Services and support for people with early-onset dementia and their unpaid carers

While dementia is usually associated with older people, it can affect younger people. If a diagnosis is made under age 65, this is referred to as so called early-onset or young-onset dementia. One estimate suggested that there were 15,000 younger people with dementia in the UK in 2007. This is likely to be a major underestimate by up to three times because of the way the data relies on referrals to services (Knapp and Prince 2007). Given the different place in the life course with family, financial and work responsibilities, the impacts can be particularly devastating and life changing for the whole family. A recent exploratory study undertaken in PSSRU investigated the current picture ‘on the ground’ from two differing perspectives: experiences of younger people diagnosed with a dementia and their unpaid carers, and of professionals (health, social and voluntary sector) in providing services and support for this group. We found that service availability and care pathways varied with degree of local service specialisation, and that client satisfaction was greatest where the family had an ongoing and supportive relationship with their local specialist clinical team. Financial constraints and low case numbers are the main barriers to establishing more specialist services

Postcard: Hand Written Message from a Daughter

This black and white printed postcard contains correspondence from a daughter to her mother. Handwriting is on the front and the back of the card.https://scholars.fhsu.edu/tj_postcards/2060/thumbnail.jp

Student teachers’ perceptions of reading and the teaching of reading: the implications for teacher education

This article reports on research which identified perceptions of reading and the teaching of reading held by trainee teachers and the impact on my provision as a teacher educator. It found that students’ past and present experiences of learning to read and being a reader influenced their perceptions of what reading is and of what it means to teach reading. As a teacher educator, I am not able to give students long experience of seeing children becoming readers, but I am able to give them richer experiences of reading in personally and culturally relevant contexts. This has implications for the nature of subject knowledge required by a student teacher of reading and the curriculum and practice of teacher education

Application Profile Development for Consortial Digital Libraries: An OhioLINK Case Study

In 2002, OhioLINK’s consortia of libraries recognized the need to restructure and standardize the metadata used in the OhioLINK Digital Media Center as a step in the development of a general purpose digital object re-pository. The authors explore the concept of digital object repositories and mechanisms used to develop complex data structures in a cooperative environment, report the findings and recommendations of the OhioLINK Data-base Management and Standards Committee (DMSC) Metadata Task Force, and identify lessons learned, ad-dressing data structures as well as data content standards. A significant result of the work was the creation of the OhioLINK Digital Media Center (DMC) Metadata Application Profile and the implementation of a core set of metadata elements and Dublin Core Metadata Element Set mappings for use in OhioLINK digital projects. The profile and core set of metatadata elements are described

Decision aids can support cancer clinical trials decisions: Results of a randomized trial

BACKGROUND. Cancer patients often do not make informed decisions regarding clinical trial participation. This study evaluated whether a web-based decision aid (DA) could support trial decisions compared with our cancer center’s website. METHODS. Adults diagnosed with cancer in the past 6 months who had not previously participated in a cancer clinical trial were eligible. Participants were randomized to view the DA or our cancer center’s website (enhanced usual care [UC]). Controlling for whether participants had heard of cancer clinical trials and educational attainment, multivariable linear regression examined group on knowledge, self-efficacy for finding trial information, decisional conflict (values clarity and uncertainty), intent to participate, decision readiness, and trial perceptions. RESULTS. Two hundred patients (86%) consented between May 2014 and April 2015. One hundred were randomized to each group. Surveys were completed by 87 in the DA group and 90 in the UC group. DA group participants reported clearer values regarding trial participation than UC group participants reported (least squares [LS] mean = 15.8 vs. 32, p < .0001) and less uncertainty (LS mean = 24.3 vs. 36.4, p = .025). The DA group had higher objective knowledge than the UC group’s (LS mean = 69.8 vs. 55.8, p < .0001). There were no differences between groups in intent to participate. CONCLUSIONS. Improvements on key decision outcomes including knowledge, self-efficacy, certainty about choice, and values clarity among participants who viewed the DA suggest web-based DAs can support informed decisions about trial participation among cancer patients facing this preference-sensitive choice. Although better informing patients before trial participation could improve retention, more work is needed to examine DA impact on enrollment and retention. IMPLICATIONS FOR PRACTICE: This paper describes evidence regarding a decision tool to support patients’ decisions about trial participation. By improving knowledge, helping patients clarify preferences for participation, and facilitating conversations about trials, decision aids could lead to decisions about participation that better match patients’ preferences, promoting patient-centered care and the ethical conduct of clinical research

Direct Payments in Residential Care Trailblazer Programme Evaluation Preliminary report

This report is the first from the independent evaluation of the ‘trailblazers’. It is based on a scoping study carried out over the summer and autumn of 2013 consisting of a literature review, documentary analysis, interviews (June-September), collation of routine data and collection of descriptive data from trailblazers on their schemes for DPs