Objective: The aim of the study is to identify the degree of association between mood, activity engagement, activity location, and social interaction during everyday life of people with dementia (PwD) living in long-term care facilities. Method: An observational study using momentary assessments was conducted. For all 115 participants, 84 momentary assessments of mood, engagement in activity, location during activity, and social interaction were carried out by a researcher using the tablet-based Maastricht Electronic Daily Life Observation-tool. Results: A total of 9660 momentary assessments were completed. The mean age of the 115 participants was 84 and most (75%) were women. A negative, neutral, or positive mood was recorded during 2%, 25%, and 73% of the observations, respectively. Positive mood was associated with engagement in activities, doing activities outside, and social interaction. The type of activity was less important for mood than the fact that PwD were engaged in an activity. Low mood was evident when PwD attempted to have social interaction but received no response.

In this article we address how relatives of people with frontal-variant frontotemporal dementia (fvFTD) experience the illness and how it impacts their lives. We interviewed 6 participants and carried out interpretative phenomenological analysis. We report on 11 themes that reflect distinctive challenges. Five themes relate to witnessing bizarre and strange changes: changed appetites and drives, loss of planning ability, loss of inhibition leading to social embarrassment, risky behavior, and communication problems. Four relate to managing these changes and two to the impact on the person and his or her relationships. Relatives must live with unusual changes in the person with fvFTD and the stigma this carries in social settings. They learn to act assertively for their relatives and put effort into promoting quality of life, using strategies adapted for fvFTD. Relatives grieve the loss of the person with fvFTD and their mutual relationship, but nonetheless find sources of solace and hope.

This article presents findings from an experiential learning exercise in which 34 care practitioners enrolled on a part-time BSc programme in Dementia Studies were asked to identify their own favourite music, and then to investigate the musical preferences of one of their clients with dementia. For both groups, practitioners and clients, three dominant themes influencing choice of music emerged: loving relationships; significant life events and places, and a sense of physical enjoyment. This exercise enabled the group of practitioners involved to identify commonalities between their own musical memories and those of their clients with dementia. They also uncovered considerable amount of new information about their client¿s life histories. On this basis they were able to make a number of new recommendations for improving care practice.

Living well with dementia is promoted nationally and internationally (Department of Health, 2009: Global Action Against Dementia, 2013). UK health policy recommends post-diagnostic support to enable people to live well in the community for as long as possible (Department of Health, 2015; NHS England, 2017; Scottish Government, 2017; Welsh Government, 2017). This is important given that a cure for dementia is not imminent. A growing evidence base demonstrates that psychosocial interventions can benefit people with mild to moderate dementia, by improving cognition, performance in valued activities or daily living skills, maintaining quality of life or carer coping. (Clare et al., 2011;2017; Graff et al.,2006,2007; Streater et al.,2016). Occupational therapists offer interventions to people living with mild to moderate dementia and family carers (Swinson et al.,2016;Streater et al.,2016;Yuill and Hollis,2011). The National Institute for Clinical Excellence and Social Care Institute for Excellence (2006) recommended occupational therapists provide skills training for activities of daily living. Also, the Memory Services National Accreditation Programme recommends people with dementia have access to occupational therapy and other psychosocial interventions such as reminiscence, life story work or cognitive stimulation therapy, for the cognitive, emotional, occupational and functional aspects of dementia (Hodge et al.,2016). Such interventions can be delivered by occupational therapists. The focus on the benefits of non-pharmacological interventions provides occupational therapists with an opportunity, to deliver services that improve lives and the experience of dementia (Collier and Pool, 2016). Understanding what may influence uptake of such interventions is important if people with dementia and their carers are to benefit from what occupational therapists can offer. Yet what supports the uptake of such interventions, specifically by people with mild to moderate dementia and their family carers, living in the community is poorly understood and limited research about this topic exists. ‘Uptake’, in this paper, is defined as initial acceptance of an offer, of intervention, support or services, rather than continued engagement or adherence to an intervention over time.

Objectives: Younger people with dementia face significant challenges in gaining access to age- and needs-appropriate support. In this paper, we tell the story so far, of the ANGELA Research Project, which seeks to develop guidance to improve the ‘dementia journey’ for younger people with dementia and their families/supporters. Design: Our story is one of a research group aiming to conduct clinically relevant research to achieve positive changes for younger people with dementia. Our research journey will last 3 years and is now almost one year in. In this article, we aim to convey some of the decisions we have made to date, and what lies ahead for a successful implementation. Methods: So far, we have been forming as a research group and turning our initial ideas into plans that will work in the real world. Our methods for ensuring all elements of the project work well have involved internal and external aspects and processes. These have included involvement with and feedback from experts-by-experience and an advisory panel. Results: To date we have generated a protocol for all the key elements and have launched the Improving Support and Service Use Survey; a national survey gathering evidence from younger people with dementia and their supporters. In this article, we present how we aim to move forward to bring positive real-life changes to the lives of those affected by young onset dementia. Conclusions: There is a cautiously happy ending to this first phase, as we are now collecting data. However, the judgement of whether the Angela Project is a success overall will depend on whether it makes a difference at its conclusion to younger people with dementia and their supporters.

This study assessed the effects of a person-centred care based psycho-educational intervention on direct care workers’ communicative behaviours with people with dementia living in aged care facilities. An experimental study with a pre-posttest control group design was conducted in four aged care facilities. Two experimental facilities received an eight-weekly psycho-educational intervention aiming to develop workers’ knowledge about dementia, person-centred care competences and tools for stress management; control facilities received an education-only, with no support to deal with stress. A total of 332 morning care sessions, involving fifty-six direct care workers (female, mean age 44.72±9.02), were video-recorded before and two weeks after the intervention The frequency and duration of a list of verbal and non-verbal communicative behaviours were analysed. Within the experimental group there was a positive change from pre to post-test on the frequency of all workers’ communicative behaviours. Significant treatment effects in favour of the experimental group were obtained for the frequency of inform (p<0.01, ƞ2partial=0.09) and laugh (p<0.01, ƞ2 partial=0.18). Differences between groups emerged mainly in relation to non-verbal communicative behaviours. The findings suggest that a person-centred care based psycho-educational intervention can positively affect the direct care workers’ communicative behaviours with residents with dementia. Further research is required to determine the extent of the benefits of this approach.

There are no disease-modifying treatments for dementia. There is also no consensus on disease modifying outcomes. We aimed to produce the first evidence-based consensus on core outcome measures for trials of disease modification in mild-to-moderate dementia. We defined disease-modification interventions as those aiming to change the underlying pathology. We systematically searched electronic databases and previous systematic reviews for published and ongoing trials of disease-modifying treatments in mild-to-moderate dementia. We included 149/22,918 of the references found; with 81 outcome measures from 125 trials. Trials involved participants with Alzheimer's disease (AD) alone (n = 111), or AD and mild cognitive impairment (n = 8) and three vascular dementia. We divided outcomes by the domain measured (cognition, activities of daily living, biological markers, neuropsychiatric symptoms, quality of life, global). We calculated the number of trials and of participants using each outcome. We detailed psychometric properties of each outcome. We sought the views of people living with dementia and family carers in three cities through Alzheimer's society focus groups. Attendees at a consensus conference (experts in dementia research, disease-modification and harmonisation measures) decided on the core set of outcomes using these results. Recommended core outcomes were cognition as the fundamental deficit in dementia and to indicate disease modification, serial structural MRIs. Cognition should be measured by Mini Mental State Examination or Alzheimer's Disease Assessment Scale-Cognitive Subscale. MRIs would be optional for patients. We also made recommendations for measuring important, but non-core domains which may not change despite disease modification. Most trials were about AD. Specific instruments may be superseded. We searched one database for psychometric properties. This is the first review to identify the 81 outcome measures the research community uses for disease-modifying trials in mild-to-moderate dementia. Our recommendations will facilitate designing, comparing and meta-analysing disease modification trials in mild-to-moderate dementia, increasing their value.

The concept of the stiff upper lip stands as a cultural metaphor for the repression and figurative ¿biting back¿ of traumatic experience, particularly in military contexts. For men born in the first half of the 20th century, maintaining a stiff upper lip involved the ability to exert high levels of cognitive control over the subjective, visceral and emotional domains of experience. In the most common forms of dementia, which affect at least one in five men now in their 80s and 90s, this cognitive control is increasingly lost. One result is that, with the onset of dementia, men who have in the intervening years maintained a relative silence about their wartime experiences begin to disclose detailed memories of such events, in some cases for the first time. This article draws on narrative biographical data from three men with late-onset dementia who make extensive reference to their experience of war. The narratives of Sid, Leonard and Nelson are used to explore aspects of collective memory of the two World Wars, and the socially constructed masculinities imposed on men who grew up and came of age during those decades. The findings show that in spite of their difficulties with short term memory, people with dementia can contribute rich data to cultural studies research. Some aspects of the narratives discussed here may also be considered to work along the line of the counter-hegemonic, offering insights into lived experiences of war that have been elided in popular culture in the post-War years.

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.

This paper is concerned with a variety of contemporary representations of dementia in both mainstream made-for-box-office cinema and in TV soap and drama. Such representations frequently draw on familiar tropes of global memory loss, violence and aggression, extreme dependency on heroic carers, catastrophic prognosis, and early death. Whilst such narrative devices may be excusable to some extent in film made for purposes of entertainment, the producers have considerable responsibility for public awareness and understandings of dementia, which, we would argue, should be discharged in a socially responsible way, rather than purely in order to achieve dramatic effect. Moreover, it has been widely argued in recent years (eg Alexander et al 2005) that film of this nature can be used ¿as it stands¿ in the education of health and social care practitioners. Instead, we would argue that students and practitioners need to learn the basic principles of representation theory, in order to understand and critique how film works to influence and socially construct views of health, illness and regimes of truth around them, paying central attention always to the question of whose interests are served by the representation in question.