Acceptance of a robotic system for nursing care: a cross-sectional survey with professional nurses, care recipients and relatives.

BACKGROUND: The end-users' acceptance is a core concept in the development, implementation and evaluation of new systems like robotic systems in daily nursing practice. So far, studies have shown various findings concerning the acceptance of systems that are intended to assist people with support or care needs. Not much has been reported on the acceptance of robots that provide direct physical assistance to nurses in bedside care. Therefore, this study aimed to investigate the acceptance along with ethical implications of the prototype of an assistive robotic arm aiming to support nurses in bedside care, from the perspective of nurses, care recipients and their relatives. METHODS: A cross-sectional survey design was applied at an early stage in the technological development of the system. Professional nurses, care recipients and relatives were recruited from a university hospital and a nursing home in Germany. The questionnaire was handed out following either a video or a live demonstration of the lab prototype and a subsequent one-to-one follow-up discussion. Data analysis was performed descriptively. RESULTS: A total of 67 participants took part in the study. The rejection of specified ethical concerns across all the respondents was 77%. For items related to both perceived usefulness and intention to use, 75% of ratings across all the respondents were positive. In the follow-up discussions, the participants showed interest and openness toward the prototype, although there were varying opinions on aspects such as size, appearance, velocity, and potential impact on workload. CONCLUSIONS: Regarding the current state of development, the acceptance among the participants was high, and ethical concerns were relatively minor. Moving forward, it would be beneficial to explore the acceptance in further developmental stages of the system, particularly when the usability is tested.

Development of Fear of Falling after proximal femoral fracture.

Background: Proximal femoral fracture is common in older people. Beyond a long recovery process and significant permanent functional limitations, older people often experience subsequent Fear of Falling. The phenomenon of Fear of Falling is not fully understood; qualitative research is underrepresented but can provide insights into the experience of those affected. Objectives: We aimed to explore the experiences of Fear of Falling development and to what extent it affects peoples' life after proximal femoral fracture. Methods: We conducted semi-structured, in-depth interviews with nine older people, aged between 61 and 88, who participated in a prospective observational study. Interview data were analysed through inductive content analysis. Results: Six major themes emerged: The development of Fear of Falling; the effect of FoF and hope for recovery; alternating between moments of fear and security; fear of helplessness and of losing independence; strategies for dealing with Fear of Falling and maintaining independence; need of support by health care professionals. Conclusion: To identify and support older people in coping with Fear of Falling (after proximal femoral fracture), strategies for dealing with Fear of Falling across occupational groups and all healthcare settings should be implemented. Nurses have a key role in this process.

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.

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.

Implementing ethical aspects in the development of a robotic system for nursing care: a qualitative approach.

BACKGROUND: 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. METHODS: 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). RESULTS: 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. CONCLUSION: 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.

[User-oriented needs assessment of the potential use of assistive robots in direct nursing care: A mixed methods study]. / Nutzerorientierte Bedarfsanalyse zum potenziellen Einsatz von Assistenzrobotern in der direkten Pflege.

User-oriented needs assessment of the potential use of assistive robots in direct nursing care: A mixed methods study Abstract. Background: So far, hardly any robots have been used in nursing that take over patient-related activities and thereby reduce the physical strain on the caregivers. Using user-centered design approaches, the interdisciplinary project "PfleKoRo" was therefore developing a robotic assistance system that can be used in the direct care of bedridden patients requiring intensive or very intensive care. Aim: The aim of this study was to identify nursing activities with the greatest support potential for an assistant robot for the direct care of bedridden patients. Method: Focus groups (n = 3) with nursing professionals (n = 14) from acute and long-term care were conducted first in an explorative mixed method design and then evaluated by means of content analysis. A selection of nursing activities was then prioritized by the participants of the focus groups (n = 10) with regard to their potential for support from an assistant robot in a standardized survey. Results: The highest priority was given to turning and holding patients in a lateral position as well as holding their legs in order to perform nursing tasks. Further support was needed, among other things, for repositioning the patient to the head of the bed and for tasks such as the transfer of patients. Conclusion: Turning patients and holding them in a lateral position as well as holding the leg are seen as target activities with the greatest support potential for "PfleKoRo", presenting the starting point for further development.

Obtaining EQ-5D-5L utilities from the disease specific quality of life Alzheimer's disease scale: development and results from a mapping study.

PURPOSE: The Quality of Life Alzheimer's Disease Scale (QoL-AD) is commonly used to assess disease specific health-related quality of life (HRQoL) as rated by patients and their carers. For cost-effectiveness analyses, utilities based on the EQ-5D are often required. We report a new mapping algorithm to obtain EQ-5D indices when only QoL-AD data are available. METHODS: Different statistical models to estimate utility directly, or responses to individual EQ-5D questions (response mapping) from QoL-AD, were trialled for patient-rated and proxy-rated questionnaires. Model performance was assessed by root mean square error and mean absolute error. RESULTS: The response model using multinomial regression including age and sex, performed best in both the estimation dataset and an independent dataset. CONCLUSIONS: The recommended mapping algorithm allows researchers for the first time to estimate EQ-5D values from QoL-AD data, enabling cost-utility analyses using datasets where the QoL-AD but no utility measures were collected.

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.

Patients' experiences of delirium: A systematic review and meta-summary of qualitative research.

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.

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.

Emergency department and hospital admissions among people with dementia living at home or in nursing homes: results of the European RightTimePlaceCare project on their frequency, associated factors and costs.

BACKGROUND: Evidence is lacking on the differences between hospitalisation of people with dementia living in nursing homes and those living in the community. The objectives of this study were: 1) to describe the frequency of hospital admission among people with dementia in eight European countries living in nursing homes or in the community, 2) to examine the factors associated with hospitalisation in each setting, and 3) to evaluate the costs associated with it. METHODS: The present study is a secondary data analysis of the RightTimePlaceCare European project. A cross-sectional survey was conducted with data collected from people with dementia living at home or who had been admitted to a nursing home in the last 3 months, as well as from their caregivers. Data on hospital admissions at 3 months, cognitive and functional status, neuropsychiatric symptoms, comorbidity, polypharmacy, caregiver burden, nutritional status, and falls were assessed using validated instruments. Multivariate regression models were used to investigate the factors associated with hospital admission for each setting. Costs were estimated by multiplying quantities of resources used with the unit cost of each resource and inflated to the year 2019. RESULTS: The study sample comprised 1700 people with dementia living in the community and nursing homes. Within 3 months, 13.8 and 18.5% of people living in nursing homes and home care, respectively, experienced ≥1 hospital admission. In the nursing home setting, only polypharmacy was associated with a higher chance of hospital admission, while in the home care setting, unintentional weight loss, polypharmacy, falls, and more severe caregiver burden were associated with hospital admission. Overall, the estimated average costs per person with dementia/year among participants living in a nursing home were lower than those receiving home care. CONCLUSION: Admission to hospital is frequent among people with dementia, especially among those living in the community, and seems to impose a remarkable economic burden. The identification and establishment of an individualised care plan for those people with dementia with polypharmacy in nursing homes, and those with involuntary weight loss, accidental falls, polypharmacy and higher caregiver burden in the home care setting, might help preventing unnecessary hospital admissions.

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.

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.

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.

[Care planning for people with dementia on the margins of care between home care and nursing home: the balance of care approach in the RightTimePlaceCare project in Germany]. / Versorgungsplanung für Menschen mit Demenz am Übergang von der Häuslichkeit ins Pflegeheim: der "Balance-of-Care"-Ansatz im RightTimePlaceCare-Projekt in Deutschland.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: secondary analysis of RightTimePlaceCare data.

BACKGROUND: To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement. METHODS: Cross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis. RESULTS: The overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings. CONCLUSIONS: Proxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.

Potentially inappropriate medication among people with dementia in eight European countries.

Objectives: to 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. Methods: survey 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. Results: overall, 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. Conclusions: PIM 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.

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.