Quality of life (QoL) is recognized as an essential end point in the disease management of chronic conditions such as HIV with calls to include good QoL as a 'fourth 90' in the 90-90-90 testing and ...treatment targets introduced by World Health Organization in 2016. Cognitive impairments impact a broad spectrum of experiences and are a common issue effecting people living with HIV (PLWH). Despite this, few studies have examined QoL in PLWH who also have a cognitive disorder. This study aimed to synthesize and describe what is known about QoL in those living with HIV-associated neurocognitive disorders (HAND). A scoping review of peer-reviewed literature was conducted to identify how QoL has been investigated and measured in PLWH with HAND, and how PLWH with HAND report and describe their QoL. We searched PsychInfo, Medline, Scopus, and Web of Science along with hand-searching reference lists from relevant studies found. Included studies were those published in English after 1st January 2003 which included PLWH with cognitive impairment not due to other pre-existing conditions. Fifteen articles met criteria for inclusion. Two studies measured QoL as a primary aim, with others including QoL assessment as part of a broader battery of outcomes. The MOS-HIV and SF-36 were the most commonly used measures of overall QoL, with findings generally suggestive of poorer overall QoL in PLWH with HAND, compared to PLWH without cognitive impairment. Studies which examined dimensions of QoL focused exclusively on functionality, level of independence, and psychological QoL domains. There is a considerable dearth of research examining QoL in PLWH with HAND. The initiatives which advocate for healthy aging and improved QoL in PLWH must be extended to include and understand the experiences those also living with cognitive impairment. Research is needed to understand the broad experiential impacts of living with these two complex, chronic conditions, to ensure interventions are meaningful to patients and potential benefits are not missed.
Abstract
Background
People with intellectual disabilities are a marginalized group whose health experiences and outcomes are poor. Lack of skill and knowledge in the healthcare workforce is a ...contributing factor. In England, there is a new legislative requirement for mandatory intellectual disability training to be given to the existing healthcare workforce, including doctors. There is a lack of evidence about effective models of educational delivery of such training in medical schools. We undertook a scoping review to assess the range of intellectual disabilities educational interventions and their effectiveness.
Methods
We included any study from 1980 onwards which reported an educational intervention on intellectual disability, or intellectual disability and autism, for medical students from any year group. Databases searched included PUBMED, ERIC, Scopus and Web of Science as well as searches of grey literature and hand searching two journals (Medical Education and Journal of Learning Disabilities). 2,020 records were extracted, with 1,992 excluded from initial screening, and a further 12 excluded from full-text review, leaving 16 studies for inclusion. Data was extracted, quality assessed, and findings collated using narrative analysis.
Results
We found a variety of intervention types: classroom-based teaching, simulation, placement, home visits, and panel discussions. There was substantial variation in content. Most studies involved lived experience input. Across studies, interventions had different learning outcomes which made it difficult to assess effectiveness. Overall study quality was poor, with high use of non-validated measures, making further assessment of effectiveness problematic.
Conclusions
There is a need for more consistency in intervention design, and higher quality evaluation of teaching in this area. Our review has drawn attention to the variety in teaching on this topic area and further research should focus on updating this review as curriculum changes are implemented over time.
A current issue in workforce planning is ensuring healthcare professionals are both competent and willing to work with older adults with complex needs. This includes dementia care, which is widely ...recognised as a priority. Yet research suggests that working with older people is unattractive to undergraduate healthcare students.
The aim of this systematic review and narrative synthesis is to explore the factors related to healthcare (medical and nursing) student preferences' for working with older people and people with dementia. Searches were conducted in five databases: MEDLINE, PsycINFO, CINHAL, BNI, ERIC. Screening, data extraction and quality appraisal were conducted by two independent reviewers. A narrative, data-based convergent synthesis was conducted.
One thousand twenty-four papers were screened (139 full texts) and 62 papers were included for a narrative synthesis. Factors were grouped into seven categories; student characteristics, experiences of students, course characteristics, career characteristics, patient characteristics, work characteristics and the theory of planned behaviour.
Health educators should review their role in cultivating student interest in working with older adults, with consideration of student preparation and the perceived value of this work. There is a lack of evidence about the career preferences of students in relation to dementia, and this warrants further research.
Frailty is widely recognised as a distinct multifactorial clinical syndrome that implies vulnerability. The links between frailty and adverse outcomes such as death and institutionalisation have been ...widely evidenced. There is currently no gold standard frailty assessment tool; optimizing the assessment of frailty in older people therefore remains a research priority. The objective of this systematic review is to identify existing multi-component frailty assessment tools that were specifically developed to assess frailty in adults aged ≥60 years old and to systematically and critically evaluate the reliability and validity of these tools.
A systematic literature review was conducted using the standardised COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist to assess the methodological quality of included studies.
Five thousand sixty-three studies were identified in total: 73 of which were included for review. 38 multi-component frailty assessment tools were identified: Reliability and validity data were available for 21 % (8/38) of tools. Only 5 % (2/38) of the frailty assessment tools had evidence of reliability and validity that was within statistically significant parameters and of fair-excellent methodological quality (the Frailty Index-Comprehensive Geriatric Assessment FI-CGA and the Tilburg Frailty Indicator TFI).
The TFI has the most robust evidence of reliability and validity and has been the most extensively examined in terms of psychometric properties. However, there is insufficient evidence at present to determine the best tool for use in research and clinical practice. Further in-depth evaluation of the psychometric properties of these tools is required before they can fulfil the criteria for a gold standard assessment tool.
Objective
National and global dementia plans have focused on the research ambition to develop a cure or disease‐modifying therapy by 2025, with the initial focus on investment in drug discovery ...approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them.
Methods
Alzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research.
Results
The taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10‐point action plan provides strategies for delivering the proposed research agenda.
Conclusions
By creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families.
As the numbers of people with dementia worldwide rises, there is a need for improved knowledge and awareness about the condition across the healthcare workforce. There are concerns that traditional ...models of healthcare education, which focus on short-term episodes of care, limit student understanding of long-term conditions. We therefore designed and delivered the Time for Dementia programme at five Universities in the UK. Through longitudinal contact with families living with dementia, healthcare students gain increased understanding about the experiences of living with dementia. However, implementing new educational models brings challenges. To enable implementation of similar programmes in other educational institutions, this study aimed to identify the common barriers and facilitators of implementing these types of longitudinal programmes at scale.
To understand the facilitators and barriers of implementing a longitudinal dementia educational programme, a qualitative study was completed. Between October and December 2018, twelve in-depth semi-structured interviews were completed with university teaching staff (n = 6), programme administrators (n = 4), and Alzheimer's Society staff (n = 2) that had key responsibilities for implementing Time for Dementia. Interview questions explored participants experiences, the facilitators, and the challenges encountered when implementing the programme. Interviews were audio recorded, transcribed verbatim, and analysed using inductive thematic analysis.
The analysis identified five key themes: "Leadership characteristics", "Organisational and student buy-in", "Perceived value and motivating factors", "Team coalition and support", and "Time and fit". Implementation of the programme was enhanced by resilient leaders managing the challenges of curricular change. Their belief in the value of the programme, stakeholder buy-in, and supportive team working enabled challenges to be overcome. Workload was reduced and student buy-in increased as time progressed and as more resources became available. A flexible approach to implementation was recommended to ensure the programme fits within the established curriculum.
Curricular change is a challenging task, yet necessary, if we are to improve care for people with long term conditions such as dementia. This study highlights the common barriers and facilitators experienced when implementing a longitudinal educational programme at scale. The findings presented in this study can be used by other educational institutions to manage curricular change efforts.
COVID-19 has placed unprecedented pressure on dementia health and social care systems worldwide. This has resulted in reduced services and support for people with dementia and their family carers. ...There are gaps in the evidence on the impact of the pandemic on Quality of Life (QoL). We carried out a study on the impact of the pandemic on the QoL of a group of people with dementia and their family carers who were part of a larger existing cohort study.
We quantitatively measured QoL, on two occasions during the two national lockdowns in 2020 and compared these data with those obtained when they entered the study (before the pandemic). Measures used included: DEMQOL-Proxy, Clinical Dementia Rating Scale and C-DEMQOL. To understand how QoL changed over time, a repeated measures ANOVA was run for each dependent variable with the following variables entered as co-variates: duration in study, baseline dementia severity, gender of the family carer, gender of the person with dementia, family carer relationship, dementia type, living status, age of the person with dementia, and age of the family carer.
248 participants took part in the study. QoL scores did not significantly decline between either time period for the person with dementia or their family carer. There was variation in subgroups; with co-resident status, carer relationship, gender of the person with dementia, age of the person with dementia, and baseline cognitive status influencing QoL outcomes in family carers.
It is striking that people with dementia and their carers did not report a decline in QoL during the pandemic or in the months following restrictions suggesting the possibility of resilience. Variation in subgroups suggests that specific groups of family carers were more vulnerable to lower QoL; indicating the need for more tailored, nuanced support during this period.
Compassion is an essential component of good quality care. Compassion towards people with dementia in health systems is often suboptimal, which can have negative impacts on clinical outcomes and ...patient experience. Attitudes are formed early in training and the literature on healthcare student compassion towards those with dementia is limited. This study aimed to understand how undergraduate medical and nursing students understand compassion towards people with dementia and factors influencing the delivery of compassionate care.
Nine individual in-depth interviews and two focus groups were undertaken with 23 medical and nursing students. A topic guide was developed, and transcripts were analysed using thematic analysis.
The analysis identified three themes which students used to define compassion: (i) connection, (ii) care, and (iii) respect. Three factors were identified as being either facilitators or barriers to delivering compassionate care to people with dementia: (i) patient factors, (ii) student factors, and (iii) connection. Patient factors related to the presence of behaviours which might be challenging to manage. Student factors included student exposure to dementia, as well as student knowledge and skills. Connection focussed on whether there was an awareness and understanding of the person behind the diagnosis.
Undergraduate healthcare students are the future workforce for patients with dementia, and understanding how compassion develops within them is important. We found medical and nursing students had a broad understanding of compassion, and identified factors influence their compassion towards people with dementia. These novel data can be used to shape healthcare education programmes aimed at improving dementia care.
This study aimed to explore factors that positively influence UK medical students' interest in psychiatry. Delegates and committee members of the National Student Psychiatry Conference 2018 were ...invited to participate in individual semi-structured interviews. Nine interviews were conducted. Qualitative data were analysed using thematic analysis.
Four core themes emerged: psychiatry education and exposure, role of a psychiatrist, fitting in, and factors external to medical school. All students had some degree of interest in mental health before medical school, but placement and extra-curricular factors were strongly influential.
Interest in psychiatry may be promoted by facilitating student exposure to enthusiastic psychiatrists and psychiatry subspecialties, encouraging extra-curricular activities and identifying early those with pre-existing interest in mental health on admission to medical school. Aspects of psychiatry that should be promoted include the potential to make a positive difference to patients' lives and the teamworking elements of the specialty.
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