Intellectual disabilities teaching for medical students: a scoping review

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.</p

Intellectual disabilities teaching for medical students: a scoping review

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.</p

Excel calculator for the DEMQOL, DEMQOL-Proxy and DEMQOL-CH patient reported output measure.

This is an excel calculator for the DEMQOL, DEMQOL-Proxy and DEMQOL-CH to allow interested parties to use the instruments without the need for specialist software (e.g. SPSS). Open the calculator for instructions on how to use it.DEMQOL is a patient reported outcome measure (PROM) which is designed to enable the assessment health-related quality of life of people with dementia.It was developed according to best quality psychometric principles by a multidisciplinary team including BSMS, KCL, the London School of Hygiene and Tropical Medicine, the London School of Economics and Nottingham and Sheffield Universities. DEMQOL is designed to work across dementia subtypes and care arrangements and can be used at all stages of dementia. The measure consists of two questionnaires.1) DEMQOL is a 28 item interviewer-administered questionnaire answered by the person with dementia.2) DEMQOL-Proxy is a 31 item interviewer-administered questionnaire answered by a caregiver.In the majority of studies, DEMQOL and DEMQOL-Proxy are used together. Since its original development, the DEMQOL-CH has been adapted from the DEMQOL-Proxy for use within care homes to be completed by care home staff without interview. The DEMQOL-CH has the same items as the DEMQOL-Proxy, but the questionnaire formating has been adapted.See below link for more information about the calculator.</div

Health-related quality of life in people living with HIV with cognitive symptoms: assessing relevant domains and associations

This study aimed to validate and assess a comprehensive set of illness-specific health-related quality of life (HRQL) domains in people living with HIV (PLWH) with cognitive symptoms. One hundred and three HIV patients with cognitive symptoms (n?=?93 male, 90.3%) were identified from two UK HIV clinics and complete a series of validated scales measuring seven HRQL domains identified as important to HRQL by PLWH with cognitive impairment. These included: physical functioning, cognition, social connectedness, self-concept, HIV stigma, acceptance of and perceived control over cognitive health, and physical and mental health and wellbeing. Exploratory factor analysis confirmed that domain total scores loaded onto one main factor, representing HRQL. Scale cut-off scores revealed a significant proportion of patients scored outside the normal range on single domains (between 26.2% and 79.6%), and many patients on multiple domains (40.8% on 4 or more domains). We found evidence of poor HRQL across domains in the majority of PLWH with cognitive symptoms and identified domains driving these experiences. This provides targets for intervention development and clinical action to maintain or improve HRQL in PLWH with cognitive symptoms or impairment

Time for Dementia: quantitative evaluation of a dementia education programme for healthcare students.

OBJECTIVES: The future healthcare workforce needs the skills, attitudes, and empathy to better meet the needs of those with dementia. Time for Dementia (TFD) is an educational programme in which healthcare students from a range of professional groups visit a person with dementia and their family carer over a two-year period. The aim of this study was to evaluate its impact on student attitudes, knowledge and empathy towards dementia. METHODS: Measures of dementia knowledge, attitudes and empathy were administered to healthcare students at five universities in the south of England before and after (24 months) they completed the TFD programme. Data were also collected at equivalent time points for a control group of students who had not taken part in the programme. Outcomes were modelled using multilevel linear regression models. RESULTS: 2,700 intervention group students, and 562 control group students consented to participate. Students undertaking the TFD programme had higher levels of knowledge and positive attitudes at follow-up compared to equivalent students who did not undertake the programme. Our findings indicate a positive relationship between the number of visits undertaken and increasing dementia knowledge and attitudes. No substantial differences in the development of empathy was observed between groups. CONCLUSION: Our findings suggest that TFD may be effective across professional training programmes and universities. Further research into the mechanisms of action is needed

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers

Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic. Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.</p

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers

Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic. Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.</p

Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic

Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using 'positive' styles and the protective use of 'negative' disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support

Dementia wellbeing and COVID-19: review and expert consensus on current research and knowledge gaps

Objectives In response to a commissioned research update on dementia during the COVID-19 pandemic, a UK-based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research. Methods We supplemented a rapid literature search (including unpublished, non-peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID-19 with expert group members' consensus about future research needs. From this we generated potential research questions the group judged to be relevant that were not covered by the existing literature. Results Themes emerged from 141 studies within the six domains of the NHS England COVID-19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. We describe current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population-representative longitudinal studies to monitor longer-term impacts, and the importance of reporting dementia-related findings within broader health and care studies. Conclusions The COVID-19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding questions to develop evidence-based measures to improve the quality of life of people affected by dementia