A Systematic Review of Educational Interventions for Informal Caregivers of People Living with Dementia in Low and Middle-Income Countries.

Objectives: With the increasing prevalence of dementia worldwide, there is a growing need for an integrated approach to dementia care. Little is known at present about the benefits of educational interventions for informal caregivers of people living with dementia (PLWD) in low- and middle-income countries (LMICs). This review aimed to identify and synthesise the current research on these interventions. Method: Four databases (PsycINFO, Medline, Web of Sciences and Scopus) were searched, alongside Google Scholar and reference lists. The Downs and Black checklist was used for quality assessment and data relating to intervention characteristics, outcomes, and educational component features were compared. Results: Eighteen papers detailing 17 studies were included. All studies presented found at least one significant outcome/effect. Study comparison was difficult due to diverse methodologies, intervention structures, and outcomes. Study quality was also variable. Four studies had education as the primary focus, and most interventions utilised multicomponent and group-based designs. Interventions that included group delivery tended to find more significant results than individual approaches. Intervention length did not appear to influence efficacy. Regular delivery and an average intervention dosage of around 12 h appeared most effective. Conclusions: Research into educational interventions for caregivers in LMICs appears to be promising and can help guide future interventions towards clinical implementation. A multicomponent group intervention trialled in Egypt provided particularly favourable findings. Future studies should focus on understanding the active mechanisms within such interventions to optimize their effectiveness. Collaboration between LMICs, high-income countries (HICs), and caregivers is crucial in developing interventions tailored to meet caregiver needs whilst accounting for feasibility and equity for dementia care worldwide.

Investigating the Feasibility, Acceptability, and Impact of a Brief Dementia Awareness for Caregivers (DAC) Course: A Mixed Methods Study.

Aim: Informal caregivers are vital in assisting people with dementia. However, this role can significantly impact caregivers' lives and interventions to support them are crucial. This study aimed to develop a United Kingdom version of the Dementia Awareness for Caregivers (DAC) course and to investigate the feasibility, acceptability, and impact of delivering the course online to informal dementia caregivers. Methods: This study comprised a mixed-methods pre-post intervention parallel group design. Fifty-one informal dementia caregivers were randomized into either an experimental (receiving the DAC course) or control group (treatment as usual). Outcomes relating to perceived burden, attitude, competence, relationship quality and positive caregiving aspects were measured at baseline and follow-up, alongside statistics relating to recruitment, retention, attendance, and adherence. Semi-structured interviews were conducted to explore qualitative acceptability and impact among caregivers who completed the DAC course. Results: The study found high retention and attendance rates with low levels of unexplained attrition. Analysis indicated positive change for four of the outcome measures in favor of the DAC course, however this was not statistically significant. Qualitative analysis generated 11 subthemes organized into four overarching main themes; "acceptability of course", "impact of course on caregivers", "using skills from course" and "outcome measures". Conclusion: Findings provide promising evidence for the feasibility, acceptability and impact of the Dementia Awareness for Caregivers course when delivered online to informal caregivers in the United Kingdom.

Measuring hope and resilience in carers of people living with dementia: The positive psychology outcome measure for carers (PPOM-C).

OBJECTIVES: Positive psychology outcome measures aim to quantitatively document the character strengths that people use to maintain their wellbeing. Positive aspects of caregiving including the use of character strengths is gaining credence in dementia carer literature but there remain few psychometrically robust tools by which to capture this. The current study evaluated the psychometric properties of a newly developed measure of hope and resilience for family carers of people living with dementia. METHODS: An online study where family carers (n = 267) completed the newly adapted Positive Psychology Outcome Measure - Carer version (PPOM-C), the Hospital Anxiety and Depression Scale - Depression subscale (HADS-D), The Short Form Health Survey (SF-12), and The Multidimensional Scale of Perceived Social Support (MSPSS). RESULTS: Psychometric analysis indicated strong properties for the PPOM-C in family carers, with two items dropped to improve the internal consistency. Convergent validity was established, with strong correlations between the hope, resilience, depression symptomology, quality of life and social support. A Confirmatory Factor Analysis indicated acceptable model fit. DISCUSSION: The PPOM-C is a psychometrically robust tool that can be recommended for use in large scale psychosocial research. The use of this measure in research and practice will provide a more nuanced understanding of the caregiving role and how to support wellbeing in this population.

Stigma among UK family carers of people living with dementia.

BACKGROUND: Models of caregiving seldom include the role of stigma when understanding the experiences of carers of people living with dementia. AIMS: To investigate the validity of the Family Stigma Instrument (FAMSI), and use it to explore the extent to which experiences of stigma are endorsed in family carers of people living with dementia. METHOD: The FAMSI was tested with 70 carers of people living with dementia. They also completed a measure of self-esteem. RESULTS: The FAMSI demonstrated some good preliminary psychometric properties. Carers endorsed stigma by association more so than affiliate stigma constructs, suggesting that carers were aware that others viewed or treated them in a stigmatising fashion but did not endorse internalised consequences of this as much (e.g. behavioural or affective affiliate stigma). CONCLUSIONS: The FAMSI offers new avenues for understanding the contribution of stigma to caregiver burden in dementia. It also captures the positive aspects of caregiving, which may mitigate internalised stigma in family carers, and has good potential for evaluating stigma-neutralising interventions in dementia care.

Validation of the multidimensional scale of perceived social support (MSPSS) for family caregivers of people with dementia.

BACKGROUND AND OBJECTIVES: The Multidimensional Scale of Perceived Social Support (MSPSS) is a measure of perceived adequacy of social support. Whilst this is an important area of research for family caregivers of people with dementia, it is not clear whether the MSPSS retains its psychometric properties when used with this population. The aim was to conduct an in-depth psychometric analysis of the MSPSS to ensure that it remains a psychometrically robust measure for this population. RESEARCH DESIGN AND METHODS: Participants completed measures online using a self-complete procedure. A subsample completed the MSPSS twice, within a 4-week period. Properties assessed were internal consistency, floor and ceiling effects, test-retest reliability, convergent validity and factor structure. RESULTS: 270 participants completed the study and 58 comprised the test-retest sample. Internal consistency was excellent for the total score (α = 0.92) and three subscales (α = 0.92-0.94). Significant correlations were observed in the expected directions with depression (r = -.48, p < .001) and mental (r = 0.32, p<.001) and physical (r = 0.17, p=.003) health-related quality of life. Test re-test reliability was excellent for the total score (ICC = 0.90 95%CI = 0.84, 0.94) and subscale scores (ICC = 0.84-0.89). Confirmatory factor analysis indicated acceptable fit indices for the three-factor solution. DISCUSSION AND IMPLICATIONS: The MSPSS has robust psychometric properties when used with caregivers of people with dementia and may be recommended for use with this population. Further research is required to establish responsiveness and determine cross-cultural validity.

Development and acceptability of a brief, evidence-based Dementia Awareness for Caregivers course in low- and middle-income countries.

BACKGROUND: Knowledge of and attitudes towards dementia vary across countries, and for caregivers in low- and middle-income countries (LMICs), access to information can be challenging. There is an urgent need for brief, easily accessible and culturally appropriate educational courses for caregivers of persons with dementia, providing much needed information whilst addressing important psychological concepts such as stigma. METHODS: An international and multidisciplinary team developed Dementia Awareness for Caregivers (DAC) courses in four stages: (1) scoping review and module agreement, (2) development of an International template (DAC-International) containing a standardised process for adding information, (3) development of local DACs using a standardised format and (4) acceptability of courses in Brazil, India and Tanzania. FINDINGS: The DAC-International was developed, comprising three modules: 'What is dementia?'; 'Positive engagement' and 'Caring for someone with dementia'. Three local versions were developed from this (DAC-Brazil, DAC-India and DAC-Tanzania), where additions of country-specific information included prevalent stereotypes and the addition of culturally relevant case studies. An initial field test was conducted in each country (n = 85), which indicated acceptability to participants. CONCLUSIONS: The methods used here resulted in culturally valid and acceptable educational courses for carers of people with dementia. Future work will consist of large-scale, formal evaluations and the development of additional local courses.

The experiences of those affected by parental young onset dementia: A qualitative systematic literature review.

AIM: To develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years. METHOD: A critical appraisal and thematic synthesis of the available qualitative literature regarding the lived experience of individuals whose parent has a diagnosis of young onset dementia. A three-stage approach for conducing thematic synthesis was followed. RESULTS: 15 articles were included in the review. Four analytical themes and 11 subthemes were found. The analytical themes were 'making sense of dementia', 'impact of dementia', 'coping' and 'support'. CONCLUSIONS: The experiences of those affected by parental young onset dementia vary widely. There is a lack of knowledge and understanding of young onset dementia by professionals and the public, and a scarcity of appropriate support. This has clinical implications for professionals working with families affected by young onset dementia, in particular with regards to service design and delivery.

Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia.

BACKGROUND: A diagnosis of dementia presents individuals with both social and psychological challenges but research on self-stigma in dementia has been largely confined to qualitative approaches due to a lack of robust outcome measures that assess change. The Stigma Impact Scale (SIS) is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and preliminary psychometric properties of self-stigma measures for people with dementia for use as measures of change. METHOD: A 4-step sequential design of identifying, selecting, adapting and testing psychometric measures as follows: 1) identification of stigma outcome measures through reviewing anti-stigma intervention literature, 2) selection of candidate measures through quality assessment (Terwee criteria) and expert consultation, 3) adaptation for UK dementia population (Stewart and colleagues Modification Framework) 4) testing of adapted measures in people living with dementia (N=40) to establish acceptability and preliminary reproducibility (test retest), criterion (concurrent with SIS) and construct (negative convergence with Rosenberg self-esteem scale) validity. RESULTS: Seven measures were identified from the review, but most were poor quality (Terwee range: 0-4). Three measures were selected for modification: Stigma Stress Scale; Secrecy subscale of the Stigma Coping Orientation Scale; Disclosure Related Distress Scale. Internal consistency and test-retest reliability were acceptable (.866≤α≤ .938; ICC .721-.774), except for the Stigma Stress Scale (α= .643) for which the component subscales (perceived harm, ability to cope) had stronger psychometric properties. Concurrent validity with the SIS was not established (r<.7) although there were significant correlations between total SIS and perceived harm (r=.587) and between internalized shame and secrecy (r=.488). Relationships with self-esteem were in the hypothesized direction for all scales and subscales indicating convergent validity. CONCLUSION: Stigma scales from mental health are not readily adapted for use with people with dementia. However there is preliminary evidence for the acceptability, reliability and validity of measures of perceived harm, secrecy and stigma impact. Further conceptual and psychometric development is required.

A psychometric appraisal of positive psychology outcome measures in use with carers of people living with dementia: a systematic review.

OBJECTIVES: This review aimed (i) to identify all positive psychology measures in use with family carers and (ii) to determine their psychometric properties. DESIGN: Literature searches were made in Ovid MEDLINE, PsychINFO, and Web of Science. The identified measures were then subjected to analysis via an established quality appraisal tool. RESULTS: Twenty-five instruments representing the positive psychology constructs of resilience, self-efficacy, and positive aspects to caregiving were found. Two reviewers independently evaluated the measures using the quality appraisal tool. The Gain in Alzheimer Care Instrument, the Resilience Scale, and the Caregiver Efficacy Scale were found to be the highest scoring measures within their respective constructs. CONCLUSIONS: Although some robust instruments were identified, there were numerous examples of important psychometric properties not being evidenced in development papers. Future researchers and clinicians should administer evidence-based outcome measures with adequate psychometric properties representing positive and negative constructs to obtain a comprehensive picture of a person's well-being.

Psychosocial interventions for dementia in low- and middle-income countries (LMICs): a systematic review of effectiveness and implementation readiness.

INTRODUCTION: Despite wide uptake in high-income countries (HICs), less is known about the effectiveness and implementation of psychological, social and cognitive interventions in low- and middle-income countries (LMICs). Despite this, such interventions are increasingly used. The aim of this review was to appraise the effectiveness and implementation readiness of psychosocial interventions for people with dementia in LMICs. METHODS: A systematic search of databases from 1998-2019. Studies were rated on two scales assessing quality and implementation readiness. RESULTS: Seventeen articles describing 11 interventions in six countries were evaluated. Interventions included Cognitive Stimulation Therapy (CST), a Multidisciplinary Cognitive Rehabilitation Programme (MCRP), singing interventions, occupational therapy and reminiscence therapy. The quality of included studies was variable, and many had low sample sizes. Evidence for improving both cognition and quality of life was found in two interventions: Cognitive Stimulation Therapy (CST) and a Multidisciplinary Cognitive Rehabilitation Programme (MCRP). Implementation issues were more likely to be explored in studies of Cognitive Stimulation Therapy (CST) than in any other intervention. CONCLUSIONS: Of the included studies here, CST appears to be the most implementation ready, improving both cognition and quality of life with implementation readiness effectively explored in two LMIC countries: India and Tanzania.

Psychometric properties of outcome measures in non-pharmacological interventions of persons with dementia in low-and middle-income countries: A systematic review.

Despite high burden of dementia in low-and middle-income countries (LMICs), only a small number of clinical trials of psychosocial interventions for persons with dementia (PwD) have been conducted in these settings. It is essential that such trials use appropriate outcome measures that are methodologically robust and culturally appropriate to evaluate the effectiveness of interventions. We carried out a systematic review to examine the evidence base and psychometric properties of measures employed in these studies in LMICs. A systematic search of published literature on randomised controlled trials (RCT) of psychosocial interventions for PwD in LMICs between 2008 and April 2020 was carried out. Measures employed in each of the eligible studies were identified and through a focused search, we further explored the evidence base and psychometric properties employing Terwee criteria. Data extraction and quality appraisal were conducted by two independent reviewers. The review identified 41 measures from 17 RCTS which fulfilled eligibility criteria and they examined effectiveness across the domains of cognition (n = 16), behaviour and psychological symptoms (n = 11) and quality of life (n = 8). Of these 41, we were able to access relevant literature only for 18 and they were subject to psychometric analysis. Psychometric properties of these 18 instruments were at best modest, with Terwee scores ranging from 3 (low) to 15 (moderate). A majority of the studies were from China (n = 5) and Brazil (n = 6). The evidence base for the routinely employed measures in RCTs of non-pharmacological interventions for PwD in LMICs is limited. The quality of adaptation and validation of these instruments is variable and studies are largely uninformative about their psychometric properties and cultural appropriateness to the study setting. There is an urgent need to develop scientifically robust instruments in LMIC settings that can be confidently employed to measure outcomes in trials of psychosocial interventions for PwD.

Cognitive stimulation therapy for dementia: Provision in National Health Service settings in England, Scotland and Wales.

Objectives: Cognitive stimulation therapy (CST) is a brief, non-pharmacological intervention for people with dementia, with an established evidence base for improving cognition and quality of life. It is widely implemented in National Health Service (NHS) settings, but little is known about its naturalistic use. The aim of this survey was to identify and explore inclusion criteria, dose and quality of CST across services in Great Britain (England, Scotland and Wales).Methods: All NHS memory clinics and services for people with dementia were contacted and asked to complete a mixed methods online survey on CST delivery in their service. Questions were centred on who provided CST, who received CST, the dose of CST and any outcomes that were routinely measured.Results: A total of 57/186 services responded, giving a response rate of 30.7%. While the majority reported offering CST (87.7%), there was variability in how this was delivered. Differing inclusion criteria included the use of varying cognitive and behavioural outcome measures, and CST was reported as being offered once and twice weekly. Services also differed in how they evaluated the quality of CST and how this evidence was incorporated for future sessions.Conclusion: While there was a low response rate, this survey indicates that there is significant variability in how CST is used in clinical practice, with many trusts not adhering to the evidence base. To ensure that people with dementia are consistently offered evidence-based, high-quality CST across NHS settings, further standardisation of inclusion criteria, dose and outcomes is needed.

A New Approach for Developing "Implementation Plans" for Cognitive Stimulation Therapy (CST) in Low and Middle-Income Countries: Results From the CST-International Study.

Background: Even with a strong evidence base, many healthcare interventions fail to be translated to clinical practice due to the absence of robust implementation strategies. For disorders such as Alzheimer's disease and other dementias, access to evidence-based interventions beyond research settings is of great importance. Cognitive Stimulation Therapy (CST) is a brief, group-based intervention, with consistent evidence of effectiveness. Methods: An implementation focused, three-phase methodology was developed using extensive stakeholder engagement. The methods resulted in a standardized Implementation Plan for the successful translation of CST from research to practice. The methodology was developed using the Consolidated Framework for Implementation Research (CFIR) and refined in three countries that vary in levels of economic development and healthcare systems (Brazil, India and Tanzania). Results: Five Implemention Plans for CST were produced. Each plan contained implementation strategies and action plans devised in conjunction with policy professionals, healthcare professionals, people with dementia and family carers, and an international team of researchers and clinicians. Conclusion: This novel methodology can act as a template for implementation studies in diverse healthcare systems across the world. It is an effective means of devising socio-culturally informed Implementation Plans that account for economic realities, health equity and healthcare access.

The cognitive footprint of medication: A review of cognitive assessments in clinical trials.

WHAT IS KNOWN AND OBJECTIVE: Polypharmacy is common, and many medications have cognitive side effects. Such effects can be transient and subside when the drug in question is discontinued or can be long-lasting with effects present for years afterwards. Although formal assessment of cognition is feasible and often undertaken in neuropsychiatric trials, these effects are usually neglected in the evaluation of any non-neuropsychiatric health intervention. Medication effects can be assessed within a cognitive footprint framework, to account for the magnitude and the duration of cognitive side effects, with some likely to have a greater and more lasting effect than others. COMMENT: Adverse event reporting suggests that many medications may be indirectly associated with cognitive effects, for example due to headaches, somnolence and 'dizziness'; however, inferring causation from adverse event reporting can be problematic. In order to better understand the impact of investigational drug and concomitant medications effect on cognition, it would be essential to ensure cognition is prioritized in drug development evaluation. It is suggested that simple instruments that can be easily incorporated into existing trial designs are used to assess the cognitive footprint of medication. WHAT IS NEW AND CONCLUSION: We present an overview of existing measures of cognition that can be integrated into drug trials in order to provide a cognitive footprint. Like quality of life testing, such tests should be administered as a standard throughout the key assessment stages of the design of the trial to ensure that any effects on this equally important outcome are also documented. Furthermore, employing routine cognition testing may also enable researchers to identify unanticipated beneficial and non-beneficial effects on cognition. Provision of such a cognitive footprint profile of drugs may provide the necessary evidence to enable decision-makers to make informed decisions on risk-benefit analysis that can subsequently make trade-offs between different drug regimens.

The nature of decision-making in people living with dementia: a systematic review.

Objective: The objectives of this systematic review were to: 1) understand how people living with dementia are involved in making decisions; 2) explore the different decisional styles and domains of decision-making that people living with dementia experience and 3) identify what influences the level of decisional involvement of people living with dementia.Methods: A systematic review of literature identified studies from Medline, PsycINFO, HAPI and CINAHL databases. Search terms related to decision-making and dementia. Qualitative and quantitative research designs were included. Appraisal of included studies was done using quality ratings. All studies focused on how decision-making took place. Extracted findings were synthesised narratively with concept mapping, conceptualisation and an exploration of connections between studies to develop an overall model of decision-making involvementResults: Fifteen studies fully met the eligibility criteria (thirteen qualitative and two quantitative). All studies had moderate (n = 10) to high (n = 5) quality ratings. Participants were predominantly people living with dementia (n = 13), Parkinson's disease and stroke. The model of decision-making encompasses four decisional styles (managed autonomy, mutual, reductive and delegated) determined by different degrees of involvement from the person living with dementia and their supporter. The decisional style implemented was influenced by the presence or absence of background (the Freedom of Choice framework) and contextual factors (risk, relationships and resources).Conclusion: Decision-making in dementia is complex and influenced by many factors beyond cognitive impairment alone. This review indicates that decision-making in dementia takes place through decisional styles, determined by unique levels of involvement from people living with dementia and their carers.

Mixed methods implementation research of cognitive stimulation therapy (CST) for dementia in low and middle-income countries: study protocol for Brazil, India and Tanzania (CST-International).

INTRODUCTION: In low/middle-income countries (LMICs), the prevalence of people diagnosed with dementia is expected to increase substantially and treatment options are limited, with acetylcholinesterase inhibitors not used as frequently as in high-income countries (HICs). Cognitive stimulation therapy (CST) is a group-based, brief, non-pharmacological intervention for people with dementia that significantly improves cognition and quality of life in clinical trials and is cost-effective in HIC. However, its implementation in other countries is less researched. This protocol describes CST-International; an implementation research study of CST. The aim of this research is to develop, test, refine and disseminate implementation strategies for CST for people with mild to moderate dementia in three LMICs: Brazil (upper middle-income), India (lower middle-income) and Tanzania (low-income). METHODS AND ANALYSIS: Four overlapping phases: (1) exploration of barriers to implementation in each country using meetings with stakeholders, including clinicians, policymakers, people with dementia and their families; (2) development of implementation plans for each country; (3) evaluation of implementation plans using a study of CST in each country (n=50, total n=150). Outcomes will include adherence, attendance, acceptability and attrition, agreed parameters of success, outcomes (cognition, quality of life, activities of daily living) and cost/affordability; (4) refinement and dissemination of implementation strategies, enabling ongoing pathways to practice which address barriers and facilitators to implementation. ETHICS AND DISSEMINATION: Ethical approval has been granted for each country. There are no documented adverse effects associated with CST and data held will be in accordance with relevant legislation. Train the trainer models will be developed to increase CST provision in each country and policymakers/governmental bodies will be continually engaged with to aid successful implementation. Findings will be disseminated at conferences, in peer-reviewed articles and newsletters, in collaboration with Alzheimer's Disease International, and via ongoing engagement with key policymakers.

Positive psychiatry/psychology for older adults: a new and important movement but robust methodology is essential.

Positive psychiatry and the related positive psychology are offering a much needed alternative framework through which to view the psychology of old age (Jeste et al., 2015). Traditional models of old age tend to approach the subject from a negative view point where themes of dependency and decline can be common (Cumming and Henry, 1961). In contrast, positive psychiatry and psychology refer to the scientific study of strengths and capabilities that contribute to well-being (Seligman, 1998). Some of these can be thought of as character strengths and evidence suggests that concepts such as hope, humour, integrity, and gratitude are universal, with examples documented in at least 54 nations across the world (Park et al., 2006). Researchers aligned to these theoretical models seek to explore complex approaches to measuring and improving mental health, recognizing that well-being is often a dynamic interplay between positive and negative psychological processes and outcomes (Lomas and Ivtzan, 2016).

The psychometric properties of the control, autonomy, self-realisation and pleasure scale (CASP-19) for older adults with dementia.

INTRODUCTION: Asset based approaches to dementia research and measurement emphasise the need to also assess the strengths and capabilities that people with dementia retain, rather than assessing only losses or deficits. The CASP-19 proposes wellbeing as the satisfaction of four 'needs' (control, autonomy, self-realisation and pleasure). The CASP-19 may reflect the asses-based approach and has been validated in over 20 countries. The aim of this study was to evaluate the CASP-19's psychometric properties in older adults with dementia. METHODS: An observational study was conducted at five NHS trusts across England. Participants were asked to either complete the CASP-19 by interview or self-report, alongside four other measures to assess psychometric properties. RESULTS: Internal consistency overall was good (α = .856) but the autonomy subscale fell below the acceptable. The CASP-19 was significantly correlated in the expected direction with measures of quality of life (r = .707), depression (r = -.707) and additional measures. It also remained moderately stable over a one-week period but factor analyses indicated a 12-item measure may be more robust. CONCLUSIONS: Despite some variations, the CASP-19 appears to have adequate psychometric properties for older adults with dementia and can be used in future research and practice.

Psychometric Properties and Factor Analysis of the Engagement and Independence in Dementia Questionnaire (EID-Q).

BACKGROUND/AIMS: Independence and social engagement are important outcomes for people with dementia. The aim of this study was to conduct an in-depth psychometric assessment of the Engagement and Independence in Dementia Questionnaire (EID-Q), a measure of social independence. METHODS: This was an observational study at five NHS sites across England. Participants completed the EID-Q alongside additional measures. Psychometric analysis included internal consistency, test-retest reliability, convergent validity, and factor analyses. RESULTS: A total of 225 people living with dementia completed the study. Internal consistency was excellent (α = 0.921) and the measure remained moderately stable over a 1-week period (ICC = 0.768). Significant correlations were observed between quality of life (r = 0.682) and depression (r = -0.741; both p < 0.001), indicating the importance of these concepts for wellbeing in dementia. Factor analysis indicated the presence of five factors which loaded onto a second order two-factor solution. These latent factors were named "sense of independence" and "social engagement." CONCLUSIONS: The EID-Q demonstrated acceptable psychometric properties and the factor solution had an adequate model fit. The strong correlations suggest that social independence is strongly related to depression and quality of life. Future work will entail an analysis of responsiveness to intervention and further large-scale work.