A novel method of proxy reporting questionnaire based measures of health-related quality of life of people with dementia in residential care: a psychometric evaluation.

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

Experiences of imagery‐based treatment for anxiety in bipolar disorder: A qualitative study embedded within the image based emotion regulation feasibility randomised controlled trial

Objectives: Intrusive mental imagery is associated with anxiety in bipolar disorder (BD) and presents a novel treatment target. Imagery‐based treatments show promise in targeting anxiety and improving mood instability. This qualitative study explored experiences of receiving up to 12 sessions of a brief structured psychological intervention: Image‐Based Emotion Regulation (IBER), which targets maladaptive mental imagery in the context of BD with an aim to modify the emotional impact of these images. Design: A qualitative study embedded within the Image Based Emotion Regulation (IBER) feasibility randomised controlled trial. Methods: Semi‐structured interviews were conducted with 12 participants in the treatment arm of the trial who received IBER + treatment as usual. Data were analysed using thematic analysis. Results: Despite some initial scepticism about imagery‐focused treatment, all participants expressed broadly positive accounts of treatment experiences. High levels of engagement with imagery modification techniques, beneficial use of techniques post treatment and improvements in anxiety management and agency were described by some. Three sub‐groups were identified: those who reported a powerful transformative impact of treatment; those who embedded some new techniques into their daily lives, and those who felt they had techniques to use when needed. No participants reported overall negative experiences of the IBER treatment. Conclusions: Findings from this study highlight the value for treatment recipients of modifying the underlying meanings associated with maladaptive imagery, and the personalised skills development to manage anxiety within bipolar disorders. Findings can inform treatment refinements and further trial‐based evaluations

Improving hearing and vision in dementia : Protocol for a field trial of a new intervention

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.</jats:sec

Feasibility of an Intervention to Support Hearing and Vision in Dementia:The SENSE-Cog Field Trial

OBJECTIVES: People with dementia (PwD) frequently experience hearing and vision impairment that is underrecognized and undertreated, resulting in reduced quality of life. Managing these impairments may be an important strategy to improve outcomes in PwD. Our objective was to field-trial a multifaceted sensory intervention (SI) to enhance hearing and vision in PwD. DESIGN: An international single-arm open-label feasibility, acceptability, and tolerability study. SETTING: Home-based setting in the United Kingdom, France, and Cyprus. PARTICIPANTS: Adults aged 60 years and older with mild-to-moderate dementia and uncorrected or suboptimally corrected hearing and/or vision impairment, and their study partners (n = 19 dyads). INTERVENTION: A sensory intervention (SI), comprising assessment of hearing and vision, fitting of corrective devices (glasses, hearing aids), and home-based support from a sensory support therapist for device adherence and maintenance, communication training, referral to support services, environmental sensory modification, and optimization of social inclusion. MEASUREMENTS: Ratings of study procedure feasibility, and intervention acceptability/tolerability, ascertained through questionnaires, participant diaries, therapist logbooks, and semistructured interviews. RESULTS: We successfully delivered all intervention components, and these were received and enacted as intended in all those who completed the intervention. No serious adverse events were reported. Acceptability (ie, understanding, motivation, sense of achievement) and tolerability (ie, effort, fatigue) ratings of the intervention were within a priori target ranges. We met recruitment and retention (93.8%) targets in two of the three sites. Participants completed more than 95% of diary entries, representing minimal missing data. Delays in the logistics circuit for the assessment and delivery of hearing aids and glasses were identified, requiring modification. The need for minor modifications to some outcome measures and the inclusion criteria were identified. CONCLUSION: This is the first study combining home-based hearing and vision remediation in PwD. The positive feasibility, acceptability, and tolerability findings suggest that a full-scale efficacy trial, with certain modifications, is achievable

Individualised sensory intervention to improve quality of life in people with dementia and their companions (SENSE-Cog trial): study protocol for a randomised controlled trial

Background: Hearing and vision impairments are highly prevalent in people with dementia and may have a negative impact on quality of life and other dementia-related outcomes. Intervening to optimise sensory impairment and support sensory function may be a means of improving dementia-related outcomes. The SENSE-Cog trial will test whether a home-based multi-part sensory intervention is effective in improving quality of life and other key outcomes in people with dementia and hearing or vision problems (or both) and their companions. Methods: This is an European, multi-centre, observer-blind, pragmatic, randomised controlled trial. Three hundred fifty four people with dementia and hearing or vision impairment (or both) and their companions will be randomly assigned to receive either "care as usual" or a multi-component sensory intervention including assessment and correction of hearing or vision impairments (or both), home-based (maximum 10 visits over 18 weeks), therapist-delivered sensory support (that is, adherence to devices; improving the sensory environment (that is, lighting), communication training, and sign-posting to other support agencies). Change from baseline to intervention end (18 weeks) and post-intervention (36 weeks) will be compared between the two arms in the following outcomes: quality of life (primary endpoint), sensory and cognitive functional ability, relationships, mental well-being, health resource utilisation and cost-effectiveness. Discussion: This is one of two articles outlining the SENSE-Cog trial. Here, we describe the protocol for the effectiveness of the SENSE-Cog intervention. A parallel and complementary process evaluation will be described elsewhere. If the SENSE-Cog trial demonstrates that the sensory intervention improves outcomes in dementia, we will make a toolkit of training materials, resources and information available to health and social care providers to implement the intervention in routine practice. This will be a significant contribution to the therapeutic management of people with dementia and sensory impairment. Trial registration: ISRCTN (Trial ID: ISRCTN17056211) on 19 February 2018

Protocol for the IDEAL-2 longitudinal study: Following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life

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 < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia. Discussion IDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.Alzheimer’s Society & The University of Exete

Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services.

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

Working through interpreters in old age psychiatry: a literature review

Purpose – The purpose of this paper is to systematically appraise the effect of use of interpreters for mental health problems in old age. The primary objective of the review is to assess the impact of a language barrier for assessment and management in relation to mental health problems in the old age. The secondary objectives are to assess the effect of the use of interpreters on patient satisfaction and quality of care, identify good practice and make recommendations for research and practice in the old age mental health. Design/methodology/approach – The following data sources were searched for publications between 1966 and 2011: PubMed, PsycINFO, CINAHL and Cochrane Library. The authors found in previous reviews that a substantial number of papers from developing and non-English speaking countries are published in journals not indexed in mainstream databases, and devised a search strategy using Google which identified a number of papers, which could not be found when the search was limited to scientific data bases only (Farooq et al., 2009). The strategy was considered especially important for this review which focuses on communication across many different languages. Thus, the authors conducted a search of the World Wide Web using Google Scholar, employing the search term Medical Interpreters and Mental Health. The search included literature in all languages. The authors also searched the reference lists of included and excluded studies for additional relevant papers. Bibliographies of systematic review articles published in the last five years were also examined to identify pertinent studies. Findings – Only four publications related specifically to “old age” and 33 addressed “interpreting” and “psychiatry” generally. Four articles presented original research (Parnes and Westfall, 2003; Hasset and George, 2002; Sadavoy et al., 2004; Van de Mieroop et al., 2012). One article (Shah, 1997) reports an “anecdotal descriptive account” of interviewing elderly people from ethnic backgrounds in a psychogeriatric service in Melbourne and does not report any data. Therefore, only four papers met the inclusion and exclusion criteria and present original research in the field of “old age”, “psychiatry” and “interpreting”. None of these papers present UK-based research. One is a quantitative study from Australia (Hasset and George, 2002), the second is a qualitative study from Canada (Sadavoy et al., 2004), in the third paper Van de Mieroop et al. (2012) describe community interpreting in a Belgian old home and the final paper is an American case study (Parnes and Westfall, 2003). Practical implications – Interviewing older patients for constructs like cognitive function and decision-making capacity through interpreters can pose significant clinical and legal problems. There is urgent need for training mental health professionals for developing skills to overcome the language barrier and for interpreters to be trained for work in psychogeriatrics. Social implications – The literature on working through interpreters is limited to a few empirical studies. This has serious consequences for service users such as lack of trust in services, clinical errors and neglect of human rights. Further studies are needed to understand the extent of problem and how effective interpreting and translating services can be provided in the routine clinical practice. It is also essential to develop a standard of translation services in mental health that can be measured for their quality and also efficiency. At present such a quality standard is not available in the UK, unlike Sweden (see www.regeringen.se/sb/d/3288/a/19564). This omission is disturbing – especially when decisions on human rights are being considered as part of the Mental Health Act. Such a standard can best be achieved by collaboration between medical profession and linguists’ professional associations (Cambridge et al., 2012). Originality/value – Whilst translation/interpretation has been addressed more generally in mental health: specific considerations related to old age psychiatry are almost absent. This needs urgent rectification given that a large proportion of older people from BME communities will require translation and interpretation services