Participatory development of a home-based depression care model with lived experience older Nigerians and their caregivers: A theory of change.

OBJECTIVES: There is a huge treatment gap for late-life depression in sub-Saharan Africa. Building on prior work to scale-up mental healthcare with the aid of the WHO Mental Health Gap Action Programme Intervention Guide electronic version (emhGAP-IG), this study aims to involve older people in the iterative development of innovations to overcome challenges in the detection and clinical management of late-life depression by frontline non-specialist primary healthcare workers (PHCW) in Nigeria. METHODS: There were 43 participants in the study. We conducted formative qualitative research using 15 in-depth key informant interviews with persons who were 60 years or older and had a recent experience of depression. We also conducted two focus group discussions comprising 13 of their caregivers. Through a full day stakeholders workshop comprising 15 participants, we drew on the results of our qualitative explorations to identify the pathway to impact of an intervention package (emhGAP-Age) appropriate for the specific needs of persons with late-life depression in Nigeria. RESULTS: A Theory of Change (ToC) map was produced. It highlights the expected long-term outcomes of emhGAP-Age to include the potential for improvement of the mental health and wellbeing of older people living in Nigeria and the generation of interest among governmental agencies concerned with policy and planning for mental healthcare. Key resources that serve as preconditions were identified to consist of the availability of PHCW who are skilled in the identification and treatment of depression and have interest in and commitment to providing care to older people. Required community resources include support from immediate family, neighbours, and informal groups. Interventions that are appropriate for depression in old age need to incorporate these community resources and address not only the symptoms of the condition but also comorbid physical health problems. CONCLUSIONS: A participatory ToC process led to the identification of the key components of an age-appropriate version of the emhGAP-IG for delivering care to older persons with depression by PHCW in Nigeria.

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.

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.

Preferences of newly qualified healthcare professionals for working with people with dementia: a qualitative study.

BACKGROUND: there is little research on preferences in students and newly qualified healthcare professionals for working with people with dementia. Understanding the development of these preferences can help inform strategies to increase workforce capacity in response to current suboptimal dementia care and the increasing numbers of people with dementia. OBJECTIVE: to explore the factors that influence career preferences in relation to working with people with dementia. Specifically, to understand how these factors relate to early career doctors' and nurses' preferences and how they influence decisions and perspectives on their careers. METHODS: qualitative in-depth interviews were conducted with 27 newly qualified doctors and nurses within 2 years of graduation. This included a subset of participants that had taken part in a dementia educational intervention during their undergraduate training. Transcripts were analysed using grounded theory methods. RESULTS: the results present six main categories representing complex interlinked factors influencing preferences for working with people with dementia as well as exploring the definition of a career working with people with dementia. The factors include the importance of making a difference; seeing dementia care as a different type of care; its perceived alignment with personal characteristics; perceptions of people with dementia; care environments and career characteristics. DISCUSSION: this is the first study to explore the factors influencing preferences for working with people with dementia in newly qualified healthcare professionals. It provides useful data to inform workforce planning, and curriculum and practice development to stimulate interest and drive improved quality of care.

"A fog that impacts everything": a qualitative study of health-related quality of life in people living with HIV who have cognitive impairment.

BACKGROUND: Cognitive impairment (CI) in people living with HIV (PLWH) is an important health concern in the context of an ageing HIV population. Impacting 14-28% of PLWH, CI is associated with lower health-related quality of life (HRQoL), however, evaluation of the illness-specific factors comprising HRQoL in PLWH with CI have not been assessed. OBJECTIVE: We sought to contribute evidence toward an understanding of HRQoL and identify domains of HRQoL in PLWH with CI. METHODS: Qualitative interviews with 25 PLWH with objective CI related to HIV disease were conducted with participants attending HIV clinics in the UK. Clinically significant CI was defined based on The European AIDS Clinical Society guidelines, requiring: (i) subjective reporting of cognitive symptoms; (ii) symptoms to be related to HIV (e.g. potentially confounding non-HIV related conditions have been excluded or are being optimally managed) and; (iii) formal neuropsychological assessment confirming CI. Median age was 56 years (range 35-80); 18 participants were men (72%); 11 (44%) were white British and 8 (32%) were Black African; 14 (56%) were men that have sex with men and 10 (40%) were heterosexual; median number of years living with HIV was 17 (range 1-34); and all participants were on combination antiretroviral therapy. Analyses employed techniques from grounded theory, underpinned by an inductive, collaborative team-based approach. RESULTS: Findings revealed seven interrelated domains comprising HRQoL experiences were identified: Physical function, Cognition, Social connectedness, Physical and mental health, Stigma, Self-concept, and Control and acceptance, and each was defined by specific descriptive components. CONCLUSION: This study provides valuable insights on the factors that drive HRQoL in PLWH with CI and contribute to a body of evidence which provides targets for the development of targeted interventions to maintain or improve quality of life.

A comparative study of the effect of the Time for Dementia programme on medical students.

BACKGROUND: Traditional healthcare education typically focuses on short block clinical placements based on acute care, investigations and technical aspects of diagnosis and treatment. It may therefore fail to build the understanding, compassion and person-centred empathy needed to help those with long-term conditions, like dementia. Time for Dementia was developed to address this. METHOD: Parallel group comparison of two cohorts of UK medical students from universities, one participating in Time for Dementia (intervention group) and one not (control group). In Time for Dementia students visit a person with dementia and their family in pairs for 2 hours three times a year for 2 years, the control group received their normal curriculum. RESULTS: In an adjusted multilevel model (intervention group n = 274, control n = 112), there was strong evidence supporting improvements for Time for Dementia participants in: total Approaches to Dementia Questionnaire score (coefficient: 2.19, p = 0.003) and its person-centredness subscale (1.32, p = 0.006) and weaker evidence in its hopefulness subscale (0.78, p = 0.070). There was also strong evidence of improvement in the Dementia Knowledge Questionnaire (1.63, p < 0.001) and Dementia Attitudes Scale (total score: 6.55, p < 0.001; social comfort subscale: 4.15, p < 0.001; dementia knowledge subscale: 3.38, p = 0.001) scores. No differences were observed on the Alzheimer's Disease Knowledge Scale, the Medical Condition Regard Scale or the Jefferson Scale of Empathy. DISCUSSION: Time for Dementia may help improve the attitudes of medical students towards dementia promoting a person-centred approach and increasing social comfort. Such patient-focused programmes may be a useful complement to traditional medical education.

Barriers and facilitators to implementing a longitudinal dementia education programme into undergraduate healthcare curricula: a qualitative study.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Patient experience and satisfaction with remote memory assessment: Responding to clinical need in times of COVID-19 restrictions.

BACKGROUND: The suspension of memory services during the COVID-19 pandemic delayed dementia diagnosis and access to early intervention. Some services responded to the challenge by developing a remote memory assessment pathway to comply with reduced social contact measures to protect vulnerable patients. The aim of the study was to establish whether remote model is considered a satisfactory experience within the context of the COVID-19 pandemic and to understand the factors associated with patient and carer satisfaction of remote pathway. METHOD: 73 participants recruited from patients referred to memory clinic in West Sussex, who were assessed over a video or telephone. Participants completed an 11-item questionnaire capturing satisfaction across a range of elements, contextual items (the impact of the pandemic, loneliness, previous experience of using teleconference technology and diagnosis), as well as 3 dimensions from Patient Experience Questionnaire. Descriptive statistics are reported at a whole sample level, separated by patient and carer status. A hypothesis driven set of bivariate analyses (Spearman's rank) was used to understand the association between overall satisfaction and key independent factors across the whole sample. RESULTS: 73 participants were typically older adults (M=68.5, SD=13.3) and female (n=40, 54.8%). The patient was more likely to be older, feel lonely within the past week and to have used video call software when compared to the carer (p> 0.05). Participants were generally satisfied with the remote pathway with 95.8% (n=69) agreeing or strongly agreeing with the statement "Overall, I was satisfied with the assessment". Patients and carers did not significantly differ on any satisfaction response, apart from the ease of use of technology, in which carers were more likely to find the technology easy to use (U= 432.5; p=0.01). Worry about contracting COVID and communication experience was positively associated with overall satisfaction, whilst perceived communication barriers were significantly negatively associated with overall satisfaction. CONCLUSIONS: Remote memory assessment was a positive and satisfactory experience for most patient and carers. The remote pathway should be considered as an option available during and beyond the pandemic to improve access and patient choice of assessment modality.

A qualitative evaluation of the effect of a longitudinal dementia education programme on healthcare student knowledge and attitudes.

BACKGROUND AND OBJECTIVES: There is a need to ensure that the future healthcare workforce has the necessary knowledge and skills to deliver high quality compassionate care to the increasing number of people with dementia. Our programme has been set up to address this challenge. In the programme, undergraduate healthcare students (nursing, medical and paramedic) visit a family (person with dementia and their carer) in pairs over a 2-year period. This qualitative study sought to understand the student experience of the programme. METHODS: Participants were undergraduate healthcare students who were undertaking our programme at two universities. We sampled for variation in the student participants in order to generate a framework for understanding the student experience of the programme. Students were invited to take part in the qualitative study, and written consent was obtained. Interviews and focus group transcripts were analysed using thematic analysis. RESULTS: Thirty-nine (nursing, medical and paramedic) student participants took part in individual in-depth qualitative interviews and 38 took part in five focus groups. Four key themes were identified from the analysis; relational learning, insight and understanding, challenging attitudes and enhanced dementia practice. DISCUSSION: Student experience of our programme was shown to be positive. The relationship between the students and family was most impactful in supporting student learning, and the subsequent improvement in knowledge, attitudes and practice. Our model of undergraduate dementia education has applicability for other long-term conditions.

A feasibility study of the effects of implementing a staff-level recovery-oriented training intervention in older people's mental health services.

Objectives: The concept of recovery has exerted considerable traction in mental health services for adults of working age, but less so in older people's mental health services. The aim of this study was to evaluate the feasibility of a staff-level recovery intervention in older people's mental health services.Method: The study used a mixed-method pre-post design. The study took place in NHS older people's mental health services, UK. Staff participants were multi-disciplinary mental health team members from the same service. The intervention was a manualised staff-level recovery intervention called the Older Adults Recovery Intervention (OARI). Measurement included the Recovery Knowledge Inventory and the Recovery Attitudes Questionnaire (RAQ-7) as well as fidelity data and in-depth qualitative interviews.Results: OARI was delivered to 204 staff in 15 clinical teams. There was a statistically significant change towards improvement in four of the six recovery attitude and knowledge sub-scales. There were positive findings in change in practice at individual level, but not at team level. A number of context barriers were identified leading to the intervention not being delivered as intended.Conclusions: Further development of OARI will involve a clearer distinction about the practice implications for service users with dementia versus functional illnesses, a stronger focus on implementation support, more use of evidence in training materials and a tailoring of context to meet professional group training needs. Overall, this study contributes novel data to the evidence base for recovery within older people's mental health services.

Preferences of nursing and medical students for working with older adults and people with dementia: a systematic review.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework.

BACKGROUND: Dementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia. METHODS: We studied family carers of people with dementia and staff working in dementia services iteratively using in-depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study-specific advisory group of family carers. RESULTS: We completed 41 individual interviews with 32 family carers and nine staff and two focus groups with six family carers and five staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on person with dementia, carer, and external environment. CONCLUSIONS: For carers of people with dementia, the QOL construct was found to include condition-specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers, and service providers in addressing and measuring QOL in family carers of people with dementia.

Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL.

PURPOSE: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. METHODS: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. RESULTS: C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: 'meeting personal needs' (ω = 0.95); 'carer wellbeing' (ω = 0.91); 'carer-patient relationship' (ω = 0.82); 'confidence in the future' (ω = 0.90) and 'feeling supported' (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. CONCLUSIONS: The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.

Involving people with dementia and their carers in dementia education for undergraduate healthcare professionals: a qualitative study of motivation to participate and experience.

ABSTRACTBackground:There is a need to improve dementia education to prepare future generations of healthcare professionals to deal with the increasing challenges they will face. Time for Dementia is an innovative undergraduate education program for medical, nursing, and paramedic students in the south of England. Success of the program is dependent upon the participation of families (people with dementia and their carers). This qualitative study seeks to explore the motivation and experiences of the families taking part in the program. METHODS: A topic guide was developed to understand factors influencing motivation and retention. A purposeful sample of participant families, who had at least 12 months of involvement in the program, were selected from a cohort of 282 families and were invited to take part in an in-depth qualitative interview. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. This was subsequently refined in an on-going process of analysis aided by the use of Nvivo 11. Interviewing stopped when thematic saturation was reached. RESULTS: Eighteen families took part in an in-depth qualitative interviews. Four themes were identified from the analysis. These themes were motivators, value to family, value to the person with dementia, and student factors. CONCLUSIONS: This study identifies underpinning factors that motivate families to join dementia education programs and the impact of such programs upon them. We found that engagement in such programs can have therapeutic benefits to participants, and do not cause harm. These findings can be used to strengthen recruitment and enhance family involvement in similar programs.

Understanding compassion for people with dementia in medical and nursing students.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025.

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.

How do we enhance undergraduate healthcare education in dementia? A review of the role of innovative approaches and development of the Time for Dementia Programme.

OBJECTIVES: Traditional healthcare education, delivered through a series of time-limited clinical placements, often fails to deliver an understanding of the experiences of those with long-term conditions, a growing issue for healthcare systems. Responses include longitudinal integrated clerkships and senior mentor programmes allowing students' longer placements, continuity of contact and opportunities to learn about chronic illness and patient experience. We review their development and delivery in dementia and present the Time for Dementia (TFD) Programme, a novel 2-year interdisciplinary educational programme. DESIGN: The study design involves a scoping review of enhanced placements in dementia for healthcare professionals in training including longitudinal integrated clerkships and senior mentor programmes and a case study of the development of TFD and its evaluation. RESULTS: Eight enhanced programmes in dementia were identified and seven in the USA. None were compulsory and all lasted 12 months. All reported positive impact from case study designs but data quality was weak. Building on these, TFD was developed in partnership between the Alzheimer's Society, universities and NHS and made a core part of the curriculum for medical, nursing and paramedic students. Students visit a person with dementia and their family in pairs for 2 h every 3 months for 2 years. They follow a semi-structured interaction guide focusing on experiences of illness and services and complete reflective appraisals. CONCLUSIONS: We need interprofessional undergraduate healthcare education that enables future healthcare professionals to be able to understand and manage the people with the long-term conditions who current systems often fail. TFD is designed to help address this need. © 2016 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.

Factors associated with the quality of life of family carers of people with dementia: A systematic review.

INTRODUCTION: Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. METHODS: Searches on terms including "carers," "dementia," "family," and "quality of life" in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. RESULTS: A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer-patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future. DISCUSSION: The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.

Psychometric properties of multicomponent tools designed to assess frailty in older adults: A systematic review.

BACKGROUND: 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. METHODS: 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. RESULTS: 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]). CONCLUSIONS: 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.

Understanding the lived experience research priorities for improving health-related quality of life in people living with HIV with cognitive impairment.

BACKGROUND: People living with HIV experience higher rates of cognitive impairment (CI), and at younger ages, than the general population. These individuals report poor health-related quality of life (HRQL), however, interventions aimed at assisting people living with HIV to live well with CI do not currently exist and represent an important un-met need in this population. OBJECTIVE: This study aimed to identify the lived experience research priorities for improving HRQL and identify interventions to support priority areas. METHODS: A Research Advisory Group was established with 15 lived experience, academic, healthcare, and third sector professionals. Additionally, two semi-structured focus groups were undertaken, with health and third sector professionals and people living with HIV with CI. Participants were asked to rank factors impacting HRQL, identified in prior research, in terms of priority and intervention development. Findings were analysed using a combination of conventional and summative content analysis. Study findings were feedback to our Research Advisory Group. RESULTS: Five people living with HIV with CI, recruited through third sector agencies [Male 80%; median age 59 (range 56-78); White British 60%; homosexual 60%], and three healthcare and third sector participants (66% third sector professionals from two local HIV charities; 33% HIV-specific clinical psychologist) took part in two focus groups and ranked interventions targeting improvement in physical function, social connectedness, cognition and perceived control over cognitive health as priority areas. Findings were then fed back to the Research Advisory Group who recommended the development of an illness-specific cognitive rehabilitation programme and improved information provision as important avenues for intervention development. CONCLUSION: Given the absence of meaningful patient and public involvement, intervention, and support guidelines for people living with HIV with CI, this provides a roadmap for future research in this important and growing area of HIV clinical care.