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Background There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to ‘live well’ vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs. Methods IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or

Sarah C Smith, AA Jolijn Hendriks, Jemma Regan, Nick Black Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, UK Background: In research in residential care, health-related quality of life (HRQL) is usually measured using either observational methods or standardized questionnaires. DEMQOL-Proxy is a standardized questionnaire measuring HRQL of people with dementia and is usually reported by a family carer. However, not all residents have a family carer who visits often enough to act as a proxy. Objectives: We evaluated the psychometric performance of DEMQOL-Proxy when reported on behalf of people with dementia in residential care by a “trained proxy” (DEMQOL-Proxy-TP). Participants: We recruited a sample of 87 people with dementia living in care homes around the UK. Methods: We used modern psychometric methods (based on the Rasch model) to evaluate DEMQOL-Proxy-TP (on behalf of 85 residents) in a cross-sectional study. We evaluated scale-to-sample targeting, ordering of item thresholds, item fit to the model and differential item functioning (sex, age, type of dementia), local independence, unidimensionality and reliability on the full set of items (31 items) and also a smaller item set (26 items). Results: The smaller item set (DEMQOL-Proxy-TP-26) performed better than the original item set and was found to fit the model (p = 0.68). Nevertheless, 17 items were found to have disordered thresholds, and 24 pairs of items showed local dependency (residual correlations >0.3). There were also some areas where scale-to-sample targeting could be improved. Conclusion: After resolving the identified anomalies, DEMQOL-Proxy-TP can provide adequate measurement of HRQL of people with dementia living in residential care, particularly when no family carer is available. This can be interpreted at the group level but is not yet robust enough for use at the individual level. Future work will compare these results with the psychometric performance of DEMQOL-Proxy reported by family carers and DEMQOL self-reported by the residents. Keywords: dementia, DEMQOL-Proxy, health-related quality of life, Rasch Measurement Theory, trained proxy

Background:Age-related hearing and vision problems are common among people with dementia and are associated with poorer function, reduced quality of life and increased caregiver burden. Addressing sensory impairments may offer an opportunity to improve various aspects of life for people with dementia.Methods:Electronic databases were searched using key terms dementia, hearing impairment, vision impairment, intervention, and management. Database searches were supplemented by hand searching bibliographies of papers and via consultation with a network of health professional experts. Studies were eligible for inclusion if they included adults aged over 50 with dementia with adult-onset hearing or vision impairment who had received a hearing or vision intervention in relation to cognitive function, rate of decline, psychiatric symptoms, hearing/vision-related disability, quality of life, and/or caregiver burden outcomes. A range of study designs were included. Results were summarized descriptively according to level of evidence and effect sizes calculated where possible. Risk of bias was assessed using Downs and Black's (1998) checklist. The development of the intervention was summarized according to the CReDECI2 scheme. PROSPERO review registration number 2016:CRD42016039737.Results:Twelve papers describing hearing interventions and five papers describing vision interventions were included. Most were of low to moderate quality. One high quality randomized controlled trial of a hearing aid intervention was identified. Hearing interventions included provision of hearing aids, assistive listening devices, communication strategies, hearing aid trouble shooting, and cochlear implantation. Vision interventions included prism lenses, rehabilitation training, and cataract surgery. There was no consistent evidence for the positive impact of hearing/vision interventions on cognitive function, rate of cognitive decline, quality of life, or caregiver burden.Conclusion:Sensory interventions may promote better outcomes, but there is a need for properly powered, controlled trials of hearing and vision interventions on outcomes relevant to people living with dementia.

Barriers to healthcare services experienced by black and minority ethnic (BME) persons with dementia are labelled as “cultural” in existing research. This is a promising shift from an ethno-centric approach to dementia care provision, yet very little research is dedicated to specifically how religion – as distinct from culture – influences healthcare practice. Further consideration of the religion–culture distinction is required; religion and culture are two distinct entities, which inevitably interlink. Cultural themes such as “God's will”, “Religious Ritual” and “Religious Duty”, warrant re-categorisation as “religious”. Sensitivity to the nuances between cultural and religious themes will provide clearer knowledge of how and why BME persons with dementia experience barriers to accessing care services. Further research is needed with regard to the role of religion specifically on dementia care access for BME persons to aim to improve care provision for this underrepresented demographic.

Objective: To investigate how religion influences care pathways for black and minority ethnic individuals with dementia. We conducted a systematic search of the literature to explore how religion affects later presentation to care services, absence of care-seeking and dissatisfaction with care. Exclusion and Inclusion criteria were applied to the research literature. Qualitative and quantitative papers were included. Included studies were assessed independently by four authors according to quality criteria. Two US studies adhered to the final screening stage. Findings from these papers postulated that religion influences care in two polarised ways: (1) Religion hinders access to the traditional health care pathway. (2) Religion assists in positive coping. Collaboration between religious institutions and health care providers is required to improve care referral, provide information dissemination and relieve care-giver burden. UK research in this area is necessary.

IntroductionQuality of life and other key outcomes may be improved by optimising hearing and vision function in people living with dementia. To date, there is limited research assessing the efficacy of interventions aimed at improving hearing and vision in people with dementia. Here, we outline a protocol to field test a newly developed home-based intervention, designed to optimise sensory functioning in people with dementia in three European sites. The results of this study will inform the design and conduct of a full-scale randomised controlled trial (RCT) in five European sites.Methods and analysisIn this multisite, single arm, open label, feasibility study, participants with dementia (n=24) will be assessed for hearing and vision impairments and be prescribed a hearing aid and/or glasses. Each participant will have a study partner (‘dyads’). A subset of dyads will receive ‘sensory support’ from a ‘sensory support therapist’, comprising home visits over 12 weeks. The therapist will offer the following intervention: adherence support for corrective devices; adaptations to the home environment to facilitate sensory function; communication training; and referral to community-based support services. The primary outcomes will be process measures assessing the feasibility, tolerability and acceptability of: (1) the intervention components; (2) the method of implementation of the intervention and (3) the study procedures, including outcome assessment measures. Quantitative data will be collected at baseline and follow-up. Qualitative data using semistructured interviews will be collected postintervention and weekly, using participant diaries. Finally, we will explore a model of cost-effectiveness to apply in the subsequent full-scale trial. This feasibility study is a necessary step in the development of a complex, individualised, psychosocial intervention. The data gathered will allow logistical and theoretical processes to be refined in preparation for a full-scale RCT.Ethics and disseminationEthical approval was obtained in all three participating countries. Results of the field trial will be submitted for publication in a peer-reviewed journal.

A case study comprised of formal interviews, formal observations and informal discussions investigated the motivations and experiences accessing dementia care health and social care services for a Muslim, Pakistani male with dementia. Motivations derived from ‘desperation’ and an inability to access support from family or religious community. Experiences of accessing services were mostly negative. Dementia services were ill-informed about how to support persons with young onset dementia, with pre-existing mental health conditions, from an ethnic minority. Education and training to remove barriers to all dementia care services is required for persons with dementia, their families and within dementia services and religious communities.