What are lay UK public perceptions of frailty: a scoping review.

RATIONALE AND OBJECTIVE: Perceptions of frailty can influence how families cope, quality of life and access to support services. Yet little is known of how lay members of the UK general public perceive frailty. This scoping review aimed to explore how frailty is perceived among the lay public in the United Kingdom. METHODS: The established scoping review methodology by Arksey and O'Malley was followed and searches were conducted across eight electronic databases and grey literature websites for articles published between 1990 and August 2022. In total, 6,705 articles were identified, of which six were included in the review. Data were analysed using Braun and Clarke's thematic analysis framework. RESULTS: Three key themes were identified; frailty as a normal part of ageing, perceived consequences of frailty and coping with frailty. Overall, frailty has negative connotations and is perceived as linked to a natural part of the ageing process, increased dependency, loss of identity and social exclusion and stigma. However, it is unclear whether these perceptions have a direct bearing on access to support services for communities. CONCLUSION AND IMPLICATIONS: This review identifies that it is imperative for health and social care service providers to consider the individual meaning of frailty for older people and families, to understand and integrate their particular needs and preferences when planning and delivering person centred frailty care and support. There is also a need for development of interventions that focus on increasing education and reducing stigma around frailty in order to change frailty perceptions in the UK.

Intersectionality and its relevance for research in dementia care of people with a migration background.

BACKGROUND: Despite the care and support needs of migrants affected by dementia differing from the population of the country where they live now, most European countries do not provide specific strategies to address migration in their national dementia plans. The concept of intersectionality provides an innovative approach to dementia care perspectives and methodologies. OBJECTIVE: The aim is to define intersectionality and to provide examples of applying the concept to dementia care research, focusing on people with a migration background. METHODS: This article was conceptualized and discussed during virtual INTERDEM taskforce meetings in 2020/2021, while discussing identified literature on intersectionality, migration, and dementia care research. RESULTS: Using an intersectionality framework allows understanding of a person's lived experience by considering the dimensionality, co-occurrence and interlocking of factors (e.g., sex/gender, socioeconomic status, ethnicity, migration status, geographic location/place). CONCLUSION: Intersectionality can be applied as a conceptual and methodological approach to identify and address gaps in perspectives and in (dementia care) research to overcome the threat of ignorance, exclusion and discrimination.

Measuring adolescent attitudes towards dementia: The revalidation and refinement of the A-ADS.

The A-ADS is one the first validated measures of attitudes of dementia in adolescents, though further validation is needed. 630 adolescents were recruited from secondary schools in England. A Principal Component Analysis was completed (n = 230) followed by a Confirmatory Factor Analysis (n = 400). Reducing the A-ADS into a single factor, 13-item measure (Brief A-ADS) improved the model fit of the measure (χ2 = 182.75, DF = 65, CMIN/DF = 2.81, p < 0.001, CFI = 0.90, RMSEA = 0.07). The scale demonstrated good internal consistency, good predictive and concurrent validity. Building on the validation of the A-ADS, the Brief A-ADS is suitable to capture attitudes towards dementia amongst adolescents.

Validation of the Arabic Childbirth Care Satisfaction Survey.

BACKGROUND: Measuring maternal satisfaction in Arab countries is an essential indicator of care quality. However, existing surveys have limited psychometric properties and inclusion criteria. AIMS: To present the psychometric properties of the Arabic Childbirth Care Satisfaction Survey (CCSS). METHODS: The Arabic CCSS was developed from 2 English surveys. In 2017, 13 mothers assessed survey items in terms of clarity, importance and acceptability. The CCSS was distributed to all mothers who delivered a live baby during the 4-week study period in 9 hospitals in Oman. A sample of 461 participants was used for principal component analysis (PCA) and another sample of 408 participants (after removing missing data) was used for confirmatory factor analysis (CFA). Two-sample independent t tests were conducted to establish discriminant validity. Stata software was used for the analysis. RESULTS: The survey demonstrated good face and content validity with all items rated above 3 out of 5. Out of the 3566 targeted population, 958 (26.9%) mothers participated. PCA identified 2 factors labelled as communication and control (Cronbach's α = 0.90) and care organization (Cronbach's α = 0.68) with good internal reliability. CFA demonstrated good model fit, confirming construct validity. Mothers who had vaginal delivery were more satisfied (P < 0.05) compared with those who underwent caesarean section, thus establishing good discriminant validity. CONCLUSION: A short Arabic CCSS tool was developed. This new 10-item tool had good face and content validity, good internal reliability, construct validity and discriminant validity. It can provide valuable information to clinicians and decision-makers about the quality of maternity services.

The challenges of achieving timely diagnosis and culturally appropriate care of people with dementia from minority ethnic groups in Europe.

In a just society, everyone should have equal access to healthcare in terms of prevention, assessment, diagnosis, treatment and care. Europe is a multicultural society made up of people who identify with a wide range of ethnic groups. Many older people from minority ethnic groups also have a direct migration background. Several studies have shown that there is a lack of equity in relation to dementia diagnoses and care because equal opportunities do not necessarily translate into equal outcomes. An expert ethics working group led by Alzheimer Europe has produced an extensive report on this issue, a policy brief and a guide for health and social care workers. In this brief summary, the authors/members of the expert working group present some of the key challenges and recommendations for healthcare clinicians striving to provide timely diagnosis and good quality care and treatment to people with dementia from all ethnic groups.

Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia.

BACKGROUND: The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence that involvement has on research outcomes, over-reliance on family members as proxies and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed to make possible the involvement of a broader spectrum of people living with dementia. OBJECTIVE: This study aimed to adapt the PPIE process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. DESIGN: Narrative elicitation, informal conversation and observation were used to cocreate three vignettes based on PPIE group members' personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. PARTICIPANTS: Nine people living with dementia and five family members participated in this study. RESULTS: Using enhanced methods and outreach, it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. CONCLUSIONS: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. PATIENT OR PUBLIC CONTRIBUTION: People with dementia and their families were involved in the design and conduct of the study, in the interpretation of data and in the preparation of the manuscript.

Impact of dementia education and training on health and social care staff knowledge, attitudes and confidence: a cross-sectional study.

OBJECTIVES: The aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training. DESIGN: Cross-sectional survey study. Data collection occurred in 2017. SETTINGS: Health and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes. PARTICIPANTS: All health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%). OUTCOMES: Knowledge, attitude and confidence of health and social care staff. RESULTS: Hierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01). CONCLUSION: The results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.

Recruitment of south Asian carers into a survey-based research study.

Because of challenges involved in recruitment, little research has focused on care needs of minority ethnic groups. This article reports on a study that recruited 186 British south Asian carers of people with dementia. Four obstacles were faced: language barriers, confusion over research, feelings of shame/stigma, and mistrust. Researchers drew on various methods: enlisting multilingual researchers; activating contacts in minority ethnic communities; engaging with community groups; emphasising potential for enhancing support services; and tailoring research instruments to minority ethnic issues. Tips are offered to other researchers recruiting minority ethnic participants into studies.

How people of African Caribbean or Irish ethnicity cope with long-term health conditions in UK community settings: A systematic review of qualitative, quantitative and mixed method studies.

Living with a chronic or mental health condition can be challenging and requires considerable adjustment. As ways of coping are culturally influenced, it is important to understand how minority ethnic populations cope, to inform appropriate services. This review aimed to explore the coping strategies used by UK residents from an African Caribbean or Irish background between 1960 and 2020. A systematic literature search on strategies used to cope with chronic health conditions in both populations living in the United Kingdom identified 26 relevant studies. Data were extracted, quality of papers was appraised and critical interpretive synthesis was applied. Two major foci of the studies were coping strategies and barriers to coping. The main coping strategies were denial/scepticism, self-management, spirituality and religion. Within each population, there was variation in ways of coping. The review highlights the complex role of religion in influencing coping strategies. It demonstrates how personal and minority ethnic populations' experiences of service use are connected with stigma, fear and mistrust, which also act as barriers to seeking help and to coping. Coping with a chronic or mental health condition in the Irish and African Caribbean populations is under-researched. Stigma, fear and mistrust in services act as key barriers to help-seeking and religion is a prominent coping strategy. However, few detailed examples were given on how it was used to assist individuals when managing a chronic or mental health condition. Also due to a lack of research, firm conclusions cannot be drawn for the Irish population.

The effect of a dementia awareness class on changing dementia attitudes in adolescents.

BACKGROUND: Current evidence suggests that negative and stigmatising attitudes towards dementia may develop at a young age. There are a number of dementia education and awareness initiatives aimed at reducing stigma, though they have not been robustly evaluated to establish the impact on dementia attitudes or suitability in adolescent populations. This study explored the efficacy and satisfaction of one such initiative (Dementia Friends) in a British adolescent sample. METHODS: 301 adolescents (M = 12.6 years old, SD = 0.73) were assigned to either receive Dementia Friends (a 60-min interactive class that teaches about dementia and its effects on people's lives) or education as usual. All participants completed a series of validated questionnaires pre- and post-intervention, related to dementia attitudes (Brief A-ADS and KIDS). RESULTS: Adolescents in the dementia awareness group showed little to no improvements between time-points. The change scores in the dementia awareness group did not significantly differ to the control group based on both KIDS (d = - 0.003, p = 0.98) and Brief A-ADS (d = 0.14, p = 0.13) measures. There was no Group x Time effect after controlling for confounding variables. CONCLUSIONS: Dementia Friends is successful in terms of reach and impact, though this study suggests that it may fall short of achieving its goal of improving attitudes towards dementia. Importantly, Dementia Friends did not have a negative effect on attitudes, and the majority of adolescents enjoyed the sessions. It is important that these findings are replicated in a larger randomised-controlled study.

The barriers and facilitators to implementing dementia education and training in health and social care services: a mixed-methods study.

BACKGROUND: The health and social care workforce requires access to appropriate education and training to provide quality care for people with dementia. Success of a training programme depends on staff ability to put their learning into practice through behaviour change. This study aimed to investigate the barriers and facilitators to implementation of dementia education and training in health and social care services using the Theoretical Domains Framework (TDF) and COM-B model of behaviour change. METHODS: A mixed-methods design. Participants were dementia training leads, training facilitators, managers and staff who had attended training who worked in UK care homes, acute hospitals, mental health services and primary care settings. Methods were an online audit of care and training providers, online survey of trained staff and individual/group interviews with organisational training leads, training facilitators, staff who had attended dementia training and managers. Data were analysed using descriptive statistics and thematic template analysis. RESULTS: Barriers and facilitators were analysed according the COM-B domains. "Capability" factors were not perceived as a significant barrier to training implementation. Factors which supported staff capability included the use of interactive face-to-face training, and training that was relevant to their role. Factors that increased staff "motivation" included skilled facilitation of training, trainees' desire to learn and the provision of incentives (e.g. attendance during paid working hours, badges/certifications). "Opportunity" factors were most prevalent with lack of resources (time, financial, staffing and environmental) being the biggest perceived barrier to training implementation. The presence or not of external support from families and internal factors such as the organisational culture and its supportiveness of good dementia care and training implementation were also influential. CONCLUSIONS: A wide range of factors may present as barriers to or facilitators of dementia training implementation and behaviour change for staff. These should be considered by health and social care providers in the context of dementia training design and delivery in order to maximise potential for implementation.

The development and validation of the adolescent level of contact with dementia scale.

OBJECTIVES: As the number of people living with dementia increases, reducing stigma has become a policy priority. One way of decreasing stigma is through contact with the stigmatised group. However, the impact of this is difficult to establish due to a lack of validated measures suitable for adolescents. The aim of this study was to develop and validate a level of contact questionnaire designed to assess adolescents' contact with people living with dementia. METHODS: Participants were recruited from five schools in two studies (N = 446 and N = 488) and completed the preliminary 11-item version of the adolescent level of contact of dementia (ALoCD). RESULTS: Study 1 explored the factor structure of the ALoCD, revealing two factors 'direct contact' and 'indirect contact'. Study 2 confirmed the structure of the ALoCD and tested for discriminant validity. These two studies resulted in a 9-item scale that showed adequate internal consistency (α = .89, α = .62) and discriminant validity between those who did and did not live with a person with dementia. CONCLUSION: The development of this scale enables assessment of direct (eg, living with a person with dementia) and indirect (watching a TV show about dementia) contact with dementia, and the extent of this contact. This initial validation suggests a psychometrically sound scale but further research should be undertaken to fully explore the properties of the scale.

Perceptions and attitudes towards dementia among university students in Malaysia.

BACKGROUND: One of the major challenges worldwide is the stigma associated with dementia. There is limited dementia awareness within Malaysian communities, including levels of confusion regarding the differences between dementia and the usual ageing progress, which can lead to delays in support seeking. The need for additional training and education for healthcare professionals has been highlighted. The present study aimed to evaluate the benefits of a one-hour dementia education session (Dementia Detectives workshop) for pharmacy and medicine undergraduate students at a Malaysian university. METHODS: Participants attended the workshop and completed pre- (Time 1) and post-workshop (Time 2) questionnaires consisting of validated measures exploring attitudes towards dementia and older people more broadly. RESULTS: A total of 97 students were recruited. Attitudes towards people with dementia showed significant positive changes between Time 1 and Time 2, whereas no differences were found for attitudes towards older people. CONCLUSIONS: As medical and pharmacy students develop theoretical knowledge, practical skills and professional attitudes during their undergraduate studies, it is important for students to also learn about the humanistic side of diseases and conditions through workshops such as the one presented here. Further research should now be conducted to consider how Dementia Detectives can be delivered to non-healthcare students and what the barriers and facilitators to wider delivery are.

Components of impactful dementia training for general hospital staff: a collective case study.

Background and objectives: People with dementia occupy around one quarter of general hospital beds, with concerns consistently raised about care quality. Improving workforce knowledge, skills and attitudes is a mechanism for addressing this. However little is known about effective ways of training healthcare staff about dementia. This study aimed to understand models of dementia training most likely to lead to improved practice and better care experiences for people with dementia, and to understand barriers and facilitators to implementation.Method: A collective case study was conducted in three National Health Service Acute Hospital Trusts in England. Multiple data sources were used including interviews with training leads/facilitators, ward managers and staff who had attended training; satisfaction surveys with patients with dementia and/or carers; and observations of care using Dementia Care Mapping.Results: Interactive face-to-face training designed for general hospital staff was valued. Simulation and experiential learning methods were felt to be beneficial by some staff and stressful and distressing by others. Skilled delivery by an experienced and enthusiastic facilitator was identified as important. Staff identified learning and practice changes made following their training. However, observations revealed not all staff had the knowledge, attitudes and skills needed to deliver good care. Patient and carer satisfaction with care was mixed. A major barrier to training implementation was lack of resources. Supportive managers, organisational culture and strong leadership were key facilitators.Conclusion: Dementia training can lead to improved care practices. There are a range of key barriers and facilitators to implementation that must be considered.

Adolescents' experiences and perceptions of dementia.

Objectives: There is a lack of understanding about how adolescents perceive dementia, and what their dementia related experiences are. Without such information, it is hard to make a case for the need to raise awareness of dementia in adolescents, and the best strategies to achieve this.Methods: In a cohort of 901 adolescents (aged 13-18) from the South East of England, we explored what the experiences and perceptions of dementia were using a series of questionnaires. Descriptive data of individual items were reported, comparing differences between genders.Results: The adolescents within this study tended to have positive or neutral attitudes towards dementia, though there was evidence that a proportion of adolescents had misconceptions or held negative attitudes (e.g. 28.5% of adolescents disagreed with the statement 'In general, I have positive attitudes about people with dementia'). We also identified that the adolescents had a range of experiences of dementia including providing some form of care for someone with dementia (23.2%), though most had indirect contact with dementia through TV and movies (77.3%), or adverts (80.2%). Females nearly always had better attitudes towards dementia and had significantly more contact with dementia.Conclusions: Considering that adolescents are already forming negative attitudes and misconceptions of dementia, it is important that we raise awareness about dementia in this age group.

What do adolescents perceive to be key features of an effective dementia education and awareness initiative?

The development of dementia friendly communities is a current global and national priority for the UK. As a response to policy, there have been a number of dementia awareness initiatives disseminated with the aim of reducing the stigma associated with a diagnosis of dementia. The inclusion of adolescents in such initiatives is imperative in order to sustain dementia friendly communities. With this in mind, the aim of this study was to establish the dementia education needs of adolescents and effective dissemination strategies to convey key messages. A total of 42 adolescents aged 12 to 18 years participated in eight focus group discussions. Key themes to emerge from discussions included: the importance of dementia awareness, topics of interest within dementia, preferred methods of learning, the inclusion of the person living with dementia and the use of social media. The findings of the study will enable the development of appropriate dementia awareness initiatives for adolescents and thus facilitate the sustainability of dementia friendly communities.

Validation of the Primary Care Patient Measure of Safety (PC PMOS) questionnaire.

BACKGROUND: The Primary Care Patient Measure of Safety (PC PMOS) is designed to capture patient feedback about the contributing factors to patient safety incidents in primary care. It required further reliability and validity testing to produce a robust tool intended to improve safety in practice. METHOD: 490 adult patients in nine primary care practices in Greater Manchester, UK, completed the PC PMOS. Practice staff (n = 81) completed a survey on patient safety culture to assess convergent validity. Confirmatory factor analysis (CFA) assessed the construct validity and internal reliability of the PC PMOS domains and items. A multivariate analysis of variance was conducted to assess discriminant validity, and Spearman correlation was conducted to establish test-retest reliability. RESULTS: Initial CFA results showed data did not fit the model well (a chi-square to df ratio (CMIN/DF) = 5.68; goodness-of-fit index (GFI) = 0.61, CFI = 0.57, SRMR = 0.13 and root mean square error of approximation (RMSEA) = 0.10). On the basis of large modification indices (>10), standardised residuals >± 2.58 and assessment of item content; 22 items were removed. This revised nine-factor model (28 items) was found to fit the data satisfactorily (CMIN/DF = 2.51; GFI = 0.87, CFI = 0.91, SRMR = 0.04 and RMSEA = 0.05). New factors demonstrated good internal reliability with average inter-item correlations ranging from 0.20 to 0.70. The PC PMOS demonstrated good discriminant validity between primary care practices (F = 2.64, df = 72, p < 0.001) and showed some association with practice staff safety score (convergent validity) but failed to reach statistical significance (r = -0.64, k = 9, p = 0.06). CONCLUSION: This study led to a reliable and valid 28-item PC PMOS. It could enhance or complement current data collection methods used in primary care to identify and prevent error.

Psychosocial interventions for people with dementia: An overview and commentary on recent developments.

An influential review in 2010 concluded that non-pharmacological multi-component interventions have positive effects on cognitive functioning, activities of daily living, behaviour and mood of people with dementia. Our aim here is to provide an up-to-date overview of research into psychosocial interventions and their impact on psychosocial outcomes. We focused on randomised controlled trials, controlled studies and reviews published between October 2008 and August 2015, since the earlier review. The search of PsychInfo, Medline and the Cochrane database of systematic reviews yielded 61 relevant articles, organised into four themes echoing key phases of the care pathway: Living at home with dementia (five reviews, eight studies), carer interventions (three reviews, four studies), interventions in residential care (16 reviews, 12 studies) and end-of-life care (three reviews, two studies), along with an additional group spanning community and institutional settings (six reviews, two studies). Community findings suggested that appointment of dementia specialists and attention to case management can produce positive outcomes; physical therapies, cognitive training and modified cognitive behaviour therapy also had a range of benefits. There was more limited evidence of positive benefits for people with dementia through interventions with family carers. Thirty-two articles focused on the management of 'behavioural symptoms' through a range of interventions all of which had some evidence of benefit. Also a range of multi-component and specific interventions had benefits for cognitive, emotional and behavioural well-being of people with dementia in residential settings, as well as for quality of life. Overall, interventions tended to be short term with impact only measured in the short term. We recommend further research on interventions to promote living well in the community post-diagnosis and to address end-of-life care. Development of psychosocial interventions would benefit from moving beyond the focus on control of behaviours to focus on wider aspects of life for people with dementia.

Involving minority ethnic communities and diverse experts by experience in dementia research: The Caregiving HOPE Study.

Patient and public involvement is imperative to ensure relevance of research. There is a growing literature on the theoretical underpinning on patient and public involvement including level and processes of involvement. The aim of this paper is to describe a person-centred and culturally sensitive approach to working with minority ethnic communities, involving carers, people living with dementia, members of the public and carer support workers, as used in the Caregiving HOPE study; and the influence of the approach on the study's research processes and outcomes. Patient and public involvement members were considered experts by experience and involved with study conception, design, conduct and dissemination. The perspective of the experts by experience is also presented in this article. The level and nature of involvement was influenced by each individual's needs and desires which changed over the course of the study. The approach had a significant impact on study outcomes as evidenced by successful recruitment and engagement at a national level, but was not without challenges with greater flexibility required and fuller consideration of financial and time costs required. Benefits of the approach included strong engagement, improved outcomes (successful recruitment of seldom heard groups) and meaningful relationships between researchers and experts by experience. A person-centred and culturally sensitive approach is required with patient and public involvement to ensure involvement is not detrimental to those involved, is meaningful and enjoyable and has a positive impact on the research.

Development of the Adolescent Attitudes towards Dementia Scale (A-ADS).

OBJECTIVE: There has been an increasing interest in establishing dementia friendly communities leading to the development and delivery of various dementia awareness initiatives. These initiatives have generally been aimed at adults; however, to sustain dementia friendly communities, the involvement of young people is imperative. Very few dementia awareness initiatives exist for young people, and none have been independently evaluated to establish their impact. This research aimed to design and develop a scale to measure adolescents' attitudes towards dementia to allow such initiatives to be evaluated. METHODS: The Adolescent Attitudes toward Dementia Scale was developed in 2 stages. Firstly, cognitive interviews were conducted with 15 young people, and secondly, a new scale (based on items from 2 existing scales) was piloted with 262 young people, recruited through schools. RESULTS: A scale consisting of 23 items was developed. Exploratory factor analysis demonstrated that this captured 3 factors: perceptions of dementia, personal sacrifice, and empathy with people living with dementia. The 3 sub-scales showed adequate internal consistency (>.60), correlated with the original scales (r = .79-.91, P < .001) and correlated with an existing measure of attitudes towards older people at a similar level to the original scales (r = .47, P < .001). DISCUSSION: The scale will allow the evaluation of educational initiatives for young people and provide a validated and standardised measure to establish adolescents' attitudes towards dementia.