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

Yes / The way we perceive and portray dementia has implications for how we act towards people with dementia and how we address the issue of dementia within society. As a multi-disciplinary working group, established within the framework of the European Dementia Ethics Network of Alzheimer Europe, we aimed to describe the different ways that people with dementia are perceived and portrayed within society and to consider the moral implications of this. In the current paper, we address perceptions of dementia as reflected in explanatory models of its cause and nature, descriptions of characteristics of people with dementia, the use of language, media portrayals and the views of people living with dementia. Academics and professionals could use this exploration to reflect on their behaviour and their use of language regarding people with dementia / The taskforce’s work arises from the 2013 Work Plan of Alzheimer Europe, which received funding from the European Union in the framework of the Health Programme.

Yes / In response to the need for improved access to dementia services for minority ethnic communities, the Alzheimer’s Society piloted, in 2014, the Information Programme for South Asian Families (IPSAF), an adapted version of its existing course for carers. It delivered this in partnership with local black and minority ethnic community and faith organisations, a new approach for the Alzheimer’s Society. In most cases, the partnerships formed were strong and effective, and have given rise to ongoing plans for joint working that bring benefits to both the local organisations and the Alzheimer’s Society. However, the current realities of UK voluntary and community sector dynamics raise questions of ownership and issues around how to establish genuine partnerships. In this article, we reflect on what the IPSAF experience indicates about the potential for equitable partnerships between small and large organisations, and draw out lessons for building effective, mutually beneficial relationships.

Yes / 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. 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. 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 underresearched groups of people with dementia, who are likely to have their own distinct perceptions of living well. / Alzheimer’s Society (grant number 348 (AS-PR2–16-001)). The University of Exeter is the sponsor of this study.

Yes / Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial.

Yes / Current policy emphasises the importance of 'living well' with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1-0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

Yes / The Self-Regulation Model (SRM) identifies that the beliefs people hold about an illness can influence their responses to that illness. Although there are generic measures of illness representations, there is a need for a brief tailored measure to use with people with dementia. The aim of this study was to develop and validate a brief measure called the Representations and Adjustment to Dementia Index (RADIX). The RADIX contains questions on the SRM elements: Identity, Cause, Timeline, Control, and Consequences. The RADIX validation was conducted with a sample of 385 community-dwelling people with mild to moderate dementia who were taking part in the IDEAL cohort study. Test-retest reliability was conducted over a 4-week period with a separate sample of 20 people with dementia. The validation process resulted in a reduction in the number of items in the Timeline, Control, and Consequences items. The resulting RADIX demonstrated good acceptability, internal reliability, and test-retest reliability. All the RADIX items had low missing data, indicating good acceptability. The factor analysis confirmed that the Consequences items formed two subscales (practical and emotional consequences) that had Cronbach's α of 8 and 0.91 respectively. Test-retest reliability indicated that the Identity, Timeline, and Control items had moderate reliability and the practical and emotional consequences scales had good reliability. The RADIX demonstrates acceptable psychometric properties, proves to be a useful measure for exploring people's beliefs about dementia, and could aid the provision of tailored information and support to people with dementia.

Yes / The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia - like our participants - being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.

Yes / It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders' value. We attained consensus from over 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured. We extracted self-reported OMIs from trials, reviews and reports of instrument development. Searches were undertaken in the ALOIS database, Medline, PsycINFO, CINAHL, socINDEX and COSMIN database. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency and responsiveness. We held a co-research workshop involving people living with dementia and care partners in order to ratify the findings. In total 347 OMIs were located from 354 sources. Of these 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the COS items, and no OMIs proceeded to further assessment. The 'best' available OMI is the Engagement and Independence in Dementia Questionnaire (EID-Q). This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons. / This study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation (UKRI).

Yes / How people understand and adapt to living with dementia may influence well-being. Leventhal’s Common Sense Model (CSM) of Self-Regulation provides a theoretical basis for exploring this process. We used cross-sectional and longitudinal data from 1,109 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort. We elicited dementia representations (DRs) using the Representations and Adjustment to Dementia Index (RADIX), a validated measure based on the CSM, identified groups sharing distinct DR profiles, and explored predictors of group membership and associations with well-being, and whether problem-focused coping played a mediating role in these associations. We identified four DR classes: people who see the condition as a disease and adopt a diagnostic label; people who see the condition as a disease but refer to symptoms rather than a diagnostic label; those who see the condition as part of aging; and those who are unsure how to make sense of the condition. A fifth group did not acknowledge any difficulties. “Disease” representations were associated with better cognition and younger age, while “aging” and “no problem” representations were associated with better mood and well-being. The association with well-being remained stable over 24 months. There was limited partial support for a mediating role of problem-focused coping. Variations in DRs may reflect individual differences in the psychological processes involved in adjusting to dementia. DRs provide a framework for personalizing and tailoring both communications about dementia and interventions aimed at supporting people in coping with dementia. There is a need to debate what constitutes a positive DR and how its development might be encouraged.