19 research outputs found
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Differential surface activation of the A1 domain of von Willebrand factor
The clotting protein von Willebrand factor (VWF) binds to platelet receptor glycoprotein Ibα (GPIbα) when VWF is activated by chemicals, high shear stress, or immobilization onto surfaces. Activation of VWF by surface immobilization is an important problem in the failure of cardiovascular implants, but is poorly understood. Here, the authors investigate whether some or all surfaces can activate VWF at least in part by affecting the orientation or conformation of the immobilized GPIbα-binding A1 domain of VWF. Platelets binding to A1 adsorbed onto polystyrene surfaces translocated rapidly at moderate and high flow, but detached at low flow, while platelets binding to A1 adsorbed onto glass or tissue-culture treated polystyrene surfaces translocated slowly, and detached only at high flow. Both x-ray photoelectron spectroscopy and conformation independent antibodies reported comparable A1 amounts on all surfaces. Time-of-flight secondary ion mass spectrometry (ToF-SIMS) and near-edge x-ray absorption fine structure spectra suggested differences in orientation on the three surfaces, but none that could explain the biological data. Instead, ToF-SIMS data and binding of conformation-dependent antibodies were consistent with the stabilization of an alternative more activated conformation of A1 by tissue culture polystyrene and especially glass. These studies demonstrate that different materialsurfaces differentially affect the conformation of adsorbed A1 domain and its biological activity. This is important when interpreting or designing in vitro experiments with surface-adsorbed A1 domain, and is also of likely relevance for blood-contacting biomaterials
Rehabilitation services for young-onset dementia: examples from high- and lowâmiddle-income countries
The WHO Dementia Global Action Plan states that rehabilitation services for dementia are required to promote health, reduce disability, and maintain quality of life for those living with dementia. Current services, however, are scarce, particularly for people with young-onset dementia (YOD). This article, written by an international group of multidisciplinary dementia specialists, offers a three-part overview to promote the development of rehabilitation services for YOD. Firstly, we provide a synthesis of knowledge on current evidence-based rehabilitative therapies for early-onset Alzheimerâs disease (EOAD), behavioural variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA), and posterior cortical atrophy (PCA). Secondly, we discuss the characteristics of rehabilitation services for YOD, providing examples across three continents for how these services can be embedded in existing settings and the different roles of the rehabilitation multidisciplinary team. Lastly, we conclude by highlighting the potential of telehealth in making rehabilitation services more accessible for people with YOD. Overall, with this paper, we aim to encourage clinical leads to begin introducing at least some rehabilitation into their services, leveraging existing resources and finding support in the collective expertise of the broader multidisciplinary dementia professional community
Beyond the project: building a strategic theory of change to address dementia care, treatment and support gaps across seven middle-income countries
Evidence from middle-income countries indicates high and increasing prevalence of dementia and need for services. However, there has been little investment in care, treatment or support for people living with dementia and their carers. The Strengthening Responses to Dementia in Developing Countries (STRiDE) project aims to build both research capacity and evidence on dementia care and services in Brazil, Indonesia, India, Jamaica, Kenya, Mexico and South Africa. This article presents the Theory of Change (ToC) approach we used to co-design our research project and to develop a strategic direction for dementia care, treatment and support, with stakeholders. ToC makes explicit the process underlying how a programme will achieve its impact. We developed ToCs in each country and across the STRiDE project with researchers, practitioners, people living with dementia, carers and policymakers at different levels of government. This involved (1) an initial ToC workshop with all project partners (43 participants); (2) ToC workshops in each STRiDE country (22â49 participants in each); (3) comparison between country-specific and overall project ToCs; (4) review of ToCs in light of WHO dementia guidelines and action plan and (5) a final review. Our experiences suggest ToC is an effective way to generate a shared vision for dementia care, treatment and support among diverse stakeholders. However, the project contribution should be clearly delineated and use additional strategies to ensure appropriate participation from people living with dementia and their carers in the ToC process
Equation of state of stishovite and interpretation of SiO 2 shockâcompression data
Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/95606/1/jgrb13349.pd
Typologies of caregiving: Understanding support needs of carers across four continents
Background
Caregivers play an essential role in supporting people living with Alzheimerâs disease globally. Cross-country research on caregiversâ experiences of coping is a prerequisite to developing useful trans-cultural guidelines for support organisations. While some coping strategies of caregivers globally have been identified, these are neither well understood or elaborated, nor linked effectively into carer support offerings.
Methods
In partnership with Alzheimerâs Disease International (ADI) and Roche, we conducted in-depth qualitative interviews with photo-elicitation with 34 caregivers from UK, US, Brazil, and South Africa to understand critical factors in coping during and after the pandemic. Inductive narrative analysis of data and participant generated images coded to dominant themes (Relationships and Caring role) were developed with input from global and national charity and industry sectors.
Results
We uncovered four caregiving styles: Empaths used emotion-focused strategies to construct their caring role ('put yourself in that personâs shoesâ). They tended to develop strong coping skills, but needed psychosocial support and time specific information. Organisers used problem-focused strategies and sought information and training early on ('Iâm a pretty good expert nowâ). They developed strong narratives of organisation, advocacy and expertise. Non-identifiers managed some aspects of the caring role but felt isolated and lacked knowledge and expertise ('do everything I canâŠthereâs nobody elseâ). They sought others to manage disease related support. Reluctants struggled with unwanted caring duties ('I didnât sign up for thisâ). They needed support in coming to terms with their loved oneâs diagnosis and professional help with the day-to-day caring role.
Conclusion
Our findings highlight the need for tailored user-driven support offerings, that begin with the individual carerâs experiences and needs. Our typology will be used in the communication and development of findings and best practice guidelines to inform charities and policy makers about cost effective ways of tailoring support to fit individual carer circumstances globally
Impact and Mortality of COVID-19 on People Living With Dementia: Cross-Country Report
This report brings together international evidence on the impact of the COVID-19 pandemic on people living with dementia and an overview of international policy and practice measures to mitigate the impact of COVID-19 among people living with dementia.
Key Findings We have collected data on impact and mortality of COVID-19 in people living with dementia in 9 countries: The United Kingdom (UK), Spain, Ireland, Italy, Australia, the United States (US), India, Kenya and Brazil. The share of people whose deaths were linked to COVID-19 in care homes who had dementia ranges from 29% to 75% across those countries. Within countries, people with dementia account for 25% of all COVID-19 related deaths in England and Wales, 31% in Scotland and 19% in Italy. We did not find nation-level data for the rest of the countries. The high rates of deaths in people living with dementia seem to be linked to death rates in care homes, where many residents have dementia. Direct comparison between countries is not possible due to differences in systems of information: the types of data collected and ways in which they are reported, metrics used and varying definitions of COVID-19 cases and care home facilities. The different approaches to collecting and reporting data across different administrative or autonomous regions within the same nation also hinders the extraction of national-level figures in some countries (e.g. the 4 countries in the UK, the 17 Autonomous Communities in Spain and the different administrative regions in Italy). In many places, the basic human rights of people with dementia may have been compromised during the pandemic. These rights include access to Intensive Care Units, hospital admissions, health care and palliative care. The controversial ban on visits (including spouses and care partners) to care homes across the world, have kept people with dementia detached from essential affective bonds and provision of family care for many months. There is now a pressing need and also an opportunity for innovation, looking at new ways of providing services such as allowing visits to care homes and access to healthcare. Excellent examples of both are contained in this report. Guidelines and tools to support institutions and practitioners to respond better to the needs of people with dementia during the pandemic are needed as a matter of urgency. Confinement, isolation and many of the challenges brought about by the pandemic are detrimental to the cognitive and mental health symptoms in people with dementia across the world, both those living in the community and care homes1 . This report offers a list of short-term and long-term actions needed to ensure that people with dementia are not being left behind in this pandemic or future ones
Dementia-related stigma among health professionals, family carers, people with dementia, and the general public in Brazil.
People living with dementia often experience stigma and discrimination. There is a dearth of research on this topic in low- and middle-income countries, where the majority of people living with dementia reside. We conducted a secondary analysis of an international database from Alzheimerâs Disease International on the knowledge and attitudes toward people living with dementia among four groups: carers, health professionals, people living with dementia, and the general public. We used data from Brazil (n = 2,907), explored the levels and types of stigma and discrimination among the different groups, and used logistic regression to identify participantsâ sociodemographic characteristics related to the different stigmaâs domains. Some of the most significant findings are: One in three health professionals believes dementia is a natural part of aging and that it is not important to provide a formal/explicit diagnosis for people living with dementia, more than half of the general public believe that other people do not want to be friends with people living with dementia, nearly 32% of carers believe that individuals living with dementia pose a danger to other people, and more than 30% of carers and health professions consider that there is a dearth of reliable sources of information about dementia. Different forms of stigma were identified in the four groups. Further studies should be carried out to explore other sectors of the population with representation of the different cultural and socioeconomic settings that comprise Brazilian society
Outcomes of clinical utility in amyloid-PET studies: state of art and future perspectives
Purpose: To review how outcomes of clinical utility are operationalized in current amyloid-PET validation studies, to prepare for formal assessment of clinical utility of amyloid-PET-based diagnosis. Methods: Systematic review of amyloid-PET research studies published up to April 2020 that included outcomes of clinical utility. We extracted and analyzed (a) outcome categories, (b) their definition, and (c) their methods of assessment. Results: Thirty-two studies were eligible. (a) Outcome categories were clinician-centered (found in 25/32 studies, 78%), patient-/caregiver-centered (in 9/32 studies, 28%), and health economics-centered (5/32, 16%). (b) Definition: Outcomes were mainly defined by clinical researchers; only the ABIDE study expressly included stakeholders in group discussions. Clinician-centered outcomes mainly consisted of incremental diagnostic value (25/32, 78%) and change in patient management (17/32, 53%); patient-/caregiver-centered outcomes considered distress after amyloid-pet-based diagnosis disclosure (8/32, 25%), including quantified burden of procedure for patientsâ outcomes (n = 8) (1/8, 12.5%), impact of disclosure of results (6/8, 75%), and psychological implications of biomarker-based diagnosis (75%); and health economics outcomes focused on costs to achieve a high-confidence etiological diagnosis (5/32, 16%) and impact on quality of life (1/32, 3%). (c) Assessment: all outcome categories were operationalized inconsistently across studies, employing 26 different tools without formal rationale for selection. Conclusion: Current studies validating amyloid-PET already assessed outcomes for clinical utility, although non-clinician-based outcomes were inconsistent. A wider participation of stakeholders may help produce a more thorough and systematic definition and assessment of outcomes of clinical utility and help collect evidence informing decisions on reimbursement of amyloid-PET
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Outcomes of clinical utility in amyloid-PET studies: state of art and future perspectives.
PurposeTo review how outcomes of clinical utility are operationalized in current amyloid-PET validation studies, to prepare for formal assessment of clinical utility of amyloid-PET-based diagnosis.MethodsSystematic review of amyloid-PET research studies published up to April 2020 that included outcomes of clinical utility. We extracted and analyzed (a) outcome categories, (b) their definition, and (c) their methods of assessment.ResultsThirty-two studies were eligible. (a) Outcome categories were clinician-centered (found in 25/32 studies, 78%), patient-/caregiver-centered (in 9/32 studies, 28%), and health economics-centered (5/32, 16%). (b) Definition: Outcomes were mainly defined by clinical researchers; only the ABIDE study expressly included stakeholders in group discussions. Clinician-centered outcomes mainly consisted of incremental diagnostic value (25/32, 78%) and change in patient management (17/32, 53%); patient-/caregiver-centered outcomes considered distress after amyloid-pet-based diagnosis disclosure (8/32, 25%), including quantified burden of procedure for patients' outcomes (n = 8) (1/8, 12.5%), impact of disclosure of results (6/8, 75%), and psychological implications of biomarker-based diagnosis (75%); and health economics outcomes focused on costs to achieve a high-confidence etiological diagnosis (5/32, 16%) and impact on quality of life (1/32, 3%). (c) Assessment: all outcome categories were operationalized inconsistently across studies, employing 26 different tools without formal rationale for selection.ConclusionCurrent studies validating amyloid-PET already assessed outcomes for clinical utility, although non-clinician-based outcomes were inconsistent. A wider participation of stakeholders may help produce a more thorough and systematic definition and assessment of outcomes of clinical utility and help collect evidence informing decisions on reimbursement of amyloid-PET
Clinical research in dementia: A perspective on implementing innovation
The increasing global prevalence of dementia demands concrete actions that are aimed strategically at optimizing processes that drive clinical innovation. The first step in this direction requires outlining hurdles in the transition from research to practice. The different parties needed to support translational processes have communication mismatches; methodological gaps hamper evidence-based decision-making; and data are insufficient to provide reliable estimates of long-term health benefits and costs in decisional models. Pilot projects are tackling some of these gaps, but appropriate methods often still need to be devised or adapted to the dementia field. A consistent implementation perspective along the whole translational continuum, explicitly defined and shared among the relevant stakeholders, should overcome the "research-versus-adoption" dichotomy, and tackle the implementation cliff early on. Concrete next steps may consist of providing tools that support the effective participation of heterogeneous stakeholders and agreeing on a definition of clinical significance that facilitates the selection of proper outcome measures