Yes / This article describes the work of the ‘Action on Living Well: Asking You’ group – an involvement group of people with dementia and carers attached to the IDEAL research study. The article describes the work of the group, the methods that have helped them to stay involved and people’s perspectives on their experiences of being involved and the impact it has had, for themselves and others. The article has been written following a reflective piece of work with the ‘Action on Living Well: Asking You’ group to review and remember the work of the past four years. An accompanying film brings to life the work and activities of the group, available at www.idealproject.org.uk/mclass/ / Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2 ‘Improving the experience of dementia and enhancing active life: living well with dementia’

Yes / Being a family caregiver, and in particular giving care to someone with dementia, impacts upon mental and physical health, and potentially reduces the ability of caregivers to ‘live well’. This paper examines whether three key psychological resources, self-efficacy, optimism and self-esteem, are associated with better outcomes for caregivers of people with dementia. Design and Participants Caregivers of 1283 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) project responded to measures of selfefficacy, optimism and self-esteem, and ‘living well’ (quality of life, life satisfaction and well-being). Multivariate linear regression was used to examine the association between psychological resources and ‘living well’. Results Self-efficacy, optimism and self-esteem were all independently associated with better capability to ‘live well’ for caregivers. This association persisted when accounting for a number of potential confounding variables (age group, sex, and hours of caregiving per day). Conclusions Low self-efficacy, optimism and self-esteem might present a risk of poor outcomes for caregivers of people with dementia. These findings encourage us to consider how new or established interventions might increase the psychological resilience of caregivers.

Yes / The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed. / The author(s) declare financial support was received for the research, authorship, and/or publication of this article. The IDEAL study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) through grant ES/L001853/2. m. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001.

Background: Children who enter foster care usually do so because of maltreatment by their birth families. Early adversity such as this is associated with many negative outcomes, including disturbances of attachment and mental health in childhood and throughout the lifespan. Young children (under 5) are particularly at risk due to maltreatment rates being highest in this age range, and because of the vital brain development that occurs during this time. Improving the quality of existing relationships for young children is the most cost effective way to improve mental health outcomes. It is important that research investigates which relational and psychological variables that exist within the foster carer-child relationship may be protective against developing negative mental health outcomes, so as to inform carer training and future interventions for this vulnerable group. Aims: The aims of this research project were twofold. The first aim was to systematically review the existing literature on links between foster carer psychological variables (such as commitment to their foster child), and/or child psychological variables (such as their attachment style), and the mental health outcomes of children in foster care. The second aim was to investigate whether foster carer acceptance, commitment, awareness of influence and reflective functioning (RF) predict the mental health outcomes of Scottish preschool aged children who are looked after in foster care. Method: A systematic review of the existing literature was undertaken to address the first aim. The search strategy resulted in 12 quantitative studies that investigated links between child or carer psychological variables and child mental health outcomes. An empirical study of 179 pre-school aged children in foster care in Scotland was carried out to address the second aim. Participants were taking part in a wider RCT of a novel intervention to improve outcomes and permanency decisions for children in foster care. Foster carer acceptance, commitment, and awareness of influence was assessed using the This Is My Baby Interview, and scores of RF were coded from the transcripts of this interview using a computer-based algorithm. Child mental health information was gathered using the Infant Toddler Social Emotional Assessment. Data was gathered at 2 time points; baseline assessments occurred around 4 weeks after entry to care, and follow-up assessments were carried out a year later. Results: The systematic review found good evidence that foster child attachment security is linked to more positive mental health outcomes. It also found some evidence suggesting that foster carer psychological variables such as commitment and quality of caregiving also relate to child mental health outcomes, but this research is in its infancy and it is therefore difficult to draw firm conclusions around this. The results of the empirical study showed that carer commitment and awareness of influence predict child competence at baseline, and RF predicts internalising and externalising problems at follow up. No predictive relationships were found between carer variables and child mental health over time. Conclusion: The results from both studies suggest that carer psychological variables such as commitment to their foster child may relate to child mental health development. These results have implications in terms of foster carer training, and for intervention development for this vulnerable population. This research is however in its infancy, and the results suggest a complex picture with regard to carer psychological variables and child mental health. Large-scale high quality longitudinal research is needed to provide a clear understanding of these relationships.

Previous research has indicated the unique contribution that the interaction between looked after children and their foster carers might have on young people’s behaviour, emotional well-being and subsequent placement stability. Furthermore, there may be differences in the way in which young people and their foster carers view a typical family. Despite this, there is a noticeable absence of studies which have specifically explored the foster carer-child relationship, particularly in terms of how their individual perspectives might be negotiated within their interpersonal relationship. The current study therefore aimed to address this gap. Three foster carer-child dyads were recruited from a local Child and Adolescent Mental Health Service, with young people aged between 8 and 16 years. A Personal Construct Psychology (PCP) approach was adopted. Participants each completed an individual interview, facilitated by Perceiver Element Grids (PEGs; Procter, 2002) in which interpersonal construing was explored. Looked after children and their foster carers were then interviewed together to share and discuss their completed PEGs. Interview transcripts were analysed using Thematic Analysis and PCP concepts were used to analyse the interactional processes between young people and their carers. The study highlighted a shared sense of fragmentation across participants’ accounts, with both looked after children and their carers reporting a sense of inauthenticity in the way they negotiated their interpersonal relationships. Differences in the way in which ‘family’ was perceived was also highlighted, with young people expressing a sense of ambivalence regarding their desire to be integrated into their foster family, whilst also retaining a connection to their birth family. These themes were supported in their interactions and co-constructional processes. The findings are discussed in relation to the relevant literature and clinical implications. Methodological limitations and directions for future research are also presented.

Bakgrund: Demenssjukdomar är en av de vanligaste sjukdomarna idag. Beräknat finns det ca 47,5 miljoner människor världen över som har någon typ av demenssjukdom, varav 150 000 personer finns i Sverige. Syfte: Syftet är att beskriva hur anhöriga som vårdar personer med demenssjukdom upplever sitt dagliga liv. Metod: En kvalitativ litteraturöversikt har använts där data har samlats in från kvalitativa studier som sedan analyserats induktivt. Resultat: Anhöriga upplever att det är många negativa känslor involverade i att vara anhörigvårdare, så som stress, depression och att uppleva börda. Dock anser anhöriga att inte allt är negativt. Trots att framtiden kan se mörk ut finns det ändå det som är positivt. Dessa känslor är oftast glädje, kärlek och att de växer som personer. Anhöriga använder sig även av en rad strategier för att underlätta vardagen såsom att göra olika aktiviteter. Slutsats: Det är väldigt påfrestande att vara anhörigvårdare till en person med demenssjukdom. Flera negativa känslor kan uppstå men även positiva känslor kan upplevas. Det krävs kunskap om sig själv som anhörig men även om sjukdomen som personen har som vårdas. / Background: Dementia counts as one of the most common diseases today. Estimated, there are around 47.5 million people worldwide that has some kind of dementia, of which 150 000 persons are in Sweden. Purpose: The aim of the study is to describe relatives caring for persons with dementia are experiencing daily life. Method: A literature review has been used where data has been collected from qualitative studies and later been analyzed inductively. Results: Relatives experience that there are many negative emotions involved when they’re caring for someone with dementia. Emotions such as stress, depression and the feeling of carrying a burden. However, not everything is seen as negative. Although the future may not look so bright, there is still a lot of positive feelings involved. Some of the most common are joy, love, and the feeling of personal growth. Conclusion: It's highly stressful to be a family carer to a person with dementia. Several negative feelings may arise, but also positive emotions will be experienced. It requires knowledge of oneself as a relative but also about the disease that the person is being cared for.

Fifteen million children have been orphaned by AIDS. A growing body of evidence documents impacts of parental deaths on orphans, but little is known about impacts faced by AIDS-orphan carers. This study set out to: (a) investigate physical and mental health outcomes of adults caring for children in Umlazi, a high HIV prevalence township in South Africa; (b) assess whether AIDS-orphan carers face worse outcomes compared to other carers; and, (c) identify risk and protective factors for health. Using a cross-sectional survey, data was gathered from a representative community sample from August 2008 to March 2009 resulting in the largest known study conducted on AIDS-orphan carers to date (n=1599). The majority of carers looked after non-orphaned children (66.85%) followed by AIDS-orphan (22.45%) and other-orphan children (10.69%). Orphan carers had significantly worse general health and functioning, depression, and post-traumatic stress than non-orphan carers but patterns were less clear when orphan carers were disaggregated into AIDS-orphan and other-orphan carers for comparison. This suggests that health interventions might target orphan carers, rather than singling out AIDS-orphan carers. Differences in age, gender, education, economic assets, and source of household income fully accounted for the association between being an orphan carer and poor health. Social policy grants reduced negative health disparities between orphan carers and non-orphan carers. Social support, education, economic assets, food, access to water, and housing were iii also identified as risk and protective co-factors that might reduce orphan carer disparities in health. By highlighting health as a serious issue for orphan carers and identifying risk and protective factors for health, this study offers policy and program insights into how to mitigate negative impacts faced by carers in high HIV prevalence communities facing escalating numbers of orphans.

Antalet anhörigvårdare i Sverige är många. För att de anhöriga ska orka vårda sina närstående 24 timmar om dygnet, sju dagar i veckan behöver det finnas ett stöd. De anhörigstöd som finns varierar från kommun till kommun. Ett anhörigstöd som har utarbetats för att underlätta insatsbehovet är COAT- Carers Outcome Agreement Tool som syftar till att kartlägga anhörigas behov, planera och följa upp anhörigstöd. COAT har en grund i partnerskapsmodellen och i modellen ses den anhörige som experten på situationen runt den närstående. De studier som är gjorda med anhöriga har mycket positiva resultat. Det är få studier gjorda utifrån personalperspektivet därför avsåg vi att undersöka deras individuella erfarenheter utav att använda COAT. Tio stycken kvalitativa intervjuer med personal är utförda i studien och analyserades med hjälp av en innehållsanalys. Fem kategorier trädde fram i analysen och presenteras i resultatet. I kategorierna beskriver vi det som personalen berättat i intervjuerna. Personalen är uteslutande positiva till instrumentet och de anser att det bör användas i större utsträckning. Diskussionen är formad utifrån våra forskningsfrågor och diskuteras med stöd av tidigare forskning. Vi diskuterar olika begrepp och relaterar dem ur personalens synvinkel gentemot den anhörige och dennes familj. / Program: Specialistsjuksköterskeutbildning med inriktning mot distriktssköterska

I Sverige är stroke den tredje vanligaste dödsorsaken och den vanligaste orsaken till funktionsnedsättning bland vuxna människor. Stroke är ingen enhetlig sjukdom utan ett samlingsnamn på den symptombild som utvecklas. Symptomen yttrar sig oftast genom svaghet i armar och ben, förvirring, försämrad balans och talsvårigheter. Rehabiliteringen efter insjuknandet påbörjas redan efter första dygnet på sjukhus och fortsätter sedan i hemmet efter utskrivning. I hemmet är det vanligt att vårdtagarens make/maka eller sambo väljer att bli informell vårdgivare. För att lyckas hantera den nya rollen är det av stor vikt att han/hon får den information och förberedelse som krävs för att kunna vårda den insjuknade. I tidigare forskning upplevdes vårdandet stressigt och tidskrävande vilket delvis kunde bero på brist på information och förberedelse från hälso- och sjukvården. Syftet med arbetet är att beskriva upplevelsen av att vårda sin partner som insjuknat i stroke. Arbetet var en litteraturstudie där kvantitativa och kvalitativa artiklar analyserades enligt Axelssons (2008) modell. Resultatet består av tre huvudteman: En ny livssituation, Ett behov av stöd och En fysisk och känslomässig påverkan samt sju underteman. I artiklarna framkom det att partners upplevde en förändrad livssituation och att rollen som vårdgivare och partner var svår att hantera vilket påverkade relationen. Det ökade ansvaret som kom med vårdrollen krävde mycket energi och den egna tiden var svår att finna. Vänner och familj visade sig vara ett viktigt stöd där ny energi kunde hämtas. Stödet från hälso- och sjukvården uppskattades men upplevdes i de flesta fall otillräcklig. I diskussionen diskuteras sjuksköterskans pedagogiska ansvar och dess funktioner i mötet med närstående. Vidare i diskussionen beskrivs sjuksköterskans förmåga att förmedla trygghet och vilken betydelse det har för hälsan samt belyses behovet av anhörigstöd. / Program: Sjuksköterskeutbildning

Background Dementia has been a global priority for over a decade, with a recognition that it presents a growing challenge for all those directly affected, as well as for health and social care services. For those who are caring for a relative at home, carer burden has been found to be predictive of physical and mental health problems, and can impact on the decision to place a relative in fulltime residential care. Gaining a fuller understanding of factors that impact on caregiver burden may help inform the development of effective interventions for this population. This thesis comprises a systematic review of the literature on individual behavioural and psychological symptoms of dementia (BPSD) and their impact on carer burden, a cross-sectional study of one hundred and ten dementia caregivers, exploring the impact of executive functioning deficits, and potential mediating mechanisms, on carer burden and positive gain, and a development and feasibility study of an Acceptance and Commitment Therapy (ACT) group intervention for dementia caregivers. Systematic Review Twenty-one studies measured the association between at least one individual symptom, or symptom cluster, and carer burden, and are included in the review. All studies found at least one symptom to be significantly associated with burden. However, due to the heterogeneity of studies in this field, there was insufficient evidence to establish whether any symptoms are more closely associated than others. Issues regarding the conceptualisation of burden and measurement of BPSD are highlighted and suggestions for addressing this in future studies proposed. Method One hundred and ten dementia caregivers completed five self-report questionnaires as part of a cross-sectional design, aiming to explore the role of executive functioning deficits, dementia management strategies and experiential avoidance in 2 the development of carer burden and positive gain. Drawing on these findings, a group intervention, based on ACT, was developed and delivered to twenty-three dementia caregivers. Data on attendance, attrition and qualitative feedback was collected as an indication of acceptability, and a quasi-experimental design, involving four pre, post and follow-up measures was employed to provide preliminary data on effectiveness. The measures used in both studies were the Dysexecutive Questionnaire (DEX) (study 1 only), Zarit Burden Interview (ZBI), Positive Aspects of Caregiving Questionnaire (PAC), Dementia Management Strategies Scale (DMSS) and Experiential Avoidance in Caregiving Questionnaire (EACQ). Results & Conclusions In study one, executive functioning deficits were found to account for most variance in burden. The use of negative management strategies and Active Avoidant Behaviour (a subscale of the EACQ), were also associated with higher levels of burden, while positive management strategies were associated with positive gain. The results suggest that management strategies and experiential avoidance could be potential mediating mechanisms in the development of carer burden, and so were targeted in the ACT group intervention in study two. Findings from study two indicate that the group intervention was feasible and acceptable to caregivers, with subjective change reported in understanding of behavioural changes in the care-recipient, ability to handle negative emotions and valued living. Suggestions are made regarding alternative outcome measures for future studies in order to capture participants’ experience more fully, as there was little statistically significant change in this study. Suggestions are also made regarding future directions for the intervention.