Research aim This study aimed to test two questionnaires designed to measure the quality of life for people living with dementia and those who care for them. We wanted to find out if these tools (called ASCOT-Proxy and ASCOT-Carer) were easy to use and if they accurately measured how social care services—like homecare or day centres—affect people’s lives. We also looked at how the COVID-19 pandemic and personal circumstances, such as finances, impacted well-being. Background More people with dementia are living at home, supported by family members or friends (also known as ‘carers’). Adult social care services can play an important role in maintaining their independence and well-being. However, to improve these services, we need reliable ways to measure whether and how they actually make a difference. Measuring the quality of life for people with advanced dementia can be difficult, especially if they cannot answer questions themselves even with support. This is why we tested the ASCOT-Proxy tool that allows carers to provide information on their behalf. We also wanted to understand the suitability and reliability of the ASCOT-Carer completed by carers of people with dementia about their own lives and the impact of services to support them. What we did We conducted a survey of 313 carers across England, either online or by post. To take part, carers had to be supporting someone with dementia who lived at home and was unable to fill out a questionnaire themselves even with support. We also ensured that the person with dementia or the carer was using at least one social care service. Participants were found through the NHS and online volunteer groups. Because the study took place during the COVID-19 pandemic, we were also able to consider the effect of lockdown restrictions on people’s lives. What we found The survey showed that both questionnaires are valid and reliable tools. Nearly 90% of carers completed all the questions, proving they are easy to use. Through statistical checks, we confirmed that the questions accurately measured the areas of life they were designed to assess. Specifically, we found that asking a carer to answer from the perspective of the person they care for was the most valid and reliable method. The findings regarding quality of life were concerning. More than half of the carers reported a poor quality of life in five out of seven key areas, often to a level that could potentially or already negatively affect their health. Carers who struggled financially or were unhappy with their care services had the lowest levels of well-being. Interestingly, while COVID-19 restrictions did not significantly change the carers' reported quality of life, the restrictions did have a clear negative impact on the people living with dementia. Conclusion The ASCOT-Proxy and ASCOT-Carer questionnaires are reliable tools that can be used in future research and by local authorities or care providers to see if social care services are working. The study highlights the immense pressure on carers in England. It shows that carers’ quality of life is closely linked to financial security and their satisfaction with care services. Next steps and future plans ASCOT-Proxy and ASCOT-Carer questionnaires can be used in future research to understand the effect of adult social services on people’s lives. The questionnaires are available here . By using these tools regularly, the social care system can better understand which services provide the most benefit, for whom. Future work should focus on how to better support carers who are facing financial hardship or their own health issues, as these are the people most at risk of reaching a breaking point. PPIE (Patient and Public Involvement and Engagement) The study involved two people with experience of caring for a loved-one with dementia. They worked with us throughout the project. They helped us to design the study, to find people to take part in the survey, to reflect on our findings and to share what we found in articles, blogs and presentations.

The insights available from linking routine health data have transformative potential for understanding and improving population health and well-being. However, cross-sectoral data linkage in the UK remains challenging, with persistent barriers around governance, interoperability and data quality.This Perspective paper draws on the experiences of the Developing research resources And minimum data set for Care Homes Adoption and use (DACHA) study which linked administrative health and social care records with records from care home software providers for over 700 older adult care home residents, an underserved population in research, in England to build a proof-of-concept minimum dataset.From our learning, we make eight recommendations for researchers, research funders, data owners, data controllers and policymakers to strengthen future data linkage across health and social care. We recommend: (1) sharing metadata to support transparency and efficient reuse; (2) clarifying purposes for data sharing; (3) streamlining information governance processes; (4) recognising the health and social care system as a research partner; (5) resourcing data quality at the point of collection; (6) acknowledging the work needed to adapt routine data for research; (7) standardising core variables for interoperability; and (8) designing linkage for wider public benefit and safe data reuse.Implementing these recommendations would help create a more coherent, efficient and equitable data landscape, realising the potential of existing data to improve care quality, research capacity and population health.

Rasch analysis was applied to establish the structural validity of the ASCOT-Workforce measure of care-work related quality of life (CWRQoL). The analysis was also used to guide potential item reduction to create a short-form version, which could be used in future studies to develop preference weights for use in economic evaluation of interventions and policy. Rasch analysis was applied to the ASCOT-Workforce (13 items) from a survey of the adult social care workforce in England (n = 7233). The assumption of a single scale was based on the finding of a single factor structure for the 13-item measure from a prior study that applied exploratory factor analysis. Rasch analysis of ASCOT-Workforce (13 items) had acceptable model fit, internal consistency and met assumptions of unidimensionality and local independence. There was suboptimal distinguishability at some thresholds between response options and evidence of differential item functioning (DIF). Most issues were addressed by omitting items to create a 9-item version, although there were still issues with three items. These were retained based on policy relevance and face validity to key stakeholders. ASCOT-Workforce (13-item, 9-item) are both valid instruments of CWRQoL for those working in the adult social care workforce. The short-form (9-items) performs slightly better than the 13-item measure, although suboptimal distinguishability at category thresholds and DIF persisted for three items. Further qualitative study to explore the reasons underlying DIF, and whether re-drafting the response options could improve the response category distinguishability, are recommended.

Introduction Care provided in people’s own homes (domiciliary care) is an increasingly important part of long-term care. There are various services, including home visits, live-in care and housing with care. Some people directly employ care staff, called personal assistants. Services vary in quality, price and availability, and there is currently little evidence of the value these services provide to the public purse and individuals. This study protocol presents planned research to fill this important gap.Methods and analysis This will be a cross-sectional study based on surveys of care recipients, their unpaid carers as well as formal care providers. In the first half of 2026, we will survey 1850 people accessing domiciliary care either through a homecare agency, a housing with care scheme or by directly employing personal assistants and 400 unpaid carers, all based in England. We will conduct a cost-effectiveness analysis taking a ‘production function’ approach and use quality of life as measured by the Adult Social Care Outcomes Toolkit as the main outcome of interest.Ethics and dissemination The study received ethical approval from the School of Social Sciences Staff Review Committee at the University of Kent on 20 May 2025 (reference 1195) and the Health Research Authority, London—Camberwell St Giles Research Ethics Committee on 28 October 2025 (reference 25/LO/0652). Implications around consent, data protection and confidentiality, risk and participant payment are discussed. In addition to academic outputs (eg, academic articles, conference presentations), we aim to coproduce news items and blogs with people with lived experience of accessing long-term care and jointly present findings at events aimed at the care sector. Moreover, we will offer participating care providers benchmarking briefs based on our findings.

BACKGROUND:In the UK, over half a million older people rely on publicly funded social care services to support their daily living needs. It is crucial to measure the quality of these services to ensure they meet the needs of those they support. The Adult Social Care Outcomes Toolkit (ASCOT) was developed to assess social care-related quality of life (SCRQoL; Netten et al., 2012). However, many older individuals, particularly those living with dementia, face difficulties completing standard questionnaires (Aznar et al., 2021). AIM:This project aimed to enhance the accessibility of the ASCOT toolkit for older people, enabling more people to self-report their experiences of social care. METHODS:We employed a co-design methodology, bringing together a working group of older adults, primarily those living with dementia, along with their carers/supporters, to adapt the ASCOT toolkit. The adaptation process involved six working group meetings. In between these meetings, three rounds of cognitive testing (Meadows, 2021) with 25 participants who had difficulties completing traditional questionnaires also took place, with findings brought back to the working group after each round, so they could further refine the toolkit in light of cognitive testing results. RESULTS:The final adapted version of the ASCOT toolkit differs significantly from the original. The cognitive testing results demonstrate a considerable reduction in challenges experienced by participants between testing rounds, indicating a more accessible and user-friendly tool. IMPLICATIONS:The findings from this project demonstrate that co-designing outcome measures with older people, particularly those living with dementia, is both feasible and impactful. This work offers a replicable model for creating inclusive, accessible tools that amplify the voices of service users. PATIENT AND PUBLIC INVOLVEMENT:8 older people, including those living with dementia, have co-designed the new version of the tool over 6 meetings. Further meetings took place to jointly design dissemination materials. Working group members have co-presented project findings at conferences and events, and two members have co-authored this article. PPI were involved from the funding acquisition stage of this project. Two PPI members who were not part of the working group were part of the project steering group.

Context: Ensuring the safety of older adults living in residential care homes is an international priority. Residents are often highly frail and vulnerable, making safety a critical concern. A growing range of organisations collect safety-related data from care homes, yet there is limited understanding of how effectively these data support learning and improvement.Objective(s): To explore strategic stakeholders’ views on the scope, collection, and use of safety data in older adult care homes, and to identify opportunities to better support learning and improvement.Method(s): Semi-structured online interviews were conducted with 18 purposively sampled strategic-level professionals in England, representing regulatory bodies, NHS organisations, local authorities, care home providers, and representative organisations. Data were analysed thematically.Findings: Data collection largely reflected organisational roles in regulation or quality monitoring and focused predominantly on adverse outcomes and incidents. Care homes were subject to overlapping data requests. Barriers to effective use of safety data included siloed data collection, limited sharing between organisations and care homes, a blame-oriented culture associated with harm-focused measures, and limited capacity to analyse and use data for improvement.Limitations: This was a small, qualitative study focused on strategic stakeholders; perspectives of care home staff, residents, and families were not included.Implications: Improving safety assessment in care homes requires rationalising and standardising data requests, balancing harm-focused indicators with measures of proactive safety practices, enhancing data sharing, strengthening analytic capacity, and ensuring care home staff have the skills required to use safety intelligence to stimulate safety improvement.

ASCOT easy read for older people (ASCOT-ER OP) is an adaptation of the Adult Social Care Outcomes Toolkit (ASCOT-SCT4) that was co-produced with older adults and their families to improve accessibility and feasibility of completion. This study aimed to examine the structural validity of ASCOT-ER OP using exploratory factor analysis (EFA) and Rasch analysis. Data were collected by British Red Cross (BRC) as part of short-term support for adults living at home, post-crisis or hospital discharge (‘Support at Home’). ASCOT-ER OP was collected at initial assessment (baseline) and at the end of support (follow-up), typically no longer than 12 weeks later. Only follow-up data were analysed in this study. EFA was conducted to assess structural validity against the single factor structure of ASCOT-SCT4. Overall fit to the Rasch model was examined alongside assessment of unidimensionality, local independence, item fit, response threshold ordering and differential item functioning (DIF) by age group (18–64 and 65 + years). ASCOT-ER OP had a single factor structure in EFA. There was good fit to the Rasch model without significant breach of assumptions. Item fit was satisfactory. There was no evidence of disordered thresholds, but suboptimal distinguishability between response categories at some thresholds. These aligned to instances of < 10 ratings per category and/or were consistent with the properties of the ASCOT-SCT4. There was evidence of DIF by age group for two items: Personal Safety and Home comfort and cleanliness. EFA and Rasch support the structural validity of ASCOT-ER OP as a unidimensional measure.

Background:In England, care homes are the primary providers of long-term care for older adults. The increasing recognition of the importance of social care underscores the importance of collaboration between the National Health Service and care homes. The lack of data sharing among stakeholders limits opportunities for co-ordinated care, service development and research. Objectives:Identify how to support research, service development and innovation in care homes. Combine existing evidence with care home-generated resident data to create a minimum data set that is relevant and usable for stakeholders, including residents, relatives, practitioners, researchers, regulators and commissioners. Design and methods:The study used a mixed-methods approach, structured into five work packages, supported by patient and public involvement and engagement with residents, carers and staff: Work package 1: Conducted two evidence reviews on outcome measures and factors enhancing research productivity in care homes. Work package 2: Created a trial archive for secondary data analysis. Work package 3: Conducted a scoping review, a realist review and a national survey to define minimum data set content and assess implementation challenges in English care homes. Work package 4: Linked residents' data from National Health Service and social care data sets with data from study care homes, deriving useful minimum data set variables and assessing data quality. Work package 5: Piloted the minimum data set at two points in care homes within three integrated care systems, conducted focus groups and interviews with care home and integrated care system staff. Three national consultations explored how stakeholders use resident information, measure quality of life and minimum data set usefulness. Additionally, subprojects examined data availability in domiciliary settings, staff reasoning when assessing resident well-being and completing research during rapid policy changes. Findings:The reviews revealed significant heterogeneity in outcome measurement and questioned the appropriateness of some methods and measures used for care home research. The Virtual International Care Home Trials Archive merged data from 6 United Kingdom randomised controlled trials with 5674 residents across 308 care homes. International minimum data set studies are a valuable resource for international comparative research. The wide range of measures used are mostly clinical with under-representation of measures important to care homes (e.g. quality of life). A national survey of care homes demonstrated the range of information, including clinical measures being routinely collected. The realist review identified motivation, front-line staff monitoring and embedded recording systems as important for minimum data set implementation. The pilot study recruited 996 residents from 45 care homes, with 727 residents' data included in the minimum data set. Residents' digital care records were linked to statutory health and social care data sets, creating a viable minimum data set prototype with metadata as resource. Conclusions:The study provided an evidence-based critique of care home research and a resource for secondary data analysis for future research. It developed a prototype minimum data set linking National Health Service, social care and care home data, demonstrating its importance as a basis for discussions between health and care staff. Limitations:The COVID-19 pandemic disrupted relationships and recruitment. Governance challenges prevented linking residents' data to general practitioner records. Future work:Future research should assess whether the care home minimum data set improves resident outcomes, service delivery, staff experience, cross-sector collaboration, resource use and digital technology implementation. Funding:This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR127234.

We explore the quality of life of older carers (aged 65 and above) and the people they support, as well as the role of services in promoting their quality of life, both on an individual and on a dyadic level. We collected data in England and, using a framework analysis, identify three themes that were shared by 28 carers and 11 individuals with support needs: (1) experience of support within and outside of the dyad; (2) dilemmas related to receiving social care services; and (3) the impact of COVID-19. This study suggests how to potentially improve their experience of support across different areas of their lives.

Purpose Mandatory digital social care records and a standardised schedule for collecting information on home care clients are proposed for regulated adult social care providers in England. This could facilitate the introduction of a minimum data set (MDS). This study aimed to understand current data collection practices in home care, and identify where support for implementation of an MDS is needed. Design/methodology/approach An online survey of English home care providers was conducted in 2023, asking about the information they collect, store and share about their clients. Data were analysed using descriptive statistics and logistic regression. Findings One hundred and fifty five responses were received from home care providers in all regions of England, a majority were for-profit organisations (89%). All collected a range of data on client characteristics and observations about care delivered. Monitoring of changes in client wellbeing and use of standardised measurement tools (e.g. functioning, mood or quality of life) were uncommon. Over two-thirds (71%) reported that they reviewed the content of care packages at least every six months. Providers with a majority of self-funding clients were more likely to regularly update information on care needs and client/ family preferences. Practical implications Data collection in UK home care will require expansion, to implement an MDS, which has resource implications for providers. Home care staff will need the skills to collect and use data to enhance client care. Originality/value To the best of the authors’ knowledge, this is the first national survey of home care providers on their routine data collection practices.

Introduction Health and care data are routinely collected about care home residents in England, yet there is no way to collate these data to inform benchmarking and improvement. The Developing research resources And minimum data set for Care Homes' Adoption and use study has developed a prototype minimum data set (MDS) for piloting. Methods and analysis A mixed-methods longitudinal pilot study will be conducted in 60 care homes (approximately 960 residents) in 3 regions of England, using resident data from cloud-based digital care home records at two-time points. These will be linked to resident and care home level data held within routine National Health Service and social care data sets. Two rounds of focus groups with care home staff (n=8-10 per region) and additional interviews with external stakeholders (n=3 per region) will explore implementation and the perceived utility of the MDS. Data will be assessed for completeness and timeliness of completion. Descriptive statistics, including percentage floor and ceiling effects, will establish data quality. For validated scales, construct validity will be assessed by hypothesis testing and exploratory factor analysis will establish structural validity. Internal consistency will be established using Cronbach's alpha. Longitudinal analysis of the pilot data will demonstrate the value of the MDS to each region. Qualitative data will be analysed inductively using thematic analysis to understand the complexities of implementing an MDS in care homes for older people. Ethics and dissemination The study has received ethical approval from the London Queen's Square Research Ethics Committee (22/LO/0250). Informed consent is required for participation. Findings will be disseminated to: academics working on data use and integration in social care, care sector organisations, policy makers and commissioners. Findings will be published in peer-reviewed journals. Partner NIHR Applied Research Collaborations, the National Care Forum and the British Geriatrics Society will disseminate policy briefs.

Objectives To assess the feasibility of capturing older care home residents’ quality of life (QoL) in digital social care records and the construct validity (hypothesis testing) and internal consistency (Cronbach’s alpha) of four QoL measures.Design Cross-sectional data collected in wave 1 of the DACHA (Developing resources And minimum dataset for Care Homes’ Adoption) study, a mixed-methods pilot of a prototype minimum dataset (MDS).Setting Care homes (with or without nursing) registered to provide care for older adults (>65 years) and/or those living with dementia. All homes used a digital record system from one of two suppliers.Participants Data were extracted from 748 residents. All permanent residents, aged 65 years or older, were eligible to participate, including those lacking capacity to consent. Temporary residents and residents in their last weeks of life were excluded.Outcome measures and analysis The English language versions of Adult Social Care Outcomes Toolkit (ASCOT)-Proxy-Resident, ICEpop CAPability measure for Older people (ICECAP-O), EQ-5D-5L proxy and the QUALIDEM were added to the digital record. As there have not been any previous studies of the structural validity of the English language version of the QUALIDEM, ordinal exploratory factor analysis (EFA) was applied for this measure only. Feasibility (% missing by software provider and measure), % floor/ceiling effects (>15% at lower/upper end of the scales), convergent or divergent construct validity (criterion of >75% of hypotheses accepted) and internal consistency (Cronbach’s alpha ≥0.7) were assessed for all four measures.Results The ordinal EFA of QUALIDEM did not replicate the findings of previous research. A six-factor (36 item) solution was proposed and used in all subsequent analyses. There were low rates of missing data (<5%) for all items, except ASCOT-Proxy-Resident Control (5.1%) and Dignity (6.2%) and QUALIDEM item 35 (5.1%). Ceiling effects were observed for the ASCOT-Proxy-Resident and two of the QUALIDEM subscales. None of the scales had floor effects. Cronbach’s alpha indicated adequate internal consistency (α ≥0.70) for the ASCOT-Proxy-Resident, ICECAP-O and EQ-5D-5L proxy. There were issues with two QUALIDEM subscales. Construct validity for all measures was adequate.Conclusions The findings support the use of EQ-5D-5L, ASCOT-Proxy-Resident and the ICECAP-O in care homes for older people. The choice of measure will depend on the construct(s) of interest. More research is needed to establish the psychometric properties of the QUALIDEM in an English care home setting.

Carer-specific preference-based instruments have been developed to capture outcomes for economic evaluations but the body of evidence has yet to be collated to guide instrument selection and identify knowledge gaps for future research. This scoping review aimed to identify carer-related, preference-based instruments and summarise and assess their performance, valuation and application. Nine databases (ASSIA, CINAHL, Cochrane, DARE, Econlit, EMBASE, iHTA, PsychINFO, Pubmed) were searched until 28th May 2025 to identify peer-reviewed, English-language articles about the development, validation, valuation and application of preference-based, carer-related instruments. Study characteristics, instrument descriptions, psychometric properties and valuation information were extracted. The body of evidence and reporting quality were assessed using CREATE and the ISOQOL minimum standards for patient-reported outcome measures. In total, 140 included articles reported on five instruments: the ASCOT-Carer; the CarerQol; the CES; the ICECAP-CPM; and the SIDECAR. All carer-specific, preference-based instruments have rigorously developed scoring algorithms, albeit for differing numbers of countries. All of the instruments, except the ICECAP-CPM, have some evidence of psychometric validity in varied populations, though information on responsiveness is limited. Broadly, the CarerQol, the longest established instrument, is the most widely validated, followed by the ASCOT-Carer and CES. The SIDECAR and ICECAP-CPM require further testing. The CarerQol has the most evidence for use in carers of children, the ASCOT-Carer for adult social care settings, the CarerQoL and CES for the palliative care setting, and the ASCOT-Carer, CarerQoL, and CES for mental illness, rheumatoid arthritis, long-term care, and dementia. The CarerQol, CES and ASCOT-Carer represent the most widely used instruments for measuring carer-related outcomes in economic evaluations. The review findings assist with selecting instruments for studies alongside research objectives, population and settings. Future research should explore the responsiveness of these instruments, validate them in different countries and carer populations, and develop country-specific scoring algorithms.

BACKGROUND:To maintain good standards of care, evaluations of policy interventions or potential improvements to care are required. A number of quality of life (QoL) measures could be used but there is little evidence for England as to which measures would be appropriate. Using data from a pilot Minimum Data Set (MDS) for care home residents from the Developing resources And minimum dataset for Care Homes' Adoption (DACHA) study, we assessed the discriminant construct validity of QoL measures, using hypothesis testing to assess the factors associated with QoL. METHODS:Care home records for 679 residents aged over 65 from 34 care homes were available that had been linked to health records and care home provider data. In addition to data on demographics, level of needs and impairment, proxy report measures of social care-, capability- and health-related QoL of participants were completed (ASCOT-Proxy-Resident, ICECAP-O, EQ-5D-5L Proxy 2). Discriminant construct validity was assessed through testing hypotheses developed from previous research and QoL measure constructs. Multilevel regression models were analysed to understand how QoL was influenced by personal characteristics (e.g. sex, levels of functional and cognitive ability), care home level factors (type of home, level of quality) and resident use of health services (potentially avoidable emergency hospital admissions). Multiple imputation was used to address missing data. RESULTS:All three QoL measures had acceptable construct validity and captured different aspects of QoL, indicated by different factors explaining variation in each measure. All three measures were negatively associated with levels of cognitive impairment, whilst ICECAP-O and EQ-5D-5L Proxy 2 were negatively associated with low levels of functional ability. ASCOT-Proxy-Resident was positively associated with aspects of quality and care effectiveness at both resident- and care home-level. CONCLUSION:The study found acceptable construct validity for ASCOT-Proxy-Resident, ICECAP-O and EQ-5D-5L Proxy 2 in care homes, with findings suggesting the three are complementary measures based on different constructs. The study has also provided evidence to support the inclusion of these QoL measures in any future MDS.

Digitalisation within English care homes offers potential to make more effective use of substantial data collected by staff during care planning and recording. A pilot minimum data set was co-designed with stakeholders based on two digital care records with additional structured measures. Our objectives were to explore (1) care home staff opinions and experiences of collecting structured measures of quality of life, cognition and function for residents and (2) how a minimum data set data might be used by staff and other professionals interested in care homes. Between June and October 2023 focus groups and interviews involving care home staff and Integrated Care System participants from three regions of England were undertaken. Integrated Care System staff work externally from care homes and support commissioning of services for care homes and reviewing data. We used a semi-structured topic guide. Two waves of care home focus groups were conducted after each wave of minimum data set data capture. A single wave of focus groups/interviews were undertaken with Integrated Care System participants. Reflexive thematic analysis was used to develop themes. Twenty-four staff from 22 care homes and 16 staff from 15 care homes participated in five wave one and four wave two focus groups respectively. Ten Integrated Care System participants from two of three study regions participated in one focus group (seven participants) and three individual interviews. Three themes were developed: the care home context and the importance of a minimum data set for care, appropriateness and relevance of quality of life measures to resident care, and data quality and purpose. Care home staff can collect structured measures on resident quality of life, function and cognition using digital care records to contribute to a minimum data set. The data generated can inform and enhance resident care. However, implementation is an evolving process requiring support, trust-building and confidence among those collecting and interpreting data and incorporation as part of routine care.

Community-based social care plays an important role in addressing food and drink care-related quality of life (QoL) outcomes and associated needs of older people. An analysis of data from the English Adult Social Care Survey was conducted to explore the QoL and unmet needs of older people using social care services. Between 4.3 per cent (in 2011) and 8.1 per cent (in 2022) of older adults reported unmet needs. This increased over time, after controlling for other factors, potentially due to context, for example, the cost of living and underfunding of social care. The analysis demonstrates the importance of understanding older adults’ QoL outcomes/needs as reflective of effective community-based care.

Since the launch of Adult Social Care Outcomes Toolkit (ASCOT) in 2012, there has been increasing interest in use of ASCOT measures in social care research and evaluation, internationally. This scoping review seeks to understand ASCOT use and the methodologies within which the measures have been applied. An international scoping review of studies published between January 2012 and July 2024 that utilized ASCOT, excluding measure development and psychometric studies. Fifty-five articles (11 protocols) reported use of ASCOT. Most reported cross-sectional studies (n = 19) or randomized controlled trials (n = 15) that explored the effectiveness of policy, interventions or systems. ASCOT measures were also applied in mixed methods and other study designs, including qualitative studies. A few studies applied ASCOT to develop theory or conceptual frameworks that relate to care, including how to understand unmet need. ASCOT measures have been applied, internationally, in a range of ways, with a focus on evaluation studies. Further research is required to explore how ASCOT is used in practice, including care planning. Focus is also needed on ensuring users select the appropriate measure for their study, and widen awareness of adapted versions to support data collection, like ASCOT easy read (ASCOT-ER).

Context: The contribution of homecare services to supporting older adults with their food and drink-related needs and improving outcomes has been relatively underexplored. Objective: To identify the literature on the role of homecare in addressing older adults’ food and drink care-related needs and improving outcomes. Method: Scoping review. Systematic searches were conducted in four databases. Inclusion criteria were studies (any method) of food and drink-related needs and/or outcomes of older adults accessing homecare. Identified records were screened by title/abstract and, if eligible, full text against eligibility criteria. Selected records (n = 22) were charted. Full texts were analysed thematically. Findings: Three themes were identified: (1) conceptualisation of food and drink outcomes/needs; (2) the role of homecare in supporting older adults, including barriers and facilitators and (3) innovative service delivery models or interventions. The literature tended to focus on supporting nutrition and avoiding malnutrition. Some studies focussed on the role of person-centred homecare in improving older people’s quality of life, by considering the social, personal and cultural or religious aspects of food and drink. Barriers to the delivery of high-quality care by homecare workers included short visits, lack of training and poor communication with family and healthcare professionals. Innovative interventions or service delivery models did not always consider the actual or potential role of homecare. Limitations: Diverse definitions of homecare, internationally, were a challenge to identifying literature and drawing conclusions. Implications: Further research is needed on the role of homecare in supporting older adults with their food and drink needs, especially in designing and implementing innovative interventions and models of service delivery.

This study aimed to adapt and assess the content validity of the ASCOT Easy Read (ASCOT-ER) for older people accessing social care. A co-production working group of 8 older social care users and their supporters was established to evaluate the comprehensibility and relevance of the ASCOT-ER images, wording and layout. Changes made by the working group were iteratively tested using cognitive interviewing techniques (think aloud) with 25 older social care users not able to self-complete the original ASCOT. Co-research with people with dementia and their supporters was critical to the development of an effective and accessible tool. Issues identified with comprehension, recall, judgement and response were addressed through iterative adjustments to design, layout and wording. An unexpected finding was that illustrations were disliked or disregarded by the majority of people, and, in particular, those living with dementia. This result contrasts with the typical assumption of easy read approaches, where illustrations are expected to enhance comprehension. The ASCOT-ER measure for older people is suitable for older people using social care services with mild to moderate dementia, mild cognitive impairment and other age-related needs. The revisions applied were designed to improve comprehension, judgement and response for this group and even those who were most cognitively impaired experienced fewer issues by the final round of testing. Nonetheless, some prompting was still required, particularly for those with higher levels of cognitive impairment and it is likely that some respondents will require the questionnaire to be administered in an interview format.