis. Qualitatively, four of six studies reported significantly higher perinatal mortality in lower birth volume hospitals. Volume-outcome effects on neonatal mortality (n = 7), stillbirths (n = 3), maternal mortality (n = 1), caesarean sections (n = 2), maternal (n = 1) and neonatal complications (n = 1) were inconclusive. CONCLUSION: Analyzed studies indicate higher rates of perinatal mortality for low risk birth in hospitals with low birth volumes. Due to heterogeneity of studies, data synthesis was complicated and a meta-analysis was not possible. Therefore international core outcome sets should be defined and implemented in perinatal registries. SYSTEMATIC REVIEW REGISTRATION: PROSPERO: CRD42018095289.

Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: a Delphi process conducted by the Actifcare project.

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.

Gewalt und Gewaltprävention in der stationären Altenpflege während der COVID-19-Pandemie.

Violence and Violence Prevention in Nursing Homes during the COVID-19 Pandemic - A partial analysis of Interviews with Managers or Team Leaders Abstract. Background: During the first wave of the COVID-19 pandemic, strict infection control measures were in force in long-term residential care in Germany that burdened staff and isolated residents socially. Both are considered risk factors for violence in long-term residential care. Questions: How does violence develop in nursing homes under pandemic conditions from the point of view of managers and how do strategies for preventing violence change? Methods: Semi-structured telephone interviews were conducted with staff in 43 nursing homes: 25 with service managers, 15 with nurse managers, 28 with nursing team leaders and 10 with registered nurses with extended tasks. The interviews were recorded as audio, transcribed and analysed in five steps following the "Thematic Framework Analysis". Results: The infection control measures were partly perceived as deprivation of freedom. Residents, relatives and staff partly reacted most with verbal violence. Nevertheless, the issue of violence was not a major concern for management and preventive measures were not carried out. Conclusions: The results show that strategies to prevent violence might not be sufficiently established in the institutions involved and would have to be adapted to the conditions of the pandemic. Further research is needed to evaluate infection control measures in their potential to increase the incidence of violence.

Is there equity in initial access to formal dementia care in Europe? The Andersen Model applied to the Actifcare cohort.

OBJECTIVES: In 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. METHODS: A 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. RESULTS: The 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. CONCLUSION: The 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.

Do caregiver profiles predict the use of dementia care services? Findings from the Actifcare study.

Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors.Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline.Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services.Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised.

Interventions to enhance access to and utilization of formal community care services for home dwelling persons with dementia and their informal carers. A scoping review.

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.

Relationship quality and sense of coherence in dementia: Results of a European cohort study.

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.

Influences on the access to and use of formal community care by people with dementia and their informal caregivers: a scoping review.

BACKGROUND: The literature describes the obstacles to sufficient care faced by people with dementia and their informal caregivers. Although factors influencing access and utilisation are frequently studied, the body of knowledge lacks an overview of aspects related to influence. The frequently used Behavioural Model of Health Care Use (BM) could be used to structure and explain these aspects. An adaptation of the BM emphasises psychosocial influences and appears to enrich the understanding of the use of long-term care for dementia. METHODS: We conducted a scoping review with the aim of providing an overview of the aspects influencing the access to and utilisation of formal community care in dementia. Our search covered the PubMed, CINAHL, Social Science Citation Index and PsychInfo databases, as well as grey literature. Two researchers assessed the full texts for eligibility. A data extraction form was developed and tested. We analysed the main topics investigated by the studies and mapped and described the investigated psychosocial aspects according to the BM after narratively summarising the findings. We used the Mixed Method Appraisal Tool (MMAT) to critically appraise the included studies. RESULTS: A total of 94 studies were included: n = 55 with quantitative designs, 35 with qualitative designs and four with mixed methods. The studies investigated different services, mainly focusing on health care services. One third of the studies provided information regarding the severity of dementia. The most frequently investigated main topics were ethnicity and attitudes towards services. Psychosocial aspects were frequently investigated, although few studies considered the perspectives of people with dementia. Approximately half of the studies reported a theoretical framework. The adapted BM facilitated the structuring and description of psychosocial aspects. However, this instrument did not address topics beyond the scope of psychosocial aspects, such as sociodemographic characteristics. CONCLUSIONS: The access to and utilisation of formal community care for dementia can only be partly explained by individual influencing aspects. Therefore, a theoretical framework would likely help to describe this complex subject. Our findings indicate that the psychosocial categories of the adapted BM enriched the original BM, and that people with dementia should more often be included in healthcare service research to ensure a better understanding of the barriers to accessing formal community care.

Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries.

BACKGROUND: People 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. METHOD: Focus 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. RESULTS: Overall, 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. CONCLUSION: Further 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.

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.

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.

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

BACKGROUND: As 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. METHODS: Each 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. RESULTS: The 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. CONCLUSIONS: Policy 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.

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

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.