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AbstractBackgroundPeople with profound intellectual disabilities are a population with complex comorbidities. Total pain recognises the interconnectedness of aspects of pain; social, psychological, physical, emotional, spiritual. Pain is under‐recognised due to communication challenges and carers perceptions. This review's purpose is to synthesise current literature and provide guidance for future research and care.MethodsFive databases were searched in this mixed methods systematic review (Cinahl, Medline, Psycinfo, Web of Science, Scopus). Articles retrieved were reported via a PRISMA flow diagram. Quality appraisal utilised the mixed methods appraisal tool (MMAT). A convergent qualitative design was the method of data synthesis.ResultsData from 16 included articles generated four themes; Absent voices, reductionist assessment, pain intensity, valuing expertise. Data included physical pain only.ConclusionMultifaceted pain needs inclusion in research. Assessment must consider the unique expressions of pain by individuals with profound intellectual disabilities. A sharing of expertise may improve pain care.

International audience ; Many healthcare units are creating cloud strategies and migration plans in order to exploit the benefits of cloud based computing. This generally involves collaboration between healthcare specialists and data management researchers to create a new wave of healthcare technology and services. However, in many cases the technology pioneers are ahead of government policies as cloud based storage of healthcare data is not yet permissible in many jurisdictions. One approach is to store anonymised data on the cloud and maintain all identifying data locally. At login time, a simple protocol can be developed to allow clinicians to combine both sets of data for selected patients for the current session. However, the management of off-cloud identifying data requires a framework to ensure sharing and availability of data within clinics and the ability to share data between users in remote clinics. In this paper, we introduce the PACE healthcare architecture which uses a combination of Cloud and Peer-to-Peer technologies to model healthcare units or clinics where off-cloud data is accessible to all, and where exchange of data between remote healthcare units is also facilitated.

Many healthcare units are creating cloud strategies and mi- gration plans in order to exploit the benefits of cloud based computing. This generally involves collaboration between healthcare specialists and data management researchers to create a new wave of healthcare tech- nology and services. However, in many cases the technology pioneers are ahead of government policies as cloud based storage of healthcare data is not yet permissible in many jurisdictions. One approach is to store anonymised data on the cloud and maintain all identifying data locally. At login time, a simple protocol can be developed to allow clinicians to combine both sets of data for selected patients for the current session. However, the management of o↵-cloud identifying data requires a frame- work to ensure sharing and availability of data within clinics and the ability to share data between users in remote clinics. In this paper, we introduce the PACE healthcare architecture which uses a combination of Cloud and Peer-to-Peer technologies to model healthcare units or clin- ics where o↵-cloud data is accessible to all, and where exchange of data between remote healthcare units is also facilitated.

Background: There is an acknowledged urgent need to gather valid epidemiological data in Ireland that provides accurate and reliable estimates of current and future dementia prevalence and facilitates the development of effective dementia health and social policy. This study, commissioned by the Alzheimer Society of Ireland, examined the feasibility of developing a National Dementia Registry for Ireland. Methods: National and international patient registry literature was reviewed to identify registry functions, models, best-practice guidelines, and the legal, ethical, clinical, technology, and financial issues relevant to the creation of a dementia registry in Ireland. Following ethical approval, we conducted two focus groups with people with dementia and twenty-one expert interviews with representatives from Irish and UK research, health, and social care organisations, Irish patient registries and international dementia registries. Discussions followed an agreed structure, were audio-recorded, transcribed and analysed using inductive content analysis. Results: Six themes emerged from these analyses: registry function; registry data; data collection; data management; registry governance and legislation. Three cross-cutting superordinate themes were also identified: benefits and risks, barriers and facilitators, and dementia-specific challenges. Conclusion: These findings provide an evidence-base from which we draw key conclusions and recommend actions to develop a comprehensive National Dementia Registry for Ireland.

Background: There is an acknowledged lack of information about dementia in Ireland, including very poor coding of dementia across all care settings. Yet with dementia prevalence set to increase as our population ages, there is an urgent need to gather valid epidemiological data that provides accurate and reliable national estimates of current and future dementia prevalence, and facilitates the development of robust and effective dementia health and social policy (Cahill, O'Shea, & Pierce, 2012). This study, commissioned as part of the Alzheimer Society of Ireland evidence-based policy series, examined the feasibility of developing a national dementia register for Ireland. Methods: A rapid review of national and international patient registry literature was undertaken to identify registry functions, underlying design and process models, and best-practice guidelines for their development. A 'landscape analysis' identified the legal, ethical, clinical, technology, and financial issues relevant to the creation of an Irish dementia register. Following ethical approval, we conducted two focus groups with people with dementia and twenty-one expert stakeholder interviews with clinicians and with representatives from research, health, and social care organisations in Ireland and the UK, existing Irish patient registries, and international dementia registries. Discussions followed an agreed structure, were audio-recorded, transcribed, and analysed using inductive content analysis. Results: Common themes emerged from the literature and stakeholder discussions with regard to: registry function; benefits and risks; data collection; data management; governance; legislation; barriers and facilitators; Irish complexities; and best-practice. Conclusions: The results provide an evidence-base on which to progress the issue of improved recording structures for dementia in Ireland. Given the strategic approach the government is now taking to address research and information systems as part of the 2014 National Dementia Strategy, ...

Background: Access to formal dementia care services varies widely within and across European countries. This paper presents Irish data from one study within the Access to Timely Formal Care (Actifcare) JPND-funded research project. This study explored the professional experiences, and perceived barriers and facilitators in accessing formal home- and community-based health and social care from the perspectives of healthcare professionals and expert stakeholders in a unique position to influence dementia policy in Ireland. Methods: An exploratory qualitative design with purposive sampling was used. Three focus groups were conducted with healthcare professionals from a variety of backgrounds (n=18; years experience M=11.35, SD=7.22). One group took place in a rural setting, one in south and one in north Dublin. Seven interviews with policy and political decision makers also took place. Discussions followed an agreed structure, were audio-recorded, transcribed, and analysed using inductive content analysis. Results: Narratives revealed a wide range of themes describing barriers and facilitators for the use of formal dementia care at (1) an individual level – relating to every person involved, such as needs-focused care and capacity and rights; (2) a system level – relating to the health and social care system in Ireland, such as service design, service availability and case management; and (3) overarching aspects that were important on both levels, such as education, awareness, influence and community engagement. Conflicting views emerged between healthcare professionals regarding the most appropriate time for care, and among experts regarding the definition and location of any case management support. Conclusions: These findings are interpreted in the context of the 2014 National Dementia Strategy and they support the increasing body of evidence that highlights the very clear gaps that exist between the formal home- and community-based care that is available in Ireland, and the care advocated for by health ...

OBJECTIVE: To identify factors that predict admission to long‐term care (LTC) and mortality among community‐based, dependent older people in Ireland, who were in receipt of formal home support. METHODS: An audit was conducted of all community‐dwelling older adults receiving government funded home support during 2017 in the Dublin North Central, Health Service Executive administrative area. Data were extracted from the Common Summary Assessment Report (CSAR), a mandatory form used in the provision of home support. Multiple logistic regression analysis was used to examine the factors associated with admission to LTC and mortality, with the results presented as odds ratios (OR) and 95% confidence intervals. RESULTS: The audit comprised 1597 community‐dwelling older adults with a mean age of 83.3 (SD: 7.2) years. The prevalence of transition to LTC and mortality was 8% and 9%, respectively, during the 12‐month period. Factors significantly associated with admission to LTC were "cognitive dysfunction" [OR 2.10 (1.41‐3.14), P < .001] and the intensity of home support [OR 1.05 (1.01‐1.06), P < .003], as measured by weekly formal care hours. Physical dependency and advanced age (aged 95 years +) were significantly associated with mortality in this population (P < .001). CONCLUSION: "Cognitive dysfunction" and intensity of formal home support were associated with transition to LTC, while physical dependency and advanced age were associated with mortality. Investment in personalised, cognitive‐specific, services and supports are necessary to keep people with dementia and related cognitive impairments living at home for longer.

The project is supported through the following funding organizations under the aegis of JPND - www.jpnd.eu. Germany, Ministry of Education and Research, Ireland, Health research board, Italy, Ministry of Health, the Netherlands, The Netherlands organization for Health Research and Development, Sweden, The Swedish Research Council for Health, Working Life and Welfare, Norway, The Research Council of Norway, Portugal, Foundation for Science and Technology, (Fundação para a Ciência e Tecnologia (FCT - JPND-HC/0001/2012), United Kingdom, Economic and Social Research Council. JPND has read and approved of the protocol of the Actifcare study. ; Background: Previous 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. Methods: In a longitudinal cohort study conducted in eight European countries approximately 450 people with dementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). 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. Discussion: The 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. ; publishersversion ; published

Background:With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. Objective:To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. Methods:Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. Results:Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. Conclusion:We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.

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.

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.

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. ; publishersversion ; published

OBJECTIVE: Dementia has a multifactorial etiology, but the importance of individual health and lifestyle related risk factors is often uncertain or based on few studies. The goal of this paper is to identify the major modifiable risk factors for dementia as a first step in developing an effective preventive strategy and promoting healthy late life cognitive functioning. METHODS: A mixed-method approach combined findings from a systematic literature review and a Delphi consensus study. The literature search was conducted in PubMed and updated an earlier review by the United States National Institutes of Health from 2010. We reviewed the available evidence from observational epidemiological studies. The online Delphi study asked eight International experts to rank and weigh each risk factor for its importance for dementia prevention. RESULTS: Out of 3127 abstracts, 291 were included in the review. There was good agreement between modifiable risk factors identified in the literature review and risk factors named spontaneously by experts. After triangulation of both methods and re-weighting by experts, strongest support was found for depression,(midlife) hypertension, physical inactivity, diabetes, (midlife) obesity, hyperlipidemia, and smoking, while more research is needed for coronary heart disease, renal dysfunction, diet, and cognitive activity. CONCLUSIONS: Findings provide good support for several somatic and lifestyle factors and will be used to inform the design of a new multicenter trial into dementia prevention. ; The In-MINDD project is funded by the European Union Seventh Framework Programme (FP7/2007-2013) under grant agreement No. 304979 ("In-MINDD"). The project commenced in November 2012 and has a duration of three years. K. A. is funded by NHMRC Fellowship APP1002560. The ESPRIT Project is funded by a non-conditional grant from Novartis and the French National Research Agency (ANR).

OBJECTIVE: Dementia has a multifactorial etiology, but the importance of individual health and lifestyle related risk factors is often uncertain or based on few studies. The goal of this paper is to identify the major modifiable risk factors for dementia as a first step in developing an effective preventive strategy and promoting healthy late life cognitive functioning. METHODS: A mixed-method approach combined findings from a systematic literature review and a Delphi consensus study. The literature search was conducted in PubMed and updated an earlier review by the United States National Institutes of Health from 2010. We reviewed the available evidence from observational epidemiological studies. The online Delphi study asked eight International experts to rank and weigh each risk factor for its importance for dementia prevention. RESULTS: Out of 3127 abstracts, 291 were included in the review. There was good agreement between modifiable risk factors identified in the literature review and risk factors named spontaneously by experts. After triangulation of both methods and re-weighting by experts, strongest support was found for depression,(midlife) hypertension, physical inactivity, diabetes, (midlife) obesity, hyperlipidemia, and smoking, while more research is needed for coronary heart disease, renal dysfunction, diet, and cognitive activity. CONCLUSIONS: Findings provide good support for several somatic and lifestyle factors and will be used to inform the design of a new multicenter trial into dementia prevention. ; The In-MINDD project is funded by the European Union Seventh Framework Programme (FP7/2007-2013) under grant agreement No. 304979 ("In-MINDD"). The project commenced in November 2012 and has a duration of three years. K. A. is funded by NHMRC Fellowship APP1002560. The ESPRIT Project is funded by a non-conditional grant from Novartis and the French National Research Agency (ANR).

Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately (sic)17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.